Contemplating childlessness and cancer

I write this at the end of World Childless week 2020. 

What I am about to say may prove a little controversial. I can only speak from my own experience, and it is not my intention to belittle anyone’s experience of cancer. These observations are from my own experience of being a childless woman who then happened to get breast cancer. Unlike many others, my cancer did not cause my childlessness. Did my childlessness cause my cancer? I don’t know, but stress and grief are part of the aetiology, I am sure. 

Before I knew that I was unable to have children, I couldn’t even contemplate the idea. Eight years ago my therapist asked me what I would do if the IVF failed and I was never able to have children. I kept the feeling of utter bleakness at bay by steeling myself and vehemently replying “That can’t happen. It’s not possible. I can’t not have children”. There was no way I could even countenance the possibility. When you are going through IVF you have to believe it’s going to work. Why would you do it otherwise? When I did IVF it was taboo. Not something you talked about. I was quite open about it but I received nothing like the same degree of understanding and concern which having cancer brought me. Somehow having cancer makes you a worthy person, deserving of special treatment, care and compassion. Friends, family, colleagues and even strangers were so kind to me when they heard I had cancer. I felt so validated, such a sense of belonging. 

When you have cancer everyone asks how you are. People cut you some slack when you’re not firing on all four cylinders. It’s ok to be feeling sad or apprehensive. Childlessness is not something you feel able to share without inviting judgement, pity or derision. That or just a complete inability to fathom why it’s even an issue. Comments like “have some of mine!”, “at least you can travel!”, “you still have your health” or “it must be nice to get so much sleep”, sting. And that’s just other people! The way you beat yourself up is far worse. If only I’d not been so picky about finding the right man until it was too late; it must be because I’m not fit to be a mother; I can’t have wanted it enough or tried hard enough. I never thought that way about my cancer. It was just bloody bad luck and I could deal with it. I didn’t need to soul search to figure out why I had cancer or what I had done to cause it.

When you apply to adopt, the local authority treat you with suspicion. You feel like a criminal until proven otherwise. And when adoption fails, or you realise that you’re not strong enough to give yourself heart and soul, body, mind and strength to someone else’s child, you feel like you’re not good enough. What people don’t realise is that adoption is nothing like having your own child. It’s not just a case of picking a baby off the shelf. I wasn’t prepared for this when I embarked on the adoption process. I thought it would be a magic bullet to build my own family and to fill that enormous hole that was inside me. I was naive. It wasn’t until we eventually realised that we couldn’t adopt, that I finally released the stranglehold under which I had kept my emotions, to fully experience my grief.

Until I joined gateway women, a community of childless women, I had no idea that what I was feeling was grief. We call it disenfranchised grief. Nobody died. There is nothing tangible to hold onto. We have no happy memories to anchor us. Just a great big gaping hole left by what never was, is not and never will be. I have been grieving my children who never were for over seven years now, though I only really allowed myself to acknowledge that grief five years ago when our adoption journey came to an end. At first I thought I wouldn’t survive. The emotional pain was indescribable. All my empty tomorrows stretching in front of me for ever and ever. But you do survive, because you have to. With the help of Gateway Women I have learned to grow around my grief, to celebrate what I have rather than dwelling on what I don’t have. At the same time I still honour my grief and that visceral longing to touch my children, which will always be with me.

I’ve had words with God over both my childlessness and my cancer. It sounds weird, but I don’t really hold the fact that I had cancer against Him. It was more a case of, “Oh, thanks Lord, you have a really sick sense of humour – help me to get through this!”  With the childlessness it has been a completely different kettle of fish. “Why do you hate me?! Why have you forsaken me?” and try as I might I couldn’t forgive Him for it. With cancer there is resolution. Even when I was in Covid-19 limbo with no idea when I would get my mastectomy, I knew that it would happen sooner or later. With childlessness there is no resolution. There is no cure.

There is no cure but there is life after accepting that you will never be a mother or a grandmother. You will be forever excluded from that club but you can still LIVE. When I was trying to disentangle my childless grief from my anger over having cancer, my friend and meditation guide, Merryn, showed me that there are some aspects of my life now which wouldn’t have been possible had I had children. It’s not the path I would have chosen, were I given the choice, but it is the path I am on and it is a good one. You can see from my posts on creating joy and wild swimming that I have found things which make my heart sing and my skin zing. 

I find it almost impossible not to play the comparison game. I consider my experience of cancer to have been a walk in the park compared to that of many others. I didn’t have to endure chemo or radiotherapy, nor did I suffer the indignity caused by many other types of cancer. As my mother-in-law said, you can do without a breast! I might think differently if I’d been wiped out and throwing my guts up from chemo, or had to get used to a colostomy bag, or been forced to endure paroxysms of excruciating pain. I can only speak from my own experience. Of course, secondary cancer is another thing entirely. I can’t even imagine how I would come to terms with it if I got secondaries. I have huge admiration for those who remain positive against all odds. 

Thank you, my fellow people who have had cancer, and thank you my friends and family, whether you are childless or blessed with children, for being here. Thank you for reading. Thank you for listening. Thank you for just being.

Has cancer changed you?

My husband asked me this question before we turned the light off last night. I asked what prompted it and he said he wasn’t sure. Maybe it was because I am about to go back to work and he felt the need to punctuate this particular paragraph in our life. It was a relief to hear that he didn’t think I’d changed. At least, not for the worse! I’m still fundamentally me. But my response was yes, cancer has changed me. How could it not?

Time may change me. But I can’t trace time.
Can’t resist a reference to Bowie…he died of liver cancer

It is human nature to try to make sense of bad things when they happen to us. Resilience training aims to minimise the risk of PTSD by teaching soldiers to make sense of the traumatic events which they experience. If we can write our experiences into our life’s narrative and make a coherent story we feel much more at home in our own skin. During the seemingly interminable wait for surgery my friend Merryn helped me to make some sense of what I was going through with guided meditations. During one of these I encountered a tiny, delicate, brightly coloured flower growing in a wood, which would have been easily trampled underfoot had it not been for its striking appearance, which made people step over or around it. That flower was me. Before I was forced to slow down by my cancer diagnosis I would not even have noticed the flower as I powered past on my hike. I’d probably have stepped on it.

I’ve always had a tendency to be hard on myself. I would never berate my patients if they didn’t live up to their own standards or if they didn’t excel all the time in everything they did. I don’t think this tendency will ever leave me entirely, but being forced to go off sick from work and facing some of my demons has allowed me to forgive myself for not being perfect. I am now practicing being kind to myself when I feel like I don’t measure up. I am beginning to take myself less seriously. We all make mistakes and none of us are indispensable. Neither of these are bad things. If we can remember them then we no longer need to cling for dear life to our self esteem.

I have found joy in art, wild swimming, yoga, observing nature and blogging! I would never have become a blogger had it not been for breast cancer.

I still don’t think there is a reason, as such, for why I got breast cancer. Nor do I believe there is a reason why I was infertile when I so desperately wanted a family. Sometimes shit just happens. It’s how you deal with the shit that matters. I hate it when people say that everything happens for a reason – so, I just wasn’t meant to have children, is that it? No. I’ve done my fair share of railing against God, screaming at the top of my lungs “Why do you hate me??!” God doesn’t hate me, but I won’t understand his reasons, at least not in this life. Thomas Chisholm wrote “Great is thy faithfulness, oh God my father, there is no shadow of turning with thee, thou changest not, thy compassions they fail not…morning by morning new mercies I see, all I have needed thy hand has provided…” And that’s the funny thing. I have always somehow had the strength to cope with the shitstorm that life throws at me. It may not feel like it at the time, but our experiences mould us into who we are and what we are becoming.

I like to think that this experience has helped me to be less overcome by setbacks. I have become slower and calmer and have less of a tendency to panic if I can’t find the solution immediately. Long may this last!

Many things about me haven’t changed. I was terrified when I heard that I would need major surgery that my body would be horribly disfigured and that I would lose my athletic figure. My six pack isn’t what it was, but I still cut it in lycra! I even got whistled at on my run today. I am slowing getting my fitness back and see no reason why I shouldn’t get back to full fitness. I still retain my insatiable intellectual curiosity (I now know an awful lot about breast cancer!) and my tendency to give my whole self to things with gay abandon. So thank you cancer, you have made me more myself, not less.

Back in the river Kent today!

Wonderful wild swimming

I’ve mentioned before about my latest addiction. I’m so thrilled to be back in the water that I felt it needed a whole blog post to itself! I’ve always loved swimming in the sea and as a teenager had no qualms about swimming across the fast-flowing Dordogne river whilst on a family holiday. I’m a very inefficient swimmer which is perhaps a good thing as I generate lots of heat when I swim! I’ve never been a fan of swimming pools as I hate chlorine, getting stuck behind someone swimming too slowly in the fast lane, or having the faster swimmer behind me nipping at my heels! I was 7 years old before I learned to swim, unlike my baby sister who learned aged 2 and swims like a fish. I am a strong swimmer though, and will brave just about anything.

The top right photo was this afternoon at Gurnal Dubs, just under 300m altitude, a leg-punishing run up to it, followed by a 500m ((ish), that was funny my autocorrect wanted to amend that to fish!!) swim and a happy, galumphing dash back down (I neither run nor swim elegantly). I’m still not back to full fitness after my surgery so the run up tested both legs and lungs and my heart rate peaked at 181 bpm, (which at my age is more than my max should be), but it feels so good to be alive!

I am slightly wedded to my Fitbit, which also happens to be waterproof, so I have found that my heart rate when swimming never gets anywhere near what it does when running. It’s weird because I swim as hard as I can and I’m out of breath, but it seems to sit at around 110-120 bpm, and only reaches above 130 when I’m really pushing it. It’s been a while since I’ve experienced the gasping, heart racing shock of first contact with cold water. I think the last time was when I immersed myself in an icy pool half way up a mountain waterfall. You know, that moment when you can’t help shrieking with both cold and delight. I’ve not yet tried swimming with goggles in open water as I prefer it to be an experience rather than a race, and if I swim breast stroke I can keep my head above the water. I have never been a fan of front crawl – my stroke is a total mess and I feel like I’m about to expire after about 10 strokes! I could swim breast stroke all day.

My favourite swimming spot in the river Kent is unswimmable at the moment due to all the rain we’ve had. The last few times I’ve attempted to swim against the current there, I’ve ended up unintentionally swimming backwards, in spite of powering away with my arms and kicking like billy-oh. Steve thought the sight was hilarious but also rather alarming as he had visions of me ending up in Morecambe Bay, a few miles downstream. Necessity has made me spread my net wider (and higher) for my “jog-swim” to the nearest tarns, Potter Tarn and Gurnal Dubs. The water today was a leeeeetle chilly and in spite of running down, my hands still feel like blocks of ice…

I was very well behaved and didn’t venture into the water until I was sure that my wound was fully watertight. The fully clothed pictures are me champing at the bit to get in the water before that happy occurrence. I have to say that my favourite thing to wear when swimming is nothing at all. I hope the photos which demonstrate this are too small to be too revealing and anyway, the parts of anatomy which are bared are common to all human beings! Mountain tarns are amongst my favourite places to swim, especially when there’s no one around, as I can enjoy the water as nature intended. The bottom right picture is Loch Avon (Cairngorms) in February 2019 when the air temperature was 20 degrees. The water temperature certainly wasn’t, but it was completely magical.

The benefits of cold water swimming are well known, but for me I find that it gives me a massive zing, puts me on a high and leaves me gasping for more. I have to be feeling warm before I go in though, as otherwise I find that I get too chilled and am unable to recover. I don’t want to risk hypothermia. I have yet to swim in water colder than about 10 degrees but come winter I may manage to build up the stamina to do so. I joined the outdoor swimming society on Facebook, which is great for inspiration from others’ posts and for tips on cold water swimming. It was also very touching to receive so many good wishes when I posted my first post-cancer surgery swim picture. Wild swimming is such a tonic for body and soul!

Gurnal Dubs – sooooo inviting!

Tamoxifen Turn Off

Tamoxifen has rendered me anorgasmic. Not happy! It’s also doing nothing to help my sleep, as well as giving me a dry fanny and a paunch. Ugh! The Internet and the information sheet in the tamoxifen packet will warn you of the common side effects, such as menopause-like symptoms. The literature on tamoxifen majors on its paradoxical mechanism of action whereby it blocks the effects of oestrogen in breast tissue, thus preventing breast cancer, whilst acting as an oestrogen agonist in the uterus and in bone. However, there is precious little written on its sexual side effects, other than to say that the aromatase inhibitors are worse! I was hopeful to start with that I might be spared these side effects, but after a couple of weeks on the drug there was a distinct change in my ability to “get there”, shall we say! I hesitated before writing this post, as it does expose me rather, but sex is something which we so rarely talk about and I feel that the taboo needs to be broken.

Breast cancer and body image

There are plenty of great blogs detailing the impact of breast cancer on a woman’s body image and sexual desire. I am unusual in the sense that my cancer has not diminished my sex drive one bit, other than to deprive me of one erogenous zone (left nipple). At least I still have one left! I count myself extremely blessed not to have had to go through chemo and radiotherapy so I have only had to recover from surgery and not all of those other indignities. I am very lucky in that my new fake boob looks very symmetrical and very similar to my real one, and my husband still fancies me. He also keeps forgetting that the new boob has no sensation! We have always had a very satisfying sex life and I have every intention of that continuing. I still feel desire, get aroused and want to be intimate as much as I ever did. The trouble is that the tamoxifen has flipped some sort of physiological switch, thus preventing me from “getting to the finish” every single time. I feel that some background is required to help understand where I am coming (or not as the case may be) from.

Let’s talk about sex, baby

I’ve always had a healthy interest in sex. From Judy Bloom’s Forever being passed around class aged 11 (I remember my Dad looking over my shoulder when I was reading it by candlelight during a power cut and exclaiming, “I wish we’d had such educational books when I was your age!”) to discovering The Happy Hooker on my parents’ bookshelf aged 12, I enjoyed a vicarious sex life for many years. Just reading about sex would cause my blood to start flowing into places I had yet to discover, and I’d get a tight feeling in my lower abdomen. As a Christian who didn’t believe in sex before marriage, I didn’t even have a clue what an orgasm was until a friend enlightened me during a game of “truth or dare” in my first week at uni. I wasn’t actually to experience one myself for another 18 months, though not for want of wishing!

My first sexual relationship almost caused me to fail my second year exams, so caught up was I in my newfound experience. I discovered that I was anatomically normal and that my libido was rather high. Trouble was that I still believed that sex before marriage was wrong but I had broken my own rules. My 20s came and went, mostly single. I managed to repress my sexuality more or less successfully. The point I’m trying to make is that it wasn’t until my late 30s that I was able to realise my sensual and sexual potential. I had a disastrous short marriage in my mid thirties, where I can count the number of times we had sex in two years on the fingers of one hand (well, maybe two).

Finally free to enjoy sex!

You can imagine what a revelation it was to me to discover, at the age of 37, that I could find both love and a great sex life with my now husband. What followed was plenty of heartbreak with infertility, but even through that we managed to retain our intimacy. I have written other posts about the devastating impact of childlessness on my life, but one perk of having no little ones around is that you have far more opportunity to have sex whenever you like. Then breast cancer comes along and puts the kibosh on my ability to enjoy one of the pleasures of my childless life. Not amused!

What is tamoxifen doing to me?

With my psychopharmacologist’s hat on, I did a bit of a literature search to try to understand why I can’t orgasm. Believe it or not, no one really understands the neurophysiology of female sexual arousal and orgasm. Now, as well as cancer and being infertile I also have a rather pesky recurrent mental illness which means that I need to take antidepressants long term. Selective serotonin reuptake inhibitors (SSRIs) are notorious for causing sexual dysfunction and the one which I take is no exception. Until I started the tamoxifen the benefits of the SSRI outweighed the downsides as we could still, with a little battery powered help, have a normal sex life. Since the tamoxifen nothing, but nothing works! I have come to the conclusion that there must be some interaction between serotonin and oestrogen which is necessary for the female orgasm pathway to function. Either tamoxifen or the SSRI alone may not be sufficient to kill it dead, but the combination is the nail in the coffin.

What are my options?

I’m planning to try topical oestrogen (safe in breast cancer) to see if it helps. I’m not holding out much hope as I think the effects are in my central nervous system rather than “down there” but it’s worth a try. Failing that I might try reducing my SSRI dose or switching to another antidepressant which has fewer sexual side effects. Inherent in that is the risk of a depressive relapse or winding up with different, but no less troublesome, side effects from the new antidepressant. Trial and error. I could stop the tamoxifen but then will I get cancer in my other breast? Thank you breast cancer for not letting me forget you even though I am cancer free. Oh, and I ran this by my husband before I even thought of publishing it!!

A pilgrim’s progress

It feels like progress. A week spent travelling around Northumberland and Scotland and I am in a different place from when we left. Since arriving home three days ago I am contemplating returning to work (with more than a little trepidation) and have even been for a jog (whilst wearing a very supportive bra).

I felt insanely excited to be setting off on my first holiday since my cancer diagnosis. Normally at this time of year we go hiking in Austria but what with coronavirus and cancer somewhat cramping our style we settled for a road trip around Northumberland and southern Scotland. I wasn’t sure how much walking I would manage, nor whether my wound would be watertight for swimming but I was feeling optimistic! I cannot overstate how buzzing with energy I felt as we headed up the M6 and turned on to the A69 towards Hadrian’s wall. I’d already planned our first coffee stop at House of Meg (I’d checked it was open, thank you Google maps) in Gilsland, then up to Housesteads Fort for some history and a stroll (!) along Hadrian’s wall. I couldn’t believe we’d never been there before. And we were blessed with wonderful sunny weather too. I managed a 10km walk along what I think is the most beautiful part of Hadrian’s wall, from Housesteads to Steel Rigg and back. Then collapsed onto the bed at the very well appointed Bowes Hotel in Bardon Mill. What a great place! Newly refurbished and very friendly. I recommend the pulled pork burger.

Hadrian’s wall

I was so chuffed at my progress with the walk along Hadrian’s wall that the following day we decided to walk to Holy Island (Lindisfarne) across the causeway as we didn’t want to have to pay for parking! We hadn’t quite appreciated what a long walk it was. My Fitbit seemed to think we’d clocked nearly 20km, which certainly felt like a long way. Holy Island is a wonderful place. The priory was only open for pre-booked tickets but we strode off to the less touristy part on the north of the island and discovered sand dunes, seals and a perfect place to swim. I’d been dying to swim for a while but had desisted due to worry about my wound being slow to heal. By now however, it was finally watertight and I could contain myself no longer! It felt wonderful to be in the water, and in such a special place to boot.

Once I’d dipped my toe in the water there was no stopping me! The following day I swam on Bamburgh beach, and the next at Low Newton-by-the-sea, a picture perfect fishing village heralding a stunning stretch of golden sands as far as Dunstanburgh Castle, a couple of miles down the beach. The water was a little nippy but that’s half the fun (14 degrees C). I don’t use a wetsuit.

Beach at Low Newton

Seahouses was the perfect place to stay, and we enjoyed the fish and chips and the walk back from Bamburgh along the sands. We were even treated to a rather exciting croquet match on the lawn outside Bamburgh castle. There was also a Co-op which was a godsend as I was starting to crave fruit after a cooked breakfast or two too many!

Croquet, anyone?

It seemed such a pity to leave the Northumberland beaches behind but when we booked the trip we didn’t know how much walking and outdoor stuff I would manage, so we went for 2 nights each in Edinburgh and Stirling too. On our full day in Edinburgh we experienced wall to wall sunshine, which we made the most of by walking the length and breadth of the city, including a trip up to Arthur’s seat. Well worth the view!

Steve was happy in Stirling when he found a guitar shop as well as a vinyl record shop, and I was happy exploring the cemetery (I am a big fan of cemeteries). I love to imagine the people who went before me, to take notice of their names, when and how old they were when they died, and the nature of any inscriptions about them. There were also plenty of good coffee houses and a fabulous cafe which served the best borscht I’d tasted since Moscow (complete with a generous dollop of smetana). We’ve driven past Stirling castle on many an occasion on our way up to the Cairngorms and finally took the trouble to stop and visit. My favourite queen was crowned there aged 9 months, poor baby, she didn’t know what she had coming to her! It was a bit of a shame that the main indoor areas were closed due to Covid, but the castle was well worth a visit.

Old Kirkyard cemetery, Stirling

Steve and I discovered the Outlander boxset during lockdown, so on our way home we visited Doune castle and I managed one last swim in the Teith river, which was a little warmer than the sea (only a little)!

One last swimming photo!

Since returning home I have been sleeping a lot – I wonder why?! I am very excited to report that I have managed a couple of my “jog-swims” and not ended up in Morecambe Bay yet (the current in the Kent is absurdly strong at the moment with all the rain we’ve had). I haven’t contemplated a proper run yet, but one step at a time. And I’m keeping a very close eye on my wound as the risk of skin breakdown and implant infection is ever present. So far so good, though!

You taught me so much

“So thoroughly and long 

Have you now known me, 

So real in faith and strong 

Have I now shown me, 

That nothing needs disguise 

Further in any wise, 

Or asks or justifies 

A guarded tongue.”

Thomas Hardy, Between Us Now

There’s nothing like enforced down time to make you take stock and consider what’s important to you. Cancer does that to a person. I can’t say that I’m glad this happened to me, but I have to take heart from some of the more positive outcomes. Maybe I think too much, but lately I’ve been mulling over what is important to me in life and mentally charting the course I took to arrive where I am now. I have absolutely no desire whatsoever to relive my more formative years (especially adolescence!) but I do owe some of my passion for life to the teachers and mentors who grabbed my attention and set my imagination on fire.

Thank you Miss Dampier

I was an angst-ridden teenager and school wasn’t exactly my favourite place. My English teacher came to the rescue (she explained to me on one occasion that she is a “rescuer”) and thank God she did, as her help, compassion, reassurance and guidance enabled me to swim rather than sink. I often felt like the man in the Stevie Smith poem, Not Waving but Drowning, though I was never the waving type, so I think I might have just drowned quietly! Somehow I managed to get hold of poor Miss Dampier’s phone number and would call the unsuspecting woman late at night to pour out all my teenage angst into her very patient ear. Teachers are much maligned, but this remarkable woman did much more than just offer me succour when I needed it.

Thanks to Miss Dampier I delved into Thomas Hardy’s poetry, empathised with Mr Gradgrind from Dickens’ Hard Times (didn’t you love writing those empathetic essays for GCSE English – in this one I was the remorseful Mr Gradgrind expressing his chagrin to his daughter with characteristic abandon!), learned Wilfred Owen’s poems off by heart, and became To Kill a Mockingbird’s number one fan. Jill Dampier and I are still in Christmas card contact and she periodically updates me with news of others who touched my life through school. One such person is Mrs Sherratt, my brilliant biology teacher, who taught me how to write Oxford Entrance Exam style essays in response to titles like “Ladybirds are red. So are strawberries. Why?”

The periodic table

The person to whom I owe my love of chemistry is another teacher, now a friend, whose enthusiasm for the subject and inspirational teaching style made me hang on her every word. Dr Warwick thought I was rather gifted too, as my mother remembers her gushing at a parents evening, “Marisa knows the answer even before I’ve asked the question!” I remember Dr Warwick chanting “electrolyse before our eyes!” and “dehydrate, it is your fate!” during demonstrations of such processes. Now, many people find inorganic chemistry rather inert, but I just loved it. So did Primo Levi (I do seem to keep mentioning him), another hero of mine.

Manic rats in Oxford

My medical career has been somewhat circuitous but I can’t say that I regret any of the odd turns it has taken over the years. From giving ecstasy to rats as a second year medical student (my fascination with pharmacology began then) to returning to Trevor Sharp’s lab in Oxford in-between junior doctor jobs to do a PhD (this time the drug of choice was amphetamine to create an animal model of mania), to old age psychiatry and then branching out into medical education more recently. I can’t stop learning and I want to pass on that knowledge to others. Having breast cancer has taught me to return to my anatomy text books and to perform Pubmed searches with terms such as “cutaneous innervation breast” and “tamoxifen mechanism of action”, which it would never have crossed my mind to do as an old age psychiatrist. I am also far more acutely aware of what it feels like to be a patient waiting for results, a diagnosis or treatment. I have also rediscovered my love of writing!

Should I take tamoxifen?

I have been taking tamoxifen for nearly 2 weeks, and so far so good with regards to side effects (still early days). If you’re premenopausal, and have had surgery for an invasive, oestrogen receptor-positive (ER+) breast cancer, it is recommended that you take tamoxifen for 5 years. There is very robust evidence that it improves your chance of survival (albeit by very small margins in my case) and it can reduce the risk of getting cancer in the other breast by up to 50%. I was very resistant to taking it as I’d heard all sorts of horror stories about side effects such as hot flushes, night sweats, vaginal dryness, menstrual irregularities, weight gain, blood clots and endometrial (womb) cancer. Some women experience the menopausal symptoms really badly. I was already in the perimenopause so I wasn’t sure whether my night sweats would get worse or just stay the same. I’m also not too keen on having a dry fanny! So far the night sweats are no worse and I’m reserving judgement on the other…

I have a PhD in pharmacology, so if I have to take a medication I need to research its mechanism of action and really understand what it’s doing to my body. The pharmacodynamics (what the drug does to the body) and pharmacokinetics (what the body does to the drug) of tamoxifen are mind boggling to me. I’m sure that not everyone shares my fascination for how drugs work, but my, this is an interesting one! This is my attempt to understand how tamoxifen works. Buckle in, it’s quite a ride! Feel free to skip this post if science makes your brain hurt…

1962 search for a contraceptive

Tamoxifen was initially developed as a safe contraceptive, but funnily enough it ended up having exactly the opposite of the desired effect, and actually made women ovulate, rather than stopping ovulation. Unbeknown to its manufacturer ICI (now AstraZeneca) it was to become the first non-toxic targeted treatment for breast cancer, thanks in large part to collaboration between researchers and the enthusiasm of a young post-doc, VC Jordan, in examining its anti-tumour effects with some oh-so-elegant science.

Jordan discovered that tamoxifen was something known as a SERM (selective oestrogen-receptor modulator), which means that it blocks oestrogen receptors in some tissues (such as breast tumours) and stimulates them in others (such as the uterus and bones). One thing which I hadn’t appreciated about oestrogen receptors is that there are two types in question here, ERα and ERβ. When oestrogen binds to either of these ER, what happens inside the cell depends on a variety of little helpers which send messages to turn the cell’s genes on or off. In breast tumour cells, tamoxifen blocks the oestrogen receptors and this causes the cells to die (apoptosis – makes me imagine the cells going “pop!” and dying). Other tissues have little helpers which send different messages to the cell’s genes, depending on the cell type and the balance between ERα and ERβ. So in breast tumour cells tamoxifen blocks the effects of oestrogen, but in other tissues it can act like oestrogen itself.

My genes are different from yours

The intricacies of the human body never cease to fascinate and amaze me. Another thing which has got me thinking is the fact that my body does things to the drug, which may be different to what another person’s body does to the same drug. We all have different versions of our genes (polymorphisms) so which variety of a particular gene I have determines what happens to tamoxifen inside my body. Tamoxifen needs to be chomped on by the liver before it can even do its business (it’s the active metabolites which do the work – tamoxifen on its own seems rather inactive), and some people’s livers seem to do this job better than others. The other thing is that my oestrogen receptors will not be exactly the same as another woman’s, so it’s hard to predict whether the tamoxifen will be a wonder drug for me or whether it will just give me loads of side effects with few benefits. That said, on paper the benefits certainly have me convinced that it’s worth a try.

Understanding gobbledigook

The fascination doesn’t stop there. Tamoxifen is also useful in preventing recurrence of oestrogen receptor negative cancers, although the way it does this is very confusing. I spent almost a whole day trying to get my head around this, and I have to say, I am still rather bemused. Suffice to say that tamoxifen seems to have other actions as well as its action on the oestrogen receptor. It does something funny to mitochondria (the powerhouses which fuel our cells) which makes tumour cells more likely to go pop and die (apoptosis). At the same time it has strange effects on cholesterol metabolism which seems to protect against cancer. Paradoxically, while plenty of studies show that tamoxifen increases nasty oxygen free radicals which damage cells (which is what you want to kill a tumour cell, but not what you want if the cell is healthy as it can cause it to malfunction), it also has antioxidant properties (and we all know that is a good thing). Tamoxifen also has direct effects on DNA, a mechanism by which it is thought to be good for treating cancers other than breast cancer.

If you’re worried about taking tamoxifen there is a very helpful NHS tool which can help you decide whether to take it or not. It calculates the effect which taking tamoxifen should have on your survival. https://breast.predict.nhs.uk/tool

Even though my calculated 15 year survival benefit of taking tamoxifen for 5 years comes out at less than 1%, survival is not the only point of taking it. I’m not at all keen on going through all the investigations, uncertainty and mastectomy which cancer in my “good” breast would mean. If it reduces the chances of that by 30-50% then it’s worth a punt. I will let you know if it turns me into even more of a perimenopausal wild thing than I already am!!

Further reading

  • Goodsell DS. The molecular perspective: tamoxifen and the estrogen receptor. Oncologist. 2002;7(2):163-164.
  • Jordan VC. Tamoxifen: a most unlikely pioneering medicine. Nat Rev Drug Discov. 2003;2(3):205-213.
  • Shagufta, Ahmad I. Tamoxifen a pioneering drug: An update on the therapeutic potential of tamoxifen derivatives. Eur J Med Chem. 2018;143:515-531.
  • Yang G, Nowsheen S, Aziz K, Georgakilas AG. Toxicity and adverse effects of Tamoxifen and other anti-estrogen drugs. Pharmacol Ther. 2013;139(3):392-404.

Cancer free – now what?

I am cancer free. I should be rejoicing. Since I received the all clear (lymph nodes and margins) a week ago I have experienced all sorts of emotions, but none of them joyful. Why on earth don’t I feel joyful? The truth is, there are many reasons. Multifactorial aetiology as I would say to my students! Now, don’t get me wrong, I am very glad that I am cancer free and very grateful to have received the care and treatment which I did. No more mileage-accruing trips to the hospital, biopsy needles, anxious waits for results; no more second guessing when surgery will resume (Covid-19 has a lot to answer for), frantically seeking solace in online forums and helplines. But in their place I am left with a bit of a void. Everyone thinks I am well but I am not. My wound is still healing (skin looking red and thin and I’m worried about dehiscence and late complications), my sleep is poor and I still need an afternoon nap. Lassitude is my companion. Turning to the Internet to try to find what’s ailing me, I discover that these feelings are common. I have self-diagnosed with survivor’s guilt, “life after cancer” syndrome (my term), and post surgery fatigue.

Survivor’s guilt

Survivor’s guilt is a well recognised phenomenon in response to having “survived” an event which has killed other people. Holocaust survivor Primo Levi suffered terribly with this, expressing his pain and horror through writing books, always asking why did he survive when others far worthier than him died? He never found an answer. Someone pointed out to me that from day one of being diagnosed with cancer you are a “cancer survivor”. In medical terms that makes sense, as we talk in terms of survival curves (the curve gradually edges down when people with a given condition die). The example below shows the % survival of premenopausal women with early breast cancer over 12 years after surgery. It shows that more women who took tamoxifen survived than those who took placebo.

Overall survival of patients on tamoxifen compared to placebo. Bramwell, V et al. (2009). A randomized placebo-controlled study of tamoxifen after adjuvant chemotherapy in premenopausal women with early breast cancer (National Cancer Institute of Canada-Clinical Trials Group Trial, MA.12). Annals of oncology : official journal of the European Society for Medical Oncology / ESMO. 21. 283-90. 10.1093/annonc/mdp326.

This rather unexciting looking graph does little to explain what survivor’s guilt feels like. This is what it felt like for me a few nights ago when I felt the urge to put it in writing:

“I’m not sure I even qualify as a cancer survivor. My invasive breast tumour was only grade 1 and a few millimetres in size, hiding in a huge labyrinth of DCIS. I have read books and blogs written by “survivors” who have endured so much more pain and suffering than I have. I only needed a mastectomy (and chose to have an immediate implant reconstruction as I didn’t want to be flat) and have now been declared cancer-free without the need for either chemo or radiotherapy. I feel a bit of a fraud. It pains me to say this, but why, as humans, do we always compare our own plight to that of others? There will always be people both better and worse off then me. Fact.

“I feel anhedonic, tired, lacking in energy and motivation. Glum. Can’t be bothered. Where did my mojo go?”

My journal 27/7/20

I detect a large dose of imposter syndrome there. It’s as if I am not worthy to be called a cancer survivor because I didn’t have to go through as much hell as some others have. What am I complaining about? I’m not dead! The cancer didn’t kill me like it has others. Ah, complex guilt.

Life after cancer

I’m cancer free! What’s not to like? I can get back to normal life. Hang on. What is normal life? Is it even possible to get back to “normal”? I think not. Yes, I can gradually resume activities I used to do before I had cancer, but I am forever changed, physically and emotionally. I have lost a part of myself. I have gained an implant, a scar and some pig skin. I have to take tamoxifen every day, a constant reminder that the cancer might come back in my other breast. Not that that worries me just now, but the knowledge of the increased risk will always be there. Peter Harvey, clinical psychologist from Leeds speaks brilliantly about healing after treatment has finished in this article.

I’m in that limbo of having been discharged from breast clinic whilst still not having healed enough (physically or emotionally) to go back to work or to do any of my sports which keep my mood buoyant. The skin which is stretched over my wound is tight and red and my pectoral muscle keeps twinging. I hope that’s normal. I feel guilty that I don’t feel well enough to go back to work yet, even though everyone keeps telling me how well I look. I worry about my energy levels and whether doing this or that will cause wound dehiscence, a seroma or a late infection of the implant (my literature search tells me that this is common from 6 weeks to 1 year after surgery). Maybe I think too much…

I think I am in the recuperating stage (see Peter Harvey above) at the moment, and hope soon to be convalescing with a blanket over my knees at the seaside!

My closest approximation to convalescing at the seaside!

Not for the squeamish

I am in uncharted territory. That is to say that although many before me have travelled the path of breast cancer, no one has trodden my path. The internet is peppered with breast cancer blogs, to which I am adding my own! No matter, blogging helps me. I find myself having all sorts of questions and not all that many answers. In scouring the Internet to try to find some of the answers, I’ve cobbled together some things which I have found, and which I hope others might find useful.

Why is my skin numb?

The least favourite aspect of my first year at medical school was the dissection lab. I defied my cadaver to teach me any anatomy whatsoever, and have to this day great difficulty in visualising anatomical structures in 3D. Good thing I became a psychiatrist and not a surgeon! Luckily for me, some other students are very good at anatomy, including a group who, in 1997, meticulously dissected the nerve supply of 12 breasts belonging to 7 female cadavers (I warned you it wasn’t for the squeamish). They came up with this:

Jaspars JJ, Posma AN, van Immerseel AA, Gittenberger-de Groot AC. The cutaneous innervation of the female breast and nipple-areola complex: implications for surgery. Br J Plast Surg. 1997;50(4):249-259. doi:10.1016/s0007-1226(97)91155-3

Now, how beautiful is that drawing? It shows that the breast skin is supplied by the lateral and anterior cutaneous branches of the nerves which exit from between your vertebrae and run along your second to sixth ribs. If you trace a line down your chest from the middle of your armpit, that’s where each upper intercostal nerve splits into anterior and lateral cutaneous branches which supply the breast (see picture below). The lateral branch finds its way out through some chest wall muscles and then splits to supply the outer side of the breast and the armpit. The anterior branch runs deep under the muscles and pops up just next to the sternum, then splits to supply the skin over the sternum and the skin on the inner side of the breast. How elegant!

horizontal cross section also from Jaspars 1997.

I got very excited when I read about this as it completely satisfies my curiosity over why my new breast is numb. Of course, the implant itself has no nerves in it, but the skin? Now I understand that all the branches which supply the skin of the breast have to be cut when you perform a mastectomy, as they go right through the breast tissue before they end in the skin. Anyone who has a full mastectomy, and especially with an implant reconstruction, will end up with severed nerves to the skin over the breast. The other question of mine which this answers, is why the skin in and below my armpit is a bit numb but the sensation is now starting to come back. You can see that there’s much less chance of damaging the posterior branch of the lateral cutaneous nerve, as its course doesn’t run right through the breast tissue.

What’s keeping my implant in?

Moving on now from this exquisite artwork to my not so exquisite attempt to draw a cross section through my new boob (note that I’ve made it look a bit larger than it really is!! The surgeon said that I broke all records by having the smallest implant in history, at just 140ml!).

Copied and personalised from Prepectoral Techniques in Reconstructive Breast Surgery, Ed. Gabriel et al., Lippincott Williams and Wilkins 2018

I had to draw this picture after I had a horrible nightmare in which my implant slid half way down my tummy when I had to jog a bit. I think this was my subconscious working overtime on the dire warnings from the breastcare nurse to “take it easy otherwise you risk dislodging the implant!”. The implant is held in place, completely enclosed in front and behind, by a mesh called an acellular dermal matrix, made from the inner skin (dermis) of pigs. It’s very clever stuff, especially for people like me who have rather thin skin without much fat under it. Over time it melds with your own skin to form a nice covering. It also makes the new boob much less likely to shrivel up like a desiccated orange (capsular contraction). The surgeon laughed at me when I asked him how hard I’d have to work to dislodge the implant. The ADM is stitched quite firmly to the pectoral muscle above and below, you know!

What should my wound look like?

The other thing which has been bugging me in the three weeks since my op is, how should my wound be looking? When I saw the surgeon 2 weeks post-op, he thought my wound was looking marvellous, but how was I to know what to expect? In previous posts I’ve already alluded to my tendency to overdo it and to have trouble pacing myself. Well, this time I excelled myself and was at risk of making my implant pop out through my healing wound.

Sequential photos of wound from day 16 to day 22 (the day I published this) post-op. Note how angry it’s looking on Saturday!

I last saw the surgeon 2 days before the first picture, which I took on Friday morning before I went wild raspberry picking and managed to get thoroughly bitten by tiny beasties, the most itchy and swollen bite being just under the submammary crease of my new implant. Typical! I was also rather overzealous in my quest to reach the juiciest raspberries and launched myself into the bushes, succeeding in showering myself in raspberry juice as I landed in the thorn bushes with a bump. I was feeling marvellous and thought it was all rather hilarious.

Yummy wild raspberries

A weekend visit from my parents followed, which found me keen to explore some of the Lake District with them.

Rydal waterfall walk. Honest guv, I didn’t overstretch myself…

The walk up the waterfalls at Rydal Hall would normally be what I’d call an easy stroll, and it seemed that way whilst we were enjoying it. However, by the time we got home, my new boob was throbbing, swollen and rather hot and I didn’t like the way the scar was looking. Steve took me up to the Urgent Treatment Centre and they took a wound swab and gave me some antibiotics. I spent the next 48 hours worrying that I’d jeopardised my implant in my enthusiasm to explore the outdoors. In addition to that, I felt absolutely whacked! The completely knackered feeling persisted into Sunday and I even turned down pudding in favour of going home for an afternoon nap. I sent a picture of my wound to my friend who is a breast surgeon and she ticked me off and told me to behave…

So, since Sunday I have been behaving (today is Thursday). I had a trip to the breastcare nurse on Monday and she didn’t think the wound was infected, but best carry on the antibiotics just in case. So you can see from my pictures what a wound looks like when you overdo it, and how it improves when you lie down plenty and take it easy. Not easy to do though, for the likes of me…

Oh, and good news – my lymph nodes and margins are clear. Whoopee!

The waiting place – in homage to Dr Seuss

I have always been in awe of Dr Seuss’s imagination. Many a time have I found myself journeying across “wierdish wild space”, keeping in mind his whacky, somewhat psychedelic illustrations of the world. One place with which I have become very familiar lately is…

The waiting place…

…for people just waiting.

Waiting for a train to go or a bus to come,

or a plane to go or the mail to come,

or the rain to go or the phone to ring,

or the snow to snow or waiting around for a Yes or No

or waiting for their hair to grow.

Everyone is just waiting.

Waiting for the fish to bite

or waiting for wind to fly a kite

or waiting around for Friday night

or waiting, perhaps, for their Uncle Jake

or a pot to boil, or a Better Break

or a string of pearls, or a pair of pants

or a wig with curls, or Another Chance.

Everyone is just waiting.

Dr Seuss, Oh, the Places You’ll Go

Once again I find myself in that place. I was hoping that my visit to the hospital this afternoon would tie up all the loose ends and my husband and I would be able to skip off into the sunset. Alas, it was not to be. I am still waiting.

The waiting began in mid February 2020 when I noticed bloody nipple discharge issuing from my left breast. I waited a few days to see if it would go away of its own accord before contacting the GP. They had no appointments forthcoming, so I had to wait 3 days for her to call me. I wasn’t fussed about waiting then. I didn’t think I had anything to worry about. Then I had the “two week wait” referral to breast clinic. To be fair, it was only just over a “one week wait” so no complaints there.

On 27th February I waited in breast clinic. For hours and hours. I was the longest attender of the day. It’s normal to stay for up to 3 hours. I was there for 6! I had so successfully become part of the furniture by the end of the day that they forgot I was still there, waiting to hear about the next step. I could have been in the waiting place for a very long time, had I not alerted them to my continued presence!

I was told that my results would be ready the following week. Well, that wasn’t too long to wait. I can cope with waiting if I know the time scale. To my horror and dismay, the wait was prolonged when I received a phone call to say that there was a backlog in the pathology lab and the results would not be ready in time for my appointment. So, more waiting. This time it was much worse as they couldn’t tell me when they would be ready. “We’ll call you as soon as we know,” they said. That didn’t help!

After an extra weekend of stewing, the results came back as equivocal. I’m sorry, but we need to do more investigations. More waiting.

Juggling my own clinics was a challenge as I never knew from one week to the next when I was going to be called in for another appointment. Thankfully my secretary took pity on me and became a dab hand at rearranging things according to my cancer appointments.

On 20th March I had my vacuum assisted biopsy (niftily nicknamed a VAB, which has also become a verb – I have apparently been VABed to death!) and was given a telephone appointment for the results. Tuesday 31st came and went with no phone call and a summons came the following day for a face to face appointment 3 days later. Just a bit longer to wait. The need for a face to face appointment sounded ominous though…

I have recounted the face to face appointment elsewhere, but suffice to say that this was when the waiting started for real. “You need a mastectomy but you can afford to wait”, they told me. It’s not safe to operate during Covid. The trouble was that they couldn’t tell me how long I would be waiting for. Was it 3, 6, 9 months? A year? No, no, not as long as a year. We will review you in 3 months.

I didn’t like the feeling of being in limbo. No plan. No nothing. I had to do something. Like seek a second opinion. That referral got lost in the post (!) but I eventually received a phone call from my new surgeon who explained the whole process very clearly, and felt that there was more investigation to be done before surgery. I was not an easy case, he said in the nicest possible way!

By this time it was mid April but things started to move a bit faster. I had another VAB. That involved a further wait as the machine went kaput just as they were about to stick the needle in and I had to wait 2 hours while the repair man fixed it. You couldn’t make it up…

That VAB confirmed the suspected diagnosis (DCIS) but the surgeon was not convinced that they knew the full extent of the cancer as the area involved was huge. I’m coping better at this point – it’s funny how it’s easier to cope when you are having ongoing investigations, as things are punctuated and moving forward in steps. The next step was an MRI. How weird is a breast MRI? You have to lie on your front with your boobs swinging in space inside specially made holes. I found the whole thing quite hilarious.

I didn’t have to wait long for the MRI results either, they were back within a few days. When the surgeon told me that they had shown possible invasive foci, I wasn’t sure whether to rejoice or be worried. I have to admit that part of me was glad that there was something in it which galvanised the surgeon into action. No more indefinite waiting because I could “afford to”. Now we can’t afford to wait any more. He wanted to schedule my surgery for the end of June. Trouble was that reconstructions had not resumed yet.

More waiting. How do you weigh up the risk that waiting will cause the cancer to spread, against the psychological harm of having a mastectomy without a reconstruction? This was the situation I was in. So many unknowns – we didn’t even know for definite that the cancer was invasive, but there was a suspicion that it was. What I did know for sure was that having a mastectomy without reconstruction would damage me psychologically and require more surgery in the long run.

My relief when I finally got my surgery date through for 1st July was immense. I cannot describe how much better I felt, having something to work towards. Since the surgery it has helped that I am making a good physical recovery, I have had 2 trips to clinic, one to take the drain out and the other to check the wound and say goodbye to the dressing. Yay! I am now tube and bandage free. But the histology is not fully back yet. There was some invasive ductal carcinoma there, not just DCIS. No lymph node results or margins yet though. My surgeon reassures me that he’d be astonished if there was lymph node involvement. Still, I don’t feel that reassured. More waiting. I was so wanting to leave clinic today with a light heart. But instead I have to wait just a little bit longer. I’m used to it. But I am not a very patient patient!!