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.

Final pre-op prep

I'm heading in for my surgery tomorrow so just thought I'd update you on the final things that have happened this week. Since my pre-op check-up I have seen the cardio oncologist again, for the results of my various heart tests. She was very reassuring and said all the test results seem fine. She suspects I have what is called Ventricular Ectopy, where my heart decides to give an extra beat every now and again, for a short burst, which explains my chest pain and the fact that I'm feeling my heart beating quite aggressively. She said it's nothing to worry about in the short term, that I'm fine to proceed with surgery, but that if it's still happening in a couple of months I should head back in to see her. She did, however, point out that my blood results show I'm anaemic, so she has advised that I receive a blood transfusion after my surgery rather than simply being left to build my bloods back up on my own.

I also received a call this week from the clinic to say my bloods needed doing again, so it appears that they are not as good as they could be. The nurse told me my magnesium and potassium are low, or something like that (I didn't take notes) and she took three more vials from me to do further tests. Due to 6 months of sustained chemotherapy, my veins are not as good as they used to be, and have a tendency to collapse when someone tries to put a needle in them. She tried her hardest but had to use a vein that was quite deep, and now I have a huge bruise on my left arm! I asked the google what I could do about collapsed veins, thinking there might be some things I could do to help them regain their strength (such as drinking lots of water doing exercises etc) but all I unearthed were helpful websites urging me to stop doing drugs! It seems as though that's the main cause of collapsed veins, and the advice is all very admonishing, so I retreated. Anyway, hopefully they got what they needed at the hospital and my bloods are getting better.

Finally, this morning I had to go into the nuclear medicine department again so that they could inject me with some radioactivity. The nurse was fabulous and explained how it all works, before injecting it into my boob near the nipple. It only stung a little and now I'm back home. After the injection, she took a marker pen, circled the area she had injected and put a little arrow towards it with 'INJ' next to it! I suspect that is not the last time I will be written on with marker pen. Oh well, if it helps the surgeons I really don't mind. So tomorrow they will apparently use a Geiger counter to see where the radioactivity has gathered, and this will help them see where my primary lymph nodes are, to aid them in taking them out. It's all so fascinating.

At the nuclear medicine dept this morning. Far too early for Tanai!

On the way home, we stopped at St John's bakery and bought two donuts. They make delicious fresh donuts every day and fill them with different creams and custards. Tanai got one with honey and brandy cream, and I got one with a delicious spiced custard. This has become a bit of a tradition now, buying St John's donuts at each stage of my treatment. It's so lovely to have it to look forward to.

Today's yummy donuts

This weekend I also went to my first gig at the Roundhouse since the day before I received my prognosis back in March (we went to see Sampha and the very next day got all the test results). There was an all-day festival featuring some really funky music, including the Hot 8 Brass Band, who were great. I managed a whole glass of wine and we stayed out until 9pm! Crazy. After 6 months of being very boring and primarily staying home, it felt like a real treat.

I finally have a social life again

We also spent Sunday ferociously batch cooking, so that we have a freezer full of food in readiness. Although Tanai does love cooking, it's likely I will have mobility issues for a while in my right arm, so might not be able to cook for a while. Rather than have him cook every single night, I thought it would be nice to stock up on some yummy meals in our freezer. The flat still smells delicious!

Chef Cardona

We also did some DIY and installed a new ceiling light in the kitchen to brighten up a dark corner. We received a lesson from my dad over video whatsapp and then turned off the electric at the mains and wired in the light. A bit nervewracking but it worked!

Lovely new ceiling lamp

I have finally ditched the headscarves as I now have enough hair to look plausibly like another short-haired person, and I feel great. It's a little windy round my ears though, I wasn't prepared for the cold! But I'm enjoying how low-maintenance it is. Someone at work said 'big earrings and lippy' so I've taken that on board.

Rocking the short hair

I'll update you all after the op! Fingers crossed it all goes well.

Preparing for surgery

My surgery has been confirmed for Tuesday 24 October, so for the last couple of weeks I've been attending various appointments to prepare for the op. I saw my oncologist again on 2 October: my standard post-chemo check-up. She was really happy with my progress and I don't have to see her again until 4 December! It feels so strange, after seeing the oncology team every 3 weeks for the last 6 months, to have such a huge gap before seeing them next. As my treatment progresses my schedule of appointments will change, and once I'm done with radiotherapy I will drop down to seeing my oncologist and surgeon every 3 months, then every 6 months, and eventually I will only have to have annual check-ups. But I'm getting ahead of myself...

On 4 October I had my first Herceptin injection. Regular readers will know that this is a monoclonal antibody (I explained how they work here) which I have had intravenously during my last 4 rounds of chemo, along with Docetaxel and Pertuzumab. Its actual name is Trastuzumab but Herceptin is the brand name and widely used. Herceptin blocks the growth factor HER2 from helping the cancer cells to grow, and so the cancer cells eventually die. It has been shown to be hugely effective at preventing cancer from returning, so I have to continue receiving a dose of it every 3 weeks for a year in total. It took about an hour to receive it through an IV but now it's administered via a large needle in the thigh for a couple of minutes. Although this is much more convenient it bloody stings! My friend Jana came with me and distracted me and held my hand while the needle went in.

Next up was my pre-op assessment on 10 October, at my regular Breast Clinic in the West Wing of St Bart's. First they weighed and measured me again, so that they can calculate how much anaesthetic I need, then they took my blood pressure, took some blood for testing, and swabbed my nose, mouth and groin to check for staphyloccocus. I explained that I had actually had an outbreak of staphyloccocus aureous on my skin recently, but was on a course of antibiotics to get rid of it. It's highly infectious apparently, and can have major developments if not treated properly, so they have to control its spread in hospitals. Apparently if the tests come back positive, I will have to be last on the operating table that day, so they can scrub thoroughly after me.

Then I had to answer a whole heap of questions from a nurse, including whether I'd had general anaesthetic before, when I last had bronchitis, whether my ankles had swollen recently, and loads of other seemingly non-related questions. I had a general anaesthetic when I was a child for a multiple tooth extraction, I haven't had bronchitis since 2014 and yes, my ankles are swelling every day at the moment, in case you're interested. They are particularly concerned about some of the questions we're investigating to do with my heart, so they sent me off for another ECG and a doctor came to listen to my heart. Once again, the ECG seemed fine, but as I have an appointment with the cardio-oncologist next week, they're going to hold final judgement until then. Fingers crossed I'll be good to go for surgery on 24 October.

The patterns my heart makes

The nurse explained a little about what would happen which I will outline here for those of you interested. Firstly, the day before surgery, on Monday 23 October, I have to visit the nuclear medicine department for a Sentinel Node Scan. They'll inject some tracer near my breast and they track its progress in the lymph system by taking pictures over the course of 3 hours using a gamma camera. So basically I have to lie extremely still in a huge nuclear camera machine for the best part of half a day. Fun times. This will then guide the surgeon who will be removing my sentinel lymph node as well as the rest of my cancerous lump.

Then on the morning of 24 October I am not allowed to eat anything. Those of you who know how hangry I can get can appreciate that this is one of the things I'm most worried about. No food from midnight onwards and no water from 6am onwards. I'm going to get cranky! I also have to remove all nail varnish, and I'm not allowed to moisturise that morning or use an oil-based shower gel. I have to arrive at the hospital at 7am when I'll be greeted by the team and meet my anaesthetist. At this stage I don't know what time my surgery will be, as they decide on the day what order they will do everyone in.

So essentially the procedure is this. I am having two surgeries in one. Firstly, a Wire-Guided Wide Local Excision. This is the name of the procedure for removing the remainder of my cancerous lump. In the morning, they will use an ultrasound machine to guide a wire into my breast and they will leave the end of it right at the base of the remaining cancer. I will then have to go about with a wire hanging out of my boob until I head into surgery! This is to guide the surgeon, Miss L___, as she removes the cancer including a margin of healthy tissue so that we can be happy it's all gone. She will go down to the end of the wire and remove that along with the cancer. She will also take out the titanium clip which they put in there right back in February when they were doing my original biopsies.

And secondly, I'm having a Sentinel Lymph Node Biopsy. This is to check that the cancer has not spread into other parts of my body. The Lymph nodes are small, bean-shaped glands throughout the body. They are part of the lymph system, which carries fluid, nutrients and waste material between the body tissues and the bloodstream, and is an important part of the immune system. Cancer co-opts the lymph system in order to travel around the body and settle elsewhere, which is why it's possible to have Breast Cancer in your lungs, brain, and other organs. If my cancer has spread, it would do so via the lymph nodes in my armpit, so the surgeon is going to remove the first couple of glands and send them off to the lab, to see if they can find traces of cancer in there. The way they do this is quite funny. While I'm under anaesthetic, they inject my boob with blue dye, and then see where it goes. The first couple of nodes it appears in are the ones they will remove. They will take out 1-5 nodes (the average is 2.2). Apparently my breast can remain blue for up to 18 months after surgery! I think that Smurf Boob will be my new pirate name. Maybe I should audition for the next Avatar movie!

Once they're done, as long as there have been no complications, I can leave hospital the same day, and don't have to stay overnight. The lump and nodes will go off to a lab, and I will get the results 2 weeks later. If they have managed to take enough margin round the lump and my nodes are clear of cancer, I will not have to have any further surgery, and can go on to have radiotherapy a few weeks later. If the margins are not clear, or if there's cancer in the nodes, they will have to operate further.

I have been given an information sheet from Breast Cancer Care containing exercises I must do each day to ensure I get my full motion back in my right arm. There is a risk of Lymphodema, which is a permanent swelling of the arm due to there not being enough lymph nodes to fully drain from the arm and upper body. Also, I will not be able to have any blood pressure tests or blood taken from my right arm for the rest of my life! Let's hope my left arm can do all of that for me in future.

So now I'm feeling quite prepared for the surgery. I will take 2 weeks off work afterwards to recover, and hopefully will be fine to return after that.

And to further examine my heart, yesterday I had what's called a 'stress test' on my heart. This was quite a tricky test, I had to sit on a kind of exercise bike, but one where I was laying back at 45 degrees so they could put heart monitors around my chest and back. They set the 'bike' on a course which got increasingly difficult, and I had to keep pedalling in order to push my heart rate up. The tricky part was that they had to tilt the machine to the left in order to get the ultrasound wand and take photos of my heart. Riding a bike until your heart rate reaches 150, while tilted to the left so you feel as though you're going to fall off is quite challenging! But we made it in the end and they got all the pictures and videos they needed. I will see the cardio-oncologist on Tuesday for the results.

And my other hospital visit this week was on Wednesday, when I went back to the Royal London for the results of the biopsy on the skin tag I had removed a while ago. All good, I don't have skin cancer, hurrah! It was just a bundle of blood vessels so nothing to worry about.

One more week until surgery! It's a busy week at work but I'll be resting lots in the evenings and continuing to build strength and energy to help me see it through.