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 (and some cool research projects)

Yesterday was my surgery day, and it seems to have all gone well. Here's a little summary of the day. One of the things I was most dreading was having to fast all day before surgery, so we cooked up a delicious meal the night before. I've been getting creative with the contents of our weekly veg box, and this week we got some celeriac, so made a celeriac hash, with ham hock, mustard, gruyere and duck eggs. Absolutely delicious! I then permitted myself two pints of water at 5.50am on the morning of surgery, and that was it. We had to be at the Percival Potts ward at 7am, situated in the attic of one of the old St Bart's buildings. With pointed windows and a sloping roof, it felt more like a school dorm than a hospital wing! I had to give an extra urine sample so they could do a pregnancy test (hilarious!) and then was ushered into my own room, which was ridiculously overheated and the windows were painted shut. 

Then followed a stream of various people wanting various things. Firstly, a nurse to issue sexy compression socks for me to wear during surgery (to avoid blood clots), take my blood pressure, check allergies etc. Next up was a woman from the clinical trials unit at Queen Mary University, with detail of two programmes they were asking me to participate in. Regular readers will know of my desire to get involved in clinical trials and 'give back' to medical science and potentially help cancer patients in the future, so I was very interested. The first research programme is a tissue bank, and they are requesting that I agree to a piece of the tissue from my cancer being stored in this bank in order that they can conduct research on it, compare it with other cancer tissue, study its molecules and potentially see how it could respond to different drugs. Of course I complied and signed all the forms, totally happy to help out! The second programme is a huge NHS initiative run by Genomics England (a company owned by the UK Department of Health) and is called The 100,000 Genomes Project and is really pretty cool. This is a huge country-wide project and will definitely change the future of cancer treatment, so I was very keen to be involved. It will involve my whole genome being sequenced (Tanai was a bit jealous!) and it differs from usual research projects in that the data is not anonymised. They wanted to collect a blood sample and a sample of my cancer, and will use this to shape the personalised medicine of the future. In the not too distant future, people will not be routinely given the same old treatment as everyone else. No, their DNA will be sequenced and they will be given the appropriate treatment for their very specific needs. In order to be able to gather as much data as possible for this, they need to be able to access my entire medical history, and will continue to access it for the rest of my life, and beyond. It will be analysed by several global teams and compared with the 99,000 other genomes they choose to sequence. They will also contact me if any of the research on my sample unearths anything of interest or relevance to me. Of course I signed up straight away, and it feels great to be able to contribute to such a groundbreaking project.

My next visitor was the anaesthetist, a tall, skinny guy with an infectiously calm manner. He asked me various questions and explained what he would be doing later to get me ready for surgery. Not only would he administer my anaesthetic, but would also have to place a breathing tube down my throat in order for me to breathe during surgery. And after he left, my surgeon, Miss L___, and a registrar came to visit me. They asked me to explain in my own words what I thought was going to happen. They seemed content with my response and she then rather unceremoniously scribbled all over my chest just below my collarbone to remind her what to do later on, I suppose, so she didn't mix me up with any of the three other women she was operating on that day. We also discussed my allergy to the various dressings they use at the hospital, and sticking plasters. She said she would use a milder dressing, but we shall see if it works.

R = Right breast, WGWLE = Wire Guided Wide Local Excision, SNB = Sentinel Node Biopsy

Sexy compression socks

My first task for the day was to pop over to the West Wing and have a wire inserted into my breast so that the surgeon could later locate the cancer (I explained a bit about this here). When the ultrasound technician tried to find the remaining cancer she had trouble: apparently it has shrunk to less than half a centimetre! So instead of using the ultrasound to guide in the wire, I had to have it guided in while being compressed in a mammogram machine. Those of you who have had a mammogram will know how uncomfortable that was. This was because they decided to aim for the titanium clip which remains in my breast from the biopsy, rather than aiming for a tiny tumour remnant. They know that this clip was placed in the original tumour, so if they aim for that, they should catch what's left of the cancer. I suppose it's quite difficult for the surgeon to operate, when she can't see the cancer (it doesn't look any different from my normal body from the inside, I suppose). So she operates with all my ultrasound and x-ray photos all around her, guiding her as to where it is likely to be located in my breast. The wire helps with that, as she can just remove it and a bunch of tissue around the base of it, and hope she got it all. I wonder if in future someone will invent glasses that surgeons can wear that will give them the ability to see cancer.

As an aside, while I was having my ultrasound, the nurse in the room just happened to be the same nurse who was there in February when I had my first biopsies, F___. Back then, before I had even received my diagnosis, she held my hand through 9 painful biopsies, and was so kind and thoughtful, I have not forgotten it. I was so glad to have the chance to tell her how much that had meant to me, and thank her for her kindness.

So with a wire hanging out of my boob (no, really!) I went back to my room to wait. And I waited, hungrily, for hours. I was 3rd out of the 4 women having surgery that day, but I think they scheduled the most complicated op first. Finally, at 3.30pm, I made my way to the theatre. My lovely anaesthetist was there, and we had a delightful chat about hiking on the Isle of Skye while I slowly drifted off to sleep. And 3 hours later, I woke up! It really is quite remarkable, medical science. 

The other part of the op, which I mentioned before, was the removal of some lymph nodes. Having been injected with radioactive dye the day before, they apparently used a geiger counter to find where the radioactivity was collecting, and that, combined with the blue dye, helped them locate the sentinel nodes to remove. I just find that so astonishing, what an incredible technique.

Coming round from the anaesthetic wasn't too much fun, but after a bit of anti-nausea medication and some sips of water (finally!) I felt vaguely human again, so they wheeled me back to my room, and to the welcoming arms of a rather worried-looking Tanai. I then proceeded to gingerly eat some of the leftovers from the day before (I'm sure I'm the only person to have broken their surgery fast with celeriac hash and duck eggs) and soon felt much more stable. Miss L____ came to check in on me, informed me that she'd removed two lymph nodes (as far as she could tell) and that it all seemed to have gone well. I'm to keep my dressings on until I go and see her on 3 November, when I'll also receive my pathology reports. So that's when I'll find out if the surgery was successful in removing all of the cancer, and if my lymph nodes are cancer-free. Fingers crossed I won't have to have any further surgery.

I then got dressed and we made our way downstairs. All along when preparing for surgery, everyone we've spoken to has insisted that we get a cab home, but it was such a charming, cool evening and I was feeling strong, so we defied advice and walked home through Smithfields market. It's only an 8-minute walk and we made it home fine. After some pumpkin soup which I'd made the day before I collapsed, exhausted into bed and slept very soundly.

So that's it! Surgery is ticked off the list (hopefully for good). I feel fine today, a little sore but I haven't had to have pain relief yet, and I still have some movement in my right arm. I keep having to remember not to pick things up with my right hand (which is tough as I'm right handed), and Tanai has taken the week off work to help me out. We managed a little afternoon walk today in the autumn sunshine and now I'm resting on the sofa. I'm wearing very comfortable clothes, a soft post-surgery bra (which I also have to sleep in) and I have a fabulous pillow which my friend Dee sent me, which hooks over my right shoulder and prevents my arm from chafing my armpit wound. I can shower as normal as the dressings are all waterproof. I'm sure it will get sore over the coming days, especially when I start to do my exercises (which I've been given in order to maintain movement in my right arm) but hopefully all will be well. If I have any problems I can just head straight over to St Bart's and they'll sort things out. So now I just have to rest and recuperate, and spend some time relaxing, reading books, listening to podcasts and catching up on some movies.

My fabulous arm pillow

This afternoon's walk through the St Bart's courtyard

Potential trial participation

A little update from me just before I head into my 7th chemo session on Wednesday. All's well, my follow-up chest x-ray was all clear, there seem to be no concerns from my ECG and I'm ready to go for the penultimate round. It feels good to be close to the end of chemo. I've been invited to participate in a clinical trial so I thought I'd share the information with you as it sounds really interesting. Basically, there were some studies carried out into the beneficial effect of taking aspirin in those who had heart disease, and some of the data suggested that aspirin appeared to reduce the number of people who developed cancer, and if people did develop cancer, it appeared to be less likely to spread. So a huge clinical trial has been set up to test these theories, comprised of people who have been treated for cancer of the stomach, prostate, bowel, oesophagus and breast. They are aiming to recruit 3,100 patients who have been treated for early stage breast cancer, which is why they have approached me.

The trial is called the Add-Aspirin trial, and has already been running for over a year. It's funded by Cancer Research UK, the UK Department of Health and the Medical Research Council Clinical Trials Unit at UCL (University College London). They wish to test the long-term effects on the potential of cancer returning of taking a dose of aspirin every day. I will first of all have to take part in a 'run-in' period where I take a low dose of aspirin every day for 8 weeks. If all is fine, I will proceed to the trial. One third of participants will receive a regular dose of aspirin, one third will receive a low dose of aspirin, and one third will receive a placebo. I will not know which strand I'm in. They want me to take a tablet every day for 5 years. I will receive regular check-ups, blood tests, mammograms and other tests, as well as a questionnaire each year, because aspirin has also been alleged to protect against age-related cognitive impairment. (Hilarious! Can it help me remember my keys every day?)

One of the things I've been considering recently is how I can 'give back' after I complete treatment. I feel really positive about the opportunity to participate in something which could make a real difference to cancer treatment in the future, and potentially help save people's lives. Although I will be unlikely to personally benefit from this trial, there's a good chance that the data gained from the trial will benefit people in future. Plus, samples of my blood and a sample from my cancer (when they get round to removing it!) will be donated for research, which is pretty cool. I also like that I get an 8-week run to check that my body would have no adverse effects from taking aspirin. Plus, it's aspirin! People have been taking this for years. It's not as though it's some new drug that has only been tested on mice. So I think it's a pretty good thing to do. I'll let you know if I get on the trial.