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

Final chemo

A week ago I had my final session of chemotherapy. Hurrah! Almost 6 months after my first session I am finally done with what is largely accepted to be the worst part of this experience. Although I still have lots of treatment to come, this feels like a hugely significant milestone, and I am understandably very happy to see the back of it!

Hooked up for the final time!

Of course I'm not really fully finished with chemo until it's out of my system and I'm through the side effects, but I'm feeling a little better each day already, and psychologically it feels brilliant to know that I won't be knocked down again in a couple of weeks, just as I'm starting to feel well again. I'm starting to look forward to having some more energy, to getting fit again after 6 months of relative inactivity, and to venture out into the social world once more.

The side effects haven't been too bad this time, perhaps it's a case of positive mind over matter, and I've been working from home over the last week. Each day I've tried to venture out at least once, for a little walk, to keep as active as possible, and I'm trying to sleep as well as I can. I've been eating nutritious, healthy food and taking Epsom salt baths most days to ease the bone pain.

My favourite bakery, Konditor and Cook, ran a competition this week on their instagram account, where they asked 'who do you think deserves a cake and why?'. I commented that my amazing husband Tanai deserved a cake for looking after me during chemo, and that it would be a great way to celebrate having the final round this week. Well, to my surprise, they agreed! So this weekend we picked up a delicious hazelnut and chocolate cake from their Waterloo bakery.

A lovely way to celebrate the end of 6 challenging months.

I'm preparing a long, candid and hopefully funny post about my chemo experiences, which I'll publish later this week. Next up for me is an appointment this Friday with my surgeon, when hopefully I'll get a date for my surgery and a plan for what will happen. They are going to remove what's left of the tumour and also take out a 'sentinel' lymph node from my armpit to check that the cancer hasn't made it into my lymph nodes (this is how the cancer spreads to other parts of the body). Hopefully it shouldn't be too invasive an operation, and I will recover in a couple of weeks. After that I will have a course of radiotherapy, and then some more tests to check that all the cancer has gone. I'm also going back to the chemo ward every three weeks to have a Herceptin injection in my leg, for the next year. In the meantime I'm taking tentative steps into the world of 'having a life' again, by starting a painting class this evening. I used to love painting when I was at school, but haven't really done any since then, so I'm going to see where my inspiration leads me and learn a new skill. Looking forward to it!

It never rains but it pours

Those of you who have known me for a while will know that I have a small reddish-purply skin tag on my left forearm, which has been there for about 6-8 years. It first appeared when I'd been living in Australia for a few years and has been sitting there on my forearm ever since. Early on I got it checked out by my local GP in Sydney and they advised that it was nothing to worry about, but that I might want to get it removed one day if it got irritating, as sometimes they can catch on clothing and they bleed profusely. Of course I never got round to getting it sorted out as there were always things higher up my list when I visited my GP (including a pesky lump in my right breast!).

Fast forward a few years and things are now critical. Over the last few weeks it has been growing steadily, from the size of a lentil to about the size of a kidney bean, and it has become more red and engorged. After my last chemo it started to bleed a lot and it's been impossible to deal with ever since. I have been covering it up with large plasters, to which of course I'm allergic, so now I also have a huge ugly-looking rash all over my forearm. Last week I went to see my GP about it, as the thought of keeping it under plasters until chemo is finished was making me feel upset, and I also wanted to check that there's nothing I should worry about. She took a photo of it on her phone and sent it to a dermatologist friend of hers who advised that I should get it looked at.

So this morning we found ourselves in the Dermatology unit at the Royal London Hospital in Whitechapel, a sister hospital of St Bart's, to finally get it seen to. (Yes, Nick, finally! You can stop nagging me about it.) We saw a lovely doctor who asked me a whole bunch of questions (How long did you live in Australia? Is there a history of skin cancer in your family? etc) and then took a look at everything. As soon as she saw it she immediately declared that she thought it was benign but that I should get it removed immediately and sent to the lab for testing. So that's what happened! After all these years it took a couple of minutes for a nurse to scrape and burn it off (after a healthy dose of local anaesthetic) and pop it in a tube to send to the lab. She was a lovely nurse and kept making jokes about how I was losing my best friend, that I'd been attached to for so many years. (Friend? Nemesis, more like!) So now I will have a small crater in my arm, kind of like a cigarette burn. Much preferable to what was there before. And I shall go back in 5 weeks for the results and to get a check up.

The Royal London Hospital

While the doctor was examining me she asked me about the obvious issues she could see on my mouth and my body. Basically I have sores all round my mouth and red spots all over my body. These have only appeared in the last couple of weeks, since my 7th round of chemo, and I just assumed they were because I was immunocompromised and that they would go away once I recovered from chemo. She agreed, but still said we could do something about them. She has taken swabs and sent those to the lab too, and given me some cream and tablets for them. She suspects mouth herpes (ah chemo, the gift that keeps on giving!) and some kind of bacteria forming the welts on my skin. It's all pretty gross, I know, but these are the realities of being immunocompromised: my body is susceptible to everything and I can't fight off any infection. So now I'm at home, very happy that the growth on my arm has been removed, once again delighted at how thorough the NHS are being about my health. I'm also hoping that I'm not in the business of collecting different types of cancer! We shall see on 11 October when I get the results.

I wanted to also add something to my last post. When I was having my heart echo test, the nurse left the sound on, so I could actually hear my own heart beating. It sounded different depending on where she placed the wand from the machine. I don't think I've ever heard my own heart beating before, so that was pretty cool!

More tests and trials

So last week I went to see the cardio-oncologist to get the results of my various heart tests. I was scheduled to have an echo test in the morning and then see the cardio-oncologist in the afternoon. I received a call from a research nurse asking me if I'd be interested in participating in a trial, to which I agreed (I'm always keen to contribute to medical science, as I am benefiting from it so much right now!). They were conducting a trial to see what type of heart test is the best type to use with cancer patients, so they wanted me to undergo a different type of test immediately before my echo test, and then they would compare the results. The trial test was an MRI heart test, where I had to lie in an MRI machine and hold my breath several times while the machine did its thing. Then I had my echo as expected, and then saw the cardio-oncologist. All the tests so far (including the heart monitor) show nothing out of the ordinary, so they are puzzled about my symptoms. They are going to investigate further, fitting me with a heart monitor for a whole week once I've had my next chemo, and they want me to come back and ride an exercise bike while hooked up to a heart monitor. Once again, I love the NHS for being so thorough, and it's good to hear that it doesn't seem to be cause for alarm.

Then today I had my pre-surgery tests: a mammogram, an ultrasound and an MRI. I'll discuss the results with my surgeon on 22 September when we'll plan my surgery. I've described these tests before so won't go into too much detail, except to remark on something. For the MRI I had to have a cannula inserted into the inside of my elbow so that they could inject the contrast dye during the testing, and they always flush a cannula with saline once it's in, just to test it. And the weird thing is, as soon as they inject the saline into my vein, I can taste it in my mouth! Isn't that strange? Fun fact.

So although I won't get the results from these tests for a while, the doctor who did my ultrasound told me the dimensions of my remaining cancerous lump, and it's 15% of its original size! And I still have one final chemo to go. So while the main purpose of chemo is to catch any stray cancer cells that have spread to other parts of the body, it's also shrunk my tumour to the point where surgery will be much less invasive than it would have been back in February.

Tanai drew the tumour sizes from my three ultrasounds, the original one, the half-way one and today's:

So tiny, I can no longer feel it. Here's to getting rid of it completely.

Heart scans and more tests

This week I had my 7th and penultimate chemo, and I'm now at home over a lovely sunny bank holiday weekend, recovering and trying to rest. My aunt Siobhan came down from Tunbridge Wells to join me in the hospital and she treated me to a relaxing hand and foot massage when we got back to the flat afterwards. I felt thoroughly pampered! It was so lovely to have a natter with her and catch up. An unexpected positive side effect of chemo. The other, not-so-positive side effects are kicking in now and I'm being gentle with myself, giving myself time to get well again. It's hard sometimes to look out of the window at the blue skies, hear the carefree laughter of passers by enjoying their summer long weekend, and not feel a little cheated by it all. But I know that this too shall pass, and I will have the opportunity to enjoy sunny long weekends again in the future. In the meantime I should rest, relax, heal and not be too hard on myself.

Since moving onto the new drug regime (which I've had for the last 3 rounds) I've been experiencing some heart palpitations which intensify about a week after treatment. I mentioned this to my oncologist on Monday so he has referred me to a cardio-oncologist to get my heart looked at. Although I have a Heart Echo test every 3 months to check that the Herceptin isn't having too strong an effect on my heart; as the nurse said at my last test, 'that's the plumbing, not the electrics'! So on Thursday morning I went back to St Bart's to have a 24-hour heart monitor attached. This consisted of three large circular patches, stuck to my chest and either side of my ribcage, which were each attached to some wires which then fed into a little box which clipped to my waistband. I had to wear it for 24 hours underneath my clothes and carry on as usual. I then popped back on Friday morning to take the kit back. Unfortunately (or fortunately, depending on how you look at it!) I didn't experience any major palpitations while I was wearing the kit. So we'll see what the results are. I have to head back into hospital on Tuesday afternoon for two different kinds of heart tests and to see the cardio-oncologist to assess the results. Once again, it's wonderful that the NHS are being so thorough at making sure I am okay: I feel as though I'm in safe hands.

Wearing my heart monitor

Today is quite a significant date, as it's exactly 6 months since Tanai and I were in a doctor's room and first heard the words 'you have a breast cancer'. I feel as though it's a milestone. Psychologically, perhaps in an attempt to contain what I'm going through, I have been thinking of this whole thing as 'pressing the pause button on life for a year'. I know it's much more complicated than that, but I want to ensure I don't feel bad about 'opting out' of things for a year while I go through treatment. It may take longer than a year, but at the moment that's how I'm looking at it. And I'm on track. So today is the half-way mark. From now on, I'm nearer to recovery than I am to diagnosis, and that feels good.

Only one more chemo to go! I know that a couple of months ago I never thought I'd get to this stage, so I feel very happy about this.

Siobhan enjoying the frittata and salad I made for our hospital picnic

Outside King George V building heading into chemo

Home to a relaxing foot massage

Collecting hair inspiration for when my hair starts to grow back

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.

Chemo 6, and the rollercoaster continues

This week was my 6th chemo session, leaving me with only 2 rounds left to go. It's somewhat strange as the majority of cancer patients I'm in touch with only have 6 chemo sessions in total, so here's where a lot of people get off the chemo train. But I get 2 extra doses of weedkiller so I'm not quite done yet. It's been an eventful few days, reminding me that this journey is never going to run smooth, but I'm doing okay, convalescing at home this weekend and waiting for the worst of the side effects to kick in.

On Monday I saw the oncologist as usual before my chemo session, to talk through how I am, and prepare anything different from the last time. I've seen three different oncologists from the team since my diagnosis, and for the last couple of rounds I've seen the head honcho guy, Prof. S___. He leads the team and is very distinguished in his field, having written heaps of papers and run lots of studies. He's a lovely chap with a friendly manner and a no-nonsense approach to what I'm going through. We discussed my little trip to A&E and I went through my notebook with all my new questions since last time (I write them down over the intervening weeks and go through them in my oncology session). We checked my bloods, and thanks to the GCSF injections my neutrophils were a healthy 5, so that was good. He then mentioned that he wasn't hugely happy about proceeding with chemo on Wednesday until I'd seen a dentist and could confirm 100% that I didn't have an abscess on my tooth. The risk is too great, apparently. So I left his office on Monday afternoon, having not registered with a dentist since returning from Australia, with a pretty hard deadline for getting my teeth checked out.

A cursory google and a few phonecalls later and I was booked into a dental clinic near the Barbican, near where I live, for the next morning. I had to shift some meetings around at work but I was so determined to avoid anything delaying my chemo schedule I became a little single-minded about it. Luckily, I hit the dentist jackpot. Not only is my new dentist lovely and efficient, she also happens to work in an NHS hospital as well as her private practice, and sees lots of cancer patients with teeth problems so completely knows her stuff. She had a thorough grounding of the impacts of chemo and radiotherapy on teeth, the key risks and things to look out for, and exactly what I should do in my situation. X-rays showed that I was abscess-free (yay!) so chemo could go ahead, but we have also come up with a plan for things we need to do between chemo and radiotherapy to ensure my teeth are impacted as little as possible by the effects of the rads. She has also prescribed me with high-fluoride toothpaste to protect my teeth from the effects of my cancer treatment, and she has given me a little blunt syringe so that I can get mouthwash into the niggling cracks around my wisdom tooth, to avoid an infection delaying chemo. I left feeling very happy and with a plan for October/November to ensure my teeth are also looked after through this.

Wednesday went ahead as planned, with my wonderful friend Caroline joining me on the chemo ward for a picnic lunch and a natter. I had the smiley nurses G___ and G___ again. Unfortunately, this was the first time they didn't get my cannula into a vein on the first go. It took 4 goes to find a vein as my poor little veins were collapsing, which was quite distressing (they ended up having to call the head nurse to do it!). I've been lucky so far and have had good veins, avoiding getting a PICC line fitted, but this time was tough, and I really hope my veins hold up to having 2 more rounds before I'm done. My hands are quite bruised now!

Selfie on the ward for chemo 6

As per last time I had quite a bit of energy (somewhat steroid-induced) for the couple of days following chemo, so I did some work and tried to keep busy. Then the rollercoaster came along again! I received a call on Thursday evening from my GP saying that UCLH had sent over a report following my visit to A&E and that they'd seen something a little worrying on my chest X-ray, so could I come in to see them. Friday morning I rock up at the GP and we go over how I am. She checked my breathing, asked me loads of questions about my heart, chest pain, the little flutter I've started to feel since shifting onto this new drug cocktail. She suspects that if the 'cluster' on the X-ray was the beginning of an infection, the antibiotics which I received at UCLH probably got rid of it, but she asked me to get another chest X-ray just in case. She also referred me for an ECG test (electrocardiogram) to check my heart is working as it should be. So I ended up spending most of Friday wandering round various hospitals of London (St Bart's and UCLH, because unfortunately the tests couldn't be done in the same hospital!) getting tests done. The results will be sent to my GP in the next few days, but hopefully it's not anything to worry about. To be honest, the main takeaway I had from all of this was a realisation of my GP's role in all of this. Each time I visit the oncology team, a letter gets typed up and sent to my GP, and of course they received the A&E report. Knowing that they are taking note of what's happening to me, and even called me when they thought something was awry, gives me great comfort as I go through this. Another example of our amazing NHS!

Display at UCLH of early anatomical drawings

This time around I have been given the GCSF injections in advance, so Tanai is administering a shot each day in my belly for the 3 days following chemo. Hopefully this should ensure that my neutrophils don't drop below the required levels and I can stick to my timeline. I've had my MRI booked in for early September, just before my last chemo, so that the surgeon has some up-to-date imagery to work from when planning my surgery, and I will meet with them before my last chemo. The light at the end of the chemo tunnel is finally visible, and I'm so ready to move onto the next stage of treatment: surgery. Chemo sucks, and I hope I never have to go through it again after all of this.

I now have my own sharps disposal unit for the used GCSF needles!

On Wednesday Tanai will go to Portugal, on the holiday we were supposed to be enjoying together, for his friend's wedding. I'll be sad to be without him for a week, and of course gutted that I miss out on a holiday and on meeting lots of his friends, but we have already started to plan some fun trips for next year, and soon we will have other holidays in the diary to look forward to. In the meantime, I have a host of friends who will hopefully swing by and see me during my week flying solo during treatment. Let's hope there's not another A&E visit next weekend!