It’s nearly a month since my last blog, and it’s been a funny old time. Ups and downs, mostly downs, but feeling that we’re coming through and feeling a bit more positive. Again and again, every day I’m reminded by doctors, health professionals, and the side effects that this isn’t over. I hoped I’d done my year from hell and that would be enough, but still it drags on and seems at the least unfair that each and every day my life is changed, in the main for the worse…or so it feels at the moment.
I’ve had several appointments back at the hospital for various things, and it looks like in a few weeks’ time my weekly appointment quota will rocket to 4 count them, four appointments each week. Ugh. Some are appointments to improve the side effects of the cancer treatment , others are an attempt to avoid issues developing into life inhibiting problems. It’s amazing these resources are available, I’m very lucky to be offered them and it’s all positive stuff, but all this means ‘normal’ life feels like it’s slipping away again. I’ve had enough of it now and just want to move on, but it doesn’t seem to work that way – it seems I still have to play the role of ‘patient’ and will do so for quite some time.
The fatigue is intense, mainly caused by chemo and radiotherapy, and it’s likely to take at least a year to improve. I’ve been trying to carry on as I want to but the message is coming through loud and clear from the doctors and my body that I can’t continue as I have been. I have to give in and stop and rest more. So frustrating. But half the challenge is changing my mindset about it. I’ve been fighting for my life for the last year and I’ve continued this fight, fighting through and against the fatigue, and when I’ve collapsed in a heap having overdone it I’ve felt like a weak pathetic failure. An easy conclusion to come to when what’s caused me to crash is not even a quarter of what I used to do in a day. But this fatigue is normal, I’m assured, for someone in my position. It’s hopefully not forever but will remain for a while. So the answer is to stop fighting, and accept that this is my normal for now. And that that’s ok. Easier said than done. I’ve been referred to a fatigue management course which will suggest techniques and tactics to cope better, which I know others have found helpful.
I’ve had an appointment to keep an eye on any development of lymphoedema. My lymph nodes, whose job is to drain fluids your body naturally produces, have been removed in the upper right side of my body as the cancer had spread to them. My lymph system needs to learn to drain fluids to the rest of my body, otherwise fluid may be retained by the tissue in my right arm and chest causing swelling and pain. This swelling is ‘lymphoedema’ and once it happens is irreversible. Dan’s mum suffered with an extreme case and lost the use of her arm due to lymphoedema and having seen her cope with that it’s a bit scary, though I know it’s unlikely to happen to that extent in me if I’m careful, though lymphoedema could set in any time, even in ten years’ time. I have some swelling in my chest, which may be the cause of some of the pain I’m in. I’m under preventative treatment with compression garments – a very attractive sleeve for my arm and a ‘straight jacket’ for my chest. Ooh the glamour continues. They are a bit uncomfortable and pretty ugly and a daily reminder of the hangover of cancer.
It’s also tiring dealing with pain. My new meds aren’t yet helping much as I have to start on a low dose and gradually increase. My main strategy has been just to try and ignore the pain, but I wouldn’t recommend that course of action as it’s knackering and doesn’t really work anyway!
So some (most) days I’ve been feeling like a crap mummy, a crap wife, a crap friend, unable to do anything more than get through the day, adapting my activities to what I can cope with and trying to do my best for Tilly. I haven’t been keeping in touch with or seeing people which can at times feel quite lonely, but at the moment I have such limited energy and Tilly takes everything I have. But I’m working on not fighting but accepting, but it’s hard when this isn’t the life I was expecting to have at 32.
Oh, and did I mention Tilly has been very ill with measles for the last 10 days?! She’s vaccinated against it, but no vaccine is 100%, and I’m told that by being vaccinated she has had a milder, less contagious, less dangerous illness, but she has been so poorly poor little thing. We’re in quarantine in the hope of not spreading the disease. Those most at risk are the very young, the very old and those with compromised immunity – people like me! But so far I’m ok and Tilly is now better. These 10 days have taken their toll on us all, with not much sleep for anyone in this house, no childcare, and a very unwell and demanding toddler. But thank goodness she is now well. We are released from quarantine tomorrow (Wednesday) and I will be celebrating by sending Tilly to her childminder and then going to hospital for another appointment!
What a blog of gloom – blimey.
I am very conscious that I am so much better than I was this time last year, and since my last blog there have been several first anniversaries – of the run up to treatment, in such a terrible state of limbo really not knowing what was to come, of cutting my hair short, my first chemo, my hair falling out. Exactly this time last year I remember being at a Diamond Jubilee party having just recovered from my first chemo. I had short hair but hadn’t yet shaved it, just a few strands were starting to fall out. I was carrying Tilly and she stroked each side of my head and as she pulled her hands away Tilly and I looked to see that in each little hand was a clump of my hair. Such a gut wrenching and surreal moment. And those memories will stay with me, and remind me how awful it all was, and also serve to remind me that it isn’t so awful now. The treatment was hell but it worked and I am forever grateful for that.
And it hasn’t all been gloom this month, there have been some good times in amongst all this stuff and I’m sure the good things will increase and the rubbish stuff will lessen over time, and at least Tilly can’t get measles ever again!