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!!

Is this normal? or how (not) to pace yourself…

I write on day 11 (or is it day 12?) post-op. The nursing journal authority on the matter says that the day of surgery is day zero, the day after is day 1 etc. So I was a little confused when the surgeon said come back to get your drain removed 10 days after surgery, on 10th July (op was on 1st July). Surely that was post-op day 9, not 10? Hm, should I graduate onto the advanced arm exercises on Wednesday or Thursday? When exactly does the second week after the op begin?! Minor, not to mention pedantic, concerns one might say, but this is the health of my new breast we are talking about. I even discovered several threads on online forums discussing the very same subject. At least I’m not the only who is mathematically challenged!

I am pleased to report that it doesn’t hurt to have your drain pulled out, and what a sense of relief it was to be able to walk around without said appendage. I’m keeping my lovely brightly coloured tote bag, though. The wound was looking tip-top, though not quite watertight yet (no wild swimming for me for a little while longer) and my first sight of it in all its glory was not as horrifying as I had feared. No nipple, but it was surprisingly well matched in shape and “droop” to my real breast. I’ve acquired some new vocabulary recently, including the term “ptosis” as it refers to breasts. As a medical student I was familiar with the term with reference to eyelid droop, but until two weeks ago had no idea that the term could also be applied to how droopy your breasts are. I am the proud owner of two breasts with grade 0 ptosis.

I was so thrilled to lose my drain that the following day I decided that it would be fun to go for a “little mountain stroll”. I felt great and full of energy. It was nothing like my usual, only 8k and 237m of height gain but by the time we got back down to Staveley I was ready to drop. By the evening my new boob had grown by about 30%, felt uncomfortably tight, and I wondered whether I had overdone it.

Potter Tarn. I feel great!

Of seromas and lymphoedema

The reason for having a drain post-op is to prevent the build up of fluid, called a seroma. A haematoma is a bit more serious (it means it’s bleeding somewhere) but seromas are apparently quite common. A week ago I convinced myself that I was developing lymphoedema, swelling of the arm due to lymph nodes being removed. Funnily enough my armpit started feeling a bit puffy, as did my hand, after I bit off somewhat more than I should have chewed on the “getting up and about” front two days running. Given that I was only day 4 and 5 post-op, I should have known better. I’ve never been good at pacing myself at the best of times (such as the time I ran on a hamstring injury or broke my ankle showing off at the swimming pool) but this time I apologised to my body and took it easy for the next few days. No lymphoedema was forthcoming, phew.

I did wonder whether I was at risk of seroma as my drain was still draining about 50ml when they took it out, but I’m told that is normal. The trouble is, when you’ve never experienced anything like this before, you have no idea what is normal and what isn’t. The skin over the implant was decidedly warm to the touch but no redness, which would indicate infection. The night sweats returned with a vengeance and I lay awake, freezing cold and soaking wet, wondering whether my boob would inflate to a GG cup by morning. Thankfully it hadn’t got any bigger when morning finally came round, and today I have done a much better job of looking after myself. No more “mountain strolls”. I am under strict instructions from an old med school friend to “lie down flat for a couple of hours morning, afternoon and evening. Think of a sprained swollen ankle”. Yes, doctor!

I think I can still drink gin and eat the strawberries I picked from the garden earlier…

Creating joy

I have always loved the title of CS Lewis’ book Surprised by Joy, chronicling his spiritual journey into Christian faith, and it is no coincidence that he married Joy Gresham two years after she edited the book’s final draft. The anguish Lewis felt over her death speaks into the human experience of suffering. It seems to me that joy and pain are inextricably linked, and as I have grappled with my experience of involuntary childlessness and then cancer, I have at times found my thoughts running parallel with Lewis’ heart-wrenching lament in A Grief Observed: “The conclusion I dread is not ‘So there’s no God after all, but ‘So this is what God’s really like. Deceive yourself no longer.’”

I stubbornly refuse to believe that God deliberately wants to cause us harm, be it emotional or physical, and have fallen on my “God given” gifts to ask myself what gives me joy? Can I create joy? I am unable to experience it in the smile of my own son or daughter or in a body which is entirely whole. And yet…and yet…

Creating joy through art

I always believed I was terrible at art. I never received more than a C in the subject at school, although I adored history of art, especially since I learned that Van Gogh and I share a birthday. Something about Helen Segal, artist and fellow member of the online community of childless women to which I belong, enticed me to sign up to her “Create Joy” course in November 2019 (https://empoweredchildlessness.com). I haven’t looked back since. We created a “cosmic smash book” journal full of JOY and pain. The process of creating it was truly joyous and extremely cathartic. I astonished myself by how much I loved every minute I was creating my own “art”, revelling in experimenting with colour, texture and form. I “graduated” to learning how to paint watercolour and am now receiving commissions (!) from family members and friends.

Market day, Pézenas, Languedoc, France

Making handbags

Part of my self-appointed occupational therapy while I was off sick from work a few years ago was to dust off my mother’s old sewing machine and to buy myself a book called “The bag making bible”. I ended up founding a business making and selling handbags! The creative process gave me real joy, as did the finished product. Sadly, I discovered that there was no money to be made whatsoever in handbags, although I was extremely flattered when my niece learned a new word (rival) at school – “Mummy, Cath Kidston is Auntie Misa’s rival!” I still have some beautiful and expertly made bags for sale if anyone is interested…

My stall at Kendal Brewery Christmas Fair. Unfortunately my takings barely exceeded the cost of the stall!

Mountaintop experiences

I never feel better than when I’m climbing a mountain. The sheer physicality of it, my breathing coming fast and a sweat forming, my legs burning yet strong. The wind rushes past as I turn another corner where a new scene surprises me. My senses are sharpened. I can eat as much chocolate and as many flapjacks as I like and still not get fat! I can’t get enough of mountain adventures. And it’s not just the mountaintop experiences which matter. The path up and down is full of interest, and the walk through the meandering valley has its own adventures.

Striding Edge, Helvellyn, Lake District, UK

Wild swimming

There’s something about the sensation of being immersed in freezing cold water which invigorates like nothing else. I am totally addicted! I have a little “jog swim” which I do from home which incorporates a 15 min run to and from the river with a 10 minute swim. It helps that I am warm enough when I get to the river to relish jumping in, and I have just about restored my core temperature by the time I get home! I am itching for my surgery wound to heal so I can feed my addiction once again. I seize every opportunity I have to swim in rivers or lakes, and especially in mountain tarns. The zing it brings is truly wonderful!

Small water, Coniston range, Lake District, UK

Elegant science

My chemistry teacher at school once remarked on my insatiable intellectual curiosity. I still have it. I remember tears coming to my eyes when I first read about the DNA triple helix and the mechanism by which the base pairs spell out a whole life. My breath caught and I marvelled at the simplicity and the beauty of it. I always have to understand how things work and to see the big picture, how things fit and work together. The joy I feel when I understand something new fills me with such excitement. I took it as far as a PhD, some of the best years of my life. I’m not sure I pushed any scientific frontiers, but darn, I was an expert on dopamine neurotransmission in the rat brain!

The Periodic Table by Primo Levi, proof that a love of science can birth beautiful literature

Mentoring medical students

I fell into teaching almost by accident, but it is such fun! I often doubt that I am a good teacher but at least that means that I am always striving to improve. The thrill of guiding someone to a new skill or understanding, that moment when their jaw drops and they say “Ah, now I understand!” I like to think that I am growing the doctors of the future.

Ukulele

I had no idea when my husband booked us on The Big Acoustic Walk at Plas y Brenin outdoor centre in Wales a few years ago that it would inspire me to learn to play the ukulele. I’m terrible at it but after I joined a local strumming group, The Bryce Street Strummers, I learned that my degree of talent mattered not one jot, as I could strum along to my hearts content with a bunch of friendly people who were having a whale of a time! And they also say that learning a musical instrument is protective against dementia. What’s not to like?

Don’t worry, be happy. Thanks Bobby McFerrin for a song which is easy to play!

The novel cure

It is a gift to be able to enter someone else’s world so entirely as to almost cease to exist oneself. I discovered that I could do this as soon as I picked up a story book to read to myself as a child. I am a slow reader but oh, do I savour every word. I take solace in the fact that until I lose my faculties or am no longer able to see or hear, that I will be able to vicariously experience the fullness of life.

These are just a few of the things which bring me joy. I could add yoga and meditation to the list, as well as spending time with each of my seven nieces and nephews. Oh, and eating! A delicious meal with a glass of wine always goes down well.

The front fastening bra and other post-op stories

Support options

Who knew that a front fastening bra was a thing? I certainly didn’t until the breastcare nurse suggested I invest in one the week before my mastectomy with implant reconstruction. Amoena were doing a pale pink cotton one (10% lycra, nice and stretchy) for under £15, a worthy addition to my two non-underwired post mastectomy bras from ASDA, which looked more like regular bras and fastened at the back. It only took 3 days to arrive in the post. I never thought I would find myself giving tips on bra choice for holding a new boob implant which was just bedding in. I recommend the front fastening one for better support if going out for a walk or wishing to achieve a sporty look, or if you have to whip it off quick for the surgeon to have a look at your wound. The ASDA ones are just like wearing a normal non-underwired bra with minimal support and are extremely comfy if just sitting or lying around. And surprisingly easy to get on if you do up at the waist then slip the straps over your shoulder.

Feeling queasy

I write this at day 5 post surgery, feeling oh so much better than I did on day 1 or day 2 or day 3…

The nausea persisted for a good 3 days post-op, though I’m not sure whether I can blame the anaesthetic or the antibiotics, or the fact that I insisted on eating too much as I was so hungry! Isn’t it funny how you can experience nausea and hunger at the same time? My husband reckoned I must have been feeling peaky as I turned down wine three nights running and gin on the fourth night. Definitely not quite myself!

I’m very relieved that I’m only needing regular paracetamol and ibuprofen for pain. No opiates – I do hate being constipated! My day is punctuated by 4 hourly intervals and antibiotics for breakfast, lunch and tea. Why, oh why is paracetamol so hard to swallow?! The ibuprofen and co-amoxiclav go down like a dream. Luckily I have a cast iron stomach.

Take it easy

I prefer sunshine but rain is quite handy when you are day 2 post-op and don’t feel up to doing much other than sitting on the sofa and staring out the window, and maybe doing a little blogging. At least I don’t feel as though I’m missing out on any outdoor activities. The breastcare nurse rang to make sure my husband wasn’t about to drag me up Helvellyn any time soon. Don’t worry, I told her, not this week or next. She gasped. I had her for a minute there! I promise that I won’t try it for at least 6 weeks. I feel too wiped out to contemplate more than a walk round the block for the time being anyway.

I am religiously doing my arm exercises every 3 hours, give or take. It’s very strange not being able to raise one arm above 90 degrees, which makes it tricky to do things like tie your hair up. I am also finding it hard to differentiate between what constitutes ‘a bit of pulling’ (acceptable) and ‘a potentially implant dislodging nightmare’. I can manage the cross legged yoga namaste pose though!

Somewhat draining

I don’t much like my surgical drain, which protrudes from my armpit and necessitates that I carry a bag of bloody serous fluid (yuk!) around with me. It is my constant companion for 10 days until I return for my check up at the hospital when they will remove it. I’m grateful that my very trendy tote bag, which hangs from my shoulder, almost hides the tube which sticks out from under my shirt. And I’m not allowed to wear deodorant, nor am I supposed to get the blasted drain site wet. I have perfected the ‘lying at a funny angle in the bath and reaching behind the drain site with a soapy flannel whilst keeping the drain itself dry’ move. The district nurse comes every day to empty the drain. I guess I’d rather collect fluid in a bag than have it collect in my chest wall.

Torture by night sweats

Sleeping with a breast implant and a drain stuck in your side is rather tricky. I wasn’t prepared for the night sweats. Now, I’m very familiar with night sweats having been going through the peri-menopause since failed IVF several years ago (another story if you want to rewind a few blog posts…) but these are night sweats on steroids (and I’m not on steroids). I have no warning, I don’t even feel hot, I just wake up drenched and pouring sweat. And freezing cold. The whole thing is revolting. Not to mention uncomfortable in the extreme. The first night I was home it happened in cycles of about 2 hours or less. I blamed it on the duvet and on my husband’s body heat and the fact that my chest was a bit sore. No sign of infection though. The following night I adjusted my bedding to a separate sheet and thin quilt, to no avail. The third night my covers were even lighter, to the extent that I actually felt quite cold in bed and even then I woke up drenched. Not fun! Last night was marginally better, so maybe my body is starting to recover from the surgical insult and it will settle down. I certainly hope so as I do love to sleep at night! Bizarrely enough I don’t sweat at all when I have an afternoon nap. Very weird.

My new boob is numb!

I could tell he was smiling behind his mask when the anaesthetist jauntily remarked in his very distinct Dutch accent, “you won’t be sleeping as such, you know I’m going to be poisoning you, don’t you?!” I was the sole patient sitting in the eerily empty gynaecology day unit (although I wasn’t a gynae patient) along with one very attentive nurse. I was accessorising a very fetching hospital gown, green TED stockings and a face mask, mandatory wear for anyone in hospital since the government, in their wisdom, decided 15 weeks after the Coronavirus peaked that masks might reduce spread of the virus. Not only are masks uncomfortable, give you spots and make your glasses steam up, but they make what the other person is saying to you much harder to understand. The words ketamine and morphine were easy enough to hear, but I was really not in the mood for discussing the relative merits of tramadol and codeine (worst for constipation). Let’s just go for morphine for post op pain relief if that’s what you normally use. Being a doctor-patient is always a tricky line to tread…

Sorry about the list of possible complications, said the surgeon as I signed the consent form. I ask, what’s the risk of lymphedema? 4%. Ugh! What about infection? I’ve lost 2 out of 42, he says proudly. And those two had lots of risk factors. You’ll have to keep a drain in for 10 days. Don’t let the district nurses remove it! And you must keep it dry.

It all felt a bit surreal as I padded my way down to theatre accompanied by a very chipper anaesthetic assistant who made me smile in spite of myself. I felt relatively calm and more inquisitive than anything else. I thanked the friendly anaesthetist for giving me a little pink cannula (I always used to put the bigger green ones in when I was a junior doctor). Did you think I was going to torture you any more than strictly necessary? he says, making me smile again. I feel grateful. Then I remember nothing until a loud voice says “we’re just moving you into another bed”.

I think that means I’m on the ward. I’m very groggy and more than a bit nauseated. Can’t feel any pain yet. If I weren’t so nauseated it would be a rather pleasant feeling. Ugh, my throat really hurts. The anaesthetist did warn me about that. He said he’d use the least horrid airway but it was still pretty horrid if you ask me. Every time I swallow it feels as if I have globus hystericus, except it’s definitely real and not in my mind!

I later hear from Steve that he’s been phoning the ward since 12, and eventually at about 1pm hears that I have just arrived. I can only surmise that I was at best semi-conscious on arrival as I have vague memories of being shifted from trolley to bed but nothing sticks until after 3pm. I then start to take an interest in events unfolding around me. I’m in a four bedded ward near the window. My opposite number is about to leave. From what I gather she’s none to pleased about it but feels that she’s not welcome to stay another night. My ward companions later tell me that they thought it was a shame that she didn’t just insist on staying. They both had laparoscopic hysterectomies the previous day and are staying one more night. One of them has been in urinary retention all day and says that’s worse than the pain from the operation itself! The relief she feels when she finally manages to empty her swollen bladder is palpable.

I’m offered dinner at 4.30 but I don’t feel remotely hungry so opt for a sandwich later. And several cups of tea. I set to calling Steve, Mum (who’s been panicking since 12) and responding to a whole host of texts from friends and family. I have this rather nifty contraption circling each of my calves. Blow up massagers which give my tight calf muscles a lovely squeeze every few seconds. I feel pleasantly drowsy and drop off for a bit.

The surgeon pops round to see me and admires his handiwork. It all went about as well as it could have gone. I mustn’t get the drain wet, but it looks good, not draining too much. It protrudes somewhere along my anterior axillary line near my 8th rib. I need to come back in 10 days time to have it removed. It’s a very weird sensation. I look down at my chest and gingerly touch the implant which feels cool under my skin. I mean, it’s just under my skin. I have no fat in between my skin and the “acellular dermal matrix” which is the pig skin which holds the implant in place. The skin is totally numb. I know I’ve lost my nipple but I can’t see my incision as it’s covered by a very neat dressing. I try not to think about what it will look like when the dressing is removed.

Ooh, I need the loo. Having removed my calf massagers I teeter my way towards the bathroom with a nurse hovering at my shoulder in case I topple over. Woah, steady! They did offer me a bedpan but I thought I’d run the gauntlet, which I managed pretty successfully, I thought. Not a bad effort for someone whose blood pressure was stubbornly refusing to go above 95/52 mmHg. Feeling very pleased with myself. Hope I don’t need to go again too soon though!

I grin at my fellow occupants and introduce myself. They both have the same first name which makes it easier for me. I’m awful with names. They go in one ear and out the other. Before too long the three of us are fast friends and are having a good giggle. I learn about how it feels to have your uterus removed via three holes in your abdomen and they learn about what it’s like to wake up with a fake numb boob. I’m very chuffed to hear that their consensus on my age when I arrived was that I must be about 22. I’m actually 47! My sisters and I inherited youthful genes from my mum, I think. I feel slightly euphoric post anaesthetic, though still slightly nauseous. I can talk for England though, and do so until about 9pm when it feels like bed time. I even make a surprise appearance at a Zoom meeting which my group from church have been having on a Wednesday night and reply to a work-related email remarking on the fact that I’ve just come round from an anaesthetic and oh, the wonders of technology!

I don’t end up getting much sleep as there is a chorus of snores (to which I’m probably contributing when I do sleep) and my chest is starting to ache, though the hospital bed is incredibly comfortable. At least the ward is cool and I can relax if not sleep. I become quite adept at removing and reinstating my leg massagers in order to make several trips to pee (at least I am well hydrated!) and am convinced it must be morning at 2am as I feel wide awake. 7 o’clock finally rolls around with yummy porridge for breakfast and copious cups of tea. I even manage to have a shallow bath, moving my rearranged body in a very ginger fashion, being careful not to get the drain wet. I forgot to bring a towel! Luckily the room is warmish and my now redundant hospital gown is not too smelly and doubles as a drying cloth.

I proudly don my front-fastening bra and button my baggy shirt over my tracksuit bottoms. Thank God for tracksuit bottoms. Presentable and reasonably comfortable. Tying my hair back is a bit of a challenge as I can’t raise my left arm high enough to put it in a ponytail on top of my head like I usually do. Never mind, it will have to be a low ponytail slightly skewed to the left! I seem to manage to get away with rarely having to brush my hair, which is a bonus as it needs washing less frequently that way.

Another surgeon comes to see me. My surgeon isn’t in today. I’m to come back in 10 days time for a post-op check and to have the drain removed. I’m a bit famous as I’m the first reconstruction they’ve been able to do since Covid-19 and they’ve been discussing my case every week, wondering when they would be able to whip the cancer out of my breast. He says don’t be disappointed if my histology results are not back for that appointment. Oh yes, I’m not out of the woods yet. They removed 4 lymph nodes, one of which was palpable. He answers the worried look on my face with reassurance that “a palpable lymph node is neither here nor there”. Really? Well, lets hope that the cancer is neither here nor there in my lymph nodes as I don’t relish the thought of chemo or radiotherapy. Wouldn’t it be nice if this was the end of it?

So that’s it. I just have to wait for my antibiotics then I can go. I’ve been given a sheet of exercises to do to minimise muscle stiffness and make sure I regain my full range of movement without jeopardising the placement of the implant. Steve has arrived and gone for a coffee before driving round to meet me. I’ve already received messages asking whether I’m home yet. Normally mastectomy with immediate implant reconstruction is done as a day case, but my surgeon wanted me to stay overnight as I live so far away. I have to say that I was glad of the extra care and the super-comfy hospital bed, along with the chance to check that everything still looked reasonable the next day. Every member of staff was brilliant and the whole experience, if not enjoyable, not unpleasant at all. I particularly enjoyed the company of the two ladies with whom I shared the ward.

The C word

Three words come to mind. Coronavirus, Cancer, and well, it sounds better in French “c’est con!”. A cancer diagnosis really brings the world into sharp focus. When my left nipple started discharging blood I thought it was just a side effect of the HRT I had started taking for my night sweats. Just in case, I called the GP who referred me on a 2 week wait to breast clinic. 27th February 2020. I wasn’t expecting that.

Nothing to worry about. I looked up causes of nipple bleeding and self-diagnosed papilloma caused by HRT. The doctor at breast clinic said they wanted to rule out cancer. Well, of course they did, but I was sure it was nothing serious. The look on the breastcare nurse’s face after my mammogram said otherwise. Ok, recalibrate. Everybody was so kind, that spoke volumes. I sat and sat and sat, waiting for the next investigation. My optimistic appraisal that I’d be back to run my own clinic by the afternoon rapidly dwindled until I rang my secretary to apologise profusely that I was going to have to let my patients down.

A couple of needle aspirations and three radiologically guided core biopsies later I was the longest attender of the day. Everyone was so kind, it was most disconcerting. My breast looked like a pincushion. I had some rather spectacular bruises the next day.

I was to come back for the results one week later. We had to curtail our week’s holiday in the Cairngorms to keep the appointment, but we thought it best to find out as soon as we could. I have no idea how we managed, but we got up some munros and tried our best to relax. I wasn’t relaxed at all really but it’s amazing how you can compartmentalise things when you have to. The day before we were due to travel home I received a phone call from the breast clinic saying that my results appointment was postponed indefinitely due to a backlog in the pathology department. My husband was livid. We needn’t have cut short our holiday and we were going to be stewing all weekend. I find it much easier to cope when I have something to work towards. Having the results appointment postponed indefinitely sent me into a tailspin. I joined some online cancer forums, which helped a little, at least to see that others were also waiting ages for results.

The dangers of self-diagnosis

Having been shown my mammogram and seen the segmental pleomorphic calcifications which it showed, I did some googling of radiology journals, and convinced myself that I had invasive ductal carcinoma (the most common type of breast cancer). I started to think about rewriting my will and hoped that I would still be within the NHS death in service contract so that my husband would be ok financially! This sounds ridiculous but I also found myself thinking that maybe the reason that God didn’t allow me to have children was that I would have left them motherless.

I eventually got a phone call to say that the biopsies showed atypical ductal hyperplasia and flat epithelial atypia. Eh? In plain English that’s not cancer but because the abnormal area was so large, there was a good chance that there was something nastier hiding in there somewhere. They didn’t actually say that to me but I deduced that there must be some reason for them to want to do further investigation. They reassured me that there was nothing suggestive of invasive disease, and I felt rather foolish for having planned my funeral.

The next step was a vacuum assisted biopsy. By this point it was Friday 20th March. I’d had a terrible day at work the day before and had the mother of all headaches and a sore throat, but no fever or cough. This was just before the lockdown and the advice was to self isolate only if you had fever and cough.

The radiologist who oversaw the biopsy was the first person to level with me on what he thought the diagnosis was likely to be. About 20% of core biopsies miss a cancer, and he thought it highly likely that I had something called DCIS. Ductal carcinoma in situ is cancerous cells which have not broken out of the ducts. They range from low to high grade, and in some cases never do anything other than sit there. However, you can’t just leave them in case they do transform into invasive disease, which will generally happen eventually, but who knows when?

Being (a) patient when you’re a doctor

I was offered a telephone appointment for the results 10 days later. I was sorely tempted, and came very close, to looking up my own pathology results but I resisted as I realised I could be struck off for doing so. When the time of the appointment came and went with no phone call I became more and more agitated. More than anything, is it not sheer courtesy to inform your patient that their appointment has been rearranged? The following day I received a call to invite me to a face to face appointment with the surgeon 3 days later. Oh-oh. That sounds ominous.

Throughout all this time I was trying to juggle my busy clinical job with breast clinic appointments and the psychological impact which the uncertainty was having on me. I kept having to apologise to colleagues that I wasn’t firing on all four cylinders. Not to mention the impact of all this on my husband, who felt powerless to help. To top it off, the day after my vacuum biopsy I felt distinctly under the weather, with swollen glands, sore throat and a bit of a cough, but still no fever. My husband was flabbergasted that I couldn’t get a Covid-19 test as I “didn’t fulfil the criteria”. Still, I worked from home for a week just in case. Good thing I did as I later tested positive for Covid-19 antibodies. It does make me wonder whether I inadvertently passed it on to any of the staff at breast clinic.

You need a mastectomy

We both went to see the surgeon on 3rd April. He told me I needed a mastectomy. It came as a total shock as I was expecting to hear that I might need a lumpectomy at worst. My husband blurted out “This is the 21st Century! Isn’t there any medication or anything which she could take? Is butchery really necessary?!!” Apparently “butchery” is the only treatment which works for DCIS, but it is curative as long as they take all the abnormal breast tissue (clear margins). I have small breasts so the abnormal area was occupying more than half of my breast tissue. So, no clear margins without taking the whole breast.

What came next felt totally surreal. I could’t really take it in. This is the best kind of breast cancer to have, said the surgeon. It won’t kill you any time soon. Some of these types of cancer never turn nasty. Trouble is you’re young and it’s extensive, taking up most of your left breast. That means it’s too risky to sit on it. It needs to come out. But all “elective” surgery (yes, cancer surgery is deemed elective) has been cancelled for the foreseeable future. We’ll review you in 3 months time. Any questions? (My mind went blank). I think we vaguely mentioned implants and I asked whether I’d be likely to get surgery before Christmas. Who knows, but we’d hope it’d be sooner than that… Bye!

From that point on life became a whole lot harder. I had never before appreciated what it must be like for my patients to be waiting indefinitely for a diagnosis or for treatment. It is one of the biggest headf**ks there is. I was beside myself with anxiety, not that I feared my life was in danger or anything, but over how I was going to cope with the months stretching out ahead of me with this hanging over me and no plan or even guidance. I greedily sucked up all the information about breast reconstructions which I could find, sought solace in coffee with colleagues at work (socially distanced of course), and desperately reached and reached for some sort of balm to my fevered mind.

I have always been good at seeking help and did so this time with gusto. A contact from my local Christian Medical Fellowship group put me in touch with an oncologist who was wonderful and took time to talk to my husband as well. We were less than convinced by the pathology report, which stated that there were 2 abnormal areas, one which might be DCIS and another which was more likely to be DCIS. Well, is it or isn’t it? I was reluctant in a way to seek a second opinion as I cope much better if I have a plan to work with and I liked the decisiveness of the surgeon’s plan – I needed a mastectomy and that was that. My husband was far from convinced that it was a good plan however, and was very keen for a second opinion. The oncologist had colleagues who he could recommend, so I asked my GP to refer me for a second opinion.

The referral was delayed due to getting lost in the post, but when it eventually arrived (after my chasing it up several times…) things began to move a little faster. The MDT looked at my biopsy slides and were not convinced that they showed DCIS. So I went for another biopsy of the most densely calcified area (why didn’t they biopsy that bit first?) which did show definite DCIS. The 1.5h drive to and from clinic was worth it. Surgery was still postponed indefinitely (mid May by now) but to help characterise the lesion prior to surgery I had an MRI scan which showed “possible invasive foci”.

This galvanised the surgeon into action. He thought that implant reconstruction would resume soon and called me to say that he’d like to operate at the end of June. What a sense of relief! I felt so much lighter. The presence of a plan made such a difference to my wellbeing. I went into planning mode and informed work that I would be having to self isolate from 15th June for surgery 2 weeks later.

During all of this time I had still been at work. A totally different work from the usual and much more stressful. 7 day working had come in and we were doing all of our consultations by phone or video. Many of my colleagues were working from home during the lockdown but I found that actually going to work did me the world of good. Just to have people around helped so much. My colleagues were brilliant. The trouble was that as time went on I struggled more and more to make clinical decisions (all my patients are complex and there is a lot of emotional distress. This is multiplied when you can’t see them face to face and have to make difficult decisions based on a telephone assessment) and I knew that sooner of later I’d have to stop doing clinical work. I was worried I might harm someone inadvertently through indecision and I lacked my usual clarity of thought.

The call from the surgeon was what I needed to legitimise my sickness absence. Isn’t it daft that I felt I needed to legitimise it? People had been telling me that they were astounded that I was still managing to work at all. So I gave notice of my sick leave and that I would be working from home but not doing any clinical work from 15th June. I was expecting to be called to pre-op clinic the following week and when I heard nothing I rang the breastcare nurses for an update. The reply was distinctly not what I wanted to hear – we have not yet been given the go ahead for reconstructions. We will call you next week if we have any news. Whaaaaat! The feeling of having a plan evaporated, poof! I didn’t know where to put myself. I had to go for a power walk to let off steam. What was I going to do now I’d told work that I would be self isolating from 15th June? Was I a fraud? But I knew that I was no longer safe to be doing clinical work beyond that date and that I needed to stop. How long would work put up with my being off sick without even having a surgery date?

Ten days went by, still no news. It was my last day at work. I felt about the worst I have ever felt. Guilty at not being able to “soldier on”, desperate to find some clarity and a plan, despairing over what I was going to tell my husband about my inability to carry on working. I had become deeply familiar with the Association of Breast Surgeons’ recommendations for resumption of surgery after the Covid-19 lockdown and was wondering why on earth some parts of the country had restarted reconstructive surgery while others hadn’t. I even wrote a question for the government briefing. Needless to say, it wasn’t chosen!

A difficult weekend followed, lightened on Sunday by what turned out to be our last mountain walk before my surgery. Seven hours over the Coniston range, it was wonderful to be in nature. Part of my survival strategy has been running, walking and wild swimming. I will miss that whilst my scar heals. My other coping mechanisms have been painting watercolour, doing meditations with a wonderful friend in Sydney, Australia (hooray for internet video platforms!) and counselling from Cancer Care.

Monday came and the sense of relief which I felt from not having to think about clinical work was palpable. It also make a huge difference to the tension which my husband and I were both feeling at home the previous week. I knew without a doubt that I had made the right decision. I was doing my best to hold the uncertainty as lightly as I could. Finally I was rewarded (it might also have had something to do with the fact that a whole load of people were praying for me…) with a voicemail on Tuesday evening to tell me to start self isolating tonight (nothing like a bit of notice – dash to ASDA in a hurry!) for surgery on 1st July.

Now that I have a date I cannot describe the difference in how I feel. I have a plan. My husband posted on FaceBook as a lot of our friends didn’t know what had been happening for us since lockdown and the responses and good wishes have been overwhelming. Who knows how I will feel when I have lost my breast (I hope I won’t be one of the ones whose body rejects the implant). What I can say now is that all the waiting has at least helped me come to terms with what is going to happen – who would ever have thought I’d look forward to having a mastectomy?!

Why don’t you just adopt?

Why don’t you just adopt?

How many times have I been asked this question? I’ve lost count. I always feel like I have to justify myself.

When my mum heard that our final IVF cycle had failed she sent me a link on international adoption. I don’t think she meant any harm by it. She was just trying to fix me. To fix the unbearable situation in which I found myself. To soothe the intolerable pain which she was feeling for me.

Ok, I thought. So biologically I am dead, but I can still have a chance at being a mother. I couldn’t stop crying after the final cycle, I had to take a couple of weeks off work. I occupied myself by focusing on hope for the future. I had recently seen a patient who was unexpectedly pregnant, didn’t believe in abortion, and said she wanted to give the baby up for adoption. Maybe that did still happen in the UK? Let me tell you, it doesn’t! Nobody willingly (or reluctantly with much heartbreak) gives up their baby any more.

I researched adoption and found out that in the UK they like you to be at least 1 year post your last IVF cycle. This was a convenient excuse to tell my family, who were enthusiastically encouraging me to apply. It was March 2013, a couple of weeks before my 40th birthday. I knew my age was against me. My husband, though he looks 10 years younger, is 14 years older than me.

To adopt from Russia, the combined parents’ age must be less than 90. We were already 94! Why don’t you foster? Did I have to explain myself to my well meaning colleague? That it would break my heart to look after someone else’s children and then have to give them back.

By the time I went back to work I had convinced myself that adopting was still an option, but that I should concentrate on coming to terms with not having my own biological children first. As if it were that easy! I went for the magic bullet – prayer ministry. So I apologised to God for not trusting him enough to let me get pregnant naturally. God, I’m sorry I took things into my own hands and went for IVF. If I’m sorry enough, will you give me a miracle baby?! I read stories about women who had conceived naturally after IVF. Maybe if I just had enough faith…

It didn’t happen, of course. God had other plans. He just never told me what they were.

The following Christmas I had no progress to report to my family. In January we sent in the initial enquiry form. And heard nothing. I thought that was a bit strange, so after about a month I phoned up and they said they’d never received the form. We were both really stressed at work. We decided to put it on hold.

Fast forward a year, and I felt just a little bit further from my grief. A bit more robust. Can we apply again? By this time my husband’s daughter was 15 so we thought she wouldn’t feel so displaced by us adopting. She lived with her mum anyway.

I felt a mixture of excitement and apprehension. It was January. Perhaps we’d celebrate next Christmas with a child of our own. I filled in the form. It got through this time. We were allocated a social worker. She came round and scared my husband to death.

It was weird. She seemed to warm to my husband but not to me. I thought she didn’t like me. I was very open with her. This was the only way I could become a mother. She said, you know adopting is nothing like having your own baby? I kind of knew, but had been kidding myself that maybe it would be just the same. She dispelled any illusions I had. We would not be able to adopt a baby. No babies are given up for adoption any more. Children who come up for adoption are forcibly removed from their birth families by the court. It can take a long time to get an adoption order. At least 6 months, sometimes years. Why would anyone forcibly remove a child from their family? What trauma must that cause everyone involved? Could I live with knowing that my adopted child had been forcibly removed from a mother who had been unable to care for them? More on that later.

They prioritise adopters by age. The younger your combined age, the more likely you are to get a younger child. The social worker strongly advised us to apply for an older child as she thought our chances of getting a child under 2 were vanishingly small.

I know all about attachment. I know that the older a child is when he/she is removed from an abusive or neglectful environment, the more difficulties they have. I also know that children who are not adopted before the age of 2 are likely to have been subjected to all sorts of difficult things. I also know that my health is not all that robust. I suffer from recurrent depressive episodes, often brought on by stress. My husband was also going through terrible work difficulties at the time. Would we be able to cope?

We asked the social worker for some time to talk it through. We did, and decided that we would not be able to cope with adopting an older child. I called the social worker to let her know that we would take our chances in the lottery for under 2s. She said she’s ask her boss if that was ok (citing my husband’s age as an issue – you can imagine how that made him feel). She’d get back to us. We waited…and waited…and waited.

Three months later I finally managed to get hold of her. She hadn’t wanted to upset us with the news that we would not be able to adopt a young child. Could we up our age limit a little? Under 4 maybe? My heart sank as I foresaw the conversation I would have to have with my husband. This was ageist, unfair. Why were we being discriminated against?

I met up with a colleague who had adopted a 2 1/2 year old. She said she wouldn’t want to adopt a baby anyway, as you don’t know what developmental problems they are going to have. She encouraged me to apply for a child under 4, but to request as young as possible. She also warned me to read between the lines on all the reports, and also to consider taking a child with an illness, as it could be something as innocuous as eczema. I relayed this in a passionate plea to my husband, who bravely acquiesced.

When I phoned the social worker to tell her we wanted to apply for a child under 4, she asked what had changed. I explained that we understood the realities of the situation and that this was my only hope of being a mother. I could sense her concern on the other end of the phone.

Had we also considered concurrent adoption? That’s when you foster a baby while the case goes to court to decide whether adoption is the right thing. You have to take the baby for regular meetings with the birth mother. There is a small chance that the baby will be returned to its birth family. I wanted to be able to do it, but then where would we be? Would I be a mother? No, I’d be fostering. It would break my heart to have to explain that this child may or may not eventually become ours. Knowing my luck it would be one of the few cases where the child ends up going back to the birth family. I couldn’t take such a risk. My heart was too fragile and broken already.

Around this time I was meeting regularly with a friend who had agreed to be one of my referees. She was scared for me, for us. She warned me that she would have to be brutally honest on the form and say that she was worried about how we’d cope with an older child who had serious attachment issues. A few of her friends had been down that road as she looked on with a mixture of awe and horror. Still, I pressed on.

The social worker explained that they would need to interview my ex husband and my husband’s ex wife. I asked why. It had been an abusive relationship. It was in order to see why the marriage had failed. Whether there was something in me that would preclude me from being a good adoptive mother. I was flabbergasted, not to mention insulted. I had had no contact with him since we separated 6 years earlier. Could I not get in touch? So I sent him an explanatory email, asking if he was willing to be contacted. He said ok, no problem.

The other thing they needed was a letter from my psychiatrist to say that I was fit to be a mother. Again, I fumed inside, thinking, how dare they?! I’d be a darn site better mother than many women who have never had to see a psychiatrist. I’d only seen him 3 times, and my health had been stable for 4 years. Still, they needed a letter. I had been discharged so I had to write to beg him to help me. To my amazement he did so with alacrity and wrote a very lovely letter which basically said that I was the most well patient he had ever had and that he had no qualms at all in recommending me for motherhood!

Obstacle after obstacle after obstacle was thrown in our way. The Disclosure and Barring service forms took ages. I even had to apply for one from France as I had lived there for a year when I was a student. You couldn’t make it up!

Whilst we were in this limbo I assessed a patient who had tried to jump off a bridge. Her son had been taken away from her at birth as during her pregnancy she had tried to cut him out with a knife, and she was deemed too unstable to care for him. He was being fostered whilst waiting for adoption. She had been given the chance to have regular meetings with him but had not been able to convince the social workers that she would be able to meet his needs. She was beside herself with grief. She just wanted her child and couldn’t understand why she wasn’t being given a chance to be his mum. I’m sure the story sounded very different from the other side, but my guts knotted in response to her emotion. How could I adopt, knowing that the birth mother was likely to be in this much pain? That was one of my most impactful patient encounters.

I put her pain to the back of my mind. The preparation course was coming up and then we could start the full application process. My husband was sleeping badly and having a lot of work stress. It was hard to get the 3 days off to go to the course. My family all knew exactly what was happening. He’s much more of a private person than me and didn’t want to tell anyone, including his family, until we had some certainty. I also wondered whether he secretly just hoped it would go away.

Nearly 10 months after we had started our initial enquiry, we arrived for day 1 of the course. My husband had hardly slept, and I felt nervous. There was another couple there of a similar age to us. She was infertile like me. There was a single mum who felt she wanted to do something worthwhile and adopt an older child. Wow! There was a lady whose friend had adopted a 7 year old who was now 12, extremely violent and vicious to his adoptive mum. He kept assaulting her and shouting at her that she didn’t love him, and that he hated her.

I was under no illusions about the sort of treatment children who came up for adoption had been subjected to. All kinds of abuse, some obvious, some hidden. I could see my husband’s face get more and more grave as we discussed sexual abuse (estimated at least 50% of adoptees), neglect, violence and their consequences. The most damaging is neglect. There are very few adoptees who have not suffered neglect, and its effect on attachment is devastating.

We had to get in to groups and imagine how a child who had undergone all this abuse must feel. Even those who are removed before too much abuse can happen are severely affected just by the fact of being removed from their mother. I felt sorry for the social workers. You’re damned if you do and damned if you don’t. The lady next to me was firm in her belief that there’s nothing a little bit of love can’t heal. I wished I had her faith.

An adoptive mother came to talk to us about her experience of adopting a sibling pair. My mum had been keen for us to do this as you are much more likely to get a match as siblings are harder to place. Trouble was, I was worried enough about coping with one, let alone two children. The lady was very frank. She spoke about the honeymoon period, then about how they had had to approach child mental health services because they needed help. She tried to put a positive spin on it but I could see the look of dread on my husband’s face, and almost feel his heart start to race.

The mood was sober when we left to go home. I was worried I’d been too negative in the group as I was the only one who had expressed my fears that I might not be able to meet the needs of an adoptee. Everyone else was so positive, so full of hope, so willing to take a deep breath and jump right in.

I think we barely said a word to each other that night. My husband didn’t sleep a wink. I mean not one wink. When I saw him in the morning he looked destroyed. He felt sick and couldn’t eat. He couldn’t explain to me what it was. But I knew. I knew that he knew that we couldn’t go through with it. We were just not strong enough.

We arrived early at the course and went to speak to the social worker. She was lovely. She said she had been worried about us and she thought we were making the right decision. That hurt to be told that. As if we were not good enough to take on the challenge. I sobbed and sobbed and sobbed. It was as if all the grief which I had put on hold, in the hope of a happy ending after failed IVF, bubbled to the surface and overtook me in a great big tidal wave.

At the end of the day, what I came to realise is that adopting is not about becoming a parent. It’s not a substitute for not being able to conceive. It’s about the child. It’s all about the child. It’s not about my need to be a mother, my overwhelming desire to give my unending love to a child. I felt that to adopt would require me to be entirely selfless. I don’t have that in me. I’m not strong enough to love a child who hates me, who breaks my heart over and over again. Maybe I could bear it if it were my own child. But not someone else’s.

Judge me if you like. But this is my answer to the question ”why don’t you just adopt?”

What they don’t tell you about IVF

It’s nearly six years since our final failed IVF treatment. Maybe the process has improved by now, but I wanted to share what it was like now that there is a bit of emotional distance between me and my experience. I should have known, when my line manager said “um, that can take a while you know”, that it wouldn’t be an easy ride. The first thing was trying to plan taking the time off to go for the check ups. We had to travel nearly 2 hours to the clinic, which meant taking the whole day off work. I’d gone part time, so that made it slightly easier. The trouble was that my cycle did not understand that I could only make the journey on Mondays and Tuesdays. You can apparently take “special leave” of up to 2 weeks for things like IVF, but you have to seek special permission and I didn’t want to draw attention to myself, nor to be seen by my colleagues as skiving. So I used up my annual leave. The difficulty was that we’re supposed to book leave well in advance. How could I explain that I may or may not need to take leave this particular week or that particular day depending on how my ovaries were behaving?!

Another hurdle to overcome was my husband’s belief that it would happen naturally if we just gave it a bit more time. I’m not sure he realised that my 38 year old ovaries did not have any more time. We couldn’t have the treatment on the NHS as he already had a child from his first marriage. Not that she lived with us, or that I was anything like a mother to her, but that didn’t concern the CCG. You have to ration it somehow. The fact that it was going to cost £7000 a pop was rather eye watering. My sister tells me “IVF’s just a numbers game, you know.” Yeah, and I know how to multiply by 7.

I am awed by women who go through multiple IVF cycles. We only managed 2. Even if cost had been no object we still would only have managed 2. It isn’t the poking and prodding, injecting yourself, stuffing your body with hormones, steroids, aspirin and all sorts of other things. It’s the emotional toll. This I was entirely unprepared for. I am used to being in control, to planning everything and being highly organised. This was out of my control. First I had to take HRT and hope that it regulated my periods. On the third cycle on day 2 of my period (“full flow” not just a bit of blood) I had to get a blood test for FSH level. Only if the FSH was below 14 could I start an IVF cycle. That was the first bit of uncertainty. I got the go ahead to start injecting and began to turn my tummy into a pincushion. Tricky as you have to inject at exactly the same time every night, no matter what you’re doing. After a few days I went to the clinic to get a scan to see if I was producing any egg follicles. One or two. Increase the dose and come back in a couple of days. Mm, it’s marginal, but keep going. Time to take the drug to stop you ovulating. Arrive at the clinic on a Saturday morning for egg collection. It’s been about 10 days since I started injecting. I wake up and immediately ask how many eggs they got. Six, they tell me. That sounds hopeful. Maybe this will work after all. I feel rather euphoric (I think it’s the anaesthetic). A few hours later my tummy hurts like hell and I have diarrhoea. I think the needle might have irritated my peritoneum.

Next day we phone to ask if there’s any news. One egg has fertilised. Oh my gosh, only one? Will it survive? Will all this have been for nothing? We can’t tell, call back tomorrow. Next day, still alive and dividing. Come in tomorrow for embryo transfer. Then the dreaded 2 week wait. We waited 2 weeks. Pregnancy test was negative. I couldn’t allow myself to feel. We’d have another go.

It took a lot of convincing to persuade my husband to try again. It wasn’t just the cost. The emotional turmoil of going through another cycle was daunting. We had a break to recover. We went to see the consultant and I was champing at the bit to try again. He advised to wait 3 months and take melatonin. Apparently melatonin improves your chances. All it did was give me night sweats which smelled very bizarre. The night sweats have continued ever since. Maybe it was just the menopause and not the melatonin after all.

Second try. This time I knew what to expect so I booked 2 weeks off work to coincide with the end of the 2 week wait. Again the uncertainty at every step. Was my FSH level on day 2 going to be low enough to proceed? Yes, but only just. We started with the highest level of injections as my ovaries had been so unresponsive last time. Only one follicle developed. Still, we persevered. We can’t increase the dose because I’m already on the max. Hope that there’s an egg in there. We’ll do our best to retrieve what we can, they told me when I arrived to egg retrieval. One egg. Only one. Even worse than last time. But it looks like a mature one. We’re still in with a chance.

How do I feel? Seeing as they got 6 eggs last time and only one fertilised, I don’t feel too hopeful. I feel a bit sick. The next day we phone and it’s starting to divide. Two days later we go in for embryo transfer. It’s only a grade 3. That’s not good. Do grade 3 embryos ever become babies? Rarely. The nurse tries to give us hope. “You’ve got a lovely little blast there!”. She’s lying. A blastocyst is an embryo at 5 days gestation. This was a grade 3, day 3 embryo, barely clinging on to life.

The following 2 weeks were the longest in my life. They ended with the end of hope. I couldn’t stop crying. I went to work but burst into tears as soon as I got there. I had to take sick leave. That was it. My ovaries were finished. There was no point in trying again as I had no viable eggs left. The next day my mum and my sister sent me an article on adopting. Go figure.