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
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