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.