The Good
It’s been a while since I posted anything new on here. I think I left it on a cliffhanger – that is, if a blog about breast cancer could ever be a page-turner capable of possessing a cliffhanger!
The results of my second surgery on January 27, 2022. This was a further wide excision of the same area as my op on December 2 - re-excision. This was the last-ditch attempt to save me from a mastectomy, hoping the surgeon would be able to find and remove sufficient clear margins to save my breast. I’d been convinced that when I returned for my follow-up that he would look at me and tell me how hard he’d tried, but there just was not enough breast tissue available on my small elevation, for them to remove enough to find any negative margins.
Glory Halleluiah! Good news at last. All the cancer was removed, negative margins were achieved, and no further surgery is required. I could have kissed that surgeon, but I was in shock – luckily for him. He tried his best, and his best was my Payday! No mastectomy.
Furthermore, it seems that the cancer itself was not as bad as I’d thought and was mucinous – in other words, a relatively small invasive carcinoma swimming around in pools of mucin (mucous to you and me.) As I understand it, this means it was not a 2.5cm lump of cancer cells, but little clumps taking a swim. It is a Stage 1 grade 2 cancer, Oestrogen and Progesterone positive, but the nodes are negative. I’m told that all these features make it a ‘good cancer’ in terms of prognosis and curability. Furthermore, the Ki 67 score (proliferation probability) is a mere 1-2% which some would say is equivalent to zero. These are critical indicators for any future treatments – if any – after radiotherapy. I will return to this later, or in my next post.
Post-op pain was bad because they had to cut into tissue that had recently been operated on, plus have a good dig around, but the end justified the means.
From an aesthetic perspective, I can’t say that my right tit looks that pretty. It seems to look worse after the second operation and as time passes. But the surgeon did have to remove a fair amount of tissue from a relatively small breast, so it looks misshapen.
My subsequent radiotherapy seems to have made this worse, but they tell me that it should improve. I try not to look at it. However, I must keep reminding myself that I escaped the horrors of a mastectomy.
At one time I thought that if it looked too ugly, I might seek a private sector reconstruction to make it look more like it did before. But the thought of going through more surgery and knowing that to take fat and tissue from somewhere else on my body, effectively means two areas being cut, I’ve forced my vanity to stand down. I don’t want to go through all that post-operative pain and healing again, purely for cosmetic purposes. Furthermore, there is risk involved in yet another general anaesthetic. However, I might change my mind on this issue next year – Quien sabe!
That was the Good
The Bad
Since my diagnosis, I’ve had to stop my HRT which I’ve been on since all my reproductive organs were removed before I was 40. That resulted in a surgically induced menopause. Luckily, I was immediately put on estrogen and testosterone replacement therapy. Now, I’ve fallen off the cliff with sudden withdrawal. It is horrendous and one oncologist admitted that they are aware that what I am experiencing is much worse than a natural menopause. But what am I supposed to do? Suck it up and just be grateful I’m alive?
Over the past weeks, I’ve been putting all my symptoms together and realised that what I thought was bone cancer or some other serious illness in my brain is all the result of a total lack of sex hormones because of the sudden withdrawal of my estrogen and testosterone replacement therapy. It’s been affecting almost every part of me – from extreme fatigue, insomnia, brain fog, (I thought I had the start of dementia) muscle and bone pain, skin degradation, genitourinary issues, libido-annihilation, depression and so it goes on. It took me a while to get to these conclusions, but I feel I can see a chink of light that might lead me back to The Real Me (remember the song from the first blog post?)
Despair has found a window through which I might find a way out and the possibility of regaining some control of my body and life. I’ll come back to this later.
The Scary Unknown
I think I’ll make this section brief, as I’ve subsequently learned a lot about these aspects of the proposed treatment of five years of the Aromatase Inhibitor, Letrozole.
It is scary when my treatment plan includes five years of a drug that can have such a serious impact on my quality of life (QOL.) This is even more daunting, given that I have not been told what benefit this will be for me with the risk factors I currently have. I am at the low end of the spectrum of risk, so I need to investigate this drug and evaluate the cost/benefit effects of taking it.
I am already experiencing some serious menopausal symptoms that have suddenly descended. It is no longer a question of vanity, or desire for a functioning libido. I worry about the effects on my brain functioning, my risks of cardiovascular events, loss of bone density, with the associated risks of osteoporosis leading to fractures; add to these is depression, extreme fatigue and generally feeling that life is not worth living. I don’t recognise myself in any of this negative bundle of symptoms. If I am to live, I want it to be a life that is worth living. If I am experiencing all this without introducing a drug that could make all these so much worse, why would I take the risk of taking it, if the additional benefits appear so small?
This is the scary unknown. However, throughout my life, I’ve tried to understand ‘the unknown’ and find the known within the unknown. (That sentence sounds remarkably ‘Rumsfeldian’)
The Future
I want to regain my life. I want to have a good quality of life. I want to get back to doing some creative work. I need to play my beautiful Bluthner again. I need to write some more songs.
I need to revise my memoir through the prism of breast cancer. I want to enter the Bridport Memoir Prize competition. Now I understand the real themes of my story: loss, survival, and joy. I’ll be damned if cancer or its treatments will stop me from achieving all this.
I’m in the fortunate position of being able to support emerging female artists, initially via the https://www.hollybushpaintingprize.com/ Below are the winning paintings of 2020 and 2021 for the Tim May Memorial Prize I set up in memory of my late husband. This year there will also be a Susan Angoy Prize for artists of African and Caribbean heritage. I can’t wait to see the entries after the closing date of May 1.
Winner of the Tim May Memorial Prize 2020
The Smoothie by Tijana Petrovic
Winner of The Tim May Memorial Prize 2021
Redemption by Angelina Ritchie-Smith
I want to resume my role as a mentor and be an ambassador for the https://www.amosbursary.org.uk/ I have had a relatively privileged life, with so many opportunities and advantages. I am passionate about giving back some of this to those who have not had these advantages. I take pleasure in seeing a young person grow and flourish, at times against all the odds. There, by the grace of God, go I. This is my daily message to myself. I have no intention of cancer stopping me from doing this.
I am also a Trustee of a wonderful charity that does amazing work in rural South Africa, working with orphans and communities devastated by the impact of HIV/AIDS and poverty. I want to be able to play a more active role in www.topsyfoundation.org.uk
I have no intention of allowing cancer to prevent me from doing this.
I’m deeply passionate about doing whatever I can to contribute to sustainable development, address the issues of climate change, and help ensure there is a planet for my son, his peer group, and the generations that follow. In my small way, I hope to contribute towards this, initially, through a donation to a foundation that is close to my heart. I will do whatever I can to help develop and promote it. In the next few months, there will be a new website full of amazing initiatives, but here it is now. https://omef.org.uk/ It will soon be transformed.
Why would I let cancer stop me from doing all of these activities? I choose life and living!
I will dance, make music, write again, and be a responsible and generous global citizen. I will do these and live outrageously until I am no longer in this life – and beyond!
