31st August – Radiotherapy and the end of ‘active treatment’
Firstly I would like to apologise for the horrible tardiness of this latest ramble. By way of explanation, during chemo Ally and I decided that it was too much for us both to be living apart during the week (I guess my diagnosis was some sort of wake up call – for want of a better phrase) and so we got our house valued and on the market to sell. We had a great offer on it almost immediately, so we set about looking for the new home we wanted; we have always had great retirement plans – a farm in the middle of nowhere, close to the seaside; and so despite neither of us retiring we decided that is what we would look for; our dream home. Unbelievably we found it, a 23 acre farm in the middle of Exmoor, perfectly commutable for Ally, and with plenty of outbuildings and a beautiful 18th century farmhouse. So, we were all set to move, the house was packed up (during my radiotherapy, which was far from easy) and we had painters, decorators, gardeners, plumbers etc all primed to start work the week after exchange and completion. Sadly and most annoyingly the people at the bottom of the chain decided to pull out of the move 5 minutes before we were due to exchange, which meant that the lovely couple buying our house now couldn’t do so; we were devastated. We couldn’t stand to feel so bitterly disappointed in a house full of boxes so we took ourselves off to Watergate Bay down in Cornwall for a week, and that is why I haven’t written for such a long time.
I’ll now go back to Radiotherapy…
I really thought that radiotherapy would be easy, a bit of a pest having to go all the way into town and back each day, an hour long round trip, but it certainly wouldn’t be as invasive or as frightening as chemo or surgery. Goodness I was wrong! I went alone to my first appointment after dropping Filly at nursery. I was asked to undress from the waist up and to lie on, what appeared to be a medieval torture rack. I was then told to put both of my arms above my head and to lie still, as in do not move at all. The radiographers then proceeded to line me up on the machine using the tattoos they’d given me and by adding strange marks all over my torso (with marker pen). During all of this the radiographers were deathly quiet, only speaking to each other to confirm measurements or to tell me that they would be leaving the room for each x-ray (to check my position) and for each batch of radiation. They then left the room, and the giant, scary machine moved around me. The radiographers came back in, drew some more marks on me and the process was repeated again several more times. After almost an hour of this I was told that I was now ready for my treatment, which was actually very quick. I had to hold my breath each time that I was being zapped with the radiation to try and prevent any additional damage to my heart and lungs. They would be receiving some radiation and I was told that there would, almost certainly, be some lasting scarring to my lungs but by holding my breath it should help to minimise the damage. The actual treatment sounds just like the Geiger counter I remembered from A-Level physics classes and is completely painless to receive. I have some vein cording following my operation on my left arm and my movement in my left shoulder is quite restricted so it was painful to keep my arms above my head for such a long time, but this was the only pain.
I left the hospital and sat in my car and cried for an embarrassingly long time. I don’t think I have ever felt so alone as I did during my first two radiotherapy treatments, as you know Ally lives away from home during the week so I’m used to being on my own and have spent the majority of this ‘treatment year’ on my own, but I have been kept busy and I have a toddler so there’s always something going on, but lying there on that radiotherapy bed with just my own thoughts was a terrifying place to be. I’m not afraid to think about what I’ve been through and what the future may bring now, but I want to do it on my terms, being all alone was so confronting and following my second session I almost stopped the treatment. It was thanks to an enormously kind lady, who I know because sadly she also has been through breast cancer treatment in her 30s, who got in touch with the hospital on my behalf and asked for them to move me to a different LINAC machine, one which had a special ‘sky ceiling’ to look at, which she had helped to fundraise for. In doing this the radiographers also understood quite how awful I was feeling and treated me differently from then onwards. As an aside, please don’t think that I am blaming the radiographers for how I was feeling, yes they could’ve been friendlier at first, but they didn’t know that I wasn’t talking because I was terrified, they were focussed on doing their job properly and for that I am grateful. And as soon as I felt more comfortable and tried talking to them, they were all lovely people and we actually had a lot of laughter for the remaining two and a half weeks.
If you follow my Facebook, Twitter or Instagram pages (I’m a complete social media whore nowadays, I blame the long hours recovering from chemo and surgery!) you may have seen that I set myself a (very shallow) challenge for radiotherapy which was to wear a different pair of shoes to each appointment. I was inspired by another lovely lady, who has recently completed radiotherapy who wore a different shade of lipstick to each radio’ session. Despite being in the midst of packing boxes I did wear a different pair each day which did cheer me up and gave me a focus and something to look forward to (don’t tell my husband but I do have a shoe addiction and had plenty to choose from!) The last day of radiotherapy was very emotional, but the first tears came because I saved my favourite shoes until last and they were agony. There was an hour delay for my treatment so I sat in the waiting room barefooted having lovely gossipy chats with the other patients that I’d met; I was the youngest again by about 30 years.
Back when I first met my oncologist and we went through my treatment plan I thought how it would feel to come to the end of active treatment (by active treatment I mean chemo, surgery and radio’) and I assumed that I would feel jubilant and that there would be lots of celebrating. In fact I felt very little, I felt numb and scared. I still don’t feel as though it has all sunk in, I feel scared and I feel alone in that there are very few people who understand the terror that each headache or cough or ache brings. I am still waiting to see my oncologist for a follow up, I don’t know if one is ever told ‘you’re all clear’ but so far no one has told me that. Yes, I was told that when they removed my breast and lymph nodes no active cancer cells were found, but I just don’t have enough trust in the system to believe that this is correct, that I am cancer free.
With all of this going on I am still having the 3 weekly Herceptin jabs, which get more painful each time and give me a dead leg for a week, along with the daily Tamoxifen tablets, which give me horribly achy bones and muscles and I still can’t seem to give the cumulative chemo’ / radio’ / Tamoxifen fatigue the boot, I try so very hard to not let this stop me doing anything, but sometimes I still want to run away to a desert island and bury my head in the sand for a year or 2! And that’s without even mentioning the dreaded menopause symptoms and the constant (24/7) pain I have from surgery that are more constant reminders of the fragility of life and the plans we have. Please don’t think I am grumbling, I am incredibly lucky to be able to have all of these treatments, its just that I’ve tried to be as brutally honest as I can be while writing these little pieces and I don’t want to stop that just because it isn’t as hilarious as I usually am.
So that brings me to the end of active treatment. It has been, without doubt, the hardest thing my family and I have endured, it has certainly changed me, in someways for the better and in many ways for the worst – I certainly look different, my hair is thinner than it was, my eyelashes have grown back but have reached a weird length and are refusing to grow any longer, I have lost a lot of strength and movement in my left arm and shoulder and of course I am rather lop-sided in the chest area. There are no good sides or positives to having had breast cancer but I am determined not to let this ruin whatever the rest of my life is, and I say that without being pessimistic or looking for sympathy, the facts are that women who get breast cancer in their 20s and 30s usually have more aggressive types and do have a shorter life expectancy, that isn’t to say I will do my damnedest to stick around as long as possible and make every moment count. I’m unsure now whether I should keep writing as this did start out as a blog (still hate that word) about treatment and the biggest parts of treatment are over, I still feel like there are lots of other areas about going through treatment that I haven’t even touched on – I have about a million blogs written in my mind when my Tamoxifen and Herceptin led insomnia kicks in. I’d like to tell you about what not to say to a cancer patient, what gifts are useful, how relationships with friends and family change, how some friends and family disappear off the face of the earth and don’t even get in touch, how some friends have kept me going through my toughest moments, how people I’ve never met can be so so very kind that its moved me to tears on more than one occasion, about how to cope with being told categorically that you’ll never be able to extend your family, how to manage the menopause in your 30s, how to dress with only one breast, how much of a pain in the arse it is to have to find a prosthetic each morning, how much one can hate oneself in the mirror yet still be proud of what ones body can endure, I could keep going for days. If you’re interested in any more of my ramblings, and maybe one day you’ll get to hear about the farm and hopefully when I can get back to work, then do let me know, if not then I sincerely hope that you’ve enjoyed what I’ve written and its given you an insight into 8 months in the life of a cancer patient. People have been generous to say that my blogs have helped them through their diagnosis and treatment and thats the greatest praise I could wish for.
Please get to know your body, check your breasts, let your doctor know if there is anything untoward, don’t wait; the treatment is rough, but doable and infinitely better than the alternative.