My wrists have been well and truly slapped (self flagellation rules!) because it’s been so long since I updated my blog. Huge apologies, and thanks too for all the comments, and messages, my last post prompted.
I’m not going to pretend the last few weeks have been easy, they haven’t, and that’s one of the reasons there’s been a gap in posting. I’ve had a bit of a low spell and found it hard to summon up the energy or inclination to write and also, quite frankly, didn’t want to inflict my misery on anyone else!
Before succumbing to my spell of being ‘down in the dumps’ I had some amazing experiences over the summer, the highlight of which was a reunion in the North East where a gang of 14 us who were at senior school together got together in a seaside village. I hadn’t seen any of them (bar one) since leaving school 26 years ago so I was incredibly nervous, but it was fantastic. I had such a good time and felt so relaxed and comfortable (or maybe that was just the wine!) that I ditched my wig at some point in the evening. It re-appeared in a photo on someone else’s head – but neither of us remember that, so it’s fair to say a good time was had by all, and plans are already afoot to make it an annual event 🙂
Another highlight of the summer was the Relay for Life in Aylesbury – a 24 hour fundraising event – which I bored you all about on Facebook (including the photo of me in the Superman Onesie!) but we revealed last week that the 2014 fundraising total was a staggering £103,166.42. Thirty-two teams with more than 500 members raised funds both via the Relay itself, and also through other events over the year, with all money going to Cancer Research UK. I helped out with publicity this year and am now on the committee for 2015 so I will be boring you even more in the months to come!
There have also been many lovely days out – a Saturday in Regents Park with my sister-in-law, an overnight seaside stay with Ray’s cousin and his wife, and a brilliant day in Southend to scatter my dear mum and dad-in-laws ashes, full of love and laughter as they were reunited. Tom has been in various places over the last 13 years – buried in the garden, a plant pot, and latterly kept in a wardrobe – but following Jean’s death in May we took both sets of ashes, mixed together, to their favourite place, scattered them off the end of the pier and then had a fish and chips at Clarke’s and a Rossi’s ice cream. A perfect send off to one of the sweetest, kindest couples I know.
In terms of treatment my Herceptin and Zometa infusions have carried on every three weeks, as they will do indefinitely, and I’ve also had 15 sessions of radiotherapy. I was lucky to have the 8.30am slot most mornings which meant an early start to get over to Oxford, but at least I got a parking space. By the time I came out at 9am there were often three cars queuing up for an empty space and I know ladies with later appointments who had to go an hour early to make sure they got parked in time for their session.
The treatment itself was downright strange, lying on a metal table (calling it a bed would have exaggerated its size and comfort), topless, with my arms above my head, balanced in arm and wrist cuffs. If I’d seen this anywhere other than a hospital I’d have thought it some bizarre S&M contraption!
At a planning meeting I was ‘marked up’ with three tiny tattoos – one on my chest and one on each side – and these were used to line me up on the machine each day. The lining up involved lots of manoeuvring me by pulling a pillowcase underneath me back and forwards, and a fair bit of prodding and poking of flesh to get the tattoo dots lined up for the lasers. The zapping itself is over in a matter of minutes and then you jump down, slap on cream or gel and carry on with the rest of your day.
The main side effect of radiotherapy is the skin burning, something that continues for 2-3 weeks after treatment finishes (basically you continue to cook!) I had 15 strong sessions as I’ve decided against reconstruction, whereas those considering further surgery have 25. I also had a special pad (a bolus) on my chest during radiotherapy as the cancer had been in the skin as well as the tumours and the bolus ensures the skin is completely zapped.
I religiously applied Aloe Vera gel to my skin for the two weeks before treatment, and since finishing on August 26th, but as the radiotherapy continued to work I developed a horribly burned patch of skin under my arm which, quite frankly, made me really miserable. The pain was worse than anything I felt after surgery, and proved really difficult to heal. I now realise due to the position and shape of the burn that I missed that patch with the gel, not knowing the treatment was going to affect that area 😦
After various (conflicting) suggestions from nurses and doctors which all failed to help I returned to slapping on loads of my trusty Aloe Vera, topping with a non-adhesive dressing and then wearing a vest style top with sanitary pads tucked in to keep it protected without having to use tape (which was tried earlier in the week by the medics and only resulted in taking more skin off – which led to more blisters!) Thankfully this approach has led to a massive improvement in the last few days and meant we have been able to escape on holiday, something that looked in doubt at one point.
My hair has started to sprout and I even had to have a tiny bit trimmed off the sides this week. I’ve also had it tinted a brownish shade because I hated the dirty grey that was growing through. Hair everywhere else has started to grow too – it feels like my body is coming back to life after a period of hibernation, though some side effects are still much in evidence:
1) I’m still suffering from chemo brain – although my memory is improving thanks to supplements I’m taking
2) the Herceptin causes puffy hands and feet so I’ve had to have my wedding and engagement rings increased by three sizes (and that’s my good side!) and am limited to a small selection of shoes that still fit
3) I’m plagued by pins and needles in my left arm and hand much of the time and
4) have a swollen, wobbly midriff, even though I’ve lost weight from other places!
When my hair started to grow I also developed a covering of fine, downy hair on my face. Thank goodness for Google – this is entirely normal apparently – and I escaped lightly as some women develop it on their hands and chest too! The Herceptin has also given me aching joints (drinking Aloe Vera gel with glucosamine and chondrition has helped tremendously) but over all I’ve come to the conclusion that cancer treatments really are a gift that keeps on giving!!
Towards the end of my radiotherapy, and for 2-3 weeks after, I was very emotional and ‘down in the dumps’ and I realise now it was a combination of many things. I recovered well from the mastectomy but the reality of the incurable diagnosis really hit home. Physically the radiotherapy was tiring – mainly the travelling backward and forward to Oxford each day (Ray, bless him took unpaid leave to drive me to 8 out of the 15 sessions), and it all also coincided with my contract finishing at work. Even though I’d been on sick leave since January 13th, I’d kept in touch with colleagues, checked my work email, responded to appeals for ideas on projects, and generally kept myself ‘in the loop’. The decision not to return is entirely mine due to my prognosis, but not to be employed was a very strange feeling as I’ve never been out of work since the day I left university 26 years ago. It really shook my confidence (daft I know) as the future is bright and exciting – more of which will be revealed next month!
As I type this I’m actually sitting on a plane, headed for Lanzarote, for what I KNOW will be a magical 10 days with my beloved Ray. He deserves this holiday so much, having been an absolute saint over the last 10 months. When my raw, blistering skin was at its worst last week we really did think we might have to cancel but we’re here, on the plane, and it is the most fantastic feeling 🙂 It will also be the longest time in months with no medical appointments – a real novelty – and I won’t dwell on the fact that just a few hours after we land I’ll at the GPs for blood tests prior to my next round of Herceptin and Zometa the following day (then my next CT, wound aspiration, prosthesis fitting, and echocardiogram in the space of three weeks!)
Most of you know how much we love the island and we’re returning to Bungalows Nautilus for what will be our 9th (we think) visit. We love going to new places but staying there is like home from home and we can relax from the moment we arrive. I’ll sign off now as we’ve just been told to buckle-up for landing and promise not to leave it so long before posting again (I seem to remember I might have said that before!) I’ve read a book recently written by an American lady with breast cancer who blogged EVERY day – often very short updates – to let everyone how she was. Be thankful I haven’t inflicted that level of contact on you – you really would have got fed up with me very quickly!
PS – technology prevented me from posting this until now, one day into our holiday, so I can tell you it’s everything we hoped for and more. It’s 11.40pm, I’m sitting outside, enjoying the moment, revelling in the fact we have another whole nine days before we fly home. Life is good.