I wrote a book!

Now available on Amazon!

You may have wondered where I’ve been since my last post which was over a year ago. Well, work has been busy and in my spare time I’ve been writing a book about my cancer/covid nightmare.

I’ve also been doing lots of swimming, hiking and running – more on that later…

How on earth do you go about writing a book?!

I love all things Apple but the problem is that Word for Mac doesn’t do all the things that the PC version does, so I fell in to writing each chapter of my book in the Notes app on my iPhone/iPad/Macbook. To my surprise it worked extremely well as it meant that I could see and update anything I’d written in real time on any of my gadgets. Did you know that you can also dictate into the Notes app and it turns it into text? The voice recognition is not too inaccurate either. Very useful if literary inspiration suddenly comes to you when you’re half way up a mountain! The Notes app also rather handily displays the chapter title in the list of notes so I could arrange them, and work on each, as I liked. My family were the willing recipients (I think they were willing!) of each chapter as it poured out of me. I’m not sure I can say I enjoyed writing it, but it certainly was cathartic. As it developed, it took the form of a journal. People ask me how I remember the conversations in such detail – they are etched on my mind forever, such was the impact of the whole experience. Text message conversations and email exchanges were also a major feature of the manuscript. Formatting those was a pain in the neck!

A historical record

I had more or less finished writing my story by January 2021, but I waited a little to include some stats on the impact of COVID-19 on cancer services in the UK. The stats are shocking. I won’t repeat them here as you can read all about them in my book, but the impact will be felt for years to come. It also amazed me how long it took for the data to be published. The B-maP-C study findings were not published until after I concluded my manuscript, but they claim that ‘The majority of ‘COVID-altered’ management decisions were largely in line with pre-COVID evidence-based guidelines, implying that breast cancer survival outcomes are unlikely to be negatively impacted by the pandemic. However, in this study, the potential impact of delays to BC presentation or diagnosis remains unknown.’ The authors also remark that the study may have been subject to reporting bias. Certainly, anecdotally from my discussions on various cancer forums, the psychological if not the physical fallout was horrendous. I count myself lucky to have been able to have an immediate reconstruction. Many were not so fortunate.

Merryn you are a marvel!

https://soulsafaris.com.au

My mum reminded me that Merryn, part of our extended ‘family’ (my parents acquire extra ‘children’ every time they go on holiday, haha!) just happened to have survived the worst kind of breast cancer you can have when she was in her early thirties. She also happens to be an editor. I cannot state strongly enough how much Merryn’s guided meditations helped me survive until my surgery. Not only to survive, but to thrive in a way I never thought possible. She also challenged me to process my grief over my childlessness (see earlier blog posts) which was a major milestone for me. Who better to edit my book?

Merryn’s hard work and encouragement finally had my book into good shape as a Word document in December 2021. I got so excited that I sent it off to a few literary agents in the hope that I would soon be a bestseller…

The perils of self publishing

None of the agents to whom I sent my book were interested (sob!) so I set off down the road of publishing it myself. Oh my, how green I was! Someone recommended Amazon marketplace to me and I almost fell into the trap of paying a third party to do the setup on Kindle Direct Publishing (KDP) for me. There are other self publishing platforms out there, but I couldn’t get my head around the websites of the various other ones, and a lot of them will relieve you of loads of dosh before your book even sees the light of day. I’m pretty skint so needed a way of publishing without any upfront costs. Okay, so KDP will relieve you of 40% of income from the book once they have deducted the printing cost (70p per unit + 1p per page), but it cost me nothing except blood, sweat and tears to get my book out there!

Before you embark on a book with KDP, make sure you get the formatting right. Their website has a very helpful formatting guide and there are a myriad of YouTube videos giving instructions. Then there’s the book cover. I tried with Cover Create, KDP’s own online tool, but their offerings are pretty limited, so in the end I sourced a vector picture from creative commons and sent it to our lovely friend who happens to be a designer (thank you Steve at 42 Creative!). He did a much swifter and more professional job at redesigning, sizing the cover and positioning the title and bio than I ever could have done. What talent! I should have approached him sooner rather than confusing myself trying to design the cover on Adobe Illustrator (not an intuitive programme – or maybe I’m just creatively challenged?!)

Why is formatting such a nightmare?

KDP does give good instructions but I must have formatted and reformatted my manuscript about a trillion times before it was finally ready to order a proof copy. And I’m glad I did because once I received it I spotted about a million errors. Okay, that’s an exaggeration, but you want it to be as perfect as possible don’t you? If I ever write a novel, I think it will be much easier to format. The main things which caught me out were the fact that there is a lot of spacing in the book due to it being in journal form. Every new paragraph after an empty line space needs to begin without an indent, but each paragraph until the next line space needs to be indented. If you look at a book off your shelf, you’ll see what I mean. Imagine having to go through every paragraph of a book which has a line space in-between each timed journal entry. It took me FOREVER to get it right! Then you’ve got to figure in the tops and bottoms of the pages. When you’ve got so many line spaces between paragraphs you have to make sure that the top of the page does not contain a line space. Every time you correct something or add a word it throws the whole blooming thing off and you have to go back through it and check it all over again.

My husband is a print expert!

I’m not sure why I didn’t think to consult my husband, Steve, about the margins on a paperback book until the first proof came back looking a bit of a mess. He’s only the best printer in the country and he would have told me to make the inside margins extra wide so that the book would be readable without having to break the spine. The instructions on KDP were a little confusing. They tell you what the minimum should be, but don’t give much guidance on tweaking your look to get it just right. I set ‘mirror margins’ as instructed but I must have done something weird or wrong as the first proof contained many pages in which the print was too close to the spine. It makes it much harder to read! Steve helped me re-set the margins to a much better size, which I could instantly tell from the preview page on KDP. So much of the whole process is trial and error – lots of error and plenty of trials! A millimetre here and a millimetre there and finally the text was more or less centred within the printable area with a decent inner margin. The trouble was that then I had to go back and re-number all the pages (MS Word is a pain in the neck when it comes to custom page numbering – google it) as the pagination changed and the book was 6 pages longer! Still, 6p extra cost per book is worth it for a much improved look. Then I realised that I had to go through the entire thing again and fix all the gaps which had shifted to the top of the page! Aargh!

Kindle was (a bit) easier than paperback…

The beauty of the Kindle version is that you don’t have to go through all the pagination malarkey nor do you have to check for line spaces as it’s a much simpler format. Trouble is that you need to unformat the whole document and start again as Kindle does not recognise most of the formatting that MS Word does automatically, such as numbered lists. Oh joy! Luckily I found a marvellous YouTube video which helped me no end and saved me lots of time:

Thank you Naomi, you are a legend!

Also, did you know that you can send yourself a Word document to read on your Kindle? How handy! You can tweak it and resend the Word file to yourself as often as you like (in my case at least 10 times!) until you are satisfied at how it will look when people download your finished book. I was quite surprised at how well some of my diagrams showed up on the Kindle.

50% of royalties go to charity

No, I’m not all that altruistic. I just want to give something back to the cancer charities which helped me during my long wait for surgery. I’m not the sort to do sponsored walks/runs/swims (I’ve had a horror of asking people to sponsor me ever since I was as child) but I can donate money from my book. It’s a pity that KDP take such a cut, but half of anything I make from sales will go to Cancer Care in Kendal and Breast Cancer Now. So every copy you buy will help the fight against cancer!

So now please oblige me by visiting Amazon and buying a copy

Thank you for reading!

Oh, and here are some of my latest swimming/running adventures…

Black Moss pot last week – had it all to myself. Poor Steve behind the camera is freezing on the bank!
Janet’s Foss, 30th March in the snow. Brrr!

20 mile run around Kendal trig points. In training for the Keswick Mountain Festival 25k fell run…

Ouch! Slipped disc?

It was all going so well. My VO2 max was up to 42, I was getting a real thrill out of running and ice swimming and then BAM! my back went. I’ve never known anything like it. There is a lovely comfy sofa in our garden room at home, on which I sit with my laptop to attend online meetings and such like, when I’m working from home. I’m beginning to wonder whether my sofa sitting position is ideal…

12th January 2021

I normally have ants in my pants and don’t sit still for hours on end, but on this particular day I am captive on the sofa, assessing a succession of applicants to medical school via live video interviews. It’s a bit of a marathon, 36 candidates spread across the day, with an hour’s break for lunch. After almost 3 hours of sitting, I leap up, don my running/swimming gear and head out the door, determined to use my lunch break to its maximum potential. It’s a gorgeous day and my enthusiasm to jump in the river cannot be curbed. I leg it down to the river bank in record time, strip down to my jog bra and bikini pants, and in I go. So far so good, the water’s 6 oC, the sun is shining and I feel wonderful. I forget that I’m in a bit of a hurry and savour the water and the sunshine. Ooh my muscles feel a bit cold…quads feel a bit weak as I lift myself out of the water. The faff factor starts to kick in once I’ve emerged onto the bank. Hm, have I stayed in a little bit too long? I can’t feel my feet and my fingers are fumbling.

No matter, need to get a wiggle on as interviews restart in 20 minutes! Faff, faff, faff, clothes on over wet skin (I’m so pleased with my new pink towel!), move, move, move. Swish one foot in the water to get it clean and right sock and shoe on. Next bit’s a little more tricky, as it involves balancing on one leg whilst slightly hypothermic. Oops, I overbalance and hop twice on my right leg as I attempt to put my left shoe on. Ouch! Something feels like it’s been compressed in my back. Ooh, not nice, but I’m running late now so need to get a move on. It’ll be fine, these things normally go off once you get moving, don’t they? On the run home something in my back doesn’t feel quite right and my left hip is a bit sore, but I make it back in time.

Back on the sofa, I remark to my colleague that my back is a bit sore. Another hour of sitting ends with a tea break and I pop over to my desk to get something. As I reach across the desk, twisting from left to right, something in my back goes into spasm. The pain is excruciating! I can’t move. I decide it’s just a muscle spasm and attempt to sit back down and resume interviewing. Not too much longer to go now. We’ve got a few no shows which makes it easier. I can’t actually sit. I have to perch on the edge of the sofa, keeping my back rigidly straight. My lumbar spine won’t flex at all. I can feel a solid ridge of muscle to the left of my lumbar spine, from about L1 to L4. It hurts to prod it, but not nearly as much as it does when I try to touch my toes. I take some paracetamol and ibuprofen and hope for the best.

Neuropathic pain

The pain at night is unreal. The first evening I can’t sit still on the sofa to watch TV so I opt to read in bed lying flat on my back. I discover that the least painful position in which to lie is on my right side. Lying on my left is excruciating, and when I lie on my back I get these weird muscle fasciculations all down my left quadriceps which is most disconcerting when you’re trying to fall asleep. I’ve never known pain like it. A deep ache in the gluteal muscles, hip flexors, quadriceps and adductors which doesn’t seem to come from anywhere in particular but is impossible to soothe. I finally do manage to sleep but wake up in a sweat (thank you, menopause!) and can’t decide which is worse, the pain or the cold, clammy cocoon in which I am shivering. I roll out of bed and have a pee, then find I can’t get back in to bed as my back won’t bend. I sort of plonk myself down and struggle to get the covers back over me. Argh!

Understanding low back pain

I’m always on the lookout for learning opportunities, and what should come into my inbox but the doctors.net module on lower back pain? Marvellous! I learned rather a lot actually. The thing which really sticks with me is that the degree of pain and disability has no correlation to MRI findings of mechanical pathology such as a herniated lumbar disc. The other thing is that most cases of lower back pain resolve with conservative treatment within six weeks. After two days I had diagnosed myself with a herniated L3/4 lumbar disc. Now, 5 weeks later I have no idea whether I actually did have a slipped disc or not (my physio thinks not) but my left thigh is still not right. The neuropathic pain was mainly in the L3/4 nerve root myotome and I had parasthesiae over the medial aspect of my left thigh just above the knee. My symptoms required some anatomy revision, and I was delighted to find some beautiful, colour coded illustrations from Gray’s Anatomy, superbly done by Mikael Häggström. Interesting. Most discs herniate centrally, so it would be unusual to experience a lateral herniation. Also, the vast majority happen at L4/5 rather than L3/4, and many of my symptoms are more widespread than to just issue from a single nerve root. A radiculopathy is defined as the presence of actual signs, rather than just symptoms relating to a particular nerve root. I don’t think my sensation is permanently altered, and I would say that the power in my quadriceps is 5/5. Can you run if the power in your quads is less than 5/5? I wonder – my left quad does feel like it might give way when I’m running downhill…

By Mikael Häggström, used with permission. – File:Gray797.png
By Mikael Häggström, used with permission. – File:Gray798.png

Smack on the black ice

The “slipped disc” happened on a Tuesday and on Friday I thought it would be a good idea to gently keep my hips moving by walking to walk (I live half a mile away). My bag, which was slung across my shoulder pulled a little, but I kept shifting it around to balance things out. There’s a marvellous cycle track which runs along the main road down to the hospital. It wasn’t so marvellous that day, as it was patchily glazed with black ice, which looked just like wet tarmac, but was actually lethal. I’d almost reached the hospital when my legs shot out from under me and SPLAT! I landed flat on my back, whacking my occiput as I hit the deck with a sickening thwack. I lay there dazed for a few moments, and was much heartened when two cars pulled over and a couple of ladies came to see if I was ok. I explained that I didn’t feel like getting up off the ground just yet, but that I was fine. You know how sometimes you just have to lie there for a minute or two until the shock wears off and you can assess the damage? The piece de resistance was a few minutes later when an ambulance drew up level with me and rolled down the window. “We couldn’t drive by without stopping to see if you were ok,” said the paramedic. “You sure you don’t want us to check you out?” I groaned that I was fine, no permanent damage, and painfully got to my knees, then my feet. Nothing broken. Oh, my poor head!

For the next few days I could’t tell which pain was worse – the pain from the fall (oh, my neck muscles took about 2 weeks to recover) or from my back. Running was out, as was wild swimming. I could barely dress in the morning, let alone strip down to my underwear on the river bank. The sheer thought of immersing myself in freezing cold water made my muscles want to spasm!

After about a week there was no real improvement. I was still on 4 hourly painkillers though I’d resisted anything stronger than the paracetamol/ibuprofen combination. The first sign of improvement came nearly two weeks later when I managed a brisk walk and a brief dip in the river. It was very brief though, and the pain was worse afterwards so I decided to leave it again for a while.

Mountain walks are replaced by something a bit more leisurely…

Recovery

Fast forward to five weeks later and I continue to improve. I don’t feel as fit as I did as I had an enforced 4 weeks off from running. My first “rehab run”, a week ago was a very slow affair, more of a joggle than a run. Nevertheless, I managed to toddle along with my heart rate just about in the cardiac zone for about 40 minutes, with no ill effects. The following day I went for a jog swim, which also went well. It was a sunny day and although the water was cold (5.3 oC), I limited my time in the water and got changed at a leisurely pace on the bank in the sunshine. It was a totally different rhythm to the fateful run/swim four weeks earlier. I’m managing to do some very helpful yoga exercises for lower back pain and am now only taking painkillers with breakfast. I’m still very stiff when I get up in the morning, but it improves as the day goes on, until my core muscles tire a bit in the evening. I can now put my shoes on without being in agony!

There is definitely still some foreshortening of my left hip flexors, which limits my stride a little. I also have to watch out for sudden muscle spasms in my left hamstring on the inside of my knee, not to mention a pulling feeling in my left groin. You never know, one day all my aches and pains might even up and I might end up with symmetrical legs/pelvis!

Skip 2020?

The cycling doctor in scrubs and mask!

As midnight approaches I’m having a pensive moment and writing my final blog post of the year. I’m asking myself the question, would I have skipped 2020 had I had the chance? It would have been tempting. And yet, all experience, whether good or bad, is lived experience which shapes who I am and who I will be. I am not the same on the last day of 2020 as I was on the last day of 2019. Am I better? Maybe. Am I worse? Who knows. I hope not. Am I different? Certainly. I have survived Covid-19 (a mild dose, it has to be said) and breast cancer. Steve and I have discovered some wonderful walks in our local area which we would never have noticed had it not been for lockdown. I have become thoroughly addicted to wild swimming and the joy it gives me. I have learned how to meditate and even some yoga.

Before surgery (left) and after (right)

Hold lightly to the things of this world

It’s no secret that the greatest struggle I have had in my life is my childlessness. I have written about it at length elsewhere. In a way “a year” is an arbitrary thing. The Earth has travelled one orbit around the sun. The lessons of a lifetime are composed of moments, not years. I’m with the Rolling Stones. “You can’t always get what you want, but if you try sometimes, well, you might find you get what you need.” Indeed. There are plenty of things I have wanted, things which others have which I have coveted. Sometimes I feel abandoned by God because he does not give me the things I want. But he does give me the things I need. I don’t need two breasts. I’m quite glad I’ve still got one, at least for now. The fake one is quite symmetrical and Steve can hardly tell the difference, and that’s all I needed. I can still run, swim, hike, hug (when I’m allowed) and reach for the sky. I’m lucky in many ways that I tend to live in my head, so whatever I treasure in this world can be left behind, or brought with me in my imagination, whichever way you want to look at it.

Learning to wait

I’m a terribly impatient person. Three months of waiting for cancer treatment was like torture for me. I scrabbled and scrabbled to find ways to keep myself sane, to prevent myself from falling into deep despair or from becoming a berserk fizz of anxiety. I saw myself bouncing off the walls in a live demo of the second law of thermodynamics, my mind disintegrating into entropy and chaos. I had to wait it out. I had no choice. I wasn’t idle. I did everything I could to expedite my treatment by seeking a second opinion and using my privileged position of being a doctor to pull strings to make it happen. I learned to slow down and to accept that I had to live with uncertainty for an indefinite space of time. That was so alien to me. I found that it helped to inform myself as much as I could about my cancer, the differential diagnosis, histological types, ins and outs of the various treatments. I became an expert on breast reconstruction (at least on paper!).

Cold, cold water

I can’t go past a body of water now without having the urge to immerse myself in it. Steve is very long suffering, standing shivering on the bank while I strip down to my underwear and jump in. I think he understands how much it benefits my mental and physical health. I freely admit that I am completely addicted. There is something about full body immersion in freezing cold water that gives a sensation like no other. It simply thrills me. The day before yesterday I broke my first ice as I stepped into the water in Angle Tarn below Bowfell. How bizarre that I have Covid and breast cancer to thank for this newfound exhilaration.

Gurnal Dubs at 3.5 degrees C

Blog, blog, blog

2020 has turned me into a keen blogger. Okay, so I blog about my experiences. This year my experiences have been Covid and breast cancer, but my blog posts have taken me to places in my head which I had almost forgotten, and which have connected me with anyone who wants to read them. I admit to being a bit of a narcissist in that it gives me a buzz to see how many hits my blog receives each day! I have enjoyed blogging so much that it has reawakened in me the desire to write, and given birth to a book about my experiences this year. We will see if it ever gets to print, let alone whether anybody wants to read it, but at the very least it will have been a catharsis for me.

Scafell range from Bowfell. An experience even better than blogging!

Thankful

Yes, it’s cliched, but counting your blessings is good for you! I’m thankful for Steve’s love; for my family’s unending care and support; for friends who ask how I am and listen to the answer; for the mountains and lakes and rivers; for my heart and lungs and muscles which allow me to run, hike and swim; for the surgeon who took the cancer out and reconstructed my breast so beautifully; for my colleagues who have been so kind throughout my illness; for my medical students who keep me on my toes; and to God for giving me what I need rather than what I want. And I’m thankful for Spook the cat!

Spook, our remarkable cat, out on a walk

Recovery is oh, so slow!

I’ve been back at work for nearly 2 months and I have never been this tired. They say 6-8 weeks off work is the norm for mastectomy with immediate implant reconstruction. I’m “young and fit” so I might have expected to return sooner, but everyone warned me not to underestimate the psychological toll of breast cancer during Covid-19 and to take as much time off as I needed. I’m glad I heeded their advice as I feel permanently exhausted. I head to bed at 9pm every night as I can’t stay awake. My “phased return” rather went out the window as we were a doctor down when I returned and I had to take up the slack. Add to that all the “Covid contingency plan” decisions which had been made at the Medical School during my absence and I was playing catch up, big time.

My first few days back at work, though daunting, were a pleasure. The team were all so delighted to see me, it felt very positive. I also knew that it was time for me to move on from being a “sick person” to being a “recovered person”. But oh my, I wasn’t ready for how tired I was going to feel.

Should I write a book?

Oh yes, I also need to mention that in my spare time I’m writing a book about my cancer/Covid experience. Who needs another book about breast cancer? Probably no one, but I just can’t help myself. The words are just spilling out of me! We’ll see if it ever gets published. I’m toying with titles such as “Physician heal thyself: a doctor’s memoir of cancer and Covid” or “Cancer in the Time of Covid” in homage to Gabriel Garcia Marquez. Hm, not sure.

Regaining my fitness

I’m now up to running twice a week or so, and wild swimming as often as I can, as well as a day each weekend hiking up mountains. My VO2 max has gone up from 36 to 41 which is good (was 43 pre-op), but it’s not half been a slog to get my fitness back. I still don’t feel as though I’m anywhere near as fit as I was before I had my surgery. My implant seems fine when I run, as long as I wear a mega-supportive bra, but my pectoral muscles on that side are sore to the touch. I experience a very sharp pain when I press on the muscles above and to the side of the implant. I’ve got the tiniest bit of cording, but nothing which even bears a mention. It’s not restricting me. Am I getting a bit of capsular contraction? Who knows. The pictures which I have found online all look horrendous and mine looks nothing like that, but it does feel very tight. The swelling which I originally had around the implant has subsided and it now looks very pert and much less droopy than my normal breast (and I have zero ptosis!). No sign of any sensation returning to my salvaged skin yet, but my armpit is gaining a little more feeling.

Tamoxifen

I couldn’t hack the tamoxifen. I managed to take it for 3 months and then sacked it. Quite apart from putting the kibosh on my sex life, it just made me feel glum all the time. I was existing in a state of grimness. Now, I know what it’s like to feel depressed as I suffer with recurrent depressive disorder, and it felt nothing like that. I just felt as though I was living in a grey world. And I felt frustrated and irritable. Now, given that the PREDICT tool told me that tamoxifen would improve my 15 year survival by 0.5%, I decided that feeling grim for 5 years was not a good trade off. Okay, I know that it reduces my risk of having cancer in the other breast, but I’m not willing to put up with feeling less than human for 5 years for the sake of something which may never happen. Does it sound awful to say that I’d rather take the risk of having to have another mastectomy than to have to take tamoxifen? I’d rather take my chances and hope we catch any incipient cancer in the bud with a yearly mammogram.

Keep swimming

I’m still convinced that the best thing in the whole wide world is wild swimming. I’ve invested in a neoprene hat, socks and gloves and intend to keep going right through the winter. No wetsuit! Coldest so far has been 8.5oC, in Angle Tarn near Hartsop. I have discovered a run/swim route which involves running up hill for 35 minutes from Staveley to Gurnal Dubs, swimming for 15 minutes then running back down. Whenever I see a body of water I can’t resist stripping down to my underwear (or birthday suit if there’s no one around) and plunging in. Bring it on!

Angle Tarn

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!