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.