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.
Monday, 22 November 2010
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
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