Cancer in the time of Coronavirus

It's been a few months, so I thought I'd post a little update. I have been re-reading over some of my past blog posts recently as I'm writing my Masters dissertation on 'Cancer and the Construction of the Self', and it's been fascinating to me seeing how I articulated my feelings during treatment. I'm so glad I kept this record, and I know that it has really helped others who are going through something similar.

I finished active treatment (again) towards the end of last year, with my final preventative breast surgery. I still have a number of appointments in the diary, a regular check-up with my ovarian oncology team; blood tests for ovarian cancer markers (both 3-monthly); visits to the menopause clinic and the Lymphedema clinic (both 6-monthly); Zometa infusions on the chemo ward (also every 6 months for a total of 3 years); and I have to regularly pick up prescriptions from the pharmacy for Tamoxifen and various other things I have on repeat prescription. 

In early March, as we could see what was happening in China and Italy, Tanai and I decided to self-isolate at home, to protect us both from the coronavirus. My immune system is still compromised post-treatment and I didn't want to take any risks. Tanai started working from home, and all my work could be done from home, so it was relatively easy to do. A week later, the government mandated a country-wide lockdown, and I was sent a letter and a text from the government requiring me to 'shield' for 12 weeks. This meant not leaving the house, and making sure no-one in my household exposed themselves to the virus, as I would be a burden on the NHS if I caught it. As we were already doing this anyway, nothing much changed. At first we struggled to get provisions, and were using up our storecupboard food (and toilet roll!). I couldn't get an online shop as all slots were taken, and our veg box became extremely unreliable with most things missing each week as they struggled with the surge of orders. For a few weeks we received a government box with essential provisions, and it was literally a lifeline to us until I managed to get on the Sainsbury's 'vulnerable list' so could get a grocery delivery once a week. We dutifully didn't leave the house, which has been quite tough, as we live in a small one-bedroomed flat with no outside area, and May was the sunniest month on record! Eventually we decided to leave the house for one hour a day, either early in the morning or late at night, for a walk or run. Luckily we live in an area which is full of offices, and very few residents, so we have felt quite safe as the streets are relatively empty. I'm hugely grateful for the fact that we have been able to properly shield, that Tanai has been able to work from home the whole time (actually the university closed so he had to work from home!) and I was able to switch the freelance work I had to remote work. 

Out for a dusk walk

NHS text

Most of my medical appointments have either been cancelled, or moved to phone appointments. I have missed one of my ovarian cancer blood tests, which will leave 6 months between tests instead of 3, but as I'm low risk they are not too worried. My local Boots closed, so we had to walk further for my prescriptions, but the Boots branches have implemented plastic shields for their staff and a limit to the number of people in the store at once, so again, I feel very safe. 

Since January, I have been working as a volunteer phone counsellor for Breast Cancer Now, supporting other women with a diagnosis on their 'Someone Like Me' phone line. I get paired up with women who have a similar situation to mine in some way, and we chat on the phone for an hour or so, with the regularity determined by their needs (some weekly, some monthly, some for just a one-off chat). I have found it very rewarding, as I love to help other people through their own cancer journey, and use my experiences for good. It's also making good use of my coaching training, as we are not there to give medical advice, just to share our experiences and help others see through the fog of their treatment and build their own resilience, finding their own resources to cope. Since Covid-19 hit, demand for the service has increased, perhaps because the NHS is so swamped, and I have had quite a few 'clients'. And of course, lots of the advice I give is no longer always valid! Their experience of going through treatment in these strange times is very different from mine. They are not allowed to take anyone with them to any of their appointments. They can't organise 'treats' for themselves on a good week such as going to a restaurant. And it must be incredibly stressful putting yourself in an immunocompromised position when there's a respiratory disease doing the rounds. There are quite a lot of changes happening. Elective surgery was paused for quite a while, and the women I'm talking to are not allowed to have immediate reconstruction during their surgery if they have a mastectomy. Understandably, many of them are very anxious, and it's nice to be able to help them in the small way I can.

I suspect I will also have to make compromises: my next Zometa is scheduled for August, and I'm reluctant to go into hospital for my infusion during this pandemic. The Zometa gives me another 2% reduction of the potential of recurrence, as well as protecting my bones from the affects of my treatment, so I have to weight that up against the risks. I am getting very worried about my bones, however, so I have decided to go into the hospital for this infusion. My bones are at risk due to the chemo drugs I have had, and the medical menopause I'm now experiencing, as well as the Tamoxifen that I am on for 3 years. Already I am experiencing a lot of bone pain, often so bad it wakes me up at night, and I really want to be able to still do the things that I love, like hiking and yoga, so I need to give my bones all the protection I can.

I am also experiencing incredible pain in my hands and arms at the moment. I am writing my dissertation for uni so I'm at the keyboard a lot, and the nerves in my hands have been damaged by the chemo. I get shooting pains in the back of my hand almost constantly, and the pain is waking me up at night.

Another long term side effect is lymphodema, which I have sporadically in my right arm, hand, leg and foot, and permanently in my abdomen and torso. This is because I've had so many of my lymph nodes removed, so my lymph fluid gets stuck and builds up. It gets worse when the weather is warm, which is a lot at the moment. My abdomen is so swollen that most of my clothes don't fit me any more! They are too loose where my boobs used to be, and too tight around my hips! So I've been selling a load of my clothes on eBay. I've actually been really enjoying it. Some of them only sell for 99p but it feels great to be getting rid of them and sending them to a new home. I have worn some lovely frocks in my time, and now it's someone else's turn. I'm also really loving my new flat figure, and experimenting with different looks. I've embraced being bra-less every day, and I've got some good ideas of the kinds of clothes I'd like to try. But as we are still mainly at home I'm rotating between the same small number of outfits for the moment!

I realise there are some niggles and moans here, but it's important that I am honest. I know I'm incredibly lucky that I've managed to get rid of cancer twice, and I have given myself the best possible chance of a long and happy life, but I do have permanent disabilities which have resulted from my treatment which are affecting me on a daily basis. I'm finding work-arounds and ways of dealing with them but that doesn't make it any less difficult on most days. 

Some of the swelling on my torso is making me a bit worried, as I have some strange swelling on the left hand side above my belly button. It could just be scar tissue, but my oncologist has referred me for an ultrasound, which I should have in the next couple of weeks, so fingers crossed that is nothing to worry about. I can't quite work out if it's always been there but my boobs were in the way when I looked down so I couldn't see it! Ha ha.

Anyway, my next blog post is going to be a guest post! Very exciting. So watch this space...

Here are some more govt and NHS messages and flyers that I have received.

Pathology results (again!)

Today I went to see my breast surgeon, Miss L_____, for my post-op pathology results. They sent all the tissue they removed on 3 December to the lab, and it's great news: there was no evidence of disease in any of it. So I'm once again officially cancer-free and on the road to recovery. It felt quite emotional actually, and a huge relief. How great to get that news just in time for Christmas and the end of the year.

My surgery went really well. Here's a little update on it all.

Marked up with sharpies for surgery

So I went in on 3 December and was put under anaesthetic around midday, and woke up around 3pm. I had far fewer tubes and wires than last time, just a cannula in the inside of my left elbow for the anaesthetic and pain relief, and two drains coming out of either side of my torso just underneath where my breasts had been, held in place with stitches. I was quite woozy from the anaesthetic but felt great, and so relieved to have them removed at last. I have felt as though I had two ticking time bombs on my chest for the last few months! I managed some dinner on the ward and they let Tanai stay with me until quite late. The nurses were all totally wonderful and checked my blood pressure and temperature regularly through the night. I had my own room but still didn't manage to get any sleep! I think the adrenaline was pumping and I actually felt quite nervous so my body kept waking me back up every time I dozed off. Every time I wanted to go to the toilet I had to carry these two drain bottles with me, and it was all quite awkward, but I managed it.

Very woozy post-surgery dinner

One of my drains on the floor by my bed, draining from my body.

The next morning I was visited by various people, including the two surgeons who had removed my breasts. I hadn't realised but there was one surgeon on either side! I am quite intrigued as to which side was done by my amazing surgeon and which by her registrar, but I guess I'll never know. Both sides look great, really neat and tidy, so both of them did a fantastic job. I have no stitches either: they used glue. And I have been feeling remarkably pain-free, I've only taken a few paracetamol in the couple of weeks since my surgery. A nurse removed my drains under the supervision of a more senior nurse, watched by a student nurse. I had some lunch and then I was discharged. Home less than 24 hours after waking up from surgery, how incredible.

Just before my drains were removed. The boobless wonder!

Since then I have been mainly resting on the sofa, trying to do little walks each day and doing my physio exercises a few times a day. My range of motion is not bad, but I can't lift my arms too high, and I'm not supposed to be lifting anything heavier than a small glass of water. Tanai couldn't be away from work too long (this is my third surgery of the year after all!) so I've had a roster of amazing friends coming over to make me lunch each day, which has been lovely. I've started getting back into my studying, in anticipation of all the essays I have to complete next year, and I've been listening to lots of podcasts. I have bought a giant U-shaped pregnancy pillow which is really helping me to sleep well. And we are being very careful about infection risk, washing bedding, towels and PJs every day.

 The amazing pillow

One of the inevitabilities after surgery is a seroma. This is a gathering of fluid near the surgery site, which the drains would have drained away. Over the last couple of weeks I developed two seroma, right where my breasts had been. They looked like cute little a/b-cup boobs! But they were sloshy and uncomfortable, so when I saw my surgeon today she drained the liquid out of them, leaving me flat again. There was 90ml in the right one, and 150ml in the left one! Apparently I will probably need to go in a couple more times before my body learns to reabsorb the liquid itself. I feel much better now and it was quite emotional saying goodbye to Miss L_____. She was the one back in February 2017 who first told me I had breast cancer. What a rollercoaster it's been since then. And today we said goodbye, shook hands, and with a little bit of luck, that's the last of it.

Of course I still have various follow-up appointments, including one in January with my ovarian oncologist, but officially I'm now part of the 'open access follow-up' programme, which means I have to just contact them if anything feels strange and they'll see me. Given that there is very little left in my body for the cancer to grow in, I'm hoping that I don't have to go back in.

It really feels like a huge milestone, the end of a particularly challenging chapter of my life, and the beginning of a new one. I am marking this change in a number of other ways. We have given notice on our flat here in Clerkenwell, and we will move out in March. It's been lovely living here for 3 years and I was so incredibly lucky to live close to St Bartholomew's Hospital, one of the best cancer hospitals in the country, for my treatment. It's also been a gorgeous, sun-filled space to recover and convalesce. But for various reasons we've decided to move in the new year, partly to get somewhere cheaper and with more space, and partly to move out of central London and to somewhere a bit more 'local' and leafy. It's time to move on.

As you know, I continued to work all through my treatment, even through both my bouts of chemo, which, looking back on it all, was incredible. It was good for my mental health at first, but this year my mental health took quite a battering, and unfortunately work was contributing to a lot of that stress and negativity. So I took the astonishing decision to quit my job and go freelance! Perhaps a little rash, but cancer definitely makes you realise how important it is to feel happy and fulfilled in your career, especially given how much time we spend at work. I have been giving myself a little rest for the last few weeks, but in January I will start up with my own consultancy. I'm just getting my website ready now. And fingers crossed I will quickly find some paying work and make a go of it. I'm very excited about this development and I'm confident it will work out well. I've always wanted to be my own boss.

And finally, perhaps trivially (although it doesn't feel that trivial), I have realised that I will need a whole new wardrobe, and a whole new look. My body shape is completely different now. I am slender and flat on top, and due to my ovarian cancer surgery, I have permanent swelling in my lower torso, so all the lovely fitted 50s-style frocks I used to rock, just won't look right any more. I'm actually really enjoying wearing old t-shirts that my breasts used to distort, and I've even picked up a pair of Whistles trousers from a charity shop which I love. I've not owned a pair of trousers for years! I'm going to operate a 'one in, one out' policy, and only purchase new clothes when I've raised enough money from selling my old ones. I have so many lovely frocks, so I plan to ebay them all in the new year. I will also donate some of the money to Breast Cancer Now, who have been so amazing during my treatment.

Flattie with fish and chips

So there we go! The enormity of it all hasn't quite sunk in yet. But I'm looking forward to a relaxed Christmas up north and a very low-key new year. Bring on 2020 and all the regeneration it promises!

Cancer survivorship course and lymphedema clinic

It's been a week since my second round of chemo and I'm doing well, despite not taking my steroids this time. As with last time, the first couple of days were fine, I felt well and had loads of energy. Then days 3-5 (Saturday to Monday) I felt pretty rubbish, the nausea kicked in and the fatigue hit me. Unfortunately, as I hadn't planned on this week being a chemo week (but my treatment was delayed) I had made quite a few plans. Lunches, coffees and dinners with friends and visitors from overseas. I soldiered on through them all, and then crashed on Sunday, exhausted. I tried to make it into work on Monday but the nausea was overwhelming, so as soon as I arrived I had to turn around again and come home. But by Tuesday morning I felt fine again and I have been doing okay since then, cycling into work, or walking home, trying to ensure my resting heart rate doesn't creep back up too much.

My hair is doing really well too. I'm loving my new hair style. A few strands of hair come out each time I wash my hair, but nowhere near as bad as the clumps that were falling out when I had chemo in 2017. I'm restricting myself to only washing my hair twice a week to minimise hair loss, so hopefully I'll get to the end of chemo with just a bit of thinning. I did keep all of my headscarves from last time I had chemo, but it's nice not to have to use them again. Although I have been wearing some of them as regular scarves, as they're so beautiful!

New earrings!

On Monday evening I started an online course on 'Cancer Survivorship' which I think is going to be interesting. It's from 7-9pm on Monday evenings and we all join each other from all over the country via Zoom, an online meeting software. It's for people of any gender, age and cancer type, and includes participants with primary and secondary cancer. It has four main components, focussing on our psychological, physiological, immunological and emotional health. It's run by a passionate, knowledgeable and enthusiastic guy called Sam and he has run this within the NHS before, and many times online. It's evidence-based, but also rooted in positive psychology and influenced by ayurvedic medicine. He cites some incredible case studies to back up his advice, and over the next few weeks we will gain lots of knowledge and techniques, which I'm looking forward to. The intro session laid the foundations, focussing a lot on positive psychology, and how we can use our minds to determine some incredible physical outcomes. I think it will be really useful, I'll keep you posted.

Joining the class

This week I also had my appointment at the lymphedema clinic, where I saw a nurse who gave me some advice about the swelling I now have around my pelvis and abdomen following the removal of my pelvic lymph nodes. She has taught me some 'MLD', or manual lymphatic drainage, which is basically where you perform massage on various parts of your body to encourage the lymph to drain and reduce swelling. She also gave me some kinesiology tape, and showed me how to stick it from my back around to my stomach, so that it massages my lymph around my body while I'm walking along. She has also ordered me some compression tights which should help, and she told me to buy some cheap spanx-type shorts to create more compression around that area. LOL. I also have to get a gel cover for my bike saddle to protect my lady parts from problems caused by my surgery. She said that you can pay to have manual lymphatic drainage done privately by experts, but that it's better to try to get someone to teach me techniques so that I can ensure I'm doing this frequently and getting maximum benefit. 

Tanai heads off to Colombia for 3 weeks on Wednesday, so I'll be home solo for a while. I've got a few little bits and bobs planned but I'm hoping to have a relaxed summer and continue to recover from my surgery and build my strength.

Studies and courses

Here's another update from me, to let you know how I've been getting on. I'm doing well, generally, and continuing my road to recovery. I'm feeling stronger every day, and have more energy too. My hair is growing back, which is great, although it has a distinct wave to it (it was completely straight before) and it's much darker than my old hair, but I'm taking that in my stride (I've always wanted curly hair!).

A few weeks ago I took part in a study at a London university which was examining cognitive function and psychological health in women with a breast cancer diagnosis. I spent 3 hours in a room in the basement answering questions and attempting difficult tasks on a computer while wearing an EEG cap to measure the activity in my brain. It was quite fascinating and I'm dying to know what they found over the course of the study. They were researching 60 women with a diagnosis and a control group of other women of a similar age and education level. Although I feel as though my cognitive abilities are definitely coming back (no more 'chemo brain'!) I'm still finding that I get frustrated with myself more easily when I get things wrong, or struggle to find my words. I suspect that is what they found when they analysed my brain. When I got things wrong that I felt I ought to have got right, I became so frustrated with myself that it affected my ability to get the next few things right too. I definitely came away feeling as though I should be a little less harsh on myself.

Wearing my EEG cap like a muppet

I've also been doing a 7-week course at the new Maggie's Centre in the grounds of St Bart's hospital, called 'Where Now?'. Designed for people who have finished their active treatment for cancer, it's perfect timing for me to be getting help and advice on getting back into the swing of things and coping with the after effects of treatment. There are 12 of us in the group, of mixed ages and cancer types (I'm the youngest) and we meet every Wednesday from 12-3pm. We start in the hospital gym and do an hour's worth of circuit training, with the wonderful physio, Claus, ensuring that our activity is tailored to our abilities. Then we have an hour's talk on a different topic each week (the first week was nutrition, the second exercise, and coming up are stress management and other useful topics) and then we have lunch together. So far I'm finding it really useful, and the Maggie's building is such a calm, beautiful haven. Anyone can go in there at any time, make a cup of tea, and talk to some of the specialist staff there. 

Inside Maggie's

I'm doing plenty of exercise and making sure I do lots of active minutes each day. Regular exercise which increases the heart rate significantly (160 minutes a week) has been proven to reduce the changes of the cancer coming back by 40%. This is significant enough for me to be fully prioritising working out! Over treatment I put on 10kg (a stone and a half in old money) and I've already lost a third of this already. It's slow going but I'm making sure I'm still feeding my body plenty of nutrients to aid its recovery. I'm eating lots of leafy veg and eating oily fish to help my bones. I've bought a 'Nutri Ninja' and I've been making delicious smoothies, including many green ones. Getting all my vitamins and minerals!

A beetroot smoothie

I've also had continuing appointments, so although I'm done with active treatment, I'm still a regular at St Bart's. I have a few Herceptin injections left and I'm on the Zoladex indefinitely. I try to ensure as many of my appointments are on a Wednesday as possible, and I keep my fingers crossed that the clinics are all running to time. Sometimes I have to wait hours for my medicines to arrive from the pharmacy. I kind of didn't mind the wait when I was having chemo, but now I'm only getting injections I'm keen to be in and out as quickly as possible. Everyone's so lovely there, though, and most of the nurses know me by now, so there is quite a jovial atmosphere and I'm always happy to see familiar faces. Over the last couple of weeks I've also had my regular echocardiogram test, to ensure my heart is still working well despite the Herceptin; a DEXA bone scan to see how my bone density is now that I'm being forced into the menopause; my regular oncology appointment; and I've also had to go to the dentist to get some work done (it never rains but it pours!). I've also had a follow-up with my GP too, it's one thing after another! But I feel as though I'm in safe hands, and it's nice to be easing myself out of treatment rather than disappearing suddenly. My GP has referred me to a sleep clinic as I'm struggling with my sleep at the moment, and this is affecting my daily life. I'm not having any problems falling asleep at the beginning of the night, but I'm waking up 4-5 times each night and I'm struggling to get back to sleep. Hopefully they will be able to help a bit.

NHS chic

During treatment I couldn't go swimming because my neutrophils were low and I was at high risk of sepsis, but now my immune system is doing much better I've started to go swimming in the mornings again. I go to a lovely pool in Kentish Town, near where I work. It's a Grade II listed building and was a public baths back in the Victorian era. Built in 1898 it was where working class people (who didn't have washing facilities at home) used to come and do their laundry, and wash themselves. Now it's been completely restored and I enjoy a tranquil swim under the sunlight-filled roof before work.

One of the other risks my surgery brought about was that of lymphoedema, which is a permanent swelling of the arm and hand on your surgery side. Basically our bodies have a lymphatic system which is constantly moving lymphatic fluid around all the  time, and as I had some lymph nodes removed from under my right armpit during surgery, my lymphatic system is now compromised, so the risk of localised fluid retention and tissue swelling in my right arm has increased. I only had 2 nodes removed, in order for them to check whether or not the cancer had spread, and as they were fine, I didn't have any more removed (some people have them all removed, putting them at a much higher risk), so I didn't think it was likely. I have been diligently doing the exercises given to me post-surgery in order to keep my lymph system going as well as possible. However, last weekend was a very hot weekend by the UK's standards (highs of 29 degrees!) and unfortunately on Sunday my right hand started to swell.

Fat right hand

The swelling remained for a few days so I called my Breast Care Nurse (everyone has a dedicated nurse they can call at any time) and she advised me to pop into the clinic to see her. She measured the circumference of my arm and hand at various points between my knuckle and my upper arm, and at all the points, my right arm was a centimetre wider! But they're still not 100% sure it's lymphoedema, so she's referred me to the specialist clinic. She's also ordered me a compression sleeve and glove for my right arm and hand, which I should wear to encourage the circulation of my lymph fluid. Strangely I'm finding this quite upsetting, even though I suppose in the grand scheme of things it's nothing! But I can see it all the time and it's a constant reminder of the changes my body has been going through. Fingers crossed it's just the heat and it will go down a bit when the weather cools.

[A few days later]
The hand swelling has gone down quite a lot! It's not quite the same as the left hand but it's no longer quite so fat and sore. Hurrah!

I'd better sign off for now, as this is getting very long. Will do another update soon.

Cancerversary and the long road to recovery

Thursday 27 February was exactly one year since I received my diagnosis, otherwise known as my 'Cancerversary'. I wasn't planning on marking it in any way, as it's only a few days after my birthday and I had enjoyed a lovely weekend of birthday celebrations, but Tanai and I braved the cold and had dinner in a Peruvian restaurant, toasting ourselves with pisco sours for getting through this last tough year.

So now that I've seen off the cancer, my life has become primarily about making sure it doesn't return. The Tamoxifen and Zoladex (which I explained more here) have properly kicked in, and I'm currently experiencing the full force of menopausal symptoms. I have a couple of hot flushes every hour during the day, and several times at night, which is waking me up 3-4 times every night. I'm struggling a little with how this is affecting my sleep, so I'm trying to do as much as I can to reduce the impact they have on me. (I've also decided that 'hot flushes' is a ridiculous name for them. More like 'power surges' -- honestly they are so full on!) I'm doing a 4-week self-guided CBT course to try to reduce their impact and frequency, and I've even bought a 'lady magnet', a small magnet that you wear attached to your undies which, in some women, reduces the severity of hot flushes (I told you I'd try anything!). At the Bart's menopause clinic they have prescribed me with some anti-hypertension drugs which reduce hot flushes as a side effect. But I'm just going to wait a few weeks before taking them, preferring first to see if I can do something more natural. They are absolutely horrid though, and I can see how they are quite debilitating, especially in a work situation. It's so difficult to describe them but it's almost as if your bodily temperature gauge is broken, and your temperature oscillates between freezing and boiling all through the day and night. Because my sleep is being so interrupted, I'm having to try to ensure I have many hours in bed each night, in order that I can get as much sleep as possible just to feel rested.

I also received a phone call from my GP practice, saying that they knew I'd come to the end of my active treatment, and that they were now responsible for my care, so did I want to come in and have a chat? Quite astonishing, how pro-active they are! So I went to see my GP (who is lovely) and she helped me out with a few things. She's referred me for a DEXA scan (a bone density scan) so I can see how my bones are faring, and she's referred me for some counselling, to help me make sure my mental health is holding up after a challenging year. I feel as though I've done really well so far,  but I'm finding it hard to deal with the affects of the drugs on my body, the sleepless nights, and the lingering fatigue. Everyone thinks I'm 'done with cancer' and well again, but I'm still going through a lot, and trying really hard to maintain my strength and positivity. It's starting to take its toll, so I figured a few sessions with a professional wouldn't go amiss. I'm also probably putting a little too much pressure on myself to quickly get back to some kind of 'normality', when I should instead be gentle with myself and allow a long and effective convalescence. It's just so hard when I feel I've pressed the 'pause' button on life for so long already, and I'm itching to get back into the swing of things.

The GP also recommended some retail therapy. No, really! I was talking about how I was trying to lose my treatment weight but it was taking its sweet time (2.5kg down, 7.5kg to go!) and she said 'why don't you go out and buy some new clothes, so you feel good about yourself'. I took her literally and bought a cute little pinafore dress.

We have just come back from our first holiday post-treatment, a week in Nice in the South of France. It was a perfect way to relax after this last year, and we really enjoyed the early Spring sunshine on our skin as we explored the Riviera. We bought a book called 'Walk and Eat near Nice' and we did a few of the walks in it, taking a bus to quaint nearby villages and walking through the mountains back towards Nice, admiring the spectacular views of the coast and exploring ancient forts and medieval towns. We also ate some fabulous food and I caught up on sleep. Heavenly!

 

I also thought I'd give you an update on my chemo blanket project. Some of you may remember that I decided to teach myself how to crochet at the beginning of my chemotherapy. This was because I wanted to do something to pass the time while recovering from each round of chemo, that wasn't too taxing on the brain. I bought a copy of 'The Happy Hooker' and taught myself some different techniques. I started with some simple granny squares and graduated to some more complicated ones, with multiple colours. Then I eventually stitched them all together. It's only a small blanket which I've draped over the back of the sofa, but I'm really proud of it, and can see my progression in it. I'm now moving onto another project for a friend, so watch this space!

Finding my new normal

Hi folks. I thought I'd give you a little update as to how I'm getting along now that active treatment has finished. It's been over a month now since I had my final radiotherapy session, and 2018 has started well. I'm feeling stronger and healthier every day, my hair is growing and I'm adjusting to life post-cancer treatment. Of course, treatment isn't exactly over, but what I'm doing now is trying to prevent the cancer from returning, as there's no evidence of any left in my body.

My hair is growing nicely and I've started getting it cut in a unisex hair salon called Barber Streisand, to avoid the extortionate 'women's' haircut prices. My main aim is just to let it grow and try to keep it tame-ish while it does. It's darker than my old hair and has a definite kink in it, but we'll see what happens as it grows out. My eyebrows and eyelashes are also growing back, although very slowly, and I put mascara on for the first time in months the other day! It's the little things...

I've put on 10kg of weight since I started treatment in April 2017 (that's about a stone and a half in old money). It's gone on evenly all over my body, so while lots of people are graciously saying 'you can't tell', I'm currently unable to fit into most of my clothes and it's starting to really bug me. I'm doing as much exercise as my body will allow me to, and I'm eating very healthily, but it's proving difficult to shift. So far this year (3 weeks in) I've lost only 1kg, so still 9kg to go! Urgh.

On Friday I saw my oncologist again. My appointments with the oncology team are now getting less frequent. While during chemo I saw them every 3 weeks, now I see them every 3 months, and soon that will change to every 6 months, and finally only once a year. They're phasing me out! We had a great chat and she's given me the green light to start swimming again, so hopefully that will help me with shifting my chemo weight. Although chemo has finished, I'm still having Herceptin injections every three weeks (this is the monoclonal antibody I started having in June and explained about here) so I need to have heart scans every 3 months to check that it's not adversely affecting my heart. Last week's heart test results show that my heart is actually improving, which is great news! (Not that surprising as I've finished chemo and exercising much more these days.)

I've also started taking Tamoxifen, a white tablet that I have to take every morning for the next 10 years. And in 2 weeks I will start having Zoladex injections once a month. These are both hormone therapies. My cancer was fed by oestrogen, so the injections will shut down my ovaries to prevent them from producing oestrogen, and the Tamoxifen works by preventing any oestrogen from latching onto and feeding potential cancer cells. These drugs will send me immediately into an early menopause, and I'll keep having the Zoladex until my oncologist is happy that my body is post-menopausal naturally (so potentially until I'm 50 or so!). A medically-induced menopause is usually more severe than a natural one, which takes place gradually over many years, so I've been referred to the Bart's menopause clinic, where I will learn some techniques for dealing with the side effects. One of the main side effects is that my bone density will reduce, leaving me at greater risk of fractures and osteoporosis. To combat this I will start having bisphosphonate infusions (Zometa) every 6 months for 5 years, which slow down the rate of bone thinning, and also help prevent the cancer from returning. The other recommendation is that I do lots of 'weight-bearing' exercise, so I am making sure I get in at least 10,000 steps a day (walking is good weight-bearing exercise) and I have a stretchy band that I use to do a series of exercises every day with my arms to keep my bones healthy in my upper body. Although I love cycling and swimming, neither of these are weight-bearing so I need to make sure I mix it up.

My scars are both healing nicely and I have regained full movement in my right arm. I do have stiffness still, so I'm continuing with the physio exercises until that goes away, but I'm really pleased with how that's going. I also have some numbness in my armpit and just below my shoulder on the outer side of my arm, and unfortunately that's permanent nerve damage. It's a bit strange but I'm sure I'll get used to it. Weirdly, I've stopped sweating in my underarm completely, and the other women in my support groups tell me this is common. Bonus!

My breast looks pretty much the same as before, and the scar is almost imperceptible. When I self-examine, however, there is a big lumpy patch right where I found the original lump, and this is scar tissue. I will have to get used to how my breasts feel again and continue to self-examine regularly (as should you!).

My fingernails and toenails didn't quite survive after chemo. I lost a few of my toenails completely, and my fingernails started to crack and peel about half way down each nail. I'm now keeping them extremely short until the new nails grow, which is kind of annoying (I don't think I realised how much I used my fingernails for everyday things before!). I'm still getting quite bad bone pain semi-regularly, but this is a side effect of Herceptin, which I will finish in June this year.

I also found out that I am ineligible for the Add-Aspirin trial which I thought I would be on, so that won't be going ahead. I am, however, still part of the 100,000 Genome project, and I've been asked to take part in a focus group at St Bart's in February, to help them improve care for younger women diagnosed with breast cancer.

There's a lot of crap on the internet about cancer prevention (turmeric, anyone?) and in actual fact there's only one 'natural remedy' that studies prove genuinely reduces the chances of the cancer coming back, and that's exercise. So now that I have a little more strength and energy, I'm slowly reintroducing exercise back into my daily routine. I want my convalescence to be slow and effective, not rushed and ineffective, so I'm trying to be gentle with myself and not push myself too hard. But I've got a FitBit and I'm getting a little obsessed with the metrics. Firstly there's the step counter, and I'm aiming for a minimum of 10,000 steps a day. I've aced it almost every day so far this year, with my best day being 29,665 steps, and my worst day only showing 8,335 because I cycled everywhere that day. My average is around 15,000. Then there's the 'active minutes' metric, ie how many minutes per day that you're doing activity that gets your heart rate up. I'm averaging 100 minutes a day this year, which I think is pretty good going. I also want to avoid reverting back to Past Carmel's ridiculously packed social schedule, as I've realised the benefits of downtime and relaxation. So I'm not over-committing, and I'm being selective about what social activities I say yes to. Tanai bought me a place on a meditation course as a Christmas present, and I went last weekend. I've never done non-guided meditation before and it was quite amazing. I'm now meditating solo every day, 20 minutes in the morning and 20 minutes in the early evening. It's possibly too soon to ascertain the benefits but I definitely feel calmer and less irritable. And of course I'm still doing yoga with the magnificent Adriene. I don't quite feel strong enough to go out to a full yoga class yet, but I've found a class in Islington which is a short walk away from our flat, which is specifically for people who have had cancer, so I'm going to try that as soon as I feel up to it.

So there we are, I'm now project managing my recovery! I'll post here whenever anything significant occurs, but not with as much regularity as before. I may also include some musings and ponderings about my mental health, cancer in general, and what I've learned from this experience. But I'm keen to try to get away from the dominance cancer has had over my life for the last year, and have other things to think and talk about. Look forward to talking with you online and IRL about that other stuff.

Surgery results, Carmel 1: Cancer 0.

My surgery was 10 days ago, and today I had to go back into hospital to get my pathology results. These are the results from the lab where they have analysed the two lymph nodes they removed from my armpit, and the remainder of the lump they removed. And happily, it's all good news. There was no cancer in my lymph nodes, which means I don't need to have any further surgery, and the remaining lump was also clear, which means that the chemo had properly killed all the cancer in my breast. I'm so relieved and happy, this is a huge milestone on my treatment journey.

 

Sticking two fingers up at cancer!

My surgeon, Miss L___, removed my dressings, which I've had on since surgery, so it was the first time I've actually seen both of the wounds. They look incredible, she's done a fabulous job. My armpit wound is a small nick about 2cm long, under the armpit, barely noticeable. She very cleverly made the incision for the lump by cutting a crescent shape around my nipple, and then tunnelling in to get the lump. This means I'll have no visible scar in my cleavage, and once it heals, it will be practically invisible. There is a lot of bruising and swelling at the moment, but I already love my post-surgery body, and when I look at myself in the mirror, I see a strong, beautiful woman who has been through so much over the past few months, and I'm so proud of her for getting this far.

Today we also discussed the next steps, as my treatment isn't over yet! In a couple of weeks I will get measured up for radiotherapy: they'll do a CT scan and I will get two little tattoos on my chest so that they can properly line up the lasers, and then, as long as my wounds heal well, I should start radiotherapy about a week after that. I will have 19 sessions in total, every weekday for almost a month, and then I will be finished with what they call 'active treatment'. The radiotherapy is really belts and braces, to mop up any stray cancer cells and reduce the risk of the cancer coming back. The side effects are not as severe as chemotherapy, but most people say that the significant one is fatigue, which can last up to a couple of months after radiotherapy is finished. I'm preparing myself for another few weeks of having a minimal social life. Luckily the nights are drawing in and the temperature is getting wintry, so I'll just curl up at home with some good books, podcasts, movies and hearty food.

I have been given some exercises, which I'm diligently doing three times a day, to regain as much movement as possible in my right arm. At the moment it's quite difficult to lift my arm up over my head, and I'm still avoiding lifting anything heavy, but I'm doing well. Tanai took a week off work after my surgery and we mooched about at home, chilling out and resting. It's actually been quite lovely to rest and recuperate properly after surgery; I realised that I didn't properly rest through chemo and probably pushed myself a little too hard. I go back to work next Thursday so I'm making the most of my final rest days. 

My daily exercises

So, all being well, I should be done with active treatment by the end of the year. I'm looking forward to bidding 2017 farewell, to be honest, and we already have some fun things planned for 2018. I will continue having Herceptin injections every 3 weeks until July next year, and I have just received my first prescription of Tamoxifen, the tablet I'll be on for the next 10 years. I've decided I'm not going to start taking it until after radiotherapy, as I am not keen on having both side effects at once. Today the clinical oncologist also talked about giving me Zoladex injections every month for at least the next two years. This is because I'm pre-menopausal, and my cancer is fed by oestrogen. What do your ovaries do? Produce oestrogen! So Zoladex suppresses your ovaries to reduce the risk of the cancer returning. And along with that there is another injection they want to give me every 6 months to prevent the cancer returning in my bones. I've decided to take some time to research these other options before signing up, as I've heard they can also have some pretty nasty side effects. I want to be certain that their efficacy and the benefits I will receive from them is worth the potential impact on my quality of life. So more on here when I know what I've decided! Until then, I shall continue to be pretty happy with today's news and celebrate this weekend with friends at the Lewes bonfire.

Venturing out: art class

Now that I have finished chemotherapy, each day I can feel my body grow stronger and it's so wonderful to know that I won't have to take on any more poison just when I'm starting to feel human again. I feel as though I'm finally able to start healing, even though there is still more treatment to come. My surgery will be on 24 October, so I'm concentrating on trying to get as strong and well as I can before then, to give myself the best possible chance to recover from surgery quickly. But today's post is less about what's going on with my body, which is very well documented here, but more about what's been going on with my mind. While my body is healing well now, I've been emotionally quite vulnerable this last week, and it manifested itself in many ways when I went to my first art class last Wednesday. I'd like to share it with you here, as my mental health is also an important part of this journey, and as so much of this is new to me, I want to document my experience with honesty and openness.

I decided to enrol on the art class partly because I wanted something gentle and creative to do while recovering from treatment. I've spent 6 months doing very little other than work and having treatment, but I know that my energy levels won't suddenly bounce back to how they were before. I loved painting when I was at school, and I've always wanted to try it again. Plus my friend Jana has been attending this class for a couple of years, and she has been producing some wonderful work, so in a way it was a 'tried and tested' class. So I went along last Wednesday, excited to be doing something new and wondering what I would learn. The class is made up of about 8 people (although I think more will join us in week 2), many of whom have been attending this particular class for many years. Some of them have even sold paintings! The teacher is an artist herself and for week 1 she led us in a collage exercise so that we could create compositions that we will eventually paint. I had never done anything like this before, and I found it quite interesting, as ideas generation has always been the area where I fall down. I think this is why I have so often copied paintings in the past, but of course original work is what we should be striving for. 

I think I had failed to appreciate the significance of this class in so many ways relating to my cancer. This was the first time I had done something new, and met new people, since my diagnosis back in February. Before diagnosis I would not have thought twice about putting myself in a situation where I was meeting new people. I am generally quite confident in social situations and love meeting new people, but on Wednesday I felt vulnerable and unsure of myself, and I leaned on my friend Jana who was also in the class, almost clinging closely to her. I'm sure they are a lovely bunch of people, but I felt awkward and self-conscious about how I came across. The cognitive impairment brought about by diagnosis (sometimes called 'chemo brain') is very real, and I still struggle to be as fast and articulate as I used to be. So when the teacher asked me conversationally what artists I liked, my mind went blank and I could not think of any! I madly searched the recesses of my mind but struggled to know how to answer. I then felt so self-conscious about sounding stupid and disinterested (I'm in an art class for goodness' sake! And I can't name any artists I like!) which made the whole thing even worse. 

The other challenge I faced was whether or not to actually tell them I have cancer. While I've been open and candid with the people in my life over the last few months, these were people I was meeting for the first time, with whom I was going to develop a relationship over the next 11 weeks. I was reluctant to be 'the cancer girl' -- I'm very conscious of not wanting to be defined by this. Therefore I decided not to tell them, and simply present myself on face value. But then of course my challenge was that 'face value' is a very depleted, fatigued girl. By 9.30pm I was exhausted, and running out of steam. I almost started to shut down! But I'm much younger than most of the people in the class, so how do I explain that it's way past my usual bedtime and I have very limited energy these days due to treatment? To compound this, that day was the first day I ventured out of the house without a headscarf on. In retrospect I feel that it was way too early (I've worn the scarves ever since). Although I'm excited about finally growing some new hair, it really is still very short, and I garnered many more stares than I ever have with the scarves. So I suppose they also had no explanation for my appearance either.

Perhaps I'm making too much of it, but all I know is that the evening had a significant impact on me emotionally. I got home and cried and cried. So many thoughts were swimming around in my head. I will have to re-learn how to socialise. I have to learn how to navigate meeting new people and whether (or how) I reveal my diagnosis. I physically can't do what I used to be able to do. I have to learn how to 'be me' when I have changed significantly. I'm sure that over time it will get easier but it was quite an unexpected shock to be feeling these feelings from something as unassuming as an art class. I also then grappled with whether or not to return to the class, as I am worried that if I don't, I may never re-learn how to navigate the world, and that, a bit like falling off a horse, I really ought to see it through. 

I suppose the main lesson is that which I've been conscious of all along. My mental health is just as important as my physical health, and I need to practice just as much self-care in nurturing my emotional resilience as I do resting and looking after my body. I will grow stronger both physically and mentally over the coming weeks and months, and I will need to also make adjustments in my life, both physically and mentally. Once again, I need to ensure I'm not too hard on myself, and I give myself time to find my 'new normal'. So I shall go back to class this week, and try to be as strong as possible, and it will get easier each week. And who knows, I may even paint something awesome!

My new baby fluffy hair

A biomorphic collage

Stitching your parachute

My wonderful friend Dom accompanied me to my fourth round of chemo last month and while we were having a 5-hour natter about various things (we're both very good at talking!) he reminded me of the concept of 'stitching your parachute before you need it'. He couldn't remember if it was my advice in the first place or our mutual friend Caitlin's, but either way, it rang a bell for me and it's something I've been very aware of as I've researched the concept of resilience in light of my diagnosis. I suppose in very simple terms it refers to taking time to do the work of building your own personal and emotional resilience before you hit a crisis point. If you stitch up any holes in your parachute when you're happy and resting on the ground, it's ready for whenever you need it. If you leave it until you're in the tumbling aeroplane, it's too late, and it won't be adequate to save you.

As part of my own work looking after my mental health over the last few months, I've been pleased to discover that I'm already quite good at regularly stitching my parachute, and although I may not have had the vocabulary to describe it, self-care has always been something I've practiced. Whether it's something as simple as taking a Sunday evening bath, dropping some essential oils into the water and popping the Wittertainment podcast playing on my phone while I soak, or something as concerted as signing up to the Headspace app and resolving to practice 20 minutes of mindfulness each day, I've always taken time out for myself. I find walking incredibly restorative for my mental health, and would often walk the hour to and from work, pacing briskly and listening to a podcast or audio book, enjoying the changing seasons over the weeks. Cooking is another way I wind down and I usually cook my meals from scratch, enjoying the time it takes to prepare food, the creativity involved and the delicious rewards at the end. I often take myself round museums and galleries on my own, and enjoy 'me time' amongst the art or stories from other times and peoples. All these things are little ways over the years I've practiced self-care, taken some time for myself and shored up my mental health reserves.

Being resilient is not about being hard and impervious to the knocks and stresses life places upon you. It's about being flexible and able to cope in the face of adversity, to draw on internal strengths and those of the networks you've built around you. It means that when you suffer stress or trauma, you have the ability to adapt, to bend and stretch in the face of it, and to somewhat 'bounce back'. Importantly, however, it's not about being hard or unfeeling, or trying not to be affected by life's events; it's more about allowing the stress or trauma to take you in an unexpected new direction and allowing yourself to go with it, and not try to force your life, or yourself, to be a certain way.

With wonderful serendipity, just after my diagnosis my employer teamed up with the mental health charity, Mind, and decided to roll out some Emotional Resilience training for all staff in the organisation. We had an interesting presentation and were given time to think about what was in our 'resilience toolbox'. We discussed the pillars of resilience, and how we can cultivate emotional resilience in our lives and more effectively manage stress. There were some really useful tips in the presentation and it definitely made me think about this whole thing in a different way. Interestingly, it advocated writing as a way to step back from negative thoughts and get some distance. The presentation summarised the five ways to wellbeing thus:

Give: your time, your words, your presence
Keep learning: embrace new experiences, see opportunities, surprise yourself
Be active: do what you can, enjoy what you do, move your mood
Connect: talk and listen, be there, feel connected
Take notice: remember the simple things that give you joy

I think these are all small things that can contribute to positive mental health, and a stock of resilience for when life gets touch. They are great ways of stitching up one's parachute in preparation.

Another thing I've started to read about is post-traumatic growth, and positive psychology. These are theories about things you can put in place to ensure you grow from adversity, rather than being beaten down by it and suffering post-traumatic stress disorder. The theories acknowledge that post-traumatic stress is inevitable, following something as traumatic as a cancer diagnosis, but that there are measures we can put in place to deal with this stress, to go with it, and to emerge at the end with increased strength, wellbeing, and a practical pathway to positive change. It all sounds rather pop-psych but I do think there's some truth in it all, and I'm interested in reading more. One book I read summarised five dimensions of post-traumatic growth:

Recognise and use personal strengths
Nurture closer relationships
Enjoy a greater appreciation of life
Search out and embrace new possibilities
Deepen spiritual development

Again, all great advice, which according to Aristotle, can lead to a form of happiness called Eudaimonic wellbeing, which is particularly flourishing and fulfilled. Well, we'll see about that, at this stage I'm just grateful to be engaging in these thoughts, to continue to function at work and at home, and to cultivate hope and optimism while I'm going through this. With chemo side-effects robbing me of many of my usual forms of self-care (no energy to walk, changed tastebuds affecting my enjoyment of food, lack of sleep etc) it's taking most of my strength just to get through each day. I'll save the real rebuilding work until I'm done with active treatment.

A running theme through a lot of the things I've been reading around this topic is the importance of building strong networks around you. I've always had a huge capacity for friendship and have cultivated relationships with people all over the world throughout the years. This is undoubtedly a huge source of strength for me at the moment, as I receive messages, gifts, thoughtful cards and offers of assistance from many of you, my global team of cheerleaders as I navigate this particularly tricky time. Even when I have a wobble, you've got my back, so thanks everyone. You're the best tool in my resilience toolkit. (Naw!)