Last Thursday I had a bilateral salpingo oorpholrectomy - which means removal of both ovaries and fallopian tubes to you and me. My cancer is fed by oestrogen and by removing the ovaries it makes me very much post menopausal and a pretty constant stream of oestrogen is removed as a result of this procedure. My cancer is extremely oestrogen receptive so I have been looking forward to just getting them out. Finding a time to have the operation during a period of stability was necessary. It was a bit hit and miss as I wondered if I would still be stable enough to go ahead. By having them removed the range of hormonal therapies I can consider increases as many of them require you to be post menopausal. Last year I was on Letrozole, which also requires this but instead of surgically induced menopause I had chemically induced menopause through weekly horse sized injections in my abdomen (zoladex). As well as hating them because they just hurt it also meant that for about 3 or 4 days after the injections I was particularly tired and flat.
I have had the date of the operation in my diary for a while. 22nd September. As the date approached I made sure I would have people around me to help for the first few days. Ella came back from London, Uni does not start till next week and Rupert was not travelling with work. I cleared my diary for two weeks as I was not sure how long I would be physically out of action and was very busy up to the date as I squeezed in as much as I could before I was grounded.
The operation was scheduled for the afternoon and was to an outpatient procedure. It involves key hole surgery, a hole through the belly button and two small holes above the hip bone area. But in the end I stayed over night as the operation started later than planned and there was no way I would be walking before it got dark.
I had not given the operation much thought before the day, at least not consciously, beyond the practicalities. This was also a treatment in itself and I was happy that was necessary. When the day arrived I began to consider the symbolism of it for the first time. These ovaries have been pretty good to me. They gave me (with a bit of help) my 4 beautiful children. I certainly don’t need them for childbearing and the logic to remove them was good. But on the day I did start to feel a bit maudlin. I said goodbye to Rupert who had bought me to the bed I would recover in and then walked with a nurse to the operating theatre. Rather it was the room before the theatre where they put you to sleep. By this time I was wearing one of those delicious do up the back hospital gowns. I climbed on to the bed and loosened it so they could access the parts they needed easily and they covered me with a blanket. The anaethetist stuck something in my right arm through which the various drugs and fluids could go (hitting a blood vessel on the way and needing to re-site). I had been worried about my carpal tunnel but he said that the drugs would in fact help it - I can't remember how - something about relaxing the blood vessels (I might have made that up). As all this was happening the reality of what was about to happen and simply my situation and probably lots more related started bubbling up and I could feel my eyes stinging. I was about to burst into tears but just in timethey gave me the dreamy pre-med and the next thing I knew I was in recovery.
Apparently one of the anaesthetic drugs makes it feel as if time has stood still, so that whatever you were thinking about when you went to sleep you wake up thinking about. In my case this meant that as I slowly became aware of sounds and light, I couldn't really feel my body, I was like a floating head, but I could think and I just started crying. I was wearing an oxygen mask which meant that as I hiccoughed I breathed in huge amounts of oxygen. This was a strangely lovely feeling. I was not really conscious of why I was crying it just felt like a huge release. Tears were rolling down my cheeks. I could hear the voice of a nurse, like an angel, whispering that it was OK, that general anaesthetic can make people feel emotional. I was clearly not the first to wake up crying. I did not want Rupert to see any tears and mumbled through the mask to ask if she could wipe my eyes and make sure I did not look like I had been crying. Slowly my body came into focus and I was aware of some discomfort in my abdomen area but nothing dramatic. As I became more lucid they removed the oxygen and opened my eyes. There were other people on either side of me also in recovery but I had the same nurse keeping an eye on me, taking 5 minute observations for a period. And then I found my voice and we started chatting. I think I would call it more like verbal diaorrhea - we talked about motherhood, childcare, work life balance with kids and more. One of those mother to mother conversations that connect otherwise strangers so powerfully.
I was wheeled back to my bed where Rupert was. Ella, Tom and Will came to visit briefly. Although I was lying very still, with white anti DVT stockings I didn't feel as bad as I thought I might, I slept pretty well and came home the next morning. By then I walked to the car, very slowly mind, but I walked.
It has been just over a week since then and apart from the first 2-3 days when I continued to walk around like a bent old woman (still want to be one of those), I watched a whole series on Netfliks (Stranger Things - brilliant - set in the 1980s - a time warp for me - no mobiles, no internet, no computers, it’s like a mix between a darker version of ET and Strange Encounters of the Third Kind - honestly it is a great watch). Physically I have recovered pretty well and am walking normally. The wounds were incredible - no dressings at all just glue. Very disconcerting to see my belly button stuck together - I hate my tummy button being touched so the idea that it has been more than just touched - it has been drilled into and light and camera equipment stuffed through it very disconcerting. It remains stuck together and the dried glue is almost off (very tempting to pick at it) - hoping I still have a tummy button and wonder what it will look like. Maybe it will look better than when I went in? It shows no signs of returning to its previous state and I have to admit looks the better for it. So perhaps I have inadvertently had plastic surgery to my tummy button.
The other scars are tiny. These are where they pull the unnecessary body parts out. I was never very good at biology or anatomy but I have some idea of how things fit together but not I suppose their relative size. Gauging by the size of the holes they were pretty small or at least able to squeeze through a small opening.
The part of the process I had underestimated was not the physical healing of the wounds etc but the fact that this would mean a plummet in any remaining ovary related oestrogen. My treatments over the past 5 years have all chipped away at my oestrogen levels but this would be the final big push. Ella read somewhere that it takes about 3 days after the operation for the last of the oestrogen from surrounding tissue to leave the body so by day 4 my body was crying out ‘oestrogen! oestrogen! where the fuck are you?’. In practice this has meant some whole body hot flushes and the feeling occasionally as if I am having some kind of internal electric shock. The most unwelcome symptom in the very early days was a sudden feeling of deep sadness. I simply cried. Not just a little but a lot and frequently. As my mobility was restricted it was hard to get moving and do something to distract myself but even if I could I couldn’t unpack what was making me so sad. I know you might imagine what might be but I am really quite a happy soul despite what is going on and nothing had changed much from a week ago when I felt perfectly cheery. I don’t mind my family knowing if I am down when I really am down and even if I do end up having a cry in front of them occasionally, that is probably quite healthy. But I really do not want to be terminally miserable and cast a heavy depression over their lives. I want them to be surrounded by laughter and optimism most of the time. So uncontrollable sadness was not good. I clocked this was related to my operation and thought I had better read a bit more about it and see if there were any useful strategies to help.
Well- first of all in my search I noticed that information about menopause generally seems to be written on a back drop of sickly pink. Why? It is breast cancer awareness month this month and I am surrounded by lots of sickly pink balloons. (by the way I get very annoyed when people with breast cancer get annoyed about the methods people without it use to raise awareness of the issue and try and raise funds and support for it - there was a recent spat where people shaving their heads in support of breast cancer were attacked by people with cancer who more or less said they had no idea what it was really like and they found it offensive - well I think that anyone who wants to do anything to raise awareness and support should be thanked - not lectured to as the intention is fundamentally good). Back to sickly pink balloons - why could they not have chosen bright happy pink ones? A matter of taste. For menopause however I do not like the pink at all. This dislike was aggravated by a very informative blog on surgical menopause. Pages and pages of it. Can you imagine - a whole blog on surgical menopause - and this was not one that interspersed the blog with light tit bits about every day stuff it was entirely focused on the many and varied consequences of surgical menopause. And it was all pink.
According to this blog I am likely to suffer some or all of the following. My bones are going to get brittle. My skin will become dry and thin and my wrinkles will become more pronounced. I will lose my hair - or some of it as it becomes thin and more grey (I am not yet grey bar the odd one or two but this clearly will not last long). I will get hot flushes at night and at random times and sweat lots. My vagina is going to shrivel and become as dry as the gobi desert, prone to cuts and chaffing. I will suffer inexplicable mood swings and may suddenly feel very sad. I will become irritable and will be unable to concentrate for long periods. And my memory will deteriorate so I won't remember anything anyway. The answer, according to these essays (pages per symptom explaining exactly how the lack of oestrogen results in the symptom so you are in no doubt that it will happen to you) is HRT. Which of course people like me cannot use anyway - so that’s not very helpful. In fact, according to this blog HRT is so clearly the only way to avoid the above that I am absolutely certain the blogger is either a pharmaceutical company rep or someone paid by a pharmaceutical company to blog about the terrors of surgically induced menopause and the big saviour HRT. That would explain the very well organised blog site and choice of decoration. Not a typo in sight. Perfect grammar. No hanging sentences or long garbled phrases that you might expect from a real person :) . Call it a blog and we won’t realise it is information being fed to us via the pharmaceutical industry. On the other hand perhaps it has been written by a genuine person, who was terribly affected by it and for whom HRT was her saviour and she felt compelled to tell the world. If so - I am sorry for being so doubting but could you please add some more information for people who can’t take HRT and please be less depressing - no wonder we end up irritable and moody.
Who would employ a menopausal woman if they read all of that. I went through in my head how many people I knew who I was sure were either going through it or had already gone through it (admittedly not having had ovaries removed) and decided that there are really quite a few competent, healthy, happy and capable women around. Don't we have a female British PM and Germany has a female Chancellor and then there is Hilary - they can we hope concentrate for more than a few minutes. Compare them with Trump Kim Jong Putin and Mugabe. Unpredictable? Moody? What is the male equivalent?
That is not to belittle the actual symptoms that I am or might experience and those that my fellow surgical menopausers may have. I may well become more forgetful (if this is actually possible) and my skin may dry and shrivel and I may feel sad sometimes but I will have to work out how to manage that - a bit more suduko and the writing of lists and post it notes; luxurious non toxic face and body creams and some good comedy; love and laughter.
I do not really have any photographs to share this time as I thought snaps of my tummy button were not desirable. A snap of me crying uncontrollably? No. The only one vaguely suitable is of me as a baby in my pram. I have a look, I am sure I have mentioned before, which Rupert says I give when I disapprove or dislike something, a smell, an opinion and obnoxious comment (the content of a blog I do not like) and it apparently looks like I am smelling camel pee. Well I think this picture shows how long ago I developed this disapproving expression.
I have been loved and looked after by my family and am preparing myself for what may be coming down the road. My liver bloods have continued to go up (the wrong direction) so I am thinking that sooner or later I am going to have to change course. I am trying to stay calm and philosophical and have some ideas of next steps if I need to do something differently. I have started GcMaf. I inject 0.5ml every 1-2 days and I take oral colostrum (from Japan). Let’s see if this supports what I am doing - it is steady as she goes for the moment - ready for an about turn if needs be.
During all of this I have continued with my day job (no point lying around watching TV series unless very good reason) and I will be travelling to Tanzania next week. I am working to support the Tanzanian Government introduce accreditation to health care facilities as part of a strategy to improve the quality of health care as part of German Development Aid. They do not know about my health situation, and I don't want them to or they might slightly lose confidence in me (!). This is quite a tricky path to tread. Having advanced cancer means life is very unpredictable and you cannot plan too far ahead ever. I wondered if I would be able to do this but for the moment, despite rising liver bloods I feel well, my oncologist was happy to write a letter saying at the point of examination I was fit and able to travel there (an insurance type letter) and this fits within our workplan. So I feel very grateful. Last year I thought that was the end. It is not the end!