As Christmas and New Year draw closer I’ve been reflecting on the last 12 months and how much life has changed.
This time of year will now always be punctuated by ‘anniversary’ reminders – it was a year ago on November 26th I got my diagnosis, a year today (December 23rd) I saw my oncologist for the first time, and January 13th (three weeks today) since I had my first round of chemo. It’s somehow fitting that I’m starting this, on my phone, while in the chemo unit having my regular Herceptin and Zometa treatment. I come every three weeks and it’s now like home from home. I know all the staff, they know me, the volunteers know how I take my tea, and we all laugh our way through these regular treatment sessions, making the best of the situation.
My latest MRI and CT scans are good – or as good as they can be. There’s no deterioration in my condition so I stay on the current treatment regime. I’ve read about a lady who’s just had her 180th round of Herceptin (I’m on number 13) and she is still going strong – 10.5 years after being diagnosed with secondary breast cancer. That gives me hope, as do the ladies I’ve met at a group in Oxford specifically for those living with secondary breast cancer. Again the longest surviving member is about 11 years post diagnosis, having had pretty much every targeted treatment there is, clinical trials and a couple of near death experiences. It gives me determination and hope to meet these amazing women, but also a reality check as to what the future holds.
I am struggling to accept the tiredness that comes with my situation – I look OK so why don’t I feel better? It’s par for the course and a result of three things:
1) the treatment to date – chemotherapy (which poisons your body), radiotherapy (which burns it with radioactive beams), surgery (a major shock to the system as well as the general anaesthetic);
2) the ongoing treatment which has a range of side effects from aching joints, fatigue, depression to cold symptoms and weight loss or gain (you can guess which way the pendulum swung with me!)
3) and living with the secondary diagnosis which is a psychological drain – you can never be sure how well you are going to be for how long. Planning becomes a challenge. I’m wary of planning too much in case the situation changes, but that feeling competes with a desire to do as much as possible and visit as many places as possible, as soon as possible, while I still can.
Since my last post the main change has been me returning to work, but as an independent PR consultant working from home. I’m planning to work a maximum of 3 days a week so in the New Year need to be disciplined and organised – that’s one of my New Year resolutions! I even went to see an accountant last week so I get on top of my invoicing and expenses. Bless him, he had to draw a diagram to help me understand tax self-assessment and the fact you pay in arrears and advance – I did explain words are my strength, not numbers!
The other changes recently are physical – I now have very curly hair! It’s got a mind of it’s own and Ray says it’s like waking up with a different woman every day, we never know what it’s going to do from one day to the next. I’m also the proud owner of a weighted fake boob and, two weeks on, I still get a thrill when I look down, or glance in a mirror, to see ‘matching mounds’. Since my op in June I’ve been lop-sided and pretty much stuck to wearing a range of loose-fitting tops. I was issued with a ‘softie’ fake boob but it was so light it ended up six inches higher, creeping out of my top so, on the few occasions I wore it, it usually got whipped out and stuffed in my handbag! Various of us who underwent surgery around the same time were advised to weight them down with different things – buttons and marbles among the suggestions – but I imagined walking along clunking so gave that idea a miss. The proper prosthesis is weighted so stays in place and looks great, a huge relief as I decided early on not to undergo reconstruction. Psychologically I don’t have a problem with having a boob missing, and the reconstruction is a far longer and more complex operation with two wound sites, so I didn’t seriously consider it.
I’ve unfortunately developed lymphodaema – not uncommon in breast cancer patients who have also had lymph nodes removed as the lymph doesn’t drain properly. I now boast a right upper arm which is 8cm bigger than the left, more solid, and gives me a painful tingling sensation down my arm into my fingers. I’m doing self massage on a regular basis, wear a compression sleeve every day and Ray wraps special tape around my arm and bank to try to encourage the lymph fluid to drain into different nodes but it’s a very slow process and there’s guarantee it will work. One alternative is a pioneering microsurgery operation where the lymph glands and nearby veins are severed and stitched together – if I win the lottery I might consider it as it’s only available privately at the moment 🙂
I look back at photos from last year and feel like a different person. So much has happened. I look different, feel different, and am constantly having to revise my expectations and ambitions – something I’m not good at yet, but I’m getting there! I’ve also met some incredible people through my treatment – amazing medical professionals, and many, many lovely patients, and cancer survivors, who make this crazy, challenging journey an easier path to navigate.
My thanks to you all for keeping up to date with me on here, and for all your lovely messages. Wishing you all the happiest Christmas and New Year possible, and apologies to those who received an email earlier today regarding an update. I tried to save this blog post half way through writing but managed to publish it instead (numbers and IT are not my strong point!) Hopefully this version makes more sense 🙂 xxx