Anniversaries provide an opportunity to step back from life’s hectic distractions and reflect and learn from the past. It gives a chance to focus, recognise and accept the significance and part of the process of recovery. Keeping busy with the every day normal routines, responsibilities, relationships is great and healthy and part of normal life, but sometimes it means that in being swept along perhaps you don’t get the time or headspace to deal with thoughts and emotions which then keep bubbling away and erupt when you least expect it.
Reading that paragraph through, I sound like a slightly self righteous self-help book but I promise they are my own words and it is what I’ve found to be true over the last few months. Today is one of those chances to give myself a bit of space to reflect. A year ago today I had my surgery – right side mastectomy and complete lymph node clearance of my right chest wall and arm. I had finished chemo a month prior, I was bald with just a few tufts of baby hair, weak, scared, and felt utterly worn out, battered and bruised. I was stepping from a treatment and team of staff I knew, to the unknown again.
The month I’d had ‘off’ between chemo and surgery I hadn’t rested as I should. Instead I’d fought on through feeling atrocious, trying to maximise my time with Tilly and regain a little normality. I also cooked a ton of food to fill the freezer. Although I didn’t admit it, I was doing so incase something went wrong in surgery and I didn’t make it through. I just wanted to make things a little easier at home if that was the case. I wrote farewell letters too which remain sealed and unread. Strange what your mind makes the priority in stressful times.
The difference between me a year ago today and the me today is huge. I am SO much better, I look so much better. The recovery is very much on going and there have been a few set backs over the last few months. The aftermath of treatment is hard, much harder than I ever expected. The readjustments required of both body and mind are enormous. But I am happy to mark this day and realise that though sometimes it feels like it’s one step forward, two steps back, I have made a lot of progress in many areas in the past year, and fingers crossed it’s set to continue.
Here I am! I have been hiding away over the last couple of months, finding it all a bit much, but gradually coming to terms with the last 15 months and learning to acclimatise to some of the longer term changes it’s all brought.
There’s a few things to update you on from the last few weeks which I’ll do in future posts, but for now I’ll leave it at that and catch up with you later
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!
…a huge sigh of relief…based on the examination today, my surgeon is pretty confident there’s nothing sinister going on.
He can’t feel any suspicious lumps or bumps. There is some swelling which may be the beginning of lymphoedema in my chest wall. I’ve got an appointment with my lymphoedema nurse at the end of May to check it out.
The pain I’m experiencing is likely to be caused by damaged nerves firing at random. The nerves in my chest wall, armpit and arm have been damaged, cut and burned by chemo, surgery and radiotherapy and they are randomly active and regrowing. This is called neuropathic pain. I’m going to be prescribed Gabapentin which is an epilepsy drug which has been found to be good at blocking pain receptors in the brain. These pains may continue for a long time, perhaps years, so hopefully the pain relief will make things more manageable.
I am being sent for an ultrasound scan in a week or so to confirm that there’s nothing more serious, so I’ll look forward to the results of that.
And the results of my mammogram are back and all is ok – hooray!
And I’ve been referred to a post-cancer fatigue course which should be helpful, as exhaustion is probably the most frustrating side effect of treatment at the moment.
It wasn’t great to be back in the waiting rooms of old, and they were running late as per so our visit was 5 hours in all. The staff were all lovely as usual. I’ve been there so much over the last year they all know me and it is a very caring and friendly place to be. The pains, worries, concerns that I have post treatment are all par for the course and completely normal, they assure me, which is some comfort. As my surgeon said, having a cancer diagnosis so young has an impact of its own, and we’ve had to leave our pre-diagnosis normal behind and now we’re in the process of working out what our new normal is going to be.
And a big thankyou to everyone who has sent texts, emails etc in the lead up to today’s appointment. It has loomed large over the last few days and it was really lovely to hear from you and have your support, as always.
So, all in all it has been a very good day. A GP appointment in a week or so for the new drugs, an ultrasound appointment in a couple of weeks, the lymphoedema appointment and then the course on how to cope with fatigue. Hmmmm, my diary’s beginning to look a bit too medical orientated again…more fun stuff please!
My weekend in Paris was fabulous. Great company, lots of fun and some time and space on my own to pootle around and chill out. What a treat.
It feels like a long time ago though! It’s been a busy week or so since with mum up here helping out, Dan being hideously ill with a bug, luckily recovering in time for his birthday weekend. We had a really wonderful time with friends celebrating and appreciating the good things in life. Digby dog has returned from his very long holiday-he went to Dan’s sister’s for about 10 months which helped hugely as there was just so much going on here during treatment. He’s fitted right back in and his return feels like the start of things returning to a little normality. And the weather’s been pretty amazing too which has given everyone a bit of a boost.
But through all the good things that voice in my head is getting louder and more pushy. I have my appointment with my surgeon tomorrow and the underlying stress about it is high. Anxiety dreams a-go-go, the classic clichés of disaster movie survival or ‘hang on, why am I naked in this otherwise normal everyday scene?!’
I’m trying to spin this recall to the unit as a good thing- a chance to see my surgeon who I haven’t seen since my two week check after surgery back in October, an opportunity to be properly checked over by the man in the know. The two quite distinct pains-one from my collar bone down to the bottom of my ribs on my right side, and one in my armpit-are still very much there. My main way of coping is trying to ignore it which is, I’ve found, quite tiring and not entirely successful! From what I understand pains and twinges can carry on for years and years on and off after treatment, but they can be the sign of something more serious starting.
And we’ll be getting the results of my mammogram-normally you hear by letter but they’ll tell me tomorrow in the meeting.
It’s really hard to move on with getting on with life when you’re so aware of what may be lurking. We’ve lived through the reality of having the rug pulled out from under you and life changed overnight and it’s hard to feel able to plan ahead a couple of months let alone a few years. Frustratingly life still feels on hold-we’re nervous to look to the future, having experienced the intense pain of having some of your life’s hopes and plans stolen away. And this limbo of knowing a pain, a scan, an appointment could change everything once again is something we will have to learn to live with but so far it’s proved to be not that easy.
Just a quick note to let you know that I have been summoned back to the Breast Unit. The radiographer called to say I now have an appointment in less than two weeks time as my surgeon wants to see me. I asked if it was due to the mammogram results and she said it was in fact due to the increasing aches and pains I reported at my mammogram appointment.
That little voice I can hear suggests that perhaps they have suspicions of sinister goings on, but that voice will just have to quieten down a little – I have more important fun things to do than listen to that.
Clearly the only answer is to pop off to Paris and leave my worries behind – easy, right?! By 5pm today I will be in Paris, but I suspect those worries will have sneaked into my suitcase, the cheeky stowaways.
What do you give a girl for the first anniversary of her cancer diagnosis? A mammogram of course!
Went today for a celebratory mammogram on the lonely boob. So uncomfortable. The radiographer did the scans, then reviewed them, then did two further scans to make sure she’d got a clear enough image. The results won’t be back for 3 weeks so I’ll try not to worry about it til then…