Looking at the photo it looks a bit short on tinsel and lights, I'm sure there seemed more last year, maybe I'll just rearrange things a bit in the middle.
Monday 20 December 2010
To prove I'm not scrooge
Looking at the photo it looks a bit short on tinsel and lights, I'm sure there seemed more last year, maybe I'll just rearrange things a bit in the middle.
Saturday 18 December 2010
2010 - 18th December - Getting Back to "Normal".
Thought I'd better put something here now I'm up and able again, finally.
The bridge came out on Monday, painlesslye, shortly after which, Fatty Arbuckle decided it would be a good time to start reminding me how to empty a bag, instead of just looking at it wondering if there was any point having one stuck there, doing nothing.
He's been operating very well ever since I'm happy to say. Who'd have thought I'd be pleased to have a permanent, huge, ugly stoma in the middle of my belly rendering some of the nice new (now roomy) size 10 clothes I bought useless. The "horror" of the painful chemo weeks is almost just a memory. The hair on my legs, though sparse and patchy continues to grow back - WHY? The hair on my head is falling out more slowly and I think I see fluffy new baby hairs at my fringe - or this could just be where hair has snapped off, but my hair is so sparse, with bald patches above my ears it won't take many more sessions before it's all gone, or needs shaving. I should get the length cut now but really can't be bothered to organise that. I was too weak the Saturday after surgery for the booked appointment I had, I couldn't sit up in a chair long enough so missed that opportunity.
Mum and Peter came to visit on Saturday and brought food with them and stayed for several hours. I didn't really want to be left alone, after having company all day, but I was tired. Karys came on Sunday and Beckie and we watched some Peter Kay which luckily didn't cause too much pain, but I did spend most of it with a nervous hand over Fatty holding everything in. For Karys that meant a bus ride and then a 2 mile walk in frozen snow :o( and made me feel crap that I wasn't able to go and pick her up from the bus stop but she didn't need to walk back at least, getting a lift from Aunty.
Monday Mike came after I got back from having the bridge out - and having a look at diffrent bags - things don't seem to have changed that much to be honest in the 3 years without a stoma.
I said to sis "it's not really as much fun as shoe shopping is it?" as Sarah got different boxes down for me to look at. In the end, because the stoma is about 3 times bigger than my last one, I opted for a two piece - the output is thicker so it's nice to be able to change the bag and clean things properly every day without ripping glue off my belly every day. The Salts base plate I'm trying has an extra large flange (stifles giggles at the word flange STILL) made of a sort of fabric, like micropore tape almost but more webbed and there's no way it's moving but makes me feel I've got extra protection against a hernia. The Salts bags are still as noisy as wearing Walkers crisps packets and I really don't like the closure compared to my old faithful one piece but once Fatty has shrunk back enough to use a smaller size I'm sure I'll go back to those.
I got sent some samples of the tiniest closed bags I've ever seen, lord knows how I'm supposed to get one of those round Fatty, they got my address so horrendously wrong (over the phone order by hospital) wrong, including the road name, village and postcode. Fair play to Royal Mail for finding me! They do have a nice flat top which protrudes less under clothing. I think I might go back to my old trick of cutting down a tight fitting lyra vest to wear like a corset to flatten everything down under my other clothes. It tends to smooth things out and make less clothes redundant. I don't care that people know I have a stoma, but who wants to look anything other than normal with flattering clothes?
Nothing has moved from the redundant portion of descending colon and j-pouch - which is good, physically, but psychologically, I know it's there and at some point they'll have to put a tube into the mucus side of my stoma and flush it out - Sarah says I'll need to be "quite strong and well" to go through that process as it will cause cramping....naively I'd thought I'd have an enema...but thinking about it they are hell so I'm not so bothered about waiting. I asked why on earth they hadn't given me bowel prep since it was planned surgery. She said she didn't think I'd have been able to cope with even bowel prep, I was just too ill and weak. It choked me a bit to think that after all the preps I've had over the last 4 years that I was so ill, it was a better option to leave the waste inside? I don't think I ever thought I was in real danger at the time, I was too exhausted and upset most of the time. Probably just as well?
My usual district nurse came to see me on Thursday and sorted out my repeat prescription for HRT and my "crack" patches, I'm alright for crack lollies - don't like using those. She's going to chase up my referral to the hospice after Christmas and I really hope they'll be able to help with the pain. Thursday night some friends came over and brought a stack of DVDs to watch so I don't think even festive TV will get to me, entertainment wise I've plenty to keep me occupied. I've had quite a few phone calls too which break the day up a bit, even though I've not much to tell, it makes the days a little brighter.
Yesterday - Friday, finally time to take the two sutures out (I still can see some white dissolving ones but they don't seem to be causing a problem at the moment). Sarah had warned me to take some pain relief, which I forgot. As it turned out I didn't feel a thing! Either the Fentanyl works for stitch removal or the peristomal skin has no feeling, either way I was thrilled. The horrible snatching sound the stitches make against the tiny curved scalpel is horrible, a bit like nails on a chalkboard, I really don't like it, every time it slips and doesn't cut through. Obviously Fatty, being a delicate thing, bled a bit just at the slightest touch of the plastic tweezers, despite my efforts to cover and protect him with a dry wipe - pathetic show on his part I thought. So I'm stocked up with more base plates and bags for over Christmas and New Year and we'll hope for more shrinkage. For underclothing bulges, less is more. What's the point in being a size 8-10 at 40 and not being able to make the most of looking like a stick?
So that's where I'm at. Started back on taking my usual vitamins and supplements (B complex, selenium, choline inositol, fish oils, CQ10, I think that's about it....) this week and also managed to cook some nut loaf which was SO tasty I kept picking at it all evening and spent a night awake emptying air out of the bag - Fatty was in shock at the volume of food and me eating brocolli. Subsequent meals haven't produced as much air so hopefully I'll be able to increase the "windy" veg without too much drama. I'm still on a very basic bread, soup, crumpets, fruit, mash diet but starting to increase veg now things are working properly. Fibre means - shorter nights, fuller bags and many trips to the toilet, veg means health. It's a case of weaning slowly and eating whatever I fancy still, but I think I felt hungry yesterday - bit weird, not had that sensation for months and months, but I took notice and kept eating.
Congratulations to Tony for passing his bike test and to Carole for getting her stitches out.
I can't have a bath since it's so horribly scale damaged it's not been connected to water when I had central heating installed (bathroom revamp was due but cancer got in the way) so it's just a large shower tray. I quite fancy a large bubble bath myself (with stupid plastic bath guard on my arm of course) it's less effort than standing!
The bridge came out on Monday, painlesslye, shortly after which, Fatty Arbuckle decided it would be a good time to start reminding me how to empty a bag, instead of just looking at it wondering if there was any point having one stuck there, doing nothing.
He's been operating very well ever since I'm happy to say. Who'd have thought I'd be pleased to have a permanent, huge, ugly stoma in the middle of my belly rendering some of the nice new (now roomy) size 10 clothes I bought useless. The "horror" of the painful chemo weeks is almost just a memory. The hair on my legs, though sparse and patchy continues to grow back - WHY? The hair on my head is falling out more slowly and I think I see fluffy new baby hairs at my fringe - or this could just be where hair has snapped off, but my hair is so sparse, with bald patches above my ears it won't take many more sessions before it's all gone, or needs shaving. I should get the length cut now but really can't be bothered to organise that. I was too weak the Saturday after surgery for the booked appointment I had, I couldn't sit up in a chair long enough so missed that opportunity.
Mum and Peter came to visit on Saturday and brought food with them and stayed for several hours. I didn't really want to be left alone, after having company all day, but I was tired. Karys came on Sunday and Beckie and we watched some Peter Kay which luckily didn't cause too much pain, but I did spend most of it with a nervous hand over Fatty holding everything in. For Karys that meant a bus ride and then a 2 mile walk in frozen snow :o( and made me feel crap that I wasn't able to go and pick her up from the bus stop but she didn't need to walk back at least, getting a lift from Aunty.
Monday Mike came after I got back from having the bridge out - and having a look at diffrent bags - things don't seem to have changed that much to be honest in the 3 years without a stoma.
I said to sis "it's not really as much fun as shoe shopping is it?" as Sarah got different boxes down for me to look at. In the end, because the stoma is about 3 times bigger than my last one, I opted for a two piece - the output is thicker so it's nice to be able to change the bag and clean things properly every day without ripping glue off my belly every day. The Salts base plate I'm trying has an extra large flange (stifles giggles at the word flange STILL) made of a sort of fabric, like micropore tape almost but more webbed and there's no way it's moving but makes me feel I've got extra protection against a hernia. The Salts bags are still as noisy as wearing Walkers crisps packets and I really don't like the closure compared to my old faithful one piece but once Fatty has shrunk back enough to use a smaller size I'm sure I'll go back to those.
I got sent some samples of the tiniest closed bags I've ever seen, lord knows how I'm supposed to get one of those round Fatty, they got my address so horrendously wrong (over the phone order by hospital) wrong, including the road name, village and postcode. Fair play to Royal Mail for finding me! They do have a nice flat top which protrudes less under clothing. I think I might go back to my old trick of cutting down a tight fitting lyra vest to wear like a corset to flatten everything down under my other clothes. It tends to smooth things out and make less clothes redundant. I don't care that people know I have a stoma, but who wants to look anything other than normal with flattering clothes?
Nothing has moved from the redundant portion of descending colon and j-pouch - which is good, physically, but psychologically, I know it's there and at some point they'll have to put a tube into the mucus side of my stoma and flush it out - Sarah says I'll need to be "quite strong and well" to go through that process as it will cause cramping....naively I'd thought I'd have an enema...but thinking about it they are hell so I'm not so bothered about waiting. I asked why on earth they hadn't given me bowel prep since it was planned surgery. She said she didn't think I'd have been able to cope with even bowel prep, I was just too ill and weak. It choked me a bit to think that after all the preps I've had over the last 4 years that I was so ill, it was a better option to leave the waste inside? I don't think I ever thought I was in real danger at the time, I was too exhausted and upset most of the time. Probably just as well?
My usual district nurse came to see me on Thursday and sorted out my repeat prescription for HRT and my "crack" patches, I'm alright for crack lollies - don't like using those. She's going to chase up my referral to the hospice after Christmas and I really hope they'll be able to help with the pain. Thursday night some friends came over and brought a stack of DVDs to watch so I don't think even festive TV will get to me, entertainment wise I've plenty to keep me occupied. I've had quite a few phone calls too which break the day up a bit, even though I've not much to tell, it makes the days a little brighter.
Yesterday - Friday, finally time to take the two sutures out (I still can see some white dissolving ones but they don't seem to be causing a problem at the moment). Sarah had warned me to take some pain relief, which I forgot. As it turned out I didn't feel a thing! Either the Fentanyl works for stitch removal or the peristomal skin has no feeling, either way I was thrilled. The horrible snatching sound the stitches make against the tiny curved scalpel is horrible, a bit like nails on a chalkboard, I really don't like it, every time it slips and doesn't cut through. Obviously Fatty, being a delicate thing, bled a bit just at the slightest touch of the plastic tweezers, despite my efforts to cover and protect him with a dry wipe - pathetic show on his part I thought. So I'm stocked up with more base plates and bags for over Christmas and New Year and we'll hope for more shrinkage. For underclothing bulges, less is more. What's the point in being a size 8-10 at 40 and not being able to make the most of looking like a stick?
So that's where I'm at. Started back on taking my usual vitamins and supplements (B complex, selenium, choline inositol, fish oils, CQ10, I think that's about it....) this week and also managed to cook some nut loaf which was SO tasty I kept picking at it all evening and spent a night awake emptying air out of the bag - Fatty was in shock at the volume of food and me eating brocolli. Subsequent meals haven't produced as much air so hopefully I'll be able to increase the "windy" veg without too much drama. I'm still on a very basic bread, soup, crumpets, fruit, mash diet but starting to increase veg now things are working properly. Fibre means - shorter nights, fuller bags and many trips to the toilet, veg means health. It's a case of weaning slowly and eating whatever I fancy still, but I think I felt hungry yesterday - bit weird, not had that sensation for months and months, but I took notice and kept eating.
Congratulations to Tony for passing his bike test and to Carole for getting her stitches out.
I can't have a bath since it's so horribly scale damaged it's not been connected to water when I had central heating installed (bathroom revamp was due but cancer got in the way) so it's just a large shower tray. I quite fancy a large bubble bath myself (with stupid plastic bath guard on my arm of course) it's less effort than standing!
Thursday 9 December 2010
2010 -8th December - Discharged Again
Well against all the odds I've escaped alive.
I had my op on Monday morning and I was very pleased to find he'd not had to open up the old scar, just a brand new rather large swollen mess of a stoma with a plastic "bridge" to stop it falling back into my belly where it belongs.
I've crhistened it Fatty Arbuckle. It's not a nice neat spout like the ileostomy, it's currently a swollen blobby mess which only seems to want to produce watery blood at the moment and nothing else. I've had so many issues with the food or lack of, to the point that I ate breakfast and lunch on Tuesday and no meals after breakfast Wednesday at the hospital. I'm supposed to be eating regularly so things keep moving. Not to mention I am in dire need of protein to heal after surgery, not to mention the ongoing weightloss. I haven't weight this little since i was 17 and on the dole existing on one meal a day through poverty being on a YTS. I still thought things might have started moving by now though.
It was the second time I've had an epidural, the first being my big op to remove the cancer but that was put in whilst I was under anaesthetic. This time I had to sit on the trolley and sit very still whie they put the cannula in my back. I felt him feeling every nobbly bone until he found the right place. I was so cold, it was a relief to feel drowsy and I don't remember much about recovery - except being taken there first to be admitted to theatre and talking to the staff member who was going to be in there passing instruments - she'd had breast cancer. I'm never sure what to say to people when they start that conversation with me, am I supposed to say "I'm so sorry" or feeel better that I'm not alone - except she's working and no sign of disease and I'm having palliative treatment and an emergency op which nobody expected. I assume she isn't incontinent or in constant pain wearing synthetic opioid patches? She was lovely, don't get me wrong, but I know other people have cancer, it doesn't make me feel better about my situation.
They took biopsies from the site of the fistula, but regardless of what they show it wont change a thing. If there is cancer there, or not they won't operate or change my treatment. I will just have chemo and hope it slows things down or shrinks them. That's all I've been offered.
Sarah, one of my stoma nurses came to see me on Tuesday and changed my bag, the skin was so tender around one side of it, the skin well away from the wound that I couldn't bear anyone to touch me there, I had to do the peeling myself but didn't feel strong enough to do the whole thing myself, having only an hour and a half sleep the night after surgery. She came again on Wednesday to watch me change it myself. My abdomen was a bit less tender, but still painful to touch. It was surprisingly easy, even with the bridge which is a rod with a T at each end. That will come out on Monday and the two sutures a couple of days later.
The surgical team came to see me daily (twice since I was only in two days afterwards) and one of the A Team examined me, i.e. had a look at the stoma, and had a feel of the area around it, I winced a lot when he caught the tender part. He said he was sorry, but he had to make me feel like I was in hospital since I was looking far too comfortable and well. (This was said with a smile and I did get his sense of humour - I liked him).
My new surgeon came to see me on Wednesday morning as well, urging me again to make sure I went home as soon as I felt I could cope - he had impressed this upon me and the stoma care team before the op as he seemed very concerned that I might pick up another infection. It may seem too soon, just 2 days post surgery to be alone at home but his concern for my health and recovery time made me feel much safer than being kept in longer to starve and become more malnourished. It wasn't a case of emptying my bed, he had genuine concern in his face and his tone. Besides, I've had 9 months experience with a stoma, it's not like I don't know what I'm doing or have to overcome the initial shock of dealing with having part of my insides hanging out my body for all to see (they don't, people don't like looking at that kind of thing). Right now I'm using the same bags as before but I'm keen to try different, newer ones. Until it gets working properly I won't know if I'll have to have a 2 part or a drainable bag. I don't really mind which to be honest, a two part does make skin care somewhat easier once it's settled in size. (This part is obviously for those who have a stoma and may find this bit interesting). The Apeel spray remover is still a favourite I'm pleased to see and now I have 3 pairs of super sharp curved nail scissors for cutting out (currently cutting to 50mm, ouch!).
All the nurses were nice, not as chatty as 7a, they just seemed to have more time up there, and even sent their love via Sarah who passed the message on. The tea ladies were also alright, apart from one.
"Do you want a drink?"
"Do you have any soya milk?"
"NO"
"Oh, no thank you then."
Another shift - same conversation except it was "No, I'll call and get you some" - just the same as the lovely lady in 7a who was my favourite. She couldn't understand why the other woman didn't do it, "drinking water all day is just boring!" and the other shift also didn't have any issues, even asked on my last day if I'd like to take the rest home with me. I didn't since it was opened three days by then and due for the bin.
This particular tea lady/food monitor as I liked to call her just seemed to dislike me. How I don't know, I was laid up post surgery minding my own business. Just because I don't drink cow's milk and she was unprepared to allow me to drink anything other than water, why did SHE have a problem?.
One day she shoved a menu card in my face without saying anything, it had been filled in by someone who'd gone home.
"What do I need to do with this?"
"Tell me what you want"
"Oh, I see, I'm vegan, so I don't mind what but a vegan meal please, I imagine you'll have to chase the kitchen, they seem to struggle with vegan meals"
Onto the next two patients in my bay:
"Hello sweetheart, what would you like to eat?" (Sorry WHAT, I get silence and then "tell me what you want" and attitude over soya milk. Because I've had surgery and what I need is to feel more miserable.
Becky witnessed a little of her "treat the vegan like shit on my shoe, bend over backwards to be nice to the others".
Today Fatty started to produce more than just watery blood I'm relieved to see. I had some bleeding leaking under the stick wafer part of the bag so had to do another change this afternoon, I was only upstairs for about 15 minutes and I went to the loo while I was up there. Still shaky sitting upright and trying to get the bag under the bulge of swollen abdomen and the bridge is rather tricky. I remember my first bag change which I undertook in hospital on day 3 by carrying my urine bag, wound drain bag and drip stand with me to the bathroom. I was worn out by the time I'd done that and sat on the toilet for about an hour reading instructions, measuring and cutting out two bags until I thought I'd got the size and shape right. I was in agony afterwards. The nurses were shocked to find I'd done this - "why didn't you ring the bell and ask us to change it?" but I'd never considered asking for help, it was my body, I had to do it home so why not now. I'd not even had a supervised change at this point which I think is why they were so surprised. But that's how I deal with things - head on.
I'm still very tired and sore, my left side is very swollen and tender which I know will go down, after two surgeries on my abdomen I'm fairly au fait with the healing process. I got into a very cold bed, I don't know why my room gets cold so fast after the heating goes off at night - I was under a blanket in the living room and didn't realise it had gone off. I couldn't face taking all my top clothes off and just changed into pyjama bottoms and dived under my feather duvet, head and all until I warmed up. I think I must have been asleep before midnight and the radio woke me briefly at 8, then the district nurse at 9 with a call to say she'd be here in the morning sometime.
Before discharge a caribbean nurse had come to shout at me as if I was the deaf 91 year old in the next bed.
"Have you got a WOUND?" You'll have to imagine the accent, but after a couple of female comedians using the accent I just can't help finding it amusing.
"No, just a stoma"
"So you don't have a WOUND?"
"No. JUST a stoma".
"So you don't have any stitches, just your stoma?"
"Yes, I have a stoma with two sutures which my stoma nurses will deal with, I've already dis....."
"Your stoma nurse is NOT your district nurse or your GP, I have to contact your GP and DISTRICT nurse to tell them what you need when you go HOME".
"Yes, I know that, I see Nikki one of the nurses regularly, I'm just saying that I have seen my stoma nurse today and...."
by christ she was not going to listen to a thing I said. She repeated much of the above about 4 times. At which point I asked if she could stop as we both understood the situation and her repeating things very loudly, making me feel like I was stupid and interrupting everything I tried to say was rude and upsetting. She said I was just the same by not listening to her? That I was acting like I know it all. Well, since I've had at least 8 general anaesthetics, 4 abdominal surgeries and had a stoma for 9 months, knew the stoma care team rather well, yeah I pretty much know how these things work. I've been in hospital a lot. I imagine my frowning trying to understand her accent and why she was shouting might have been misinterpreted, but tough shit, I was in pain anyway.
She said she was ringing the district nurse to tell them to come and see me. I knew it wasn't necessary since I regularly see my district nurse due to my cancer - and I'd spoken to my stoma nurse about having the bridge and sutures out and that I would contact my regular nurse Nikki because we'd missed out on my last appointment due to chemo and her being ill.
Two district nurses arrived this morning. They came to watch me change my bag - to make sure I was coping with it. Since it didn't (at that point) need changing till tomorrow I wondered why they needed to see it - apparently this is why the carribbean nurse had called their boss twice. They'd said their boss found it very difficult to understand what she was saying so I felt better about the miscommunication I had. I apologised for their wasted trip, but they had brought my sick note (I asked when she rang) so it certainly wasn't wasted for me. They hadn't been told I'd had a stoma for 9 months - well if gobby had stopped to take a breath they might have been. They encouraged me to make sure I have plenty of the protein drinks and agreed it was a good idea after my poor nutrition in hospital. I did eat last night but today I've been reluctant due to abdominal pains. I have some lentil and spinach hotpot defrosting but might just settle on wheat free pasta and some delicious red pepper pesto I have, probably some steamed broccoli.
One of the team from Beating Bowel Cancer rang tonight to see how I'm getting on. They have always stayed in touch, I don't know how they keep track of everyone, but I guess there are always a finite number going through a particularly hard time at any given moment as others shift into calmer times. I hadn't realised how upset I was about my whole hospital experience until I repeated it, abridged, to her. It's almost like I'm having post traumatic stress - which really, it is. What's more traumatic than discovering what I did, fearing for your life from internal infection, neutropenia and lack of care, plus downright cruelty from several so called health professionals.
If I'm up to it, I might share some stories from the mad old ladies (patients) with you. As Carole said, they are at least good blogging material, even if they did stop me sleeping, resting and generally make me want to smother them in their sleep!
I had my op on Monday morning and I was very pleased to find he'd not had to open up the old scar, just a brand new rather large swollen mess of a stoma with a plastic "bridge" to stop it falling back into my belly where it belongs.
I've crhistened it Fatty Arbuckle. It's not a nice neat spout like the ileostomy, it's currently a swollen blobby mess which only seems to want to produce watery blood at the moment and nothing else. I've had so many issues with the food or lack of, to the point that I ate breakfast and lunch on Tuesday and no meals after breakfast Wednesday at the hospital. I'm supposed to be eating regularly so things keep moving. Not to mention I am in dire need of protein to heal after surgery, not to mention the ongoing weightloss. I haven't weight this little since i was 17 and on the dole existing on one meal a day through poverty being on a YTS. I still thought things might have started moving by now though.
It was the second time I've had an epidural, the first being my big op to remove the cancer but that was put in whilst I was under anaesthetic. This time I had to sit on the trolley and sit very still whie they put the cannula in my back. I felt him feeling every nobbly bone until he found the right place. I was so cold, it was a relief to feel drowsy and I don't remember much about recovery - except being taken there first to be admitted to theatre and talking to the staff member who was going to be in there passing instruments - she'd had breast cancer. I'm never sure what to say to people when they start that conversation with me, am I supposed to say "I'm so sorry" or feeel better that I'm not alone - except she's working and no sign of disease and I'm having palliative treatment and an emergency op which nobody expected. I assume she isn't incontinent or in constant pain wearing synthetic opioid patches? She was lovely, don't get me wrong, but I know other people have cancer, it doesn't make me feel better about my situation.
They took biopsies from the site of the fistula, but regardless of what they show it wont change a thing. If there is cancer there, or not they won't operate or change my treatment. I will just have chemo and hope it slows things down or shrinks them. That's all I've been offered.
Sarah, one of my stoma nurses came to see me on Tuesday and changed my bag, the skin was so tender around one side of it, the skin well away from the wound that I couldn't bear anyone to touch me there, I had to do the peeling myself but didn't feel strong enough to do the whole thing myself, having only an hour and a half sleep the night after surgery. She came again on Wednesday to watch me change it myself. My abdomen was a bit less tender, but still painful to touch. It was surprisingly easy, even with the bridge which is a rod with a T at each end. That will come out on Monday and the two sutures a couple of days later.
The surgical team came to see me daily (twice since I was only in two days afterwards) and one of the A Team examined me, i.e. had a look at the stoma, and had a feel of the area around it, I winced a lot when he caught the tender part. He said he was sorry, but he had to make me feel like I was in hospital since I was looking far too comfortable and well. (This was said with a smile and I did get his sense of humour - I liked him).
My new surgeon came to see me on Wednesday morning as well, urging me again to make sure I went home as soon as I felt I could cope - he had impressed this upon me and the stoma care team before the op as he seemed very concerned that I might pick up another infection. It may seem too soon, just 2 days post surgery to be alone at home but his concern for my health and recovery time made me feel much safer than being kept in longer to starve and become more malnourished. It wasn't a case of emptying my bed, he had genuine concern in his face and his tone. Besides, I've had 9 months experience with a stoma, it's not like I don't know what I'm doing or have to overcome the initial shock of dealing with having part of my insides hanging out my body for all to see (they don't, people don't like looking at that kind of thing). Right now I'm using the same bags as before but I'm keen to try different, newer ones. Until it gets working properly I won't know if I'll have to have a 2 part or a drainable bag. I don't really mind which to be honest, a two part does make skin care somewhat easier once it's settled in size. (This part is obviously for those who have a stoma and may find this bit interesting). The Apeel spray remover is still a favourite I'm pleased to see and now I have 3 pairs of super sharp curved nail scissors for cutting out (currently cutting to 50mm, ouch!).
All the nurses were nice, not as chatty as 7a, they just seemed to have more time up there, and even sent their love via Sarah who passed the message on. The tea ladies were also alright, apart from one.
"Do you want a drink?"
"Do you have any soya milk?"
"NO"
"Oh, no thank you then."
Another shift - same conversation except it was "No, I'll call and get you some" - just the same as the lovely lady in 7a who was my favourite. She couldn't understand why the other woman didn't do it, "drinking water all day is just boring!" and the other shift also didn't have any issues, even asked on my last day if I'd like to take the rest home with me. I didn't since it was opened three days by then and due for the bin.
This particular tea lady/food monitor as I liked to call her just seemed to dislike me. How I don't know, I was laid up post surgery minding my own business. Just because I don't drink cow's milk and she was unprepared to allow me to drink anything other than water, why did SHE have a problem?.
One day she shoved a menu card in my face without saying anything, it had been filled in by someone who'd gone home.
"What do I need to do with this?"
"Tell me what you want"
"Oh, I see, I'm vegan, so I don't mind what but a vegan meal please, I imagine you'll have to chase the kitchen, they seem to struggle with vegan meals"
Onto the next two patients in my bay:
"Hello sweetheart, what would you like to eat?" (Sorry WHAT, I get silence and then "tell me what you want" and attitude over soya milk. Because I've had surgery and what I need is to feel more miserable.
Becky witnessed a little of her "treat the vegan like shit on my shoe, bend over backwards to be nice to the others".
Today Fatty started to produce more than just watery blood I'm relieved to see. I had some bleeding leaking under the stick wafer part of the bag so had to do another change this afternoon, I was only upstairs for about 15 minutes and I went to the loo while I was up there. Still shaky sitting upright and trying to get the bag under the bulge of swollen abdomen and the bridge is rather tricky. I remember my first bag change which I undertook in hospital on day 3 by carrying my urine bag, wound drain bag and drip stand with me to the bathroom. I was worn out by the time I'd done that and sat on the toilet for about an hour reading instructions, measuring and cutting out two bags until I thought I'd got the size and shape right. I was in agony afterwards. The nurses were shocked to find I'd done this - "why didn't you ring the bell and ask us to change it?" but I'd never considered asking for help, it was my body, I had to do it home so why not now. I'd not even had a supervised change at this point which I think is why they were so surprised. But that's how I deal with things - head on.
I'm still very tired and sore, my left side is very swollen and tender which I know will go down, after two surgeries on my abdomen I'm fairly au fait with the healing process. I got into a very cold bed, I don't know why my room gets cold so fast after the heating goes off at night - I was under a blanket in the living room and didn't realise it had gone off. I couldn't face taking all my top clothes off and just changed into pyjama bottoms and dived under my feather duvet, head and all until I warmed up. I think I must have been asleep before midnight and the radio woke me briefly at 8, then the district nurse at 9 with a call to say she'd be here in the morning sometime.
Before discharge a caribbean nurse had come to shout at me as if I was the deaf 91 year old in the next bed.
"Have you got a WOUND?" You'll have to imagine the accent, but after a couple of female comedians using the accent I just can't help finding it amusing.
"No, just a stoma"
"So you don't have a WOUND?"
"No. JUST a stoma".
"So you don't have any stitches, just your stoma?"
"Yes, I have a stoma with two sutures which my stoma nurses will deal with, I've already dis....."
"Your stoma nurse is NOT your district nurse or your GP, I have to contact your GP and DISTRICT nurse to tell them what you need when you go HOME".
"Yes, I know that, I see Nikki one of the nurses regularly, I'm just saying that I have seen my stoma nurse today and...."
by christ she was not going to listen to a thing I said. She repeated much of the above about 4 times. At which point I asked if she could stop as we both understood the situation and her repeating things very loudly, making me feel like I was stupid and interrupting everything I tried to say was rude and upsetting. She said I was just the same by not listening to her? That I was acting like I know it all. Well, since I've had at least 8 general anaesthetics, 4 abdominal surgeries and had a stoma for 9 months, knew the stoma care team rather well, yeah I pretty much know how these things work. I've been in hospital a lot. I imagine my frowning trying to understand her accent and why she was shouting might have been misinterpreted, but tough shit, I was in pain anyway.
She said she was ringing the district nurse to tell them to come and see me. I knew it wasn't necessary since I regularly see my district nurse due to my cancer - and I'd spoken to my stoma nurse about having the bridge and sutures out and that I would contact my regular nurse Nikki because we'd missed out on my last appointment due to chemo and her being ill.
Two district nurses arrived this morning. They came to watch me change my bag - to make sure I was coping with it. Since it didn't (at that point) need changing till tomorrow I wondered why they needed to see it - apparently this is why the carribbean nurse had called their boss twice. They'd said their boss found it very difficult to understand what she was saying so I felt better about the miscommunication I had. I apologised for their wasted trip, but they had brought my sick note (I asked when she rang) so it certainly wasn't wasted for me. They hadn't been told I'd had a stoma for 9 months - well if gobby had stopped to take a breath they might have been. They encouraged me to make sure I have plenty of the protein drinks and agreed it was a good idea after my poor nutrition in hospital. I did eat last night but today I've been reluctant due to abdominal pains. I have some lentil and spinach hotpot defrosting but might just settle on wheat free pasta and some delicious red pepper pesto I have, probably some steamed broccoli.
One of the team from Beating Bowel Cancer rang tonight to see how I'm getting on. They have always stayed in touch, I don't know how they keep track of everyone, but I guess there are always a finite number going through a particularly hard time at any given moment as others shift into calmer times. I hadn't realised how upset I was about my whole hospital experience until I repeated it, abridged, to her. It's almost like I'm having post traumatic stress - which really, it is. What's more traumatic than discovering what I did, fearing for your life from internal infection, neutropenia and lack of care, plus downright cruelty from several so called health professionals.
If I'm up to it, I might share some stories from the mad old ladies (patients) with you. As Carole said, they are at least good blogging material, even if they did stop me sleeping, resting and generally make me want to smother them in their sleep!
Thursday 2 December 2010
2010 2nd December - I'm Grateful For....
I read a post from a blog I follow - I'm Sorry For Cursing - about being thankful (seems a while since my post in a similar vein), it being Thanksgiving while I was in the Pilgrim Hilton.
Things I was thankful for in hospital:
That I'm confident and educated enough to speak up for myself when I wasn't getting what I thought I needed, unlike the more helpless patients in my initial 4 bed ward - all in their 80s.
An ensuite room to myself to get some rest essential for healing (and the nurse who suggested I have it when the previous patient died, rescuing me from Audrey's 10 minute wails of heeeeeeeeeeeelp pleeeeeeeeeeease, when all she wanted was some attention.
An ensuite room because of my toiletry needs.
Becky for taking me there, not freaking when I explained everything, feeding Alfie, removing any possibility of germs from rotting veg in my fridge and making trips to the sorting office in the snow. (Less thankful that you aren't tall enough or built heavy enough to bitchslapupsidethehead the twats we encountered up to 3am Monday morning, but you can't do everything I suppose).
Hayley for sending me books via Amazon since she lives in France, for being in touch daily to nag me out of self pity and for her son Reuben blowing me a kiss down the phone the night I came home - safe from his snotty germs.
My operation date only being delayed by one week (fingers crossed - 6th December).
Mum and her husband Peter driving over from Derbyshire twice with towels, toiletries, books, fruit and conversation.
The MacMillan nurse who came to see me and who will organise a hospice stay for me and ongoing hopefully some counselling.
Every nurse and HCSW (apart from brief encounters with those who just wanted to be nosy) who spent far too long chasing food instead of nursing.
Every nurse who spent time listening and passing me tissues, especially the sister on 7a, the four chemo nurses who came to see me (in particular the one who got me to 7a instead of rotting in M2)
The wonderful lady serving drinks who got me soya milk the very first time I asked if she had any "No, but I'll get you some!" without so much as a second thought.
Mr A, for swooping in and sorting it all out.
The Lone Ranger for ringing Mr A presumably at home to ask him to come and see me in the first place!
Mike for the vegan wheat free choc cookie in lieu of a missing nut cutlet meal the kitchen couldn't manage, the 2 bottles of WG cocktail.
Everyone who posted comments on Facebook (can't remember them all, but you know who you are obviously).
Katie for the chemo shopping delivered by Boston Tesco manager himself a couple of days before I was admitted - at least I got to eat the awesome (if wheaty) bread and still going cos I put it in the freezer, despite Becky having to get rid of the rest before it rotted :o(
Katie again for the gorgeous PJs which I must stop wearing so I can wash them for next stay - I didn't pack enough and the mags.
Jane for the DCI Gene Hunt/Chuck Norris quotes.
Maurice for the company on Sunday and the Sunday Wail (TV guide very useful) and telling me I look great despite evidence to the contrary. Sue for staying away with her germs, much as I'd have liked to see the whole family.
My ex husband for bringing my wonderful children for over 2 hours - I love every minute I see them, they cheer me up the way I never expected teenagers could.
My kids.
I also wrote a list of highlights of the day, week, month, year, decade and my life in general:
Day: I was happy the day they stopped the injections of antibiotics which tasted like nail varnish in my mouth (administered via PICC slowly). The same day I had another visit from the MacMillan nurse.
Week: Mr A for getting me a plan and Sister B for chasing everything up and understanding a plan was the one thing I needed more than anything.
Month: The number of times I've seen my kids despite being unable to go to them.
Year: My 40th birthday, going to France in Izzy, Bec's Memorial. Bec's Memorial was beautiful and it confirmed my plans for myself in my head and my determination to Live Strong. Sept 4th when I last went out "with the girls", missing one badly but it was a great weekend, drugs excepted.
Decade: Finding out who my true friends are, including the ones I only met because we all have/had colorectal cancer. They, by our shared misfortune, understand in a way I don't want my other friends or family to know about.
My life: Having children so young. I will be leaving young adults behind, not small children. I know they have already become wonderful people. They are intelligent, thoughtful and independent (not always the best, but I think they have a better balance than I do). They know what the like doing, they have talents in totally different areas, but they both have a general direction. It may be hard for them, as it was for me trying to find work in the 80s, things seem rather similar, trying to survive. When I'm not here to support them, at least financially I can leave them some security to pursue what they want to do/pay off Uni debts or whatever.
This last one may seem upsetting, but it isn't, really. Leaving them behind even 3 years ago would have been too soon, damaged them too much and hurt my soul. As much as I want to see them settled in their own homes, both with families, if that's what they want, I will make it into their adulthood with them.
.
Things I was thankful for in hospital:
That I'm confident and educated enough to speak up for myself when I wasn't getting what I thought I needed, unlike the more helpless patients in my initial 4 bed ward - all in their 80s.
An ensuite room to myself to get some rest essential for healing (and the nurse who suggested I have it when the previous patient died, rescuing me from Audrey's 10 minute wails of heeeeeeeeeeeelp pleeeeeeeeeeease, when all she wanted was some attention.
An ensuite room because of my toiletry needs.
Becky for taking me there, not freaking when I explained everything, feeding Alfie, removing any possibility of germs from rotting veg in my fridge and making trips to the sorting office in the snow. (Less thankful that you aren't tall enough or built heavy enough to bitchslapupsidethehead the twats we encountered up to 3am Monday morning, but you can't do everything I suppose).
Hayley for sending me books via Amazon since she lives in France, for being in touch daily to nag me out of self pity and for her son Reuben blowing me a kiss down the phone the night I came home - safe from his snotty germs.
My operation date only being delayed by one week (fingers crossed - 6th December).
Mum and her husband Peter driving over from Derbyshire twice with towels, toiletries, books, fruit and conversation.
The MacMillan nurse who came to see me and who will organise a hospice stay for me and ongoing hopefully some counselling.
Every nurse and HCSW (apart from brief encounters with those who just wanted to be nosy) who spent far too long chasing food instead of nursing.
Every nurse who spent time listening and passing me tissues, especially the sister on 7a, the four chemo nurses who came to see me (in particular the one who got me to 7a instead of rotting in M2)
The wonderful lady serving drinks who got me soya milk the very first time I asked if she had any "No, but I'll get you some!" without so much as a second thought.
Mr A, for swooping in and sorting it all out.
The Lone Ranger for ringing Mr A presumably at home to ask him to come and see me in the first place!
Mike for the vegan wheat free choc cookie in lieu of a missing nut cutlet meal the kitchen couldn't manage, the 2 bottles of WG cocktail.
Everyone who posted comments on Facebook (can't remember them all, but you know who you are obviously).
Katie for the chemo shopping delivered by Boston Tesco manager himself a couple of days before I was admitted - at least I got to eat the awesome (if wheaty) bread and still going cos I put it in the freezer, despite Becky having to get rid of the rest before it rotted :o(
Katie again for the gorgeous PJs which I must stop wearing so I can wash them for next stay - I didn't pack enough and the mags.
Jane for the DCI Gene Hunt/Chuck Norris quotes.
Maurice for the company on Sunday and the Sunday Wail (TV guide very useful) and telling me I look great despite evidence to the contrary. Sue for staying away with her germs, much as I'd have liked to see the whole family.
My ex husband for bringing my wonderful children for over 2 hours - I love every minute I see them, they cheer me up the way I never expected teenagers could.
My kids.
I also wrote a list of highlights of the day, week, month, year, decade and my life in general:
Day: I was happy the day they stopped the injections of antibiotics which tasted like nail varnish in my mouth (administered via PICC slowly). The same day I had another visit from the MacMillan nurse.
Week: Mr A for getting me a plan and Sister B for chasing everything up and understanding a plan was the one thing I needed more than anything.
Month: The number of times I've seen my kids despite being unable to go to them.
Year: My 40th birthday, going to France in Izzy, Bec's Memorial. Bec's Memorial was beautiful and it confirmed my plans for myself in my head and my determination to Live Strong. Sept 4th when I last went out "with the girls", missing one badly but it was a great weekend, drugs excepted.
Decade: Finding out who my true friends are, including the ones I only met because we all have/had colorectal cancer. They, by our shared misfortune, understand in a way I don't want my other friends or family to know about.
My life: Having children so young. I will be leaving young adults behind, not small children. I know they have already become wonderful people. They are intelligent, thoughtful and independent (not always the best, but I think they have a better balance than I do). They know what the like doing, they have talents in totally different areas, but they both have a general direction. It may be hard for them, as it was for me trying to find work in the 80s, things seem rather similar, trying to survive. When I'm not here to support them, at least financially I can leave them some security to pursue what they want to do/pay off Uni debts or whatever.
This last one may seem upsetting, but it isn't, really. Leaving them behind even 3 years ago would have been too soon, damaged them too much and hurt my soul. As much as I want to see them settled in their own homes, both with families, if that's what they want, I will make it into their adulthood with them.
.
2010 2nd December - 4 Beds, 4 Wards, 4 Hours (+ 8 days)
Well, I've had a couple of days at home now since my little holiday in Pilgrim Hospital. I went from a trolley in A&E to a trolley in an office (the Veno room we opted to call the Vino room and hoped for perhaps a nice glass of pink) in Clinical Decisions unit, to a gynae ward and finally, after one of my chemo nurses chased the hospital to ensure I was being cared for, transferred to the cancer ward where they know how to deal with neutropenia and PICC lines.
I think the only way to convey why I was so frightened and distraught, and I really do think those are the best words for how I felt for at least the first two days, is to explain exactly what I "discovered".
The entire time I've been having chemo this time I've suffered constipation, vomiting, general abdominal pain, very low pain and the usual pelvis and hip pain for which I'm using the Fentanyl patches. It started on day one of Evil Irene. I've not been constipated in well over 4 years, since before I became ill with cancer. It took me a while to notice. When you've got an internal J-pouch, or any type of coloanal join, you go to the loo more frequently and frequency is generally affected by what you put in your mouth. The nausea, inability to eat or drink, the vomiting - it sort of distracted me. With all that going on, reduced trips to the toilet are most welcome.
I was also, more distressingly leaking, I put it down to the chemo making some watery output, since it and all the other medication I'm on can all cause constipation/diarrhoea I dealt with it as best I could, with thick Tena Lady pads I had for my reversal for the expected urgency and liquid stools until things settled down. Obviously not their intended purpose, but essentially I needed some kind of nappy and was horribly conscious of the smell and that just put me off seeing anyone or leaving the house at all as things got worse.
By the third cycle of Irene I'd spent 3 weekends basically on the toilet. The pains would be spasms, like contractions, the pain all in the area of surgery, where my rectum used to be, making sitting, standing, walking all even harder on top of the usual pelvic pain (or was the just an extension of that pain?). Every 20 mins I'd have to rush to the toilet and try and pass something - having taken Senna as soon as I realised the problem. The pain was so bad I cried, I would spend every Friday/Saturday night and part of the day doing this as the Senna kicked my bowel into action but nothing would move for a day or so, sometimes it was so painful, I actually used the breathing they teach you for childbirth, it was that bad.
I was worn out, losing weight, unable to cook, eat or drink in that state and just hoping the Senna would work the more I took. Still there was leaking which frustrated the hell out of me - but I guessed that was just gravity. On Sunday 21st November the niggling thoughts that had been right at the back of my mind, hiding in a locked safe, at the bottom of a wardrobe hidden by long coats, suddenly came to the front and prompted me take a mirror to the toilet.
Nothing was coming out of where it should have been, somehow (I'd read of this happening in certain female cancers, so was aware, but never, never considered it could happen) my pouch was leaking into my womb, and as far as I knew into my pelvis. I felt sick, disgusted, horrified, terrified, dirty and a whole lot more. My son had already asked me to pick him up from his friend's so we could spend a few hours together so I cleaned myself up yet again and got dressed. We spent the time looking at the phone he really wanted for Christmas, and agreed he could have it but a second hand one (£450 new). He and his sister now have the phones they wanted early - I don't know what state I'll be in at Christmas so they've had them early while I was "well" enough to take in fully the looks on their faces and spent time with them figuring out the swanky new tech.
I sent Becky a text telling her I thought I'd need a stay in hospital, but not why and she came over to drive him home while I rang the cancer ward for advice and packed a bag. They told me to go to A&E and you know about some of the wonderful specimens of the health profession who not only reduced me to tears insisting I wasn't incurable, needed help getting dressed, should have asked exactly what date I'll die, but made me explain in detail to at least four of them exactly why I was there.
I struggled to admit it to myself and here they are making me say it over and over again after explaining my current palliative chemo they all asked "so, after everything we've been over, about your cancer, the pain and the fistula, and we know you're neutropenic and have a temperature, what has actually made you come to the hospital today?" I couldn't believe it. Neither could Becky. Who, in their sane mind, would consider passing faeces through THERE, was normal and not get to hospital ASAP? I began to question if it was even happening. Since nobody even examined me until I'd been there 2 days. The neutropenia, low blood pressure, infection and temperature took priority.
All the time I was thinking, if there's a hole in my pouch (basically my intestines chopped about to make a new sort of rectum and it's forcing itself into my womb, what if it's leaking everywhere, I know from my reversal how serious a leak is when I had a suspected one - the risk of death isn't low. Nobody seemed to care about this, they were only interested, rightly now I can see, in getting my white cell counts up.
I'd not slept for 2 nights and managed 3 hours on Monday night, every conversation was riddled with fear. A registrar surgeon came to see me on Tuesday morning - he also reduced me to tears by refusing to answer "once I'm over the infection, and white cells are OK, is it likely I'll have to go home and wait for an operation left in "THIS" state?", insisting the surgery I needed I HAD to understand was very risky. I know, I had my entire contents cut out, chopped up and put back in 3.5 years ago. The nurses, all women, all understood my anguish, why I needed this to stop, why I needed answers, a plan of action. The sister on the ward followed the surgeon out and he apparently "backed down a lot" after she spoke to him. He was supposed to talk to his boss then return in the afternoon. I had decided this man was having NOTHING to do with my surgery or my care.
My wonderful surgeon Mr A came in the afternoon instead. He was on holiday - I knew this, but still he came in to see me with 2 of his team. He basically came in and kicked ass. Told me what they would do - a permanent stoma of some sort, whichever was possible once I was opened up. He had a surgeon who he said was good to operate in his place and his team would continue to check on me during my stay.
He is Indian I'm sure from his name. As I lean more towards Ayurvedic thinking since my re-diagnosis I find he is the only person who can say "We cannot control some things Lisa, we have to just accept that this is the path we're on and be strong". He said it quietly with his hand on mine, as he always does when he tells me bad news, with tears rolling down my face. They weren't tears of frustration or fear now he was in charge, they were tears of relief. Things improved after his visit. His chosen surgeon also came to see me, he's lovely too. The trust I have in Mr A is transferable to anyone he chooses to care for me. He explained the best solution would be a permanent colostomy at the sigmoid - usual place. However the scarring I will have, and the fact I have no sigmoid colon left means a stoma down the left side is not feasible. A high stoma formed from my transverse colon, but still a loop - where both ends of the cut 'tube' are brought through forming a huge bulge (I cried more when I saw just how big these are) is best. Output will be less solid but I will absorb more fluid than with another ileostomy as I had before. Sally one of the colorectal nurses has marked me up in 3 places - though we know there are only 2. He also said he will try to make a small cut, but is almost certain he'll need to open up the 10 inch scar - which I've had a pretty tattoo over since by way of saying "no need for more surgery here, I'm safe from cancer".
I had 2 sorts of 4 hourly antibiotics in my line, IV fluids for all but the last 2 days. I had jabs in my belly to stop clotting, surgical stockings, jabs in my belly of GCSF (to stimulate my bone marrow to make white cells).
My neutraphils were 1.5 the day before my 3rd dose of Irene, 0.9 on admission on Sunday night, 0.8 on the Monday - below 0.5 and you're in dangerous territory, an infection suddenly has an element of fatality.
Dr Tom, my onco came to see me with Kit Kats as a peace offering, which I declined politely. They are all shocked at this latest development. He has a theory there was cancer at the join, Irene killed the cancer, or shrunk it, weakening the area and the fistula formed. Or, the fistula was just because radiation causes them and scar tissue and sodding unexplained pelvic pain (finally someone is considering my explanation?). He mentioned we might try some different drugs which might mean I could reduce the dose of Fentanyl since I hate the effects so much and really, I will need the hard drugs further down the line.
It's a lot to take in. They cannot do anything about my pelvic organs, surgery is too risky, especially with the high possibility of cancer in there as well. They hope the fistula will close itself once nothing is interfering with it, he mentioned a fistula plug, but again - it's really a case of wait and see. I asked Sally, despite the fact that nobody will ever want me now, not now I have an invisible "use by sometime quite soon" label somewhere, if I would ever be able to have sex again. There's no definite answer, but perhaps. If enough care is taken, if the hole isn't too big (it's over 1cm in diameter, possibly 2cm).
I weighed 75 kg earlier this year, around when the pain started in April, I now weigh under 60kg. I lost the weight so fast, my skin is looser, I can even see it in my face. My muscle tone is gone, my calves are wobbly when they were solid from running. My hair is falling out, half gone already but slowed down now I'm having some time off Irene. I am weak and get out of breath easily. Often I am in pain walking very short distances. I don't have the energy to try and do anything with my hair or even bother with concealer under my eyes. I wear clothes but find it hard to care what. I'm incontinent. I am nearly 4 years post menopause and my skin is permanently dry. I know if I make an effort I can look a bit like me, but the changes have come so fast I don't recognise myself in the mirror. So why do I care if I never have a sex life again, I know I can't have a relationship? I don't think I do really, but I care that I have no choice, no control and I agreed to be discharged on Tuesday so I could come home and get on with the process of accepting.
People talk about fighting cancer, but I can't fight it. I am accepting it, I'm living with it, I'm determined not to let each new horror beat me. I still eat a vegan diet, I have made the very rare concession of tuna, salmon or crab for easy protein during chemo. I've had to make a concession on wheat - eating ordinary bread in hospital and if people buy me groceries that aren't quite on my list I'll take them regardless. I can't handle wheat grass unless it's in the cocktail Holland and Barrett sell for over £3 a bottle. Mike supplied a couple of bottles last week which made me feel I was doing something at least. I'm sticking to my plan as far as is practical and my taste allows. Cucumber makes me feel ill still - but I managed to eat some yesterday but I used to have a half or whole in my green drink every day. I'm not sure if I'll be able to get back to juicing but if it happens it does, I'm not forcing anything. Whatever I do has to be relatively easy and cause me no stress. I'll get back to my original plan eventually, I just need to go with the flow for the time being.
I'm going to continue this in another post, just to break it up a bit.
For those who don't understand the surgery (why would you unless you've had it?) here is a very useful link:
http://www.youtube.com/watch?v=kUvHDdjZJkc
.
I think the only way to convey why I was so frightened and distraught, and I really do think those are the best words for how I felt for at least the first two days, is to explain exactly what I "discovered".
The entire time I've been having chemo this time I've suffered constipation, vomiting, general abdominal pain, very low pain and the usual pelvis and hip pain for which I'm using the Fentanyl patches. It started on day one of Evil Irene. I've not been constipated in well over 4 years, since before I became ill with cancer. It took me a while to notice. When you've got an internal J-pouch, or any type of coloanal join, you go to the loo more frequently and frequency is generally affected by what you put in your mouth. The nausea, inability to eat or drink, the vomiting - it sort of distracted me. With all that going on, reduced trips to the toilet are most welcome.
I was also, more distressingly leaking, I put it down to the chemo making some watery output, since it and all the other medication I'm on can all cause constipation/diarrhoea I dealt with it as best I could, with thick Tena Lady pads I had for my reversal for the expected urgency and liquid stools until things settled down. Obviously not their intended purpose, but essentially I needed some kind of nappy and was horribly conscious of the smell and that just put me off seeing anyone or leaving the house at all as things got worse.
By the third cycle of Irene I'd spent 3 weekends basically on the toilet. The pains would be spasms, like contractions, the pain all in the area of surgery, where my rectum used to be, making sitting, standing, walking all even harder on top of the usual pelvic pain (or was the just an extension of that pain?). Every 20 mins I'd have to rush to the toilet and try and pass something - having taken Senna as soon as I realised the problem. The pain was so bad I cried, I would spend every Friday/Saturday night and part of the day doing this as the Senna kicked my bowel into action but nothing would move for a day or so, sometimes it was so painful, I actually used the breathing they teach you for childbirth, it was that bad.
I was worn out, losing weight, unable to cook, eat or drink in that state and just hoping the Senna would work the more I took. Still there was leaking which frustrated the hell out of me - but I guessed that was just gravity. On Sunday 21st November the niggling thoughts that had been right at the back of my mind, hiding in a locked safe, at the bottom of a wardrobe hidden by long coats, suddenly came to the front and prompted me take a mirror to the toilet.
Nothing was coming out of where it should have been, somehow (I'd read of this happening in certain female cancers, so was aware, but never, never considered it could happen) my pouch was leaking into my womb, and as far as I knew into my pelvis. I felt sick, disgusted, horrified, terrified, dirty and a whole lot more. My son had already asked me to pick him up from his friend's so we could spend a few hours together so I cleaned myself up yet again and got dressed. We spent the time looking at the phone he really wanted for Christmas, and agreed he could have it but a second hand one (£450 new). He and his sister now have the phones they wanted early - I don't know what state I'll be in at Christmas so they've had them early while I was "well" enough to take in fully the looks on their faces and spent time with them figuring out the swanky new tech.
I sent Becky a text telling her I thought I'd need a stay in hospital, but not why and she came over to drive him home while I rang the cancer ward for advice and packed a bag. They told me to go to A&E and you know about some of the wonderful specimens of the health profession who not only reduced me to tears insisting I wasn't incurable, needed help getting dressed, should have asked exactly what date I'll die, but made me explain in detail to at least four of them exactly why I was there.
I struggled to admit it to myself and here they are making me say it over and over again after explaining my current palliative chemo they all asked "so, after everything we've been over, about your cancer, the pain and the fistula, and we know you're neutropenic and have a temperature, what has actually made you come to the hospital today?" I couldn't believe it. Neither could Becky. Who, in their sane mind, would consider passing faeces through THERE, was normal and not get to hospital ASAP? I began to question if it was even happening. Since nobody even examined me until I'd been there 2 days. The neutropenia, low blood pressure, infection and temperature took priority.
All the time I was thinking, if there's a hole in my pouch (basically my intestines chopped about to make a new sort of rectum and it's forcing itself into my womb, what if it's leaking everywhere, I know from my reversal how serious a leak is when I had a suspected one - the risk of death isn't low. Nobody seemed to care about this, they were only interested, rightly now I can see, in getting my white cell counts up.
I'd not slept for 2 nights and managed 3 hours on Monday night, every conversation was riddled with fear. A registrar surgeon came to see me on Tuesday morning - he also reduced me to tears by refusing to answer "once I'm over the infection, and white cells are OK, is it likely I'll have to go home and wait for an operation left in "THIS" state?", insisting the surgery I needed I HAD to understand was very risky. I know, I had my entire contents cut out, chopped up and put back in 3.5 years ago. The nurses, all women, all understood my anguish, why I needed this to stop, why I needed answers, a plan of action. The sister on the ward followed the surgeon out and he apparently "backed down a lot" after she spoke to him. He was supposed to talk to his boss then return in the afternoon. I had decided this man was having NOTHING to do with my surgery or my care.
My wonderful surgeon Mr A came in the afternoon instead. He was on holiday - I knew this, but still he came in to see me with 2 of his team. He basically came in and kicked ass. Told me what they would do - a permanent stoma of some sort, whichever was possible once I was opened up. He had a surgeon who he said was good to operate in his place and his team would continue to check on me during my stay.
He is Indian I'm sure from his name. As I lean more towards Ayurvedic thinking since my re-diagnosis I find he is the only person who can say "We cannot control some things Lisa, we have to just accept that this is the path we're on and be strong". He said it quietly with his hand on mine, as he always does when he tells me bad news, with tears rolling down my face. They weren't tears of frustration or fear now he was in charge, they were tears of relief. Things improved after his visit. His chosen surgeon also came to see me, he's lovely too. The trust I have in Mr A is transferable to anyone he chooses to care for me. He explained the best solution would be a permanent colostomy at the sigmoid - usual place. However the scarring I will have, and the fact I have no sigmoid colon left means a stoma down the left side is not feasible. A high stoma formed from my transverse colon, but still a loop - where both ends of the cut 'tube' are brought through forming a huge bulge (I cried more when I saw just how big these are) is best. Output will be less solid but I will absorb more fluid than with another ileostomy as I had before. Sally one of the colorectal nurses has marked me up in 3 places - though we know there are only 2. He also said he will try to make a small cut, but is almost certain he'll need to open up the 10 inch scar - which I've had a pretty tattoo over since by way of saying "no need for more surgery here, I'm safe from cancer".
I had 2 sorts of 4 hourly antibiotics in my line, IV fluids for all but the last 2 days. I had jabs in my belly to stop clotting, surgical stockings, jabs in my belly of GCSF (to stimulate my bone marrow to make white cells).
My neutraphils were 1.5 the day before my 3rd dose of Irene, 0.9 on admission on Sunday night, 0.8 on the Monday - below 0.5 and you're in dangerous territory, an infection suddenly has an element of fatality.
Dr Tom, my onco came to see me with Kit Kats as a peace offering, which I declined politely. They are all shocked at this latest development. He has a theory there was cancer at the join, Irene killed the cancer, or shrunk it, weakening the area and the fistula formed. Or, the fistula was just because radiation causes them and scar tissue and sodding unexplained pelvic pain (finally someone is considering my explanation?). He mentioned we might try some different drugs which might mean I could reduce the dose of Fentanyl since I hate the effects so much and really, I will need the hard drugs further down the line.
It's a lot to take in. They cannot do anything about my pelvic organs, surgery is too risky, especially with the high possibility of cancer in there as well. They hope the fistula will close itself once nothing is interfering with it, he mentioned a fistula plug, but again - it's really a case of wait and see. I asked Sally, despite the fact that nobody will ever want me now, not now I have an invisible "use by sometime quite soon" label somewhere, if I would ever be able to have sex again. There's no definite answer, but perhaps. If enough care is taken, if the hole isn't too big (it's over 1cm in diameter, possibly 2cm).
I weighed 75 kg earlier this year, around when the pain started in April, I now weigh under 60kg. I lost the weight so fast, my skin is looser, I can even see it in my face. My muscle tone is gone, my calves are wobbly when they were solid from running. My hair is falling out, half gone already but slowed down now I'm having some time off Irene. I am weak and get out of breath easily. Often I am in pain walking very short distances. I don't have the energy to try and do anything with my hair or even bother with concealer under my eyes. I wear clothes but find it hard to care what. I'm incontinent. I am nearly 4 years post menopause and my skin is permanently dry. I know if I make an effort I can look a bit like me, but the changes have come so fast I don't recognise myself in the mirror. So why do I care if I never have a sex life again, I know I can't have a relationship? I don't think I do really, but I care that I have no choice, no control and I agreed to be discharged on Tuesday so I could come home and get on with the process of accepting.
People talk about fighting cancer, but I can't fight it. I am accepting it, I'm living with it, I'm determined not to let each new horror beat me. I still eat a vegan diet, I have made the very rare concession of tuna, salmon or crab for easy protein during chemo. I've had to make a concession on wheat - eating ordinary bread in hospital and if people buy me groceries that aren't quite on my list I'll take them regardless. I can't handle wheat grass unless it's in the cocktail Holland and Barrett sell for over £3 a bottle. Mike supplied a couple of bottles last week which made me feel I was doing something at least. I'm sticking to my plan as far as is practical and my taste allows. Cucumber makes me feel ill still - but I managed to eat some yesterday but I used to have a half or whole in my green drink every day. I'm not sure if I'll be able to get back to juicing but if it happens it does, I'm not forcing anything. Whatever I do has to be relatively easy and cause me no stress. I'll get back to my original plan eventually, I just need to go with the flow for the time being.
I'm going to continue this in another post, just to break it up a bit.
For those who don't understand the surgery (why would you unless you've had it?) here is a very useful link:
http://www.youtube.com/watch?v=kUvHDdjZJkc
.
Monday 22 November 2010
2010 21st November - Isolation
Quick post after first 3 hours sleep since early hours of Sunday. After answering all the subtle messages from my brain, I discovered an horrific truth which I knew would end up with a hospital stay, I spent a few hours with my son as planned. Then text my sister, think it's all fine now, emotions in place, to ask for lift to hospital. She drove my son home "sorry, my pain is just a bit much to take you this time".
Edited highlights - 3 hours in A&E, repeat details and history to 5 medics in 4 wards, 4 different beds. Admitted, neutropenic. Need surgery which is too dangerous with neutropenia, still not seen surgeon promised by Monday morning to confirm action plan. Not operating increasing risk of yet more infection of worsening degrees. Assigned ensuite single room due to bloods on death of another patient.
During stay have had to insist that no "being young doesn't mean I'll live, why do you think I'm curable when my onco says not" to one Dr (clearly Dr 2's handover missed out the palliative nature if neut killing chemo (0.9 by this point). In sobs of tears (mine) the penny drops. Suddenly I am "vulnerable and need all the support available". Support arrives in disguise of Occupational Therapist asking how I feel today "utterly miserable" "oh dear, have you been feeling that for long?"
Incredulous, I say, well since some time after discovering I'm incurably ill but worse since my discovery leading to admission. No I dont need someone to come help me wash and dress every day, I dont need devices to help me get out of bed, I have cooked and managed my own life since I was 16. Yes of course I can walk short distances and don't need a frame - WHY are you of the impression I'm 80 and frail? I had a shower and dressed thus evening, packed a bag fir a weeks stay, arranged transport to hospital, how can you think of me this way having just met me with NO view of my notes, no idea that I got up four times and dragged my drip stand to toilet in the last 2 hours? Oh handover notes said I need help? Yes MEDICAL, perhaps emotional, definitely surgical. She realised too late she should have assessed me before making assumptions, apologies and left me in even more tears.
My stay has been a catalogue of minor but continual errors. Worst - the 1st Dr insisting I tell him how long I've got to live in front of my sister, now fighting tears herself, who after 3 attempts realises I will NEVER ask for or adhere to any expiry date from one of his kind. What bloody difference does it make to my treatment? Sorry you only have 8 months left, no point helping you, cuts etc? Who knows. I'll elaborate for those who liked Fawlty Towers when I'm out of here,
because really, if you don't laugh, you may as well jump in your coffin.
Edited highlights - 3 hours in A&E, repeat details and history to 5 medics in 4 wards, 4 different beds. Admitted, neutropenic. Need surgery which is too dangerous with neutropenia, still not seen surgeon promised by Monday morning to confirm action plan. Not operating increasing risk of yet more infection of worsening degrees. Assigned ensuite single room due to bloods on death of another patient.
During stay have had to insist that no "being young doesn't mean I'll live, why do you think I'm curable when my onco says not" to one Dr (clearly Dr 2's handover missed out the palliative nature if neut killing chemo (0.9 by this point). In sobs of tears (mine) the penny drops. Suddenly I am "vulnerable and need all the support available". Support arrives in disguise of Occupational Therapist asking how I feel today "utterly miserable" "oh dear, have you been feeling that for long?"
Incredulous, I say, well since some time after discovering I'm incurably ill but worse since my discovery leading to admission. No I dont need someone to come help me wash and dress every day, I dont need devices to help me get out of bed, I have cooked and managed my own life since I was 16. Yes of course I can walk short distances and don't need a frame - WHY are you of the impression I'm 80 and frail? I had a shower and dressed thus evening, packed a bag fir a weeks stay, arranged transport to hospital, how can you think of me this way having just met me with NO view of my notes, no idea that I got up four times and dragged my drip stand to toilet in the last 2 hours? Oh handover notes said I need help? Yes MEDICAL, perhaps emotional, definitely surgical. She realised too late she should have assessed me before making assumptions, apologies and left me in even more tears.
My stay has been a catalogue of minor but continual errors. Worst - the 1st Dr insisting I tell him how long I've got to live in front of my sister, now fighting tears herself, who after 3 attempts realises I will NEVER ask for or adhere to any expiry date from one of his kind. What bloody difference does it make to my treatment? Sorry you only have 8 months left, no point helping you, cuts etc? Who knows. I'll elaborate for those who liked Fawlty Towers when I'm out of here,
because really, if you don't laugh, you may as well jump in your coffin.
Sunday 14 November 2010
2010 14th November - How NOT to Have Cancer
To anyone who missed the whole point of the "Getting things off my chest" post, and is now pissed off with me, I'm sorry. I thought the words "jovial", "laughing", "exaggerated...to prevent dullness" and "on the third day of chemo, my preferred responses would be" might have been sufficient.
Perhaps I should just post graphic details and my actual misery instead of my evidently vain attempts to turn this, my actually ruined life into something humourous and more digestible.
The general message in the post was meant to be this:
Anything that is said purely because someone has cancer will always hurt on some level, even the things that cheer someone up, make the hour/day/week better, put a smile on someone's face, there's always that scorpion sting - if there was no disease, you'd not have cause to say it and I wouldn't have to feel your pain as well as my own.
Perhaps I should just post graphic details and my actual misery instead of my evidently vain attempts to turn this, my actually ruined life into something humourous and more digestible.
The general message in the post was meant to be this:
Anything that is said purely because someone has cancer will always hurt on some level, even the things that cheer someone up, make the hour/day/week better, put a smile on someone's face, there's always that scorpion sting - if there was no disease, you'd not have cause to say it and I wouldn't have to feel your pain as well as my own.
2010 14th November -
I took Izzy to the hand car wash on Friday - and got them to hoover the ridiculously small interior. £7.50 which I probably could have spent better, but seeing my lovely little red car all shiny (given I polished her, then waxed on a regular basis before the pain got too much) was worth it. My friend Peter, who is sadly nearer the end of his life than I am, bought himself a Porsche as his "end of life" present to himself. Bec and Ol also decided to spoil themselves and drive around in style in a sexy sporty Mazda. Lady Deborah bought Baby, her Street Ka and Faerie, working stupidly unhealthy hours as a legal professional has a rather lovely SLK. These convertibles were not end of life cars, but celebration of not having cancer any more cars. And yes Cindy, girls DO just wanna have fun. It's no surprise then, that after yet another procedure in March under a general anaesthetic made necessary by cancer treatment, I wanted to join in with having a less sensible car. I'd been driving a Kia for a few years, purely because I had a 70 mile round trip to work every day and they are very economical to own and run.
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| Izzy as a convertible |
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| Izzy as a coupe |
The pain started perhaps the day after that op on 1st April 2010 and I managed to find my dream car (dream car within budget that is) just a couple of weeks later. Tony asked me recently (hello Tony) what I do for fun and after thinking about it, what I used to do three times a day when working, was drive Izzy as fast as I dare to and from work. I drove home with the top down every lunchtime because I live less than 4 miles away so my fuel consumption was still minimal even by doubling my journeys. Every time I drove her I had a smile on my face. Of course on sunny days it was more of a lunatic grin. I washed her every week, sometimes twice and made sure she got some decent layers of wax (I have more car care products than I do beauty products).
Since I don't leave the house much, except to go to hospital it's less of a joy, more of a "God, am I really safe to drive the way I feel?" event. But on Saturday I braved the 30 odd mile journey to Lincoln to have a nosy round St Barnabas Christmas Craft Fair with Susie. Susie doesn't have a car and there is NO local transport between Lincoln and Boston. Well I think there's a weekly bus on a Friday for shoppers from here, but that's no use to her is it? The drive was good! It's not a bad road, a few hills and bends (Izzy loves bends) and greenery. There wasn't much traffic either, and in an MX5 you can actually have as much fun at 50 as you can at 80 (ahem, that's 80 in France obviously.....not in UK officer!) so it never bothers me if there is traffic.
I'm really as weak as I thought I was though, because after walking only a few yards the pain kicked in, my fault, I don't remember to change my Fentanyl patch when I should (suffering nausea, headache, drowsiness and general drugged up feeling today from new one last night - urgh). We wandered around some antique shops looking at lots of pretty sparkly things but I wasn't really in a shopping mood and I've got as much stuff as I need (costume jewellery obviously) so it was a cheap day! Bonus. Most of the time we just sat nattering in Susie's lovely apartment on squashy sofas. She'd got a BT engineer there (5 hours poor bloke) on and off trying to sort her broadband and TV out.
Susie is brilliant for funny stories, I'm convinced it's just her way of retelling a story that makes me giggle, rather than the content, but then again....she does get into some hilarious situations. Also she doesn't hide behind "Oh...how are you, are you OK? Oh you poor thing. You'll beat it this time, you did before." or any other trite remarks that really make me want to punch people on the nose whilst wearing VERY large sharp edged rings (I don't really feel quite so strongly any more). Susie is real, like all my other true friends. She says it like it is, but isn't hurtful. I can talk to her about dying in the same way we talk about anything else, not the actual dying bit, just the fact that I know it's a lot nearer for me. I know I'm going to get a lot worse in the small hope I'll then be able to rebuild myself and feel a lot better for longer.
2010 14th November - Getting Things Off My Chest (Sadly Not The Tumours)
At the risk of perhaps upsetting people....I had a jovial conversation with Susie yesterday about some comments that I find upsetting. We genuinely were laughing at people's insensitivity and possibly at the same time congratulation ourselves on being superior beings. (In my case that's probably wrong because my mouth often engages light years before my brain and I've got a razor attached to my tongue, so I'm sure someone, somewhere has compiled a list on things I've said that have upset them, but this blog is about me), so......here's a few corkers:
They make some lovely wigs now.
You'll look great bald as you do now.
You beat it before, you'll do it again.
We'll fight it together. (This usually from people who never text, call, email, visit etc.)
Hope you feel better soon.
Are you OK?
These are probably personal to me, and my reaction is often dependent on how I feel emotionally and physically when I receive them, also in what medium - if face to face, mid conversation then again my reactions vary.
My desired responses on the third day of chemo would be:
So f*cking what, that is NO substitute for MY hair which I loved, my eyebrows, eyelashes, pubic hair. They don't last long, you can't get them free, it's a nightmare finding one to suit. You can't open a hot oven door or cook over steaming pans with your average NHS wig - steam and heat ruins them. Wigs do NOT cure cancer or make me feel physically better. Yes, having one will marginally increase my self esteem, I hope, when I finally give up on what hair I have left. It will enable me, with a LOT of effort replacing brows and lashes and make up, to not feel like a freak, or look like I have cancer from a distance. For that I am grateful but it really is not going to change my life.
No I bloody won't look great bald, my hair makes my face look much better when it's long and styled the way I know suits me. I will look like a bald woman, like I have cancer. Which I do. Every time I pick tens of hairs off my clothes many times a day, brushing out hundreds every day it makes me cry. I don't look great now, mostly I look drawn, pale, dried out, black shadows round my eyes and ill. I am still managing to put make up on and conceal all of those things quite well I believe, when I leave the house. So, actually I thank you for complimenting my make up skills if you think I look great now!
But still, expecting me to look great bald is just asking too much of me, I don't need the pressure.
I did NOT beat cancer last time - it didn't go away, the other tumours just were too small to be seen until this year. I can NOT beat it this time, my CANCER SPECIALIST says so, unless you have a secret cure you'd like to share with me? It's in my lungs - that means I will die with those tumours in my lungs. Fact. Unless of course I can get back into daily meditation, yoga, consuming my body weight in chlorophyll daily and manage to convince the universe to make them go away.
We'll fight it together - I beg your pardon, but does that mean you'll take half my tumours? Half the drugs? Half the pain, or the side effects? Will you give me half of your life expectancy? What can anyone but ME do about my situation that constitutes fighting it? I don't really like the fighting analogy myself, there's enough of a scrap for ownership of my cells between those who are welcome and the mutants, I'd rather assist my healthy cells than fight the mutants. Fighting is so negative (says she mentally punching people on the nose).
You hope I feel better soon? I should clarify - from people who know the cycle, that I start to climb back up to an increasingly lower level of "normal" by the Sunday following chemo - or those who know I've just started taking new drugs for another side effect and specifically relate the hope to that situation, then, thank you. To my actual blood relatives who clearly don't understand the concept of incurable and have no idea still, of anything I've been through the last four years, preferring to delight me with tales of their own health issues (OMG, you had to have 3 blood tests in two months, you poor, poor thing, I have at least one needle in my arm every week, I shall probably be back to injecting myself with growth hormones daily every chemo when my neutraphils drop, but yes, on hearing my news, I realise how selfish I am not to consider your awful situation at having blood tests)...to them I ask, how do we share the same genes? How do you get to live in this bubble where you don't understand how awful this all is for me and those closer to me, yet I have to try and make you feel better because you are now feeling so bad, so upset and so guilty about my situation.
No I am bloody well NOT OK. Which bit of me, which aspect are you enquiring about anyway, could you be more specific please? Or did you think I just got cured overnight?
There are a couple of people who can ask me this question and will never elicit anything like anger. That's because they talk to me every day, they know my moods are all over the place, and between us, OK, means "coping". Also, when I tell them how I feel, they discuss it with me, if I want to, offering suggestions or viewpoints I might be able to adopt which will improve the situation. E.g. "today I just can't see the point in continuing with the chemo, pain aside, I felt well before, I was going out, I had my hair, I was a healthy weight, my clothes fit me, I could drive around, hold a conversation, be fun to be with. Now I just exist, dragging myself from day to day and for what? To possibly live another few months? What if I never recover sufficiently from the chemo to enjoy those few months?" Hayley said "I thought you were doing this and rewarding yourself with our trip to Rome?". Oh yes, I forgot I'm aiming to revisit Rome! Instant increase in positivity - small, but an increase. Happy thoughts of my last visit are now in my head. I just need reminding of specific events with unconfirmed dates I can definitely look forward to, not the ones I've planned that chemo will ruin because I'm too sick to go, the ones after chemo.
I have exaggerated things somewhat here, otherwise it would just be dull, but there is a fair bit of truth in how "things people say" can be meant to offer support and encouragement but actually do the opposite.
Enough of that whining, but seriously, if you are the cancer free one in a conversation, just bite your tongue and discuss the weather or a TV programme to assess their mood and have a think about what you're really saying or asking before you go ahead? If you're genuinely upset or concerned for them, just man up and say it, but back that up with a solution. Just don't dwell on how hard it is for you too much eh? We don't need the extra guilt.
"I wish you didn't have to go through this, and it upsets me that I can't help you, but would you like to go and see a film, or hire a DVD if you're not up to leaving the sofa, visit somewhere just for a change of scenery, I'll drive?"
Lady D offered to help me do some decorating, but after hearing of her lack of knowledge of undercoat and gloss paint..........I politely declined :0)
If you offer to do something, make it specific, make a date for it and DO it. Don't mention something you might do on a day that never comes, leaving someone clinging to that small thing to look forward to and have yet more hopes dashed.
Don't ask about what needs doing, just do something, anything. Take control, don't make a patient feel like a burden, or a patient, just do it as if it's perfectly normal - don't make a big deal out of "being helpful". Really, if someone turned up to your house with some home made cooking (in my case that's a big ask, but we're not all wheatfree vegan freaks) when you had a bad cold, would you be offended or turn it down? If a visitor just disappeared and waved the mop over your kitchen floor whilst they boiled your kettle to make you both a drink, when you had a bad cold, would you be offended, really? What about if someone just popped round for 10 minutes with a bag of fruit, some yoghurts, a loaf of bread, pint of milk - just so you don't run out and don't have to drag yourself out when you're feeling a bit rough, then buggered off again to let you sleep. I doubt it very much, and being ill from cancer or its treatments is no different. In fact, we should do that more often when people do have colds and minor illnesses just for practice. I include myself in that, I've delivered flu remedies and the odd loaf of bread, I did once drive over to Susie's and construct a healthy salad for her when she'd been in hospital with a bad asthma attack (looked like she had two black eyes, scared the hell out of me, and that was when she'd been released) because I know how hard it is to feed yourself when you're ill.
My cousin, bless her, is possibly the best friend or neighbour you'd want in these situations, I asked her to pick up a bunch of carrots when she visited, maybe some Morrisons version of frazzles (high in protein). She turned up with a stack of reading material and half a cupboard of very carefully selected "treats". And she lives over an hour and a half away. She even managed to hide her disappointment when I got irrationally scared about sugar content in the treats and dismissed them rudely, later realising they have the same ingredients as my raw vegan truffles and therefore totally suitable.
We could all do more, small things to make other people's lives that bit better. These days I'm limited to being chatty and friendly to shop or hospital staff, or letting drivers out in front of me in heavy traffic. I've seen so many rude patients, rude shoppers and there's just no need. These people see lots of people all day, why not try and put a smile on their face when you're interacting with them, or at least be polite? It really does make you feel better yourself you know. (Have I evened up my karma yet following my initial bitching?)
Monday 8 November 2010
2010 8th November - Chemo Round 3 - Cycle 2
I hate Evil Irene, more than the tumours.
Tuesday - after waking with a splitting headache, I drove to hospital feeling more positive with a better plan of how to deal with things this time.
First stop was clinic to see The Lone Ranger regarding anti-emetics, told him it took me an hour to eat an apple, all day to drink a pint of water, etc. He just recommends a change in anti-emetics, no change in dose. Awesome.
Over to the chemo suite. Managed to read for a bit until I couldn't see properly because of the effects on my vision (not sure I should mention this given I was driving and unaccompanied). Started with Granisetron, given more to take home - only one a day starting on day 2 and some others IF they don't work.
I was there about 5.5 hours altogether, mostly waiting for my drugs to take home - which the "nice young man" delivered. I noticed he's had his haircut but was too knackered to comment. Although I had made an effort and put make up on, done my hair etc (ignoring the fact that since day 14 my hair is coming out already too fast for my liking).
Irene makes me produce more saliva (I checked, it's her fault) which usually is a pre-cursor to me hurling. I spat the first mouthful out of the window, some of which got blown into my hair, which made me feel kinda sick in itself. I got home at five thirty/sick o'clock. Got out of the car, spat another mouthful of saliva, which I just can't swallow, really. Got to the back door and spat another mouthful........unlocked the door and just made it to the sink (thank you for my repeated insistence on that extra half bowl whenever I install a new kitchen) to bring up what was left of my lunch I'd made the night before and eaten in the chemo suite. Not the best start. Still, I felt a bit better and decided a spittoon was required (a mug) and many hot drinks of the herbal ginger variety.
Day 2 - Wednesday
Every time I brush my hair it makes me feel sick, all that mass of dead cells I have to keep pulling out and putting in the bin, only to have small clumps hanging out of my hair which I feel obliged to remove before they end up on the floor.
Becky came to see me at lunchtime and compared to last week, I was doing a lot better, I don't feel as sick. As the evening wore on though, my tongue swelled more, the cramps were well in a routine of what felt like every 15 minutes, the abdominal spasms that put pressure on the anastamosis so low down in my pelvis and make me feel like something is trying to leave my body through the join instead of the usual route. Stupidly I didn't realise that this was constipation already or still.......until later in the day when I took one senokot. Two is the dose but two act so fast, it scares me - supposed to be 10 to 12 hours, but for me it's 2 hours and quite frightening when you've not got the same internal anatomy as other people. Things didn't improve much so I was kept awake by the worst spasms and manage to doze propped up on four pillows - getting up occassionally to go to the toilet, to not much avail. I'm sure I was sick at some point on Wednesday, but it's a bit of a blur as to when.
Day 3 - Thursday
When Mike arrived I'd still not mustered the energy or will to get dressed, much less a shower but I managed to brush my teeth and find something different to wear than on Tuesday. First rule of being a Cancer Vixen and BB is - never wear the same outfit in the same week to hospital. My hair looked ropey so I shoved on a hat - which the chemo receptionist liked. He drove Izzy, the first person to do so - but I promised since he'd come all this way again so soon by way of a thank you. We won't mention that he accidentally did nearly 4000 revs in 1st gear, no, because that might make me cry (seriously, I know she'll live and apart from that the drive was fine). Sister thought I looked "very tired". Oncos are all on holiday for my next cycle but she said "someone" will see me. I've forgotten if that's if I need to, or just someone will see me anyway but having seen my blood results after the first one, I'm hoping I'll be deferred. White cells halved from 6 to 3, and those all important neutraphils from 4.6 to 1.8 (neutropenia starts when they get as low as 1.5). There were a few others that were outside normal range (i.e. below).
When we got back, I just sort of collapsed on the sofa, then had to get up at some point and run to that half bowl again in the kitchen. God that hurt, trying to keep things down whilst retching. I really, really hate being sick. Since my first migraine at 11 when I ended up in hospital - unable to keep water down without bringing it back up and in a room on my own with suspected meningitis. Every migraine brought blindness, bile and excruciating pain. Over the years they got easier but my fear of being sick is quite great. Four pregnancies didn't help either. I can't remember what I ate, but before he had to leave, Mike put a Linda McCartney pie (yes it has wheat and possibly egg, but it's chemo day so calories and protein are King) in my oven after he loaded the dishwasher for me. He watched hours of shite daytime TV while I just dozed and tried to ignore the ever increasing pains. Gosh I bet he's so glad he came! I was though, for the change of company, for any company, anything to stop THIS becoming a predictable routine. For his attempt to make me feel better when I was throwing up, for holding my hair out of the way, fetching me drinks. For not making me feel like he needed to be entertained - I took this for granted since he's seen me do this before. I'm sure I wasn't this bad before, was I?
The Linda McCartney pie stayed down. Another night of Pain Interrupts Sleep. Another dose of senna.
Day 4 is a blur - Becky came after work and again on Saturday (day 5) but I can't remember what happened when. I know mostly I just laid on the sofa trying to ignore the pains (double dose of senokot on Saturday) while she washed up and fed Alfie. Alfie somehow survived two lots of chemo and neglect - I think she's been fed every day, but not always twice. I was back to being too scared to eat because I knew that the solid hard painful lump in my left side wasn't going anywhere, so until the senna kicked in, it was liquids only.
Day 6 - Sunday - Finally after much shouting and sobbing (and I use this term in is very broadest sense, not to any specific religion, I don't have one) actually praying for it to stop, it started to work. Which was lucky because if things weren't moving by daylight I was calling an ambulance. I remember reading a book by a woman who just put up with blockages caused by scar tissue (bowel cancer, caused by radiation) and being angry at her for not going to hospital, but she did have a husband, a few kids and a mother on the scene who were quite capable of calling one for her. And before anyone kicks off asking why I didn't ring someone else - I think you've missed the point. The pain was so frequent, so debilitating, I was so exhausted, just framing the thought was a minor miracle, how I'd have managed to get my details out over the phone I'm not sure, but senna hasn't let me down yet, I just didn't have enough soon enough. I know that now. Nor is there a single person on this earth I would want to see me in the state that I was, I don't care what anyone thinks. I have very little dignity or control left and if I'd rather be dealt with by strangers, that's my choice. Deja vu from the fortnight before then. Finally the spasms stopped and I managed a few hours sleep on Sunday morning.
Sometime in the afternoon I dragged myself into the shower. Excellent timing again because the kids arrived when I was still in my bathrobe and a towel holding my hair onto my head looking kinda scary and pale from the effort of actually showering for the first time since Tuesday. I got dressed and we tried to watch the rest of the film they didn't quite see last time - but unfortunately their dad arrived within what seemed like half an hour. Any time he grants me with them at his own effort is something to be eternally grateful for, since he hates me. It did make me feel instantly better when I saw them, and even that short time drinking tea and eating pretzels laughing at a film was precious. So the rest of the evening I watched comedy shows and then finished my book having finally felt why I'm putting myself through this shit. It's just for my babies who aren't quite grown up yet. Sadly they've grown enough to understand what the deal is this time and I couldn't be more proud that they come here, put the kettle on, glue themselves to the sofa and just sit to watch a film with me, laughing. Forgetting for half an hour.
Today is Monday. I finished my book with a smile on my face. I had another few hours uninterrupted sleep last night. So here begins the slow climb back to some semblance of strength before the next onslaught. So senna on day one next time, the Granisetron and maybe it'll be third time lucky. I'm back in tomorrow for a line flush so I'll see what they say. I should chase up the sip feeds that never materialised either - I forgot, but never heard from the surgery or the district nurse. I'm definitely out now so they'll have to pull their fingers out.
Two down, 10 to go.
Don't do cancer kids, it's bad for you mmkay?
Tuesday - after waking with a splitting headache, I drove to hospital feeling more positive with a better plan of how to deal with things this time.
First stop was clinic to see The Lone Ranger regarding anti-emetics, told him it took me an hour to eat an apple, all day to drink a pint of water, etc. He just recommends a change in anti-emetics, no change in dose. Awesome.
Over to the chemo suite. Managed to read for a bit until I couldn't see properly because of the effects on my vision (not sure I should mention this given I was driving and unaccompanied). Started with Granisetron, given more to take home - only one a day starting on day 2 and some others IF they don't work.
I was there about 5.5 hours altogether, mostly waiting for my drugs to take home - which the "nice young man" delivered. I noticed he's had his haircut but was too knackered to comment. Although I had made an effort and put make up on, done my hair etc (ignoring the fact that since day 14 my hair is coming out already too fast for my liking).
Irene makes me produce more saliva (I checked, it's her fault) which usually is a pre-cursor to me hurling. I spat the first mouthful out of the window, some of which got blown into my hair, which made me feel kinda sick in itself. I got home at five thirty/sick o'clock. Got out of the car, spat another mouthful of saliva, which I just can't swallow, really. Got to the back door and spat another mouthful........unlocked the door and just made it to the sink (thank you for my repeated insistence on that extra half bowl whenever I install a new kitchen) to bring up what was left of my lunch I'd made the night before and eaten in the chemo suite. Not the best start. Still, I felt a bit better and decided a spittoon was required (a mug) and many hot drinks of the herbal ginger variety.
Day 2 - Wednesday
Every time I brush my hair it makes me feel sick, all that mass of dead cells I have to keep pulling out and putting in the bin, only to have small clumps hanging out of my hair which I feel obliged to remove before they end up on the floor.
Becky came to see me at lunchtime and compared to last week, I was doing a lot better, I don't feel as sick. As the evening wore on though, my tongue swelled more, the cramps were well in a routine of what felt like every 15 minutes, the abdominal spasms that put pressure on the anastamosis so low down in my pelvis and make me feel like something is trying to leave my body through the join instead of the usual route. Stupidly I didn't realise that this was constipation already or still.......until later in the day when I took one senokot. Two is the dose but two act so fast, it scares me - supposed to be 10 to 12 hours, but for me it's 2 hours and quite frightening when you've not got the same internal anatomy as other people. Things didn't improve much so I was kept awake by the worst spasms and manage to doze propped up on four pillows - getting up occassionally to go to the toilet, to not much avail. I'm sure I was sick at some point on Wednesday, but it's a bit of a blur as to when.
Day 3 - Thursday
When Mike arrived I'd still not mustered the energy or will to get dressed, much less a shower but I managed to brush my teeth and find something different to wear than on Tuesday. First rule of being a Cancer Vixen and BB is - never wear the same outfit in the same week to hospital. My hair looked ropey so I shoved on a hat - which the chemo receptionist liked. He drove Izzy, the first person to do so - but I promised since he'd come all this way again so soon by way of a thank you. We won't mention that he accidentally did nearly 4000 revs in 1st gear, no, because that might make me cry (seriously, I know she'll live and apart from that the drive was fine). Sister thought I looked "very tired". Oncos are all on holiday for my next cycle but she said "someone" will see me. I've forgotten if that's if I need to, or just someone will see me anyway but having seen my blood results after the first one, I'm hoping I'll be deferred. White cells halved from 6 to 3, and those all important neutraphils from 4.6 to 1.8 (neutropenia starts when they get as low as 1.5). There were a few others that were outside normal range (i.e. below).
When we got back, I just sort of collapsed on the sofa, then had to get up at some point and run to that half bowl again in the kitchen. God that hurt, trying to keep things down whilst retching. I really, really hate being sick. Since my first migraine at 11 when I ended up in hospital - unable to keep water down without bringing it back up and in a room on my own with suspected meningitis. Every migraine brought blindness, bile and excruciating pain. Over the years they got easier but my fear of being sick is quite great. Four pregnancies didn't help either. I can't remember what I ate, but before he had to leave, Mike put a Linda McCartney pie (yes it has wheat and possibly egg, but it's chemo day so calories and protein are King) in my oven after he loaded the dishwasher for me. He watched hours of shite daytime TV while I just dozed and tried to ignore the ever increasing pains. Gosh I bet he's so glad he came! I was though, for the change of company, for any company, anything to stop THIS becoming a predictable routine. For his attempt to make me feel better when I was throwing up, for holding my hair out of the way, fetching me drinks. For not making me feel like he needed to be entertained - I took this for granted since he's seen me do this before. I'm sure I wasn't this bad before, was I?
The Linda McCartney pie stayed down. Another night of Pain Interrupts Sleep. Another dose of senna.
Day 4 is a blur - Becky came after work and again on Saturday (day 5) but I can't remember what happened when. I know mostly I just laid on the sofa trying to ignore the pains (double dose of senokot on Saturday) while she washed up and fed Alfie. Alfie somehow survived two lots of chemo and neglect - I think she's been fed every day, but not always twice. I was back to being too scared to eat because I knew that the solid hard painful lump in my left side wasn't going anywhere, so until the senna kicked in, it was liquids only.
Day 6 - Sunday - Finally after much shouting and sobbing (and I use this term in is very broadest sense, not to any specific religion, I don't have one) actually praying for it to stop, it started to work. Which was lucky because if things weren't moving by daylight I was calling an ambulance. I remember reading a book by a woman who just put up with blockages caused by scar tissue (bowel cancer, caused by radiation) and being angry at her for not going to hospital, but she did have a husband, a few kids and a mother on the scene who were quite capable of calling one for her. And before anyone kicks off asking why I didn't ring someone else - I think you've missed the point. The pain was so frequent, so debilitating, I was so exhausted, just framing the thought was a minor miracle, how I'd have managed to get my details out over the phone I'm not sure, but senna hasn't let me down yet, I just didn't have enough soon enough. I know that now. Nor is there a single person on this earth I would want to see me in the state that I was, I don't care what anyone thinks. I have very little dignity or control left and if I'd rather be dealt with by strangers, that's my choice. Deja vu from the fortnight before then. Finally the spasms stopped and I managed a few hours sleep on Sunday morning.
Sometime in the afternoon I dragged myself into the shower. Excellent timing again because the kids arrived when I was still in my bathrobe and a towel holding my hair onto my head looking kinda scary and pale from the effort of actually showering for the first time since Tuesday. I got dressed and we tried to watch the rest of the film they didn't quite see last time - but unfortunately their dad arrived within what seemed like half an hour. Any time he grants me with them at his own effort is something to be eternally grateful for, since he hates me. It did make me feel instantly better when I saw them, and even that short time drinking tea and eating pretzels laughing at a film was precious. So the rest of the evening I watched comedy shows and then finished my book having finally felt why I'm putting myself through this shit. It's just for my babies who aren't quite grown up yet. Sadly they've grown enough to understand what the deal is this time and I couldn't be more proud that they come here, put the kettle on, glue themselves to the sofa and just sit to watch a film with me, laughing. Forgetting for half an hour.
Today is Monday. I finished my book with a smile on my face. I had another few hours uninterrupted sleep last night. So here begins the slow climb back to some semblance of strength before the next onslaught. So senna on day one next time, the Granisetron and maybe it'll be third time lucky. I'm back in tomorrow for a line flush so I'll see what they say. I should chase up the sip feeds that never materialised either - I forgot, but never heard from the surgery or the district nurse. I'm definitely out now so they'll have to pull their fingers out.
Two down, 10 to go.
Don't do cancer kids, it's bad for you mmkay?
Monday 1 November 2010
2010 29th October - WIGIG (When It's Gone It's Gone)
Friday - I was still tired having been too excited to sleep much the night before but was up fairly early to go to Woodhall Spa to Glenn James for my wig fitting.
When I rang the shop on Thursday (whilst waiting for Hayley to get her emergency "the rules for selling lenses in the UK are different to France" eye test) the lady who answered the phone sounded lovely, I said I had just started chemo with some drugs that were known to make hair fall out considerably and would like to book an appointment before sending payment to the hospital trust. She said that was the best idea, since if I gave her the cheque and the form I'd be able to take a wig away the same day rather than wait for it to clear and they would post it off. She checked when my next chemo was to make sure I came in when I was feeling at my best - luckily had an appointment in the morning.
It's not a bad drive to Woodhall Spa at all, fairly straight road through New York where I couldn't help but take THIS. Hayley and I had planned to go to New York in November/December to celebrate our 40th birthdays (hers is on Burns night). So, I may have been alone, I may have been looking worse for the lack of sleep and no make up and the wind in my, MY hair but I DID get to go to New York and they put up a sign for me especially.
I parked in the prettiest Budgens car park ever (in a proper brick building that looks like the old railway houses that used to be on the site). It was the same lady I spoke to on the phone. She made me a green tea after I mentioned I don't like cow's milk and we had a chat for a bit, I think so she could figure out what sort of person I am and what sort of wig would suit me. We went through the back room where there's a chair and a dressing table (very French looking) and floor to ceiling boxes of wigs on two walls - one wall having mirrored sliding doors.
She'd picked out a few shorter wigs because I'd said I had it short last time when it went very thin, but really I'd like something long. Ideally both, but you know, we're not rolling in it are we, cancer patients? One of them would have suited Katie Holmes perfectly - it was a long neat bob. It looked awful, but you have to think about why it's wrong so you can find what's right...it was too twee - and apparently I'm "more rock chick" :0) . Also my hair is fine, very fine so a lot of the wigs just had too much hair and too much height and drowned my face. I tried a few short ones on, three were good, in fact the shortest one would have been ideal for Hayley to rescue her French do, but it was in European burgundy. Now I dyed my hair that colour and many, many shades of red, brown, blue, etc but after the 90s burgundy just became a bit "wrong" but I do see it a LOT in the local Asda. So, not wanting to look like I was stuck in a time warp or from a different country I rejected it. Another was very close to a previous cut, but the colour was just wrong - too blonde, it made me look ill.
I lost count of how many I tried on. Several people came in to the shop including a woman who was on her third cut of regrowth - starting to lose the initial fuzzy fluffy mess that appears first and not liking it - having previously had a blonde bob but now looking and feeling "old fashioned". This lady came back just a few minutes before we managed to find The One. The whole process had taken 2 hours. At no point did I ever feel rushed or as if I was being persuaded to choose any particular style. She could tell by my face that this last one was the most like my own hair, it's a bit flyaway at the front, has a long fringe, streaks of reddish brown and blonde in it (as I've had many times before). They all seem to part on the left for some reason and I've been parting mine on the right for a few years now but this one was more central. There isn't much weight on the top so even with my own hair underneath the wig bulking it out it looks like it could be my hair.
As luck would have it - even though it's a Noriko wig (some of the ones I coveted on the internet were Noriko and around £160 upwards) because of the material inside the wig it is actually available on the NHS for £60. Apparently it has nothing to do with the make, merely the method of making the top section that increases the price. I don't go to work, I don't go out very often, I don't have many visitors so realistically how often am I going to really want to wear it? Three times a week on chemo week, once a week the week after. Plus any time I go shopping. But I like it and I know I'll feel safe wearing it and if I can master false eyelashes and either drawing or stick on eyebrows I think I'll risk going out given the opportunity (and being well enough to go through the whole getting ready process).
I bought some shampoo and conditioner and then had a little tear and a hug - happy tears that I'd managed to find one that day and didn't have to go through the process all over again or try ordering something that wouldn't suit, or having an expensive hand made wig. (I really can't remember the lady's name, but she runs the shop with her sister who is normally there too but was sadly at a funeral) She told me to ring if I ever needed any advice or even if I just wanted to talk or rant at someone. She also made sure I knew about the Look Good Feel Better course. I rang Lincoln today, left a message. She's going to the next one as a spectator but it's on a planned chemo week (blood results will confirm obviously) which means I'm unlikely to be up to the hour drive let alone sit through anything even for a goody bag. We'll see how this week goes first.
Today is Monday as I write this and I washed, conditioned and dried my hair, brushing it first as always - there seemed to be a lot of hair in the brush. Throughout the day as I run my fingers through my hair or just pull a single hair that's just hanging two inches below the rest - about 20 come out (yes I did sit and count them a couple of times to try and establish if this is normal, I know it's not). I don't know what to do when it comes to it, shall I get it cut short quickly and see if I can keep my own hair for a while, or just shave it and go straight to hats, scarves or my wig? Hmm....I don't care that people might see me with short hair, then long hair, not at all so that's not an issue. I just wonder if I should hang onto the length until it looks bad or skip the looking bad stage. As ever..........I'll see what happens and go with the flow. It does help that I have a friend who is a hairdresser (although currently enjoying as I did, a few years off while the kids are small). I might just ask her if she fancies sneaking in a quick crop as well as accompanying me to chemo one time soon. Or just shave it off myself. Aggghhhhh. Too many options!
Right, best get some kip and get up early and start stuffing my face. I'm going to feed myself up tomorrow and hope that keeps the sickness at bay with whatever options Dr Tom or The Lone Ranger offer.
Night all. x
When I rang the shop on Thursday (whilst waiting for Hayley to get her emergency "the rules for selling lenses in the UK are different to France" eye test) the lady who answered the phone sounded lovely, I said I had just started chemo with some drugs that were known to make hair fall out considerably and would like to book an appointment before sending payment to the hospital trust. She said that was the best idea, since if I gave her the cheque and the form I'd be able to take a wig away the same day rather than wait for it to clear and they would post it off. She checked when my next chemo was to make sure I came in when I was feeling at my best - luckily had an appointment in the morning.
I parked in the prettiest Budgens car park ever (in a proper brick building that looks like the old railway houses that used to be on the site). It was the same lady I spoke to on the phone. She made me a green tea after I mentioned I don't like cow's milk and we had a chat for a bit, I think so she could figure out what sort of person I am and what sort of wig would suit me. We went through the back room where there's a chair and a dressing table (very French looking) and floor to ceiling boxes of wigs on two walls - one wall having mirrored sliding doors.
She'd picked out a few shorter wigs because I'd said I had it short last time when it went very thin, but really I'd like something long. Ideally both, but you know, we're not rolling in it are we, cancer patients? One of them would have suited Katie Holmes perfectly - it was a long neat bob. It looked awful, but you have to think about why it's wrong so you can find what's right...it was too twee - and apparently I'm "more rock chick" :0) . Also my hair is fine, very fine so a lot of the wigs just had too much hair and too much height and drowned my face. I tried a few short ones on, three were good, in fact the shortest one would have been ideal for Hayley to rescue her French do, but it was in European burgundy. Now I dyed my hair that colour and many, many shades of red, brown, blue, etc but after the 90s burgundy just became a bit "wrong" but I do see it a LOT in the local Asda. So, not wanting to look like I was stuck in a time warp or from a different country I rejected it. Another was very close to a previous cut, but the colour was just wrong - too blonde, it made me look ill.
I lost count of how many I tried on. Several people came in to the shop including a woman who was on her third cut of regrowth - starting to lose the initial fuzzy fluffy mess that appears first and not liking it - having previously had a blonde bob but now looking and feeling "old fashioned". This lady came back just a few minutes before we managed to find The One. The whole process had taken 2 hours. At no point did I ever feel rushed or as if I was being persuaded to choose any particular style. She could tell by my face that this last one was the most like my own hair, it's a bit flyaway at the front, has a long fringe, streaks of reddish brown and blonde in it (as I've had many times before). They all seem to part on the left for some reason and I've been parting mine on the right for a few years now but this one was more central. There isn't much weight on the top so even with my own hair underneath the wig bulking it out it looks like it could be my hair.
As luck would have it - even though it's a Noriko wig (some of the ones I coveted on the internet were Noriko and around £160 upwards) because of the material inside the wig it is actually available on the NHS for £60. Apparently it has nothing to do with the make, merely the method of making the top section that increases the price. I don't go to work, I don't go out very often, I don't have many visitors so realistically how often am I going to really want to wear it? Three times a week on chemo week, once a week the week after. Plus any time I go shopping. But I like it and I know I'll feel safe wearing it and if I can master false eyelashes and either drawing or stick on eyebrows I think I'll risk going out given the opportunity (and being well enough to go through the whole getting ready process).
I bought some shampoo and conditioner and then had a little tear and a hug - happy tears that I'd managed to find one that day and didn't have to go through the process all over again or try ordering something that wouldn't suit, or having an expensive hand made wig. (I really can't remember the lady's name, but she runs the shop with her sister who is normally there too but was sadly at a funeral) She told me to ring if I ever needed any advice or even if I just wanted to talk or rant at someone. She also made sure I knew about the Look Good Feel Better course. I rang Lincoln today, left a message. She's going to the next one as a spectator but it's on a planned chemo week (blood results will confirm obviously) which means I'm unlikely to be up to the hour drive let alone sit through anything even for a goody bag. We'll see how this week goes first.
Today is Monday as I write this and I washed, conditioned and dried my hair, brushing it first as always - there seemed to be a lot of hair in the brush. Throughout the day as I run my fingers through my hair or just pull a single hair that's just hanging two inches below the rest - about 20 come out (yes I did sit and count them a couple of times to try and establish if this is normal, I know it's not). I don't know what to do when it comes to it, shall I get it cut short quickly and see if I can keep my own hair for a while, or just shave it and go straight to hats, scarves or my wig? Hmm....I don't care that people might see me with short hair, then long hair, not at all so that's not an issue. I just wonder if I should hang onto the length until it looks bad or skip the looking bad stage. As ever..........I'll see what happens and go with the flow. It does help that I have a friend who is a hairdresser (although currently enjoying as I did, a few years off while the kids are small). I might just ask her if she fancies sneaking in a quick crop as well as accompanying me to chemo one time soon. Or just shave it off myself. Aggghhhhh. Too many options!
Right, best get some kip and get up early and start stuffing my face. I'm going to feed myself up tomorrow and hope that keeps the sickness at bay with whatever options Dr Tom or The Lone Ranger offer.
Night all. x
Sunday 31 October 2010
2010 28tht October - Here Are Your Real Presents
So my birthday was 12 hours of solid fun, laughs, love and general good stuff in great company. Additional bonuses were cash, flowers and pretty cards. I was lucky enough to get some lovely presents which were
The postman delivered the expected cards including a very wearable solid silver bracelet from Aunty Susan (I still have one she bought me about 30 years ago).
Hayley delivered her father in law with a hedge trimmer and filled flasks with tea to keep him going and washed up yet again, having cleaned my floor the day before and cleaned some windows, while I opened my post. And a "I love it, that's so me!" necklace made by a French artisan whose work she drools over when she's in Fougeres.
Hayley managed to park almost in a bus stop but legally and very close to town and we went for lunch in Prezzos (the nicest place to eat in Boston aesthetically). It was a lovely sunny day and we opted for a window table and were both instantly reminded of our lunch out in Rennes sat in the sun back in June. We ordered Prosecco, olives and dithered over the main courses. As I was eating whatever I fancied, but with no appetite I considered chicken for the protein but went for crab cakes in marsala sauce. Hayley had chicken and mushrooms with spinach but there's no way I'd have eaten all that! The potatoes I had with my crab cakes were untouched (I was quite impressed I managed four small crab cakes!). The wine started to make me feel ill (forgot about the opioid patch I had glued to my arm doh) and have no idea how much I drank but left a full glass - Hayley's was empty (odd that).
Onto the shops! I don't really remember us ever going clothes shopping before ever, hanging around in town yes, actual spending money on anything but beer or cider, no. I tried approximately 8 dresses on in Dorothy Perkins - including a perfectly fitting size 8 - which we all know is really a size 10 in that shop, but still, I wanted it! Despite initial doubts I followed advice and went for the navy one with a jewel encrusted neckline (more bling) found some bracelets to go with it and also a large pendant watch just because I keep looking at it every time I go in the shop, it was my birthday and H said "buy it!". So that took care of the cash from my parents - none of my own money spent so far! (I don't have any money except back pay from DLA which is making up the difference between £79.15 weekly sick pay and usual salary so this is VERY good).
H picked out a long, but not full length horizontal striped clingy dress for me to try on. Now following the two ops to my abdomen I have odd shaped lumps and following 4 pregnancies with 5 babies they're made from a spare tyre that will never go. But, I'm resembling the stick like figure I was when I was 17, I was with my oldest friend and actually, despite having to stop and rest like an old woman, I felt 17. I also don't have any underwear that fits any more, well a couple of necessary items from BC (before cancer) days that managed to hide at the back of a drawer and luckily lycra makes a lot of it passable. There was a display of Monsoon lingerie outside the changing rooms..........well, if you're trying on the world's clingiest dress, you need some decent structural support don't you? THAT receipt was worthy of a 40th birthday and came out of money my mum gave me to go to Dublin with. So again not needing to touch the DLA back pay. Doing well!
A couple more shops and I managed to spend (having checked) just about all the money I've been given to spend on me - which in 40 years I have NEVER done before with money for my birthday. I've paid off debts, paid a bill, bought some nice food instead of scrimping for me and the kids or put it towards Christmas presents. Instead of feeling selfish, I felt justified. I mean, I may never be this well on my birthday ever again - it's all about now.
There is a book I keep meaning to get hold of - must check Amazon - called Burnt Toast I think, about mothers who always put everyone else first, eat the leftovers but never a full meal, if toast is burnt they eat it rather than let anyone else. Part of my long four years of trying to figure out what caused my particular cancer has included the theory that I hold stuff in, I try to please people. I bottle things up then snap and pop at ridiculously irrelevant moments. People remember the explosions and have no idea about the attempts to please or what's been bottled up. Actually my biggest issue is I constantly feel like I'm failing at pleasing and dwell on that makes me feel worse and probably turned me into a self fulfilling prophecy. Always my own worst critic. If I'm in a foul mood, you can bet your life it's because I made a mistake at work that nobody else remembered 5 minutes afterwards. Me, I'd stew on it for the whole day, if not longer and people would wonder what the hell was wrong with me. What a stupid waste of negative emotion? Does that sound like you? If so I suggest you take as much money as you can afford and go out with your oldest/best friend and blow it on some gorgeous underwear and feel good about it. No man is ever going to see me in it. It's ridiculously expensive compared to basic stuff I could have bought more of but I DO NOT CARE.
40 years to work that one out and I really could have done with that genius stroke of insight 20 years ago before the little bastard started growing.
Just to liven this up a bit I took a photo with the labels still on:
Hayley did actually buy some clothes too - which I'm so pleased about because birthday or not, it's nicer if you're both having some retail therapy. We both got some furry boot toppers that just make ordinary worker boots/boring last year's boots that bit more exciting for winter. I bought a new purse to go with the so "me" new giant satchel/military bag my cousin Jane bought me which is SO me and I only sent her a card (knowing I couldn't pay my mortgage presents have sadly been deemed a luxury, but I have a plan to make up for it in a very small way soon enough). I accidentally bought a bracelet and necklace for Hayley too, because we were having too much fun and the French economy isn't doing any better than it is here for the self employed and she'd paid for flights, then had to pay for a ferry and fuel to get here in the end. And because I love her and I wanted to.
I was knackered by the time she dropped me off - I had a couple of hours to get ready and really wanted a sleep but that would have made me feel worse. Waiting in the utility were a huge bouquet, an I Love You helium balloon and an orchid stem in a vase from one of my BBs and my older sister - who finally read my email on Facebook answering her question of "How are you".
Becky arrived with the cakes (see above) which was such a totally unexpected surprise, I mean I know she is used to what I do and don't eat, but quite when she found the time to even look for someone to make them I'm not sure, between kids and their golf/football, full time job, part time hospital transport and a new husband. She also arrived with substantial presents, some of which, more pretty but not like anything I already have, Accessorize jewellery - one of our favourites. My hair is also courtesy of little sis - because she knew how important it was to look like me on my birthday for one last time. Money doesn't solve a lot when you've got an incurable disease, but applied by the right people with the right intentions it can make a difference many times it's actual value.
We met Maurice and my two (still can't believe how amazing they're being now, last time was very hard for them both) children outside and found Lisa and Jamie inside. Eventually we got served with a pitcher of beer and a couple of spritzers (one of which was mine - wow, two glasses of wine in one day). Mike and Alex were running a bit late having to drive all the way from Sheffield. You may remember St Michael from before - when he lived in Lincoln, still an hour away from me, he used to come over on chemo weeks and cook for me and the kids because I was having such a hard time touching anything from the fridge or holding a knife, walking, standing etc). People are constantly disappointed that despite meeting through a dating site that we have only ever been incredibly good friends. They don't get it. Neither do we! But there it is.
The compere obviously picked on our table, since we were right at the front. He found out it was my birthday and said I looked radiant or something and said he'd come and see me later....later called me a snitch when poor Mike and Alex arrived 5 mins after he'd started because I said they weren't from here (by way of excusing their lateness of course). I thought I'd keep my mouth shut about Hayley coming all the way from France. Unfortunately he asked what I do for a living (really it was like it was my actual party) and I just went blank....and laughing said "I'm permanently sick" which sadly he pressed asking if it was serious and surely I'd get better and the whole table was laughing at his misfortune of pushing such a question with ME out of everyone else who was heckling. (Hayley spoke to him afterwards and assured him I didn't mind at all - I suppose given I was laughing so much he wasn't sure what to think).
 |
The compere also accepted a cake just before the interval.
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| Wayne Deakin Second Act - Wayne Deakin an Australian, I think we liked him more - I'm never sure at these comedy gigs if the line up is in order of funniness, or if you just get into laughing and laugh more as the night wears on. It's never booze with me since I'm rarely able to drink being on treatment of some sort most years. Anyway I bought a signed DVD from him and had a photo and gave him a cake. |
Third Act - Raymond & Mr Timpkins - genius alternative to stand up comedy using song lyrics and props. They are on You Tube.
My children are both mature enough to know a lot more than they would admit to in front of me and I may have allowed them to listen to language and sip the odd drink they're not strictly old enough for.....but so what. I'm 40 now not in 2 years time.
Every time I turned round everyone was laughing, out loud. Proper LOLs all round. I could pick out some laughs without having to look. I had been most worried my daughter would get picked on, she sat at the back of her table, hiding with her hair falls (extensions in bright colours she makes herself, having sported a black and blue mohican at her age, I have no issues with her appearance at all, but the general public do) so I didn't get much chance to talk to her, sat next to her brother. But she was laughing too.
Between them they bought me a Weird Fish bag and I suspect Karys and her boyfriend's nan made the card - which is also lovely made in black and dark red and sparkly jewels on it. The thing about the bag is, separately with each of them, when I've been trying to find clothes to replace my oversized ones with my MacMillan grant, I looked at and stroked the bag.
It was late, a "school" night, although half term for the kids, so we didn't get chance to talk really, but I just wanted to laugh, have fun and be with people I cared about. I couldn't ever get everyone in the same room, it's just not possible, but I needed to have some happy memories and also maybe that's how people can remember me when my hair is gone and I'm actually feeling ill (next Wednesday actually, but let's forget about Irene for now). I bumped into a couple who were our very good friends when I was married, we lived in their house as much as our own but when we divorced and they moved we drifted apart. It was good to see them, they said Karys really hasn't changed, she still has that innocent wide eyed look no matter how aggressively she dresses. Sarah, who also fell foul of dirty tricks by a mutual acquaintance like I did, and was my neighbour for a while was also there, shocked as I still am by my giant son's growth spurt since she saw him last.
When I got in, I was so happy and excited I couldn't sleep, I kept going over the pictures in my head, the photos I stupidly forgot to take. Then I realised I'd not eaten since lunch so got up and finished off the family sized bag of salsa pretzels I'd scoffed most of the other day. Too excited to sleep AFTER the event? Is that usual? Around 2am I think I fell asleep smiling.
Thursday 28 October 2010
2010 28th October - Happy Birthday (your present is not having chemo today)
I'm doing OK today. In fact I was doing OK from bang on 10am yesterday when my BFF arrived from France. When I was there in June, she knew. She knew I knew. I knew what she knew. We didn't talk about it. I simply said "If I can just sort this pain out, I'll be OK". It's not sorted of course, after realising I had my patch on for a mostly sofa confined week the pain was back last night despite new patch because - wait for it - I walked round Asda. Seriously, oh and sat in the hospital for an hour or so (line flush).
A whole week to recover from just the first dose of Evil Irene? Obviously my dose needs reviewing since I've only managed one week since May/June where I've not lost weight. At some point the change will be enough to warrant a "formula" dose change. I've spoken to the Sister on the chemo suite and we know the bolus drug I had on day 3 helped a lot (as did being taken off the 5FU) so perhaps will start on that and the Domperidone instead of Ondansetron (Bum Bandits and old followers will recognise these as Dom Perignon and Dance-a-thon). I also left a message for community nurse to get me some more Fresubin shake style drinks (blackcurrant and lemon & lime) which, despite my dietary preferences seem to be the ones I can drink when nauseous. I've tried a few over the last four years I can assure you! I've even bought some tinned oily fish - since I did 2.5 months of serious de-tox prior to chemo I think adding 3 (the chemo days) days of fish a week. My body desperately needs the protein and whilst I much prefer the taste, nutrition etc of other sources like green leaves and chick peas or quinoa etc a can of fish I can open, eat, collapse on sofa - much more likely to happen. Even the thought of my own cooking in the freezer made me feel ill last week (and that is a BAD sign in itself). I just need very very plain foods. I'm thinking mashed potatoes with flakes of a small tin of tuna and salad cream (spuds & salad cream - only food that worked when I was hurling 4 times a day when pregnant with twins).
So, I kind of have next week's plan of how to deal with Irene. Thing is, I don't think it's Irene making me sick, I think it's 5FPoo. But we'll blame Irene. Feel better about it already. I also have a freezer draw half full of fresh fruit ice cubes to suck on. Anything for fluids.
Bec's order of service is still on my mantel piece. Whilst staying alive and competent as long as possible is for my children - they are my only real reason for never giving up, no matter how bad things got - I see their faces, or remember their faces and more than once they've saved me from throwing it all in over the last 18 years. But Bec, who never stood a chance at even thinking of starting a family, who had less than 30 years of "normal" life, a wonderful husband, who gave up her free time to be a Samaritan and prison visitor (yes she really was THAT amazing), she's not here any more. It's not fair. It's not fair that I'm here and she's not. So as I promised Ol (Mr Bec) at her memorial service that I would do whatever I can to stay alive, we'd promised to do this together when we got our lung and liver mets news at the same time. When I couldn't drink water last week, I kept looking at her photo and taking another sip. When I felt like ripping the tubes out of my arm I remembered how much more pain she was in. When I realised a whole month had passed since we said goodbye I sent a message to Ol, because she can't. She's my guru. I don't know that she ever wanted that job, but she's got it.
I need to buy some nice photo frames today. Mine seem to have got broken slowly over the years and now I just have none. The photos of my babies are frameless and in drawers and that's awful. I look at them on the PC and I do have a digital frame, but there's something about a framed picture that's just better. I'll probably never get round to finishing decorating the living room (or any other room for that matter) but photos will help.
So today I had gluten free fruit bread toast (vegan marge) and tea (soy milk). My hair is super red again and Hayley is coming, oh crap, in 30 minutes and I'm sat in my dressing gown. We're off to lunch to eat ANYTHING. Oh and last night I ate a huge (5 portions) amount of salsa pretzels - in a desperate bid to gain some weight back. Maybe if I get on top of it I can reduce the amount of "dietary crap" I need to eat just to stay alive - because I KNOW that eating properly is my best ally in the long term, if only I can get over the sickness and anorexia. (That's anorexia in a medical sense, a side effect of whatever the cancer is spewing out and the drugs I'm on etc etc).
Aunty Susan just rang, I'm ready (almost), H is late thankfully. Three small kids she's hauled over the channel on her own just to make my birthday. She's leaving them for hours at a time for me.
(P.S. to Carole, Tony and Carole's mum - thanks for keeping an eye on me, I was just too weak to even use a computer for a couple of days, other than my phone. Tony I did read your awful news and I am so sorry. Liver alone - much better situation and highly treatable even if it's inoperable a first that is subject to change, I've seen it myself in many friends. Best of luck).
A whole week to recover from just the first dose of Evil Irene? Obviously my dose needs reviewing since I've only managed one week since May/June where I've not lost weight. At some point the change will be enough to warrant a "formula" dose change. I've spoken to the Sister on the chemo suite and we know the bolus drug I had on day 3 helped a lot (as did being taken off the 5FU) so perhaps will start on that and the Domperidone instead of Ondansetron (Bum Bandits and old followers will recognise these as Dom Perignon and Dance-a-thon). I also left a message for community nurse to get me some more Fresubin shake style drinks (blackcurrant and lemon & lime) which, despite my dietary preferences seem to be the ones I can drink when nauseous. I've tried a few over the last four years I can assure you! I've even bought some tinned oily fish - since I did 2.5 months of serious de-tox prior to chemo I think adding 3 (the chemo days) days of fish a week. My body desperately needs the protein and whilst I much prefer the taste, nutrition etc of other sources like green leaves and chick peas or quinoa etc a can of fish I can open, eat, collapse on sofa - much more likely to happen. Even the thought of my own cooking in the freezer made me feel ill last week (and that is a BAD sign in itself). I just need very very plain foods. I'm thinking mashed potatoes with flakes of a small tin of tuna and salad cream (spuds & salad cream - only food that worked when I was hurling 4 times a day when pregnant with twins).
So, I kind of have next week's plan of how to deal with Irene. Thing is, I don't think it's Irene making me sick, I think it's 5FPoo. But we'll blame Irene. Feel better about it already. I also have a freezer draw half full of fresh fruit ice cubes to suck on. Anything for fluids.
Bec's order of service is still on my mantel piece. Whilst staying alive and competent as long as possible is for my children - they are my only real reason for never giving up, no matter how bad things got - I see their faces, or remember their faces and more than once they've saved me from throwing it all in over the last 18 years. But Bec, who never stood a chance at even thinking of starting a family, who had less than 30 years of "normal" life, a wonderful husband, who gave up her free time to be a Samaritan and prison visitor (yes she really was THAT amazing), she's not here any more. It's not fair. It's not fair that I'm here and she's not. So as I promised Ol (Mr Bec) at her memorial service that I would do whatever I can to stay alive, we'd promised to do this together when we got our lung and liver mets news at the same time. When I couldn't drink water last week, I kept looking at her photo and taking another sip. When I felt like ripping the tubes out of my arm I remembered how much more pain she was in. When I realised a whole month had passed since we said goodbye I sent a message to Ol, because she can't. She's my guru. I don't know that she ever wanted that job, but she's got it.
I need to buy some nice photo frames today. Mine seem to have got broken slowly over the years and now I just have none. The photos of my babies are frameless and in drawers and that's awful. I look at them on the PC and I do have a digital frame, but there's something about a framed picture that's just better. I'll probably never get round to finishing decorating the living room (or any other room for that matter) but photos will help.
So today I had gluten free fruit bread toast (vegan marge) and tea (soy milk). My hair is super red again and Hayley is coming, oh crap, in 30 minutes and I'm sat in my dressing gown. We're off to lunch to eat ANYTHING. Oh and last night I ate a huge (5 portions) amount of salsa pretzels - in a desperate bid to gain some weight back. Maybe if I get on top of it I can reduce the amount of "dietary crap" I need to eat just to stay alive - because I KNOW that eating properly is my best ally in the long term, if only I can get over the sickness and anorexia. (That's anorexia in a medical sense, a side effect of whatever the cancer is spewing out and the drugs I'm on etc etc).
Aunty Susan just rang, I'm ready (almost), H is late thankfully. Three small kids she's hauled over the channel on her own just to make my birthday. She's leaving them for hours at a time for me.
(P.S. to Carole, Tony and Carole's mum - thanks for keeping an eye on me, I was just too weak to even use a computer for a couple of days, other than my phone. Tony I did read your awful news and I am so sorry. Liver alone - much better situation and highly treatable even if it's inoperable a first that is subject to change, I've seen it myself in many friends. Best of luck).
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