NB I have included some photographs of my scar and stitches at the end of this blog. These are very personal to me and are my property.
‘Life is a journey that must be traveled no matter how bad the roads and accommodations’ – Brainyqoute
1st March 2018
As storm Emma and the beast from the East collide on this freezing March (for heavens sakes!) evening, I pull the duvet up a little higher and snuggle down a little deeper. I am hibernating in the aftermath of hurricane hysterectomy!!
Two weeks post op and my abdomen throbs, a little reminder that it is still settling, still snuggling down itself, healing, finding new space. I wriggle to find a comfortable position as I move onto my right side and use a pillow to bolster my left leg to support myself. The last time I had to support myself in bed like this was when I was pregnant and then after my c section. How on earth did I manage with a new born baby too?!
Getting to this point has been a journey! Actually more of a long winded eleven year around the world challenge, but hey, its been an experience! The process of making this decision and pro actively taking this action has been challenging but has taught me that it doesn’t matter how long it takes us to get somewhere, its the journey that counts.
Two years ago I never thought I would have been strong or brave enough to put myself through more surgery, no matter how much risk it eliminated. Throughout many of my Samspace blogs and vlogs I have likened the far reaching side effects of cancer treatment to climbing down a mountain. Finishing treatment might be the summit but you still have to get down and that climb has its own set of challenges. When making big decisions, just like that descent, it can’t be rushed. It is an organic process! Life and all of its twists and turns are all part of an intricate pattern of pathways, roads and milestones, thats why its called a journey. The speed at which we travel this course is a natural process and timing is everything.
Let’s leave the mountain for a moment though and think about volcano’s! Like Vesuvius about to erupt, the side effects of one of my maintenance drugs, Zoladex, had been rumbling for a while, but I had always thought it was normal. For anyone not familiar with this drug, it is a small slow releasing pellet injected into the tummy area, in my case, every three months on alternating sides, and works by down regulating oestrogen production for hormonally receptive cancers.
I imagined it as a little bubble around my ovaries, protecting them but by doing that it forced me into a medically induced menopause, more so than the drug tamoxifen. What I didn’t appreciate was how the surge of oestrogen that I was having as the zoladex wore off, and this dramatic change in hormone levels was causing a chemical in balance too. Last autumn, that volcano erupted and the lava of anxiety, insomnia, lack of energy, disconnection with those close to me and emotional overwhelm poured out and the fiery flow engulfed me.
After realising this just wasn’t normal, I met with my breast care nurse and then my GP. It was gently suggested that some anti depressants may be a short term method of managing the anxiety as no one could give me a definitive answer as to how long I would need to stay on these maintenance drugs. The frustration was just an added factor, manifesting in this constant hum of anxiety. I was four years into my remission, approaching the big 40 and being the control freak I am (and only human!) I wanted a clearer picture of my future, but I couldn’t take any chances. I had such mixed feelings about more drugs. All I wanted was for this fog to lift but the idea of taking more drugs to help the side effects of other drugs seemed absolutely ridiculous! I felt a mix of relief and dread, shame and pride! Discombobulated was my middle name!
I saw my consultant for a routine check up in December. I recounted the last couple of months and he agreed, this was not ok! His view was that since I had had breast cancer at a younger age than most and more than once, I had more air miles left (sadly not to cash in for the Caribbean!) and therefore the treatment plan was less text book, but my quality of life was paramount. I felt like some kind of rare species!
As we talked through the options, of which there were few, we appreciated that the concoction I was on, was clearly working, but to what detriment?! My consultant didn’t want to make any hasty decisions but thought it best for me to see a hormonal specialist in London. As we talked, the words ‘maybe I should just have my ovaries out!’ spilled out of my mouth and all at once, the needle scratched to a halt and the words were left hanging between us, like music notes falling off a page. ‘What about your fertility?’ he asked,
I sighed, ’There aren’t going to be any more babies are there.’ This time I wasn’t asking the question.
On arriving to see Dr Alison Jones, I was reassured by her knowledge of my case, her professional relationship with my consultant and her experience with hormonal cancers. She was amazing. On talking through the situation as it stood, she confirmed that having my ovaries removed was a ‘no brainer’, ultimately meaning I would no longer need to have zoladex as part of my drug regime! She also told me that most pre menopausal women taking three monthly rounds of zoladex are also on the same medication I had been put on, to manage the side effects and that, given my history, another pregnancy was out of the question. With an almighty thump, I landed on Planet Acceptance, the fog cleared, I could see the path ahead clearly and the release that came with that, was immense. The journey had taken long enough!
After seeing my gynaecologist, it was suggested that in addition to removing my ovaries, a full hysterectomy would be advised too. There had been recent abnormalities and after considering my background, she advised it would be better to do the whole lot in one go. It would save any further surgery further down the line as well as reduce any further cancer risk. The recovery would be longer but I was young, fit and otherwise well.
It had been a long time coming, but the wheels were in motion and there was a sense of relief; facing up to the fact that I was getting no younger, that there would be no more more babies, that it was totally irreversible, that I would be post menopausal at a younger age than most, but that my risk of not only ovarian, but uterine and cervical cancers would be non existent and I would only have to take Tamoxifen going forward, far out weighed the concerns. It had been such a huge shadow that had hovered so heavy for so long but now I could breathe. I felt empowered that with the best advice, after going down every road I could, I had been pro active and actively considered all the options and come to a definitive answer for myself and if it hadn’t been for Mount Zoladex erupting a few months before, i might never have got to that point!
The day arrived. We had decided to return to the hospital where I had had my mastectomy and reconstruction, my lumpectomy and all other surgeries, as well as being born there! I was nervous but there was a huge sense of the final piece of the jigsaw being laid, the end of a rather long chapter brought to a close! As we arrived, all my surgery fears were put to rest by the incredible doctors. The amount of spontaneous trust we have, as we willingly hand over our lives to a medical team an hour before surgery, is always slightly unnerving!!
I was given a spinal but I couldn’t have key hole or tolerate heavy duty pain killers (more is the shame!) More needles, more poking and prodding for veins, which always seem to vanish at just the right time, and suddenly, I was coming around. Goodness only knows what I was jabbering on about before I conked out! Its funny to think how ‘with it’ we think we are as we come around from a general too. I thought I was totally coherent and was absolutely delighted that I wasn’t feeling sick. So delighted in fact, that I would tell any nurse or doctor who came over. My gynae said it was sheer entertainment! Oh dear (head in hands, shaking my head in embarrassment!!) That’s a Friday night Ill want to forget in a hurry and I didn’t drink a drop!
During my four day stay, there were emotional moments, there was sickness and there was also surrender. We forget so easily how to let ourselves heal, emotionally and physically. We have to re learn how to let it wash over us and just rest. The first week was tough, I guess it always is. Aneasthetic is a bitch! I defy anyone who disagrees! Each step was a little mountain; getting out of bed, eating a meal, having a shower, going to the loo, walking down the corridor, having the catheter out, getting dressed myself, having the staples removed. All huge, massive achievements. The little things become huge things; necessary hurdles you have to jump during the recovery process. The mind pounces on each accomplishment, savouring every inch, buoyed up, celebrating, until the fatigue descends again and sleep erases it, leaving the slate clean for the next day.
18th March 2018
Now four weeks on, on the one hand, recovery feels as if it has been slow and frustrating but after my check ups, I know I have been rocking it! After being attacked by what looked like a Rymans stapler, (staples in photo below!) the scars on the outside are healing brilliantly. I swear Rosehip oil is the creme de la creme of oils and I was thrilled to hear that the histology of everything that had been sent off for further testing had come back clear of anything sinister! Interestingly, it appeared I had had endometriosis as well as PCOS and my ovaries were the size of shrivelled grapes (god love ‘em) but hearing this was just another wave of reassurance that I had totally done the right thing. It illustrated the power of the mind body connection again, and psychologically I had known this part of me was so suppressed and inactive, it needed to come out! Like some kind of snake, I felt like I had shed a skin.
Emotionally, I didn’t realise how much I would relive my double mastectomy, exactly, almost to the day, four years ago. Everything had been a mirror image, except the area of surgery! I had compared every feeling, every sensation, every little hurdle, to my experience before. I had been in the room next door to the one I had been in before, some of the nurses were the same, it was the exact same time of year as my last visit, I had the same side effects of the drugs. My brain was not switching off either and sleep was interrupted and full to bursting with vivid dreams. I was exhausted but clearly by brain needed to process everythingl too.
Escaping from hospital was like a prison break! I had to get home! My mother in law came to stay and though amazing to have her, she had moved in for a week four years ago too. The similarities continued, heck, Death In Paradise was even on again while MIL massaged my feet (I told you she was amazing!) and to add insult to injury, I even had to wear the same blinking green blood clotting socks!!!! Love that look with floral pjs! Yet, there has been an acceptance in me that has appreciated the importance of this part of the healing process. My house became my sanctuary and the feelings of deja vu gradually passed.
It is all part of the process. The effects of any surgery stay with a patient for a while and we so quickly under estimate the effects. Not only is the process of the toxins from the drugs, working their way through our bodies, slow and debilitating, but the process of pain management and then the reflection, adjustment and acceptance are all physically and mentally challenging. Our bodies are more vulnerable, our minds are more sensitive. To heal, is to hide in a safe and nurturing space. To heal, is to surrender to the help and love of friends and family. To heal, is to let a natural process of repair and regeneration proceed, in its own time, in its own way. All we can do is succumb and trust our ability to do this. It’s not easy and being here again, has highlighted this so much, but with Spring around the corner (albeit a little late, as I look out at a snow covered garden!) and with my big birthday around the corner, this marks a new start, a new chapter, a time to celebrate, and boy am I looking forward to that part of the process!!
Over the course of all my cancer experiences I kept a diary. These are the blogs I have written from the thoughts and feelings I recorded there. xx