Monday, 25 February 2013


With three weeks experience as a dog-owner, I've learnt an awful lot of new things, one of which is never buy a completely black dog and expect to take decent photos of him that actually do him justice. Here are my best efforts, but Steve is actually much more beautiful, cute and adorable looking than any of these pictures. It's very lucky that he does look so gorgeous, because he is very naughty, mischievous and has the soul of an anarchist, but those puppy-dog eyes bail him out of trouble all the time. 

 He bites and chews everything - furniture, skirting boards, floors, whatever anyone is wearing, and best of all, he managed to bite all the way through the charging cable of Toby's Galaxy Tablet, which caused untold misery and heartache. We are all covered in teeth marks and scratches, and I won't even mention his remarkable ability to poo and wee constantly and everywhere. 

He's now had his jabs and his microchip, so only another two weeks before we can take him out on proper walks to burn up all that energy - I say we, it won't be me, because I'm still barely able to walk more than a few steps before having to sit down and recover.

 On the plus side, he is very friendly, makes a huge fuss of everybody, and has a lovely temperament most of the time. It's amazing how companionable he is, you could never feel lonely with him around. 

It's been a very tough week quite apart from the chaos and mess that Steve creates all by himself. The rounds of medical and professional appointments has been a marathon, 16 in total, each one raising new issues and managing to add stacks of yet more admin type things to do to my ever-growing admin mountain, which now takes up 7 storage boxes. Forms, letters, emails to write, historical paperwork to find, issues to address - it's both endless and mindless, and I'm almost at the point of losing the plot completely, and sorely tempted to take a match to it and dance around the fire while it burns. However that would only be a temporary solution - I really would need to brick up the letter-box, cancel my internet subscription and  move to a desert island to completely solve the problem. Or sell the children. Or die of cancer. 

Dying of cancer has been somewhat uppermost in my mind lately. For nearly a year my life has been dominated by cancer treatment that has been very hard to deal with, and I'm now left with feeling so weak and ill and shattered all the time that I feel like 10% of the person I used to be. On top of all of that, the radiotherapy burns are very debilitating, both in terms of pain and  mobility. Being a mother to three children who all have varying degrees of disability and special needs is beyond a full-time job at the best of times, and we just seem to lurch from one crisis to the next on a week-by-week basis. It means that my cancer is about 8th or 9th on the list of priorities at any given time, which is a mixed blessing. At least I don't get time to obsess and get depressed about it all, but neither do I get the time to rest, relax and recuperate, which is essential to cancer recovery. So this week wasn't really the best week to read a piece of research that indicates that 30% of breast cancers pop up all over again, and that when that happens, it often means a very poor prognosis. I don't even know yet if all the chemo and radiotherapy has banished both my cancers completely, so to see in black and white how prevalent recurrence is wasn't the most cheerful moment of the week. 

Then there are all the issues that all these appointments bring. If you don't have disabled children, you may think that the professionals we have to consult are just that, professional, and that with their knowledge and experience they actually make our lives easier. Well, no and no. Some, in fact most, are excellent, with good will and well-meaningness exuding from them. However, just in any other walk of life, there are some very difficult, tricky characters who just make a really difficult situation a thousand times worse. It is this end of the professional spectrum that I'm having to deal with at the moment. A totally unnecessary set of very stressful situations are being played out, and I'm left feeling vulnerable, frightened, angry, rageful, shocked and horribly sad. To work our way out of this will mean a huge amount of research, emails, meetings -  and it's all so scary, particularly coming at a time when I really don't have the resources to fight our corner like I should normally be able to. 

So WM has come up with a solution, aided and abetted by my lovely friend, Anita, of the Cancer Photo Shot blog fame. He is whisking me away for the weekend, and Anita is moving in to keep the balls in the air here at home, and to wipe up Steve's poo by the bucket load. 

We're off to an amazing hotel on the seafront in Bournemouth, called The Grove and run by Macmillan, it's especially for people with cancer. 3 nights of just stopping ahead and I just can't wait. In a cancer-friendly environment I won't get the stares I might get elsewhere because of my bright red burns and my bald head. No one will bat an eyelid if I never leave the hotel and just curl up and read a book or several. However if I do want to go out, I can hire a mobility scooter! How cool is that...... I can be a menace on the promenade!

This week we only have 9 appointments so it will be a bit easier. I finally got around to seeing my GP this morning about the Goitre they discovered 7 months ago. A whole new set of tests and treatments to look forward to, now how exciting is that? It actually might be...... there is a very long-shot that with proper treatment all my extra weight might just fall off effortlessly..... but then again it might not, but I'm holding on to that thought to get me past the blood tests and needles that I'll need. 

We took little 10 week old Steve to the vets on Saturday, where they used an elephant sized needle for his microchip, and he totally put me to shame. The vet warned us to expect pitiful whelps of pain and distress, and Steve didn't even murmur - he was so brave. I really wish I was too. 

Monday, 18 February 2013

Adventures with breast cancer: Radiotherapy legacy

Adventures with breast cancer: Radiotherapy legacy: Five whole weeks since I last wrote a post - apologies to all. Lots of reasons, including laptop malfunction and being rushed off my feet co...

Radiotherapy legacy

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.