Discharged from oncology; prepping for surgery

Today was a bittersweet day. I was officially discharged from my oncology team and I've moved into the 'Open Access Follow Up' programme. This means that I have no more oncology appointments scheduled: I will just have annual MRIs and mammograms, and I have a hotline number to call if I suspect anything is wrong, and I will be seen immediately. They have done studies and found this is a much more effective follow-up system than annual appointments. So effectively this marks the end of my treatment and I'm free to go into the big wide world as a cancer-free person!

Discharged! In the Bart's quad

However, it's not quite that simple. For one thing, I still have plenty of medical appointments in the diary. There's my monthly Zoladex injection to suppress my ovaries. There's the Zometa every 6 months to help my bones. I'm still visiting the menopause clinic every 4 months to check up on how I'm going with that. And I'm still seeing the lymphodema clinic about my swollen right arm and hand.

But the biggest hurdles I have in front of me will be two lots of surgery next year, and preparation for these has progressed quite a bit over the last few weeks. As I carry the BRCA1 gene mutation (I explained more about this here) I am going to have an oophorectomy on Thursday 28 February, at the Royal London Hospital, where a team of surgeons will remove my ovaries and fallopian tubes. I have had some pre-op scans (apparently my ovaries are looking very fine and healthy, woop woop!) and some other tests. I have also been seeing a biokineticist to prepare me for the operation and ensure I am as strong as possible going into it, to enable me to have the best possible chance of a good and speedy recovery. I am doing a series of exercises every day to help strengthen my core and my back.

And on Thursday 19 September I will have a double mastectomy, removing both my breasts completely, as a preventative measure, because my chances of getting another breast cancer with this genetic mutation are 80%. This will be at St Bart's. I met my surgeon, Miss L____, on Tuesday this week (the same surgeon who originally told me I had breast cancer, and who carried out my lumpectomy in October last year), and we discussed a few things and set the date. She is as humourless as ever, and despite me indicating that I did not want reconstruction, proceeded to talk me through my reconstruction options. There is an assumption in the medical world that women, especially young women like me, will want their breasts reconstructed, and it's really hard to convince them that this is not necessarily the case. She even used the expression 'to make you look like normal'. As you can imagine, I had to bite my tongue! So I let her talk me through the options, and all the potential problems that can occur with each one. Firstly there is the silicone implant option, and she let Tanai and I hold a teardrop silicone implant to feel how 'realistic' it felt. As soon as I touched it I knew that I didn't want something like that inside my body. And then when she outlined the potential complications (it can rotate and look weird, it can cause cancer, it can rupture, it can infect the tissue around it, it requires regular maintenance including follow-up surgery etc) I knew even more firmly.

Next she made me take my clothes off and squidged my belly, before declaring that I didn't have enough belly fat for her to fashion two breasts 'at my current bra size'. I took that as a compliment, I have been losing my chemo weight quite efficiently! So then she looked at my back muscles, and explained how they could preserve the skin from my breasts, and then refashion breasts from belly fat or back muscle, and give me new breasts with the old skin and nipples. Again, I shuddered at the thought of this hugely invasive surgery, with its prolonged recovery time, and the potential complications including severely restricted mobility in my arms and shoulders (no more yoga, cycling, swimming!). After hearing all my options, I said again that I'd like to remain flat, and that I've even joined a facebook group called 'Flat Friends' where there are all sorts of amazing women who have had single or double mastectomies and have chosen to remain flat, and I am receiving lots of advice and support from them.

So in order to proceed I have to jump through a few more hoops. I have to discuss my options once again with the Breast Care Nurse team. They have to refer me to a psychologist and only after they have cleared me will they agree to carry out the surgery without reconstruction. What a rigmarole! But I will proceed and when I see the surgeon again in May I will be more emphatic about my decision. We have chosen September as my surgery date because my dissertation is due in August so I thought I'd get that out of the way before having my op.

I will have to take a few weeks off work after each operation, to recover, and I'm going to make sure that I properly recover this time, instead of going back to work too early and making myself ill, like I did after my first breast surgery. All offers of home cooked food and visitors while I'm convalescing are very welcome.

Just before I left the appointment I shook Miss L___'s hand and apologised to her that I was going to ruin her handiwork. She did such a fantastic job of my first surgery and the scar is so neat, but now we're going to be getting rid of it all! I think I did finally raise a glimmer of a smile; she may have even laughed a little. I call that a win!

But with all this ahead of me, you can see why I wasn't so jubilant today at receiving my discharge notice. This year has been a wonderful year of recuperation, rest, holidays, recovery and building up my physical and mental strength. 2019 is going to be another challenging year of treatment, plus the intensity of finishing my masters, but I'm feeling very positive about my surgery decisions, and I'm looking forward to being done with it all, and able to just get on with my life. And to develop a new style once I'm a flattie!

Genetics

Another significant update from me. Some of you may remember that I hassled my oncology team to refer me for a genetics test last year while I was going through chemo. A small percentage of breast cancer cases are caused by a genetic mutation, called BRCA1 or BRCA2 (which stands for 'BReast CAncer'). This mutation also causes ovarian cancer and my dad's sister, Trish, died of ovarian cancer in her late-40s which planted the seed of suspicion in my mind when I first heard about these genes. My oncologist refused to refer me, as I didn't quite meet the NICE (National Institute for Clinical Excellence) guidelines for referral. This is because my cancer was triple positive, and genetic cancers are more likely to be triple negative. Also I only had one relative who had a breast or ovarian cancer diagnosis, and NICE wants you to have 2 or more. But then I heard from a woman in one of my support groups that the Royal Marsden hospital routinely BRCA tests everyone who is diagnosed with breast cancer when they are under 40 years old. (This is because the younger you are, the more likely it is that genetics have caused your cancer diagnosis rather than 'lifestyle factors', as you haven't been alive for as long!) So I pushed more firmly when I had a registrar see me instead of my regular oncologist, and I got my referral. It took ages, but in January I had my blood test done and in May I found out that I carry the BRCA1 gene mutation.

I've been keeping it quiet for a while because it was such significant information, I wanted to process it, and decide what my next steps are. I was tested at the genetics department at the Great Ormond Street Hospital, and as part of the testing they provide you with genetic counselling, to help you make informed decisions and understand the implications of carrying the mutation. I have also read a lot of research so that I feel I have all the information to hand.

Firstly, I've decided to have an oophorectomy. This is surgery to remove the ovaries and fallopian tubes, to prevent ovarian cancer. With the gene mutation, I have a 40-60% chance of getting ovarian cancer. Ovarian cancer is very hard to detect, and there is no screening available, so the only way of reducing this risk is to have them removed. I don't want children, so there is not that consideration for me, so I've proceeded with initiating this surgery. I saw the gynae-oncologist last month, and I'm seeing her again in November, but I'm on the list to have this as soon as they find me a slot. It's elective surgery, so there's a bit of a waiting list, but it could be sometime in the new year. I will post more here once I have some more information.

Next up, I've decided to have a double mastectomy. This is surgery to remove both my breasts entirely. Because I carry the BRCA1 mutation, I have a 70-90% chance of getting a new primary diagnosis of breast cancer. This is not a recurrence of my recent cancer (my recurrence chance is quite low due to the preventative measures I took and the drugs I'm on now), but a new initial diagnosis. As a BRCA1 gene carrier, the NHS will screen me by giving me an MRI every year until I am 50, then a mammogram every year after that, but the screening only detects a cancer once it has started to grow, which means I would have to go through treatment again if this happened. The only way to reduce the chance of getting a new breast cancer to 2% is to remove my breasts. And I really do not want to go through chemo again if I can help it! I'm meeting my original breast surgeon in November to talk about my options and timings for this. I'm keen to have my oophorectomy first and then deal with my breasts. Plus I have the small matter of finishing my masters, which I started again last week, so I'd quite like to time these operations around that if possible. Again, I'll post more here when I know what's what.

It's not great news, but I'm glad that I know. Imagine if I had not had the test! Knowledge is power, so I shall use this to make the right decision. In a way I'm kind of relieved, as it has confirmed to me that the cancer was nothing I caused myself, nor was it something I could have prevented. The hardest part about all of this is that my sisters and paternal cousins now have to go and take the test. They all have a 50% chance of carrying the gene mutation. It's easy for me, a 39-year-old woman with a life partner and no desire for children, to make decisions about having ovaries and breasts removed, but it's going to be harder for them to make decisions, as younger single women, if they carry the gene.

At first I was quite upset, as I felt as though I was really turning a corner and putting this whole episode behind me, and this was another spanner in the works. But now I'm resigned to it, and dealing with the practicalities of what it entails. Cancer really is the gift that keeps on giving! And having these surgeries will really make me feel as though I've done everything in my power to stop it from coming back, and give myself the best possible chance to live a long and happy life.

In other news, my hair is growing! Here's a comparison of now (left) and this time last year (right):

I had my 4 counselling sessions at the hospital, and I'm finished with that now. I did actually find them quite useful and have been implementing some of the things we discussed. I'm still getting fitter and losing my cancer weight (although my hip pain is preventing me from exercising as much as I would like). My toenails have all grown back (one of them ingrown, ouch!). I'm pretty much able to follow my uni readings and lectures, so I think my cognitive fog has lifted, which is great news for my studies. And I attended a 'sleep clinic' on Thursday this week, to try to help me with my sleeping problems. I learned some really useful tips, but they didn't stop me from waking up at 3.30am this morning and not getting back to sleep! Oh well, small steps.

I'm taking part in a few more studies, none which will help me directly, but all of which will help contribute to the bank of medical knowledge about cancer, and hopefully help someone in the future. Some of them are questionnaires, and most also require blood samples and regular updates. One of them is to test a new possible screening technique for ovarian cancer in BRCA mutation carriers, so I'll contribute to that until I have my ovaries removed. It feels good to be able to contribute to medical science and the furthering of measures to tackle cancer. The thought of preventing people in future from having to go through what I've been through is very motivating.

My friend Ben texted me to say he things BRCA stands for BRave CArmel, and I'll take that!

Test results and other stuff

Following my last post about Scanxiety, you'll be pleased to know that my test results came back all clear. I had a little cry when my Oncologist told us, as I really had feared the worst. I feel as though I've been given a second chance, and I want to make sure I make it worth it!

Yesterday I had my first infusion of Zometa, or Zolodronic Acid. I have to have this every 6 months for 3 years. It helps protect my bones from the effects of sudden premature menapause that my other medication is plunging me into, and it also reduces the chance of the cancer coming back by a further 2%. It's administered by IV, and this was the first canula I'd had since my final chemo last September. I thought my veins would have recovered, but no! It took 4 goes to find a vein, and it hurt so much. But now I've had it done, I don't have to have it again until January. The side effects are apparently 3-4 days of 'flu-like symptoms', which I dismissed and headed into work today on my bike. But then in the afternoon it hit me like a bus. The non-air-conditioned office and intense heat didn't help! (It was 34 degrees at my desk today!) But now I really feel whacked out, my bones are aching, my head is all clogged up and all I want to do is sleep. I nearly fell asleep on my cycle home! Eek. Fingers crossed I will feel better soon. I also have calcium and vitamin D tablets on prescription: 2 a day. Thank you NHS for being totes amazeballs.

Other things I've been dealing with lately, include going to the lymphedoema clinic, and being fitted for a lovely sleeve and glove to help combat my lymphedoema (swelling of the right arm and hand due to having fewer lymph nodes to drain my lumph fluid round my body). Unfortunately heat is a trigger so this weather is not helping.

Sexy

I've also seen a physio to find out why my right hip is so sore. He's given me some exercises to do and I'm going back next week. Fingers crossed we can find out what's wrong and sort it, as I want to be able to go hiking and walking again, as well as not wake up in the middle of the night in pain!

Last week I had my final Herceptin, yay! A year's worth done and dusted. That's fewer times I'll have to go into Bart's for injections.

I've also been referred by my GP to a sleep clinic, but that's not until September, to try to help me sleep better (I'm sleeping so badly at the moment). And I've also been doing some counselling with the psycho-oncology services at Bart's, which is really helping.

So back on track! And we head off on our big, relaxing holiday on 8 August: 3 weeks in Canada. Really looking forward to relaxing and seeing some of that beautiful country, as well as catching up with our relatives there.

Scanxiety

Throughout my treatment last year, many women in my support groups would talk about ‘scanxiety’, which is the period between having scans (or being referred for scans) and being told the outcome, whether it’s good or bad. During this window of the unknown, your mind can wander down all the possible pathways, and in many ways the ‘not knowing’ is worse than bad news. I definitely felt this to some extent in the first five weeks after my initial diagnosis, before I found out my full prognosis and had a treatment plan. But generally, I’ve not experienced this over the past 18 months of my treatment. Instead, I would go for my scan, and await the outcome, knowing full well that I could not influence it with any amount of worry so why worry until you get the results, right?

Well this last couple of weeks I’ve come to know the true feeling of scanxiety and it’s not much fun. Basically, I went to my GP to talk about this hip pain I’ve been experiencing lately. I’ve always had problems with my hip and back, and I just thought that it’s being exacerbated by the fact that I’ve increased the amount of exercise I’ve been doing lately, to shift my chemo weight. But I’ve been experiencing acute pain in my right hip, and it’s been getting worse. I asked her to refer me to a physio, which she did, but at the same time she referred me for an X-Ray, just to check there wasn’t anything structurally wrong with my hip. A few days later she called me, and said that my bones look fine, but they spotted a ‘subtle lucency’ (shadow) on my X-Ray behind the bone which concerns them, so they need me to have some more scans so we can find out what it is. So this Monday I had a full body bone scan, and on Friday I will have an MRI. Right now I don’t know what the outcomes of these scans will be, but because I have spent the last 18 months reading and researching about cancer, and hanging out in online support groups with all kinds of women at various stages of the disease, I have a pretty good idea of what the different possibilities are. And instead of keeping my cool, awaiting the outcomes, my mind is wandering down the various paths in a way that is keeping me awake at night.

I want to be open and honest about how hard this period is for me, and not sugar coat it. I know that I’m looking much healthier than I did when I was going through chemo – I’m gaining hair and losing weight, my skin is much better, my nails have grown back and I have much more energy. But right now is the hardest time in many ways, because I’m coming to terms with what this whole experience means for the rest of my life. No, I haven’t ‘kicked cancer’s arse’, it is living with me, and will live with me forever. I have to re-learn how to be in the world and navigate everything that comes with it. I am trying to be positive and optimistic, but in reality I have to live with the sword of Damocles over my head. At any time the cancer could return. And I have no watertight way of preventing it from doing so. My challenge is to embrace my chance to live, without having any level of certainty about my long-term health. And this is hard. Exhausting, actually. But what’s even more exhausting is navigating the expectations of others that I should ‘move on’, and ‘put the cancer behind me’. As if it’s that easy, surely I can just forget about it and get on with my life. But this is my life, I can never go back to the person I was before my diagnosis, and I want to give myself the space and the permission to feel the emotions I’m feeling. I don’t want to have to cover up my pain and frustration just to make other people feel better.

Over the last few days I have had thoughts about my own death which I have not had at all for the last 18 months. Stupid things, like waking up at 4am and mentally writing a practical checklist of the things I need to send Tanai, like my Australian superannuation details and my social media passwords. Being choosy about what books I pick up because I probably won’t have enough time to read all the books on my ‘to read’ list. Composing speeches to my co-workers. Feeling bad for leaving Tanai before we have the chance to grow old together. Looking at old people in the street or on the tube and thinking how fucking unfair it is that some people get to grow old and other people don’t. I remember the moment a few years ago when I realised I was becoming a proper adult, when I made a significant purchase (I can’t remember what it was, a sofa or a suitcase or something) and I though ‘I wonder if that’s the last one of those I’ll ever buy’. Well now I’m thinking that about vitamins. Is this the last packet of cod liver oil tablets I’ll ever buy, because I’ll run out of time before they run out? And I don’t want to be thinking these thoughts, they’re just coming into my head, unbidden, and taking over. I thought that maybe by writing this down I would feel a little better, like I’d shared my problem, and relinquished some of the burden. And I do, a little, I think. Thank you.

So there you have it, no resolve, just scanxiety. I’ll fill you in when I have my results.

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.