Sunday, 27 April 2008
Saturday, 26 April 2008
Friday, 25 April 2008
Hoorah. Today has been excellent. I am feeling really good! Yesterday was bad, apart from a gorgeous pot of flowers from my sweetie pie sister-in-law. It did make me chuckle, as I thought it’d be a rather good hat. See above – know what I mean?
Wednesday, when Andrew had to cut off all my hair because it was falling out in great big pieces, was awful. It was like I got lost and ‘I’ wasn’t here any more. It’s like being stripped of all your defences, when you really need them the most. Anyway, I now look like Sigourney Weaver in Aliens. I was very upset, and I actually frightened myself when I caught an involuntary glimpse of my head in the bathroom mirror and almost jumped out of my skin [more chuckling – but rather weakly I might add...] but now I’m not upset any more. Maybe I am a bit superficial you think? heh heh. Onward and upward chaps! Envisage waking up with no hair. It’s incredible. Plus your head gets cold!! How do bald men do that ‘walking around without a hat’ thing? Are they crazy? Are they Rambo in disguise? Have they no temperature gauge? Will have to ask my Dad, as he is one of them. My head does NOT like being without hair, and it declares itself volubly by freezing the rest of me until something is done about it.
But today is very good, because I did three things that help me to be positive and feel more like myself again.
First thing was: I drove the car for the first time since the surgery! Cool!! At last! And I didn’t run over anyone or drive into anything. Celebration. I was nervous in case I had forgotten how. My concentration level was my main concern, so I have waited until I feel completely competent, rather than squash a few pedestrians and then remember that I am driving a machine that weighs a few tons and should not be taken lightly. Plus I can now open the door and put the seatbelt on by myself, a major achievement thank you!
Second thing, I managed to get a pair of jeans on! Wow – I now have such a fat butt from sitting around doing nothing except working at the computer that it was a rather energetic event trying to get them on. I need to do something about this or my jeans will explode. That can be my next project now that the hair is behind me. Or rather, it was at my feet and is now gone.
Third thing – I went to have my blood taken at the doctor today [this is to be sure I am ok to have the next session of chemo on Tuesday], and I wore a wig for the first time. It is so weird, I can’t explain. BUT, fantastic, as no-one notices. This is a good thing as my brother is coming to visit this weekend, and I don't want him to have a nervous breakdown at the sight of me. A sister who looks like a combat soldier? hmm - no no no...I don’t think so!
The wig was also the reason I decided to go in the car [it’s a disgrace really, as the doctors surgery is about 5 minutes walk away]. I was concerned in case the wig flew off! Imagine that – might have been rather stressful, so to be avoided at all costs. Oops, there goes my carbon footprint eh? Never mind – I have concrete, existing things to worry about – can’t be worrying about things dreamt up by people with nothing better to think about I’m afraid. Plus I thought that IF I decided driving the car was a silly idea after all, it wouldn’t be too far away for Andrew to go and get it later.
Best thing is that for this week I appear to have passed the tiredness zone, and only get tired at about 6.30 / 7.00. But that’s after working all day, so to be expected. I now have a better idea of what to expect in this next 3 week section of my life. Having it divided up is quite irritating, as the time either drags while you’re waiting for the chemo, or zooms by at a rate of knots when something nice [like feeling wide awake!] is going on.
So today I feel MUCH better again. I feel almost like Sandhy!
Wednesday, 23 April 2008
So, today I almost gave myself a nervous breakdown. Decided to have a bath and wash my hair – isn’t that supposed to be relaxing? Ha! I laugh in your general direction – relaxing? NOT. So much of my hair fell out in the bath I was sitting in the middle of it, looking at it floating about, crying. When I got out, I looked like Chewbacca from Star wars, and had to have shower to get all the hair off me. Jesus. Enough of these indignities now thank you.
Had a message from Emily, telling me about Buff headgear, so after I’d recovered from the frightful bath experience, I managed to dry the remains of my hair into some sort of reasonable state. Shot over the road to Bridge, and bought an original one. In the back of my mind all the time was the thought that this is now just masochism – I am torturing myself by leaving my hair – it’s all over the house – I had to hoover the bed for Pete’s sake. So when I got to Bridge I wasn’t in the most sane of states. Asked them if they could order in a Buff with a visor, and they said ‘sure, that’ll cost £10 for p&p, as it’s a special order’ – oops. They didn’t know what kind of monster had arrived in their shop. I did ask the fellow if he was on drugs, to which he took umbrage. Hmm – second mistake on his part. I was a tad peeved by this time and told him so. £10?? Give me a break – they only COST £10.oo!! Foolish person. Anyway, after abusing the man I bought the one I wanted and stomped off to buy some wine, pizza and bread. Right. Sorted with the important stuff.
Now to consider if Aj should chop off my hair [he was blissfully unaware of my plotting, as he was at work]. To cut a long story short, after he got home I got him to chop off the lot. First cut it off with scissors, then shaved it back to a Grade 1 [about 1mm from the scalp] with his beard trimmer – which conked out by the time he’d finished with my hair – there was rather a lot of it after all. I stood on the patio in the middle of all my hair, trying to be normal, but failing miserably, and had tears running down my face all the time he was doing it. He said I was being really brave, which made me even more upset.
Slapped on a bandanna, and here we are; better stop soon as I am getting a bit tipsy now, as I have allowed myself a larger than usual ration of wine!! As in: I will drink the whole bottle if I like!! Well, I think it’s either that or run round the neighbourhood throttling unwary bystanders...now just to wait for the rest to fall out. But not so bad now, as it’s so short, I shan’t notice so much. And it’s not as painful without the weight. Still itchy, but that’ll go once it’s all fallen out. Wow – such a fun day. Poor Andrew. What a life.
Well, only one more week and the next chemo will be under way. Now that the hair is gone, that’s it really – just get these sessions over and done with and try to get back to normal. Fridays blood test will tell, although I feel ok, so I am sure they will be fine this time. Encouraging to think that I’ll be a 3rd of the way through it after this one. Two down in three weeks, four to go. One good thing, the horrible rash has gone down to a dull roar, and isn’t so irritating. I stopped taking the Piriton, as it didn’t appear to be doing any good, and I’m sure I have enough rubbish in my system that I don’t need to add more if it’s not helping.
Guzzling what feels like gallons of Lucozade – not sure if it’s good for me or not, but it’s all I feel like drinking at the moment. Overdid it a bit at the weekend, as we had the kids and grand daughter down, so it was all go. But it was a lovely distraction, and we had a brilliant weekend – much junk food consumed by all! It seems like we ate crisps all the time? Anyway, it was excellent.
Right – off to drink wine, be a grump and sit by the fire. WHERE is the summer?
Saturday, 19 April 2008
Yesterday was a bit exhausting, but I feel better today. I understand that the 10th day in is the lowest day for your immune system, and I was shattered, beneath my eyes swelled up like poached eggs and I felt like sleeping all the time. Impossible, as I need to work. I have always enjoyed my job, but at the moment I am beginning to detest the very sight of the computer. This is the problem with being a freelancer – no paid sick leave, no note from your doctor telling you that it’s fine to have 3 months off and rest. You have to just try and work when you have a lively moment. It can make you feel a bit resentful. BUT, saying that, if I wasn’t working what would I be doing? Apart from sleeping anyway. So. Hmm. Good points and bad points, my main worry being that it’s hard to be creative when your brain is shouting at you to just stop and sleep. Many arguments inside my poor head. Working at strange times.
Speaking of my head, that’s today’s entertainment. I woke up about 10 times last night because my scalp is so sore – like someone has been trying to tear my hair out in chunks! This is not necessary. It’s going to fall off anyway – behave yourself, head!
My head feels like Fire Ants are eating it. I quite like Charlie Chaplin’s quote: “Hair is vitally personal to children. They weep vigorously when it is cut for the first time; no matter how it grows, bushy, straight or curly, they feel they are being shorn of a part of their personality.” It’s not just children that feel like that I can assure you. The hair loss is giving me sense of humour failure for the moment.
Apparently this soreness stops once your hair is gone. Well, if it gets worse, my hair might be gone sooner than it thinks, as I am already tired of having a sore head. Bring on the beard trimmers or whatever they are that people use to shave their heads. I am starting to see my own hair as an enemy in the camp – first it’s going to fall out, second it’s adding to the aggro. Probably this is a good thing, as I may get to the point where I can’t wait to shave it off!
Beware hair, you days are limited!
Thursday, 17 April 2008
All good fun, this is. Last night I thought I was feeling a bit peculiar, and I was correct. I had an itchy side, and noticed that as well as being itchy, it was bumpy! Aaargh. Upon closer inspection [which is complicated in our house at night, as we don’t seem to have ANY bright lighting] it materialized that I had a rash all over my tummy, sides and the top of my legs. Great. A billion little red dots, itching away like the Parsee’s crumbs...
Rang the ward at 22.00 pm, and discussed it with a nurse, who said don’t worry but call the chemo ward tomorrow; so I decided that as I was already worried, I’d have a bath, a glass of wine and then stop. Did the temperature taking thing just to be sure and went to sleep, quite expecting to wake up looking like a currant bun.
Woke up reasonably normal. Phew. Still dotty mind you, so I rang the chemo ward this morning and the same advice from the specialist, as it hasn’t got worse, just itchier, just get some over the counter Piriton, as that should help the rash and also the sinus problem I’ve been having. Apparently both are symptoms of the Taxol and both can be helped by an antihistamine. It’s the same stuff they poured merrily into my arm before the chemo. Perhaps it’s run out? Who knows? Anyway, Andrew will be getting me some on his way home, or I shall end up like Kipling’s Rhinoceros, ‘very angry indeed and horribly scratchy’...
Apart from a stuffed up head & itching nose, feeling ok! Yay!
Wednesday, 16 April 2008
today's nice thing! a hand made card from my friend's daughter in the States - LOVE IT!! it made my day
The other I want is only available in France, so I am going to get my French Connection to acquire it for me.
I’ll change this photo to one of me with it on once I have to wear it.
Thought I’d mention some of the side effects [and what I do about them] – I have to make a list to take with me the next time I have the chemo, so I thought I’d put it on here too. Why not?
First two days: obviously the nausea, which was controlled by the tablets, so no problem there. Next few days, a bit ‘nauseous’ but also controlled, once my brain kicked into gear, by the tablets. By Sunday, seemed ok.
All the time, but not constant: strange, stabbing pains in all sorts of places [foot and wrist and stomach] – the stomach ones may have been self inflicted by the floor episode [yes, yes, never to be repeated]. Mostly the pains seem to be controlled by taking the odd painkiller. Better check if these are allowed I suppose. And sudden attacks of exhaustion, but these haven’t been too bad this time, as long as I have a quick sleep then I awake feeling fine. They have also diminished this week. Long may it carry on.
Constant side effects:
- blocked sinuses, watering eyes and an itchy nose. I feel like I have a cold coming, a fat blocked up head, then it goes away, then it comes back. The last few days the inside of my nose has been itching almost like hay-fever. Very irritating and it makes me feel like sniffing my coffee up it. Probably ill advised, as drowning in one's own coffee will be worse than an itching nose...
- the taste thing. I was warned that my food might start to taste peculiar. Well, that’s true to an extent, but it’s my mouth that does the peculiar thing. It’s like my teeth are leaking something horribly nuclear into my mouth. If I clean my teeth then eat straight away, it seems to clear it for a while. But some things do taste foul – I’ve discovered the best thing to have for breakfast is Marmite on toast – the taste is so strong that it deletes everything else. Brilliant – I might have Marmite on everything! Perhaps I should write to them and inform them that their product has miracle attributes heh heh. And ice lollies! Yesss! Fabulous things, freeze the tongue, so you can’t taste anything which is rather nice occasionally.
I am sure Grace will be chuffed to bits, as we will be trying lots of them. As she is 4, she can probably advise me on the best ones? At the moment I have Jelly Baby ones – repulsive purple colour, but they are so nice! Why is kids food such horrible colours? Someone tell me that. Mothers, complain – I am sure if it drips on me, I shall be stained purple for the duration.
- mouth ulcers, dry lips and constant thirst. Had to nip to the chemist and get some stuff to slap on an ulcer on my tongue. I can’t imagine what it’s made of, but it fixed it instantly. Hello Scary Tongue Stuff! But a lot better than the ulcer taking over the entire known universe in there [can’t be doing with the advert where all sorts of small men are marauding round one’s teeth, yelling about disaster zones and waving hose pipes – imagine the headache you’d have]. Drinking lots of Lucosade. It seems to also help get rid of the horrible taste.
Bought a new electric toothbrush, as it seems very difficult to actually get my teeth clean. Takes ages to remove the aforementioned nuclear waste. And a medicinal mouthwash [YUUUUCK!]. Hate mouthwash, as it says DO NOT SWALLOW, so of course when I gargle I immediately want to swallow it. Contrary to the last. Plus it sets your tongue on fire – what’s that all about? Torture, disguised as being good for you.
I am using a really good lip balm called Palmer’s Cocoa Butter Formula – marvellous. Very ugly packaging mind you. They could do with a new marketing person. Brown and blue? eww. Made in America – what can I say? But it’s wicked stuff.
Tuesday, 15 April 2008
Monday was the day I had been dreading. You’ll remember that I made an appointment for a lunchtime haircut with Exeter Hair and Beauty last week. So, I spent all morning on Monday trying to think of good and sound reasons why I couldn’t possibly go. I felt sick. I had work to do. I might need to be here to do an urgent translation for Patricia. Isabelle might need the presentation right now. Oh blah.
Eventually I managed to force myself into a shower, into clothes, into makeup, then of course I rang the taxi so late that they couldn’t get here in time. [Bus? NO!! costs nearly as much as a taxi, and never arrives!] I had to ring and warn Tanya [my hairdresser] that I’d be 15 minutes late – ooo, so pathetic! Really, really wanted my friend Isabelle to appear on the horizon to go with me. Impossible of course, as the silly woman is in Portugal. Very inconvenient!! I can’t imagine why she doesn’t have a holiday apartment here, in order to be at my beck and call. Right, off to the hair chopping session, sans Isa. Bummer. I am such a coward. But then I have always equated the hairdressers with the dentists – and I have to be sedated to have even a small filling!
Tanya, the girl who cut my hair [no, that’s not old age – she really is a youngster], was brilliant. She was totally and utterly cool. Chopped off my hair in no time, leaving the front nice and long, and the back very short. She asked me about what was going on, chatted away, didn’t patronise me, and didn’t upset me by being all sympathetic. I am eternally grateful to her, as I’d expected to get upset [yes, blasted menopause again – doesn’t allow you to think past ‘I might start crying at that’] and because she was so pragmatic. Great! Thank you! Left the hairdressers feeling much better, as that was one more thing I needed to get behind me. As the Yanks say, that was quite ‘empowering’!
After work I went to see the wig ladies. Luckily for me the woman who’d been away on holiday had returned, and the choice was simple, as she is quite decisive, and didn’t keep BRUSHING the wig [I don’t ‘do’ brushed hair]. Got one paid for by the NHS and another that I bought myself. Both short. Less transition time once my hair starts to grow back. [so surreal – still can’t imagine myself with no hair actually]. Also bought an amusing French leopard skin style bandana/turban affair for round the house. Really soft inside and quite demented. Need some blingy earrings to go with it. Sorry Jacket, but needs must darling! I KNOW leopard skin is très boring, but it feels great!
I don’t care what Andrew says, I am totally NOT going to allow him to see me with no hair. Ha!! In his dreams [or his nightmares – can’t decide] whatever, it’s never going to happen! Bald is one thing...having your husband see you bald? That’s another. Yuck! Anyway, the wig woman [Jeanine?] said it’s better to sleep with something on your head, as you get cold – all the heat flies out of the top of you. As she has been doing this for years, I will take her advice. I’ve had a ton of hair all this time, so I am sure a light weight skull cap type affair isn’t going to be a problem. Have to glue it on maybe?
Tootled off to Nandos afterwards to wait for Jones to pick me up – had a fabulous glass of Portuguese red wine – at £4.50 for a glass I would hope so. I swear you can buy the whole bottle for that price in Portugal. But it was nice anyway, and sat in the sun too, a bonus. So, a good day all told – hair cut, wigs bought and - I forgot to mention!! A wonderful woman at Dingles Clarins counter!!
Bah. I am tired of typing now, but must mention this. I popped into the Clarins counter at Dingles to see if I could find a better foundation for when I have no hair. Their facial products are the only ones I am not allergic to, so thought it a good idea. Well, it was a brilliant idea! The woman at the counter was great – she used to work with ‘Look Good, Feel Better’ in Bristol. Now she has moved down from London to Exeter, and is hoping to work with them here too. So she was completely at home with advice for chemo patients and gave me loads of good tips plus a lot of free samples to try at home. Whoo hoo – excellent! I am now the proud owner of false tanner, foundation, stuff to make your face look more glowy etc etc. All these silly little things make such a difference. I am hoping I will see her at the ‘Look Good, Feel Better’ session at Force – she was so kind. Another result!
So, it’s now Tuesday. No painkillers, no nausea tablets. I had a good day, spent lunch time outside as we actually had some sun for a change. Chatted to my Brazilian friend in Portugal – she is the only person left that if I talk to her, I start crying! It’s her voice – she is so simpatico, it breaks my heart. Tried to do a bit of gardening, and managed, but not a lot. Will try to do a teeny bit every day, and build up to it now. More fabulous photos from my youngest brother, and lovely scandalous emails from my other brother [always good – keeps you occupied!]. One of my more demented friends fell down a ski slope and got a black eye and a sprained wrist – had me in stitches! So grateful that I have so many friends – they are all so bloody entertaining! Off to the fireside!
Woke up on Saturday still feeling like hell had arrived in my stomach [and my foot]. Another pain killer – these that I have a rather good. The directions say to take 2 every 3 hours – I am taking 1 a day IF I need one, and they work. Brilliant – I always worry about pain killers – as I have an addictive personality, but I think 1 out of the prescribed 6 or 8 is probably nothing to be worrying about, plus they are a sort of ‘chill out’ pill. Not sure if they are supposed to, but they make me feel quite calm. Always good, especially for us girls that have been chucked head first, sans advice, into the menopause! Actually I think it’s rather rude of them – “hello, here’s the menopause, you may go home, and NO we won’t tell you anything useful at all...”
So, Saturday was a bit complicated, and I went back to bed twice. Meant to have a quick 1 hour sleep at lunchtime, but woke up 3 hours later – felt better though, so I suppose it was a good idea. Haven’t QUITE got my head around having a nap in the daytime though – probably ought to spend a few weeks in Spain. That’d get me acclimatised to the idea of a ‘siesta’ and stop me having a guilty conscience. Watch out Ricardo! You never know who might arrive at your door! ;o]
Anyway, getting carried away here...quite a bit of pain going on. Not sure if it’s the chemo or not, but as Tracey W [my Useful Been There Bought The T-shirt Woman] said, they are stuffing one full of poison, so the body is bound to revolt at some point. And mine is revolting. That’s for sure. Strangest pain was in my foot for Pete’s sake. Watching TV and the next thing it felt like someone had grabbed my ankle and was trying to rip it off. Lovely. I don’t notice anyone warning you about this kind of thing. “Beware, you will feel as if you are being eaten by a shark. Foot first.”. Hmm – I suppose panic might ensue. But then again, panic does ensue, as you wonder what the hell is going on and why. So, again, ignored it. Bent it about a few times and after a while it went away. Good.
Sunday was excellent – woke up feeling like a normal person [is there such a thing?], and had a great day as Mum and Dad visited and we had a brilliant brunch. Mum very sensibly brought wine and cigarettes – what a star! How can anyone be in a bad mood with such offerings on the table heh heh. Dad off to Saudi on Tuesday, so it was nice to see him before he toddled off into the sandy wastes. Business class. With cutlery. Apparently [in the minds of security people] if you are business class, you are not so likely to stab the crew if they give you a set of cutlery. Hmm. He got 40 kilos of luggage allowance!! I am so green...
The two days after chemo where fine. I actually felt better than I had felt since the surgery, I think it was relief, that it hadn’t been as terrifying as I’d thought it would be. Ate my tablets, as instructed, and only felt vaguely ill first thing in the morning. The third day was revolting, as I felt sick until lunchtime, but didn’t take the ‘emergency’ tablet [this is called stubbornness, aka: stupidity] finally took it and some toast and marmite [Marmite! YES!! LOVE it. Tastes so strong it obliterates the horrible taste that occasionally arrives in your mouth – but more about that in a bit] and felt much better almost immediately. It’s not that you feel like you’re going to be sick, and I think [in my case anyway] ‘nausea’ is a misnomer – it’s more like that feeling you have when you are with an upset stomach. A sort of persistent roiling in your tummy, and it makes you exhausted and a bit white round the gills. Far better to take the tablets! Yes, I know – no brainer...
Had a lot of peculiar pains on the 3rd day too – very difficult to decide if they are from the surgery, the chemo or the menopause. Life is filled with confusion these days. Ignored them.
Friday night I decided I would clean the floor in my office, as I felt as if I was being ruled by my belly. Plus the floor was getting nice and dusty. Hideous! Time to get a little control back here I think! It’s a teeny weeny floor, about 2m x 3m. Nothing radical. Got Aj to bring the vacuum down for me, and used the hand held thingy to slurp up the dust and stuff, so no shoving a machine around, then quartered the floor and cleaned it bit by bit. You have to get on your hands and knees with a rag for this floor, as it’s tile, and needs cleaning properly. Got it all done, felt shattered, but I was really pleased, as I had achieved something. BAD idea...spent the night awake with stabbing pains in my stomach. Apparently the nerves complain rather a lot when they are growing back, and I obviously gave them a reason to ‘Be Serious’. Grr. Next day I had to take a pain killer. Sorted. But irritating, as I now ‘Know My Limits’. Pitiful.
Tuesday, 8 April 2008
Early. Yuck. I do so detest having to be civil first thing in the morning. Appointment was at 8.15. Aj dropped me off [he would have come, so would Mum and ten other people, but I decided to go alone, as sitting around for 8 hours or so is tedious, especially with a grump like me] and I raced into the little shop, grabbed a sandwich, bar of chocolate, a big bottle of water and a bag of sweeties. Some Werthers Mints – never again. They are so sweet I was at risk of diabetes...dumped them in the free sweetie tray for general consumption. Anyway, I was late going in which freaked me out totally – waiting is not my strong suit, and particularly not today.
Eventually got going at about 8.40. had the pre-meds, which take ages, but as the pharmacy are merrily mixing up your chemo in the interim, it’s just as well. First they soaked my hand in hot water to get the veins up, then they throttle your arm with a band, and put in the cannula. Didn’t feel a thing. Marvellous.
I then had Ondansetron, Dexamethasone and Piriton. All of these for anti-nausea and ant-allergen. Having been told some chuckalicious tales about the Piriton tickling your nether regions by Tracey, I was rather expecting some amusement there, but nope! Nada! Everything went in through the cannula, and then they chuck a bag of saline in there to clear the line for the chemo. Piriton made me very dopey, and for the rest of the day I coasted between being sleepy or wide awake. Had the Paclitaxel first, that took 3 hours. Then a bag of saline to clear the tube, then another one of glucose, as the chemo is in glucose [I think that’s what she said], then the Carboplatin. That took about half an hour. Then another two clearings, and out! All told, I was there for about 8 and a half hours.
The Paclitaxel is exhausting, and it made my arm really hurt, near the cannula, and further up the arm. Not screaming pain, but painful enough. The nurse put a fluffy heated blanker around it and that knocked it right back to bearable like a small headache, with occasional sharp stabs of pain [it obviously is an attention seeking drug this one]. She said it’s because it’s so cold it bothers the veins. My veins were NOT amused. I could read my book and ignore it [during an awake bit!]. Also made me feel a bit delirious for a while. But nothing radical.
1 hour in my hand was ok and I gave back my new friend, the fluffy heated thing. Once I sassed out the system, I could unplug myself from the wall and trundle about. Just as well, as I drank more water than a thirsty camel, and was nipping back and forth to the ladies and the water machine for refilling my water bottle every half hour. WHAT a palaver trying to get reorganised clothes-wise with all those wires hanging out of my arm! NOTE TO SELF: must plan better clothes next time. Roll on summer. Oh, and remind veins that this is a team effort and they should kindly not be so disruptive.
In the meantime the lovely ladies from Force were nipping in and out with cups of tea and coffee, biscuits and smiley faces. Managed to trundle out to the waiting area and get a coffee myself too. Rather startled the waiting people I think. Woman And Personal Darlek get A Cuppa. Hmm.
Lunch time the nurse came round with sandwiches – thank goodness I bought one – all they had was egg and tomato. YUCK! What?? Who thought of that for people who are trapped in chairs for 8 hours? Are they mad? I had chicken and stuffing – far more civilised. But at least they offer you something. Better than a poke in the eye. And the coffee is ace.
Aj arrived as the Carbo was due to go in, what a nice thing to see his face! By the way, the chemo comes in huge great bottles instead of bags, and everyone dons a big smock to deliver it. The Carbo was ok for me – feels very cold going in, but apart from that, no problemo. One of the other women had a side effect of a very red face with breathlessness, and had to have oxygen and a lot of attention, but she was ok after a while. Poor thing, she was very stressed. I was very grateful that I didn’t get that. This time.
The place was like Piccadilly Circus today – full to the rafters, and I was amazed at the nurses having such a lot of people to deal with all at once. I don’t think they had much break time, and they were running all day. Ran out of chairs too, and everyone looked a bit frazzled. But everything still done with a kind word and no fobbing off if you needed to know anything.
Hoorah – last glucose wash and: ESCAPE at last – raced into the car with Aj, lighting a ciggie on the way ;o] Felt ok apart from a sort of wobbly leg thing, but I think that was sitting around for so long. They joined the veins in making their disgust felt. We went to the Quay for a quiet glass of wine, and then home. I felt slightly queasy, so took the tablet they command you to take, drank yet more water and sipping a glass of wine as I type this. I am not tired today, don’t feel too bad at all. Still a slightly wobbly tummy, but it might be psychological? Anyway, will see what tomorrow brings, as that’s supposed to be the day it hits you. I have 2 more tablets to take tomorrow for in case of nausea, then a pack of ‘in case’ ones for the days after, and hopefully I won’t need them. Hand still having stabbing pains but I think that's just from the cannula - had it after the surgery too.
If each one goes like today, I shall be eternally grateful. One down, five to go!!
Righto! Back to the wine and water!
Saturday, 5 April 2008
Long and the short of it is [oops – sorry bad pun there] I can book myself in late night this week for getting a short cut, then Jenny, bless her heart, will come round to the house herself to do the dreaded deed of shaving off the rest. How cool is that? Best get my wigs sorted I think, then I can ask her about those too.
The nails; no problem apart from the fact that they are nowhere near as good as the UV gel I have done in Portugal, they look a million times better. Oh well – as I have discovered that I get a wig free from the NHS, I can afford to splurge on the one thing that I know will look nice [and not fall out! quite useful]. I now have French Polished nails with a sort of UV gel on them. We will see if it last the promised 3 weeks. I also paid in advance for the next three sessions, as they then throw in one for free. Ok. That’ll see me to the end of the chemo – yay, nails will be nice and not breaking and tattered. Loads spent today, but two good things – the manicures are paid in advance, so I shall soon forget the bill. The fact that I have already paid means I HAVE to go out of the house to have it done. Motivation – I think I will probably need it.
Wigs. Well. What can I say? An amusing but also distressing experience. Wigs DO NOT look like the pictures once they are on your head. I tried on one that made me look like Shirley in Boston Legal. She looks great, but is about 60! NO, NO! Long wigs look crap – I think if I had alopecia and this was a long term thing, I would have a fantastic, real hair long wig, but the price range I’m going for, the long ones are not as good as the short. A good idea from the lady at the wig shop - if I have a short wig, once my hair starts growing out it won’t be such a surprise for people to see me with short hair. Very wise. So short it is.
Tried a few. I hated nearly all of them and it all felt utterly surreal, but we managed to winnow it down to two, with another on order for me to try. Took phone pics for review at home. I now need to get a ‘case number’ from the RD&E, so that they can order the wig. Right. Later. Wig arrives next week, will go and try it on once I wake up from the chemo. Then I will buy one, and have the other on the NHS. Sorted! Well, apart from the hair cutting scenario, which I am still trying to resolve. Might go to the hair salon I usually use in the UK. Initially I wanted to avoid that because everyone knows me there, but it may be a better plan. Thinking about it.
Next stop the oncology department of the RD&E. Saw a peculiar video, running over all the chemo info again. Then saw a nurse called Helen, who went into more detail, presented me with a little blue book for recording stuff in, showed us around the oncology ward etc. I think it’s so you know what to expect and to remind you of all the bits that you forgot since the initial meeting.
Seems it will take around 6 or 7 hours, especially as this is the first session. On arrival I will have 3 x pre-meds; anti-sickness, piriton and cimetidine. This all put in one by one through the cannula – while this is all going on, the pharmacy make up the chemo, which takes them about 1½ hours. The Paclitaxel takes about 3 hours, and the Carboplatin, about ½ an hour to an hour. So it’s basically an all day job. Aj will drop me in the morning, armed with Nintendo, books and whatnot, then collect me afterwards.
We made a quick visit to the Force centre as well, as that’s where you can go for lots of support, info and advice. It’s a gorgeous little building, all light and airy, with a pretty garden and smashing people. Really friendly. We’ve decided to meet there in case one of us is early or late, as it’s very calming. More about that later.
Wednesday, 2 April 2008
What an aggravating day. I was very tempted to commit GBH on a few occasions. And if one more person calls me about a driveway / mobile phone upgrade / bank account, my head will explode.
But that’s not the reason I was tempted to violence [surprisingly!]. I decided that today I would A: cut my hair very short, B: arrange to have the rest shaved off at home once it starts falling out in clumps [well, hopefully it won’t do quite that, but you never know]. I had to see the nurse at the GP’s today, as the bottom of the wound hasn’t healed the same way the rest has, so I thought I had better get it checked. Right as rain, so that was step one sorted. The nurse was lovely – she had a problem with hair as well, and highly recommended the ladies at the wig salon in Dingles in Exeter, as she has seen them herself. That was encouraging, as I am going there after work Friday, and as she was so positive about them, I called make an appointment.
But I am getting ahead of myself – I forgot the interesting and infuriating interlude in between. I thought that as we have a hair salon 2 minutes walk up the road, I’d nip in there on the way home from the GP and see if I could have the A and B sorted. Seemed quite simple to me – cut my hair short now in the salon. In a few weeks, one of the girls might be able to walk down to our house, and razor the remains of my hair. A good idea from Aj, as it would be a lot less stressful to have this done at home, rather than in a salon. Nope! It would have been ‘too much trouble’ as ‘everyone is off on their holidays’ and ‘we need 2 people in the shop at all times’ etc – ‘sorry’...very thoughtful girls. As there are loads of women suffering with alopecia and chemo induced hair loss, I found that very un-empathic and was pretty cross. So, obviously they don’t need the business. As a rather bitchy little manoeuvre and to vent some anger, I nipped onto the internet and gave them a bad review – not unkind or rude, but not recommending them either. Right, that was them crossed off the list.
You will note that I refer to ‘empathy’ here, as averse to ‘sympathy’ – I don’t need or want sympathy, but a little understanding makes a huge, huge difference when you are asking questions like that - it’s hard just to discuss the fact you are going to lose all your hair with a stranger, and the girls in there seemed to think I was asking about having the latest ‘Posh’ style – surreal.
Got home and decided to call the wig ladies at Dingles. AAARGH! The internet shows a number, which I duly called – apparently the hair ‘dressing’ side of it has moved. Ok. Call the new number. Deal with a total half wit who should never ever even be allowed NEAR a phone. Ever. Nor a pair of scissors if the phone conversation was anything to go by. I managed to discover, after much difficult two syllable style conversation, that the wig department is STILL at Dingles, but this new number is a hair salon [I am starting to wonder WHO works in hair salons – where do these people come from? the moon?]. And no, she didn’t know anything about wigs, chemo patients etc. Ok. More phone calls – thankfully, Dingles have a person on their exchange who has not yet undergone a frontal lobotomy, so I was put through at last to the right place.
What a relief!! I spoke to a sensible and empathic person at last. She sounded just up my street, understood my mind set, knew exactly what I wanted, how to get it and what I should be doing. Lovely. AND, interesting factoid from this woman, I actually am entitled to a free wig from the NHS, and apparently I can order it through the Dingles wig shop [I will no doubt find out all the names of everyone, and of the shop eventually]. They will call the RD&E on my behalf while I am there and get a case number, and order it for me. Oh yay. Such a relief. But after screwing myself up so much to go to the initial local hair ‘salon’ [grr] and to be so disappointed by them, I was now shattered. But, excellent that I now only have to lay out for one of the 2 wigs. Cool.
Now to organise a treat for myself, after all this torture – Mum has been advised by her friends that one’s finger nails get really brittle from the chemo. I am lucky and have very strong, long nails anyway, but I decided I’d have a full set of UV gel nails done – it’s a really hard coating over your own nails, set with UV light. It can incorporate a French Polish, and lasts for ages if it’s done properly. So I rang up about that, expecting more chaos. Incredible – a young girl answered the phone, arranged the appointment, knew quite what I wanted and that was that. Sorted. Hoorah!!
It is very tiring and trying, dealing with people who don’t understand or try to understand what you are going through – and even though it isn’t their fault, it can be very upsetting at the time [yes, I am over wanting to fire bomb the local salon by now heh heh]. You have to be prepared for the fact that even though all your hair falling out is central to your life, it’s peripheral to everyone else’s. And long may it remain so.