I finished active treatment (again) towards the end of last year, with my final preventative breast surgery. I still have a number of appointments in the diary, a regular check-up with my ovarian oncology team; blood tests for ovarian cancer markers (both 3-monthly); visits to the menopause clinic and the Lymphedema clinic (both 6-monthly); Zometa infusions on the chemo ward (also every 6 months for a total of 3 years); and I have to regularly pick up prescriptions from the pharmacy for Tamoxifen and various other things I have on repeat prescription.
In early March, as we could see what was happening in China and Italy, Tanai and I decided to self-isolate at home, to protect us both from the coronavirus. My immune system is still compromised post-treatment and I didn't want to take any risks. Tanai started working from home, and all my work could be done from home, so it was relatively easy to do. A week later, the government mandated a country-wide lockdown, and I was sent a letter and a text from the government requiring me to 'shield' for 12 weeks. This meant not leaving the house, and making sure no-one in my household exposed themselves to the virus, as I would be a burden on the NHS if I caught it. As we were already doing this anyway, nothing much changed. At first we struggled to get provisions, and were using up our storecupboard food (and toilet roll!). I couldn't get an online shop as all slots were taken, and our veg box became extremely unreliable with most things missing each week as they struggled with the surge of orders. For a few weeks we received a government box with essential provisions, and it was literally a lifeline to us until I managed to get on the Sainsbury's 'vulnerable list' so could get a grocery delivery once a week. We dutifully didn't leave the house, which has been quite tough, as we live in a small one-bedroomed flat with no outside area, and May was the sunniest month on record! Eventually we decided to leave the house for one hour a day, either early in the morning or late at night, for a walk or run. Luckily we live in an area which is full of offices, and very few residents, so we have felt quite safe as the streets are relatively empty. I'm hugely grateful for the fact that we have been able to properly shield, that Tanai has been able to work from home the whole time (actually the university closed so he had to work from home!) and I was able to switch the freelance work I had to remote work.
Out for a dusk walk
Most of my medical appointments have either been cancelled, or moved to phone appointments. I have missed one of my ovarian cancer blood tests, which will leave 6 months between tests instead of 3, but as I'm low risk they are not too worried. My local Boots closed, so we had to walk further for my prescriptions, but the Boots branches have implemented plastic shields for their staff and a limit to the number of people in the store at once, so again, I feel very safe.
Since January, I have been working as a volunteer phone counsellor for Breast Cancer Now, supporting other women with a diagnosis on their 'Someone Like Me' phone line. I get paired up with women who have a similar situation to mine in some way, and we chat on the phone for an hour or so, with the regularity determined by their needs (some weekly, some monthly, some for just a one-off chat). I have found it very rewarding, as I love to help other people through their own cancer journey, and use my experiences for good. It's also making good use of my coaching training, as we are not there to give medical advice, just to share our experiences and help others see through the fog of their treatment and build their own resilience, finding their own resources to cope. Since Covid-19 hit, demand for the service has increased, perhaps because the NHS is so swamped, and I have had quite a few 'clients'. And of course, lots of the advice I give is no longer always valid! Their experience of going through treatment in these strange times is very different from mine. They are not allowed to take anyone with them to any of their appointments. They can't organise 'treats' for themselves on a good week such as going to a restaurant. And it must be incredibly stressful putting yourself in an immunocompromised position when there's a respiratory disease doing the rounds. There are quite a lot of changes happening. Elective surgery was paused for quite a while, and the women I'm talking to are not allowed to have immediate reconstruction during their surgery if they have a mastectomy. Understandably, many of them are very anxious, and it's nice to be able to help them in the small way I can.
I suspect I will also have to make compromises: my next Zometa is scheduled for August, and I'm reluctant to go into hospital for my infusion during this pandemic. The Zometa gives me another 2% reduction of the potential of recurrence, as well as protecting my bones from the affects of my treatment, so I have to weight that up against the risks. I am getting very worried about my bones, however, so I have decided to go into the hospital for this infusion. My bones are at risk due to the chemo drugs I have had, and the medical menopause I'm now experiencing, as well as the Tamoxifen that I am on for 3 years. Already I am experiencing a lot of bone pain, often so bad it wakes me up at night, and I really want to be able to still do the things that I love, like hiking and yoga, so I need to give my bones all the protection I can.
I am also experiencing incredible pain in my hands and arms at the moment. I am writing my dissertation for uni so I'm at the keyboard a lot, and the nerves in my hands have been damaged by the chemo. I get shooting pains in the back of my hand almost constantly, and the pain is waking me up at night.
Another long term side effect is lymphodema, which I have sporadically in my right arm, hand, leg and foot, and permanently in my abdomen and torso. This is because I've had so many of my lymph nodes removed, so my lymph fluid gets stuck and builds up. It gets worse when the weather is warm, which is a lot at the moment. My abdomen is so swollen that most of my clothes don't fit me any more! They are too loose where my boobs used to be, and too tight around my hips! So I've been selling a load of my clothes on eBay. I've actually been really enjoying it. Some of them only sell for 99p but it feels great to be getting rid of them and sending them to a new home. I have worn some lovely frocks in my time, and now it's someone else's turn. I'm also really loving my new flat figure, and experimenting with different looks. I've embraced being bra-less every day, and I've got some good ideas of the kinds of clothes I'd like to try. But as we are still mainly at home I'm rotating between the same small number of outfits for the moment!
I realise there are some niggles and moans here, but it's important that I am honest. I know I'm incredibly lucky that I've managed to get rid of cancer twice, and I have given myself the best possible chance of a long and happy life, but I do have permanent disabilities which have resulted from my treatment which are affecting me on a daily basis. I'm finding work-arounds and ways of dealing with them but that doesn't make it any less difficult on most days.
Some of the swelling on my torso is making me a bit worried, as I have some strange swelling on the left hand side above my belly button. It could just be scar tissue, but my oncologist has referred me for an ultrasound, which I should have in the next couple of weeks, so fingers crossed that is nothing to worry about. I can't quite work out if it's always been there but my boobs were in the way when I looked down so I couldn't see it! Ha ha.
Anyway, my next blog post is going to be a guest post! Very exciting. So watch this space...
Here are some more govt and NHS messages and flyers that I have received.
