Monday, 18 February 2013
Five whole weeks since I last wrote a post - apologies to all. Lots of reasons, including laptop malfunction and being rushed off my feet coupled with total, utter, mind-numbing exhaustion. Oh, and a little puppy had a hand in it too - our lovely Steve has been here for 2 weeks, and is turning out to be a really effective distraction to getting anything whatsoever done. Steve is adorable, but very naughty. He also is a hundred miles away from being house-trained and toilets everywhere with very impressive speed and productivity. My new fashion accessories seem to be plastic poop-bags and kitchen-roll in one hand, and a disinfectant/deodoriser in the other.
We've had some training successes with Steve already though. At nine weeks he knows his name and will come running when called. He knows "sit", "stay", "off" and "bedtime", he's pretty good at fetch but still sometimes runs off with whatever it is, and we're working very hard on "no biting". He loves feet and slippers, and over the last few days is really hurting and sometimes drawing blood. House training has completely bypassed him though, and it's difficult because, due to his vaccinations, he's not allowed outside for another three weeks. He's like a little hoover, nose to the ground and swallowing everything he finds, which sometimes makes his little poo parcels very interesting. Most interesting was finding a five-pence-piece in one last week. WM was dead impressed, thought I was doing really well with his training, but wanted to know how long it would take me to train him to poo fifty pound notes. Well even if he did, I'm not going to be the one to retrieve them and clean them up.
Radiotherapy has finished at last. I really didn't enjoy any of it, but I did get to know some of the girls who worked there quite well, and they really are lovely, as well as being very clever. They warn you to moisturise and moisturise like it's going out of fashion, and I did do it every now and again when I remembered, but mostly I forgot. I was doing so well, skin wise though, hardly a mark at all in terms of pinkness by the time the sessions finished last Tuesday. I was feeling quite smug, knowing I'd got away with it. Then on Friday, ouch ouch and triple ouch. Slight pinkness turned to angry red, with some bits going purple and nearly black. Blisters and cuts have developed, and this morning, the nurses in the chemo room saw it when I went for Herceptin, and sent me back to the Radiotherapy dept to be seen. It turns out that it's quite serious, and I'm now having to have dressings on the worst parts of the burns with special prescription preparations lathered on underneath, with the dressings needing to be changed 4 times every day. My skin in in such a bad way that the dressings can't be anchored with tape, so instead I'm wearing a huge piece of tubi-grip like a boob-tube to keep everything in place. I came home with an enormous bag of dressings, lotions and potions to keep me going for a few days. The weirdest thing is that, since my mastectomy and lymph node removal the nerves have been destroyed in that whole area so I can't feel anything whatsoever there. Luckily that's where the worst of the burns are, so it's quite surreal to be able to look at them and wince, but not feel the pain. The burns extend from both arms, armpits, right across my chest, my neck and some spots on my back too.
I've been told that these burns will continue to worsen for another four weeks, and then it will be several weeks after that before they start to get better. That's an awful lot of wasted time ahead in dressing them several times a day. Meanwhile, lifting, stretching and any movement in that area is severely restricted, which, since on one side I'm not getting any pain to remind me to go easy, I have to be very disciplined about it. Worst of all, for several weeks, I won't be able to wear a bra, which means that I can't wear my false boob at all, so I'll be lopsided for everyone to see. Factor in that thanks to Letrozole, the new 5 year drug that I've started, my bones are creaky stiff and making me stumble about like I'm 108. I'm still virtually bald, although it's growing back to the stage where I look like I've escaped from the type of institution where they care for pyschopathic madwomen who enjoy killing innocent husbands. I'm now half titless for the forseeable future, some of the burns are visible on my neck whatever I wear to try and cover them up, and I'm permanently attached to the Steve-related fashion accessories as already mentioned. It really is quite a look, but I doubt Vogue will be courting me to be their cover girl just yet a while.
Rushed off my feet as always running around doing medical appointments and stressing out about the ever-increasing paperwork mountain. This week is a fairly typical one - between today and Friday I have 16 appointments, mostly medical ones, both mine and the childrens'. Just trying to stay on top of everything is totally exhausting, and it's not helped by the fact that some of the professionals are working against my family instead of for them. There are issues going on that I can't discuss here that are causing untold stress and anxiety, sleepless nights and total frustration - all the things cancer patients really don't need.
Good fun things are happening too. "Coke Floats and Chemo" is well underway in rehearsals. It's the stage play of this blog, and it's coming together very nicely, and giving me to chance to vent my spleen and say things to fictitious characters that I'd love to say to certain real people. It's shaping up to be quite comical in places, with the odd dollop of seriousness too. It's really very odd to hear my words in other people's mouths, and watch my life unfold with different perspectives and interpretations, but so far it's all been really fun, and possibly even a tad therapeutic.
I've also pushed the financial boat out a bit. Obviously, Steve, the most over-indulged dog on the planet, is burning a big hole in the wallet, but I've also bought a new car and a new laptop. The car is a Hyundai i20, obviously bright vibrant red, and will allow me to get a bit of independence again. My lovely old trusted steed, the mad red Multipla, has sat outside on the drive for six months undriven. It may be 13 years old, but it is still a really good runner apart from one thing - an electric problem that has haunted us both for 3 years. Something drains the battery when it's turned off. To the point whereby if it hasn't been driven for a few hours the battery needs totally recharging. For the past 3 years I've been plugging in car chargers to long extension leads, trailing them out the window and opening the bonnet and connecting the whole caboodle every time I needed to go anywhere. Since I've been ill, I just haven't had the resources to do it. It's time to scrap it, and it will be stripped for parts then crushed, which feels like I'm totally turning my back on a well-loved family member that's carried us to all sorts of fun places since the children were tiny. But hey ho, the new car has some lovely gizmos like a CD player! Never had a in-car one of those before. Air-con, electric wing mirrors, really useful nooks and crannies for things like mobile phones and coffee cups - I think I may fall in love with it in time.
The laptop is marvellous, but still a bit scary. Only had it a day or so, and this is the first proper thing I've done on it. It's Windows 8, which all looks so shiny and high tech, but I need to spend some time doing tutorials to get my head around it. With 16 appointments, I doubt it'll happen this week. One of my kids has already discovered a really addictive game on it which I'm becoming quite partial to, involving bits of string, bubbles, frogs and spiders, so I can see a lot of time-wasting distraction moments ahead.
All I really want to do is sleep. For hours and hours every day. Just to try and get my body back on some kind of even keel after the shocks and pharmaceutical abuse it's had to deal with over the past several months. Just after lunch today I took some washing up to put away in my room. Don't quite know what happened, but 6 hours later, WM came in to tell me it was 8pm, and he'd cooked dinner and there was a cup of tea downstairs waiting for me. I just wish that life would just stop and let me get off the treadmill for a month of two so I can really try to get better. Just because I have cancer, the responsibilities don't stop, the paperwork still piles up ridiculously, and the world and his family seem to want to click their fingers and have me turn up in their offices for appointments at their beck and call.
Cancer is a funny old thing. Once it's come visiting, it's like one of those guests that won't leave without a fight. It wants to take over your house in the end, getting bigger and bigger and taking up more space all the time. I'm beginning to come out the other end of a medical marathon to evict it, and I need space and time and recovery to make absolutely sure that my body is strong enough to ensure it doesn't creep right back in all over again. Deep deep down, I know that we're nowhere near home and dry yet, and that the cancer is still there waiting to pounce when I'm least expecting it. When cancer comes back for a second time, it's stronger and I'll be weaker. It tends to be much more serious the second time, and prognoses are much poorer generally speaking. So my next challenge is to work out how to step away from the fire-fighting car-crash that my life seems to be all the time, but without letting anyone down and still keeping all those balls in the air. Easier said than done, and any suggestions really warmly welcomed, please.