Although I had been looking forward to week 3, I was really scared about having to go through another round of chemotherapy, as the first one was a real struggle for me. I wasn’t sure whether I would feel as good as everyone said I would – but they were right.
Apart from a few residual side effects (altered taste, sore hands and mouth), I felt normal again. And actually felt a bit guilty that I looked so good when I was meant to be poorly with cancer. It was quite disconcerting when people I met told me I looked great – I felt a bit like a fraud. And even better – no more routine tablets! (Apart from the laxatives and the steroids the night before chemo).
Daisy, Daisy…
Matthew Porteus, one of the orthopaedic consultants at West Suffolk, asked if we wanted to borrow his tandem. Dermot and I both jumped at the chance. So on the Sunday afternoon we went out exploring. I was a little (OK, very) nervous about this, but absolutely loved it. There is a LOT of trust involved. The person on the back has no control whatsoever – no brakes, no steering, no say in how fast or slow you pedal, and you can’t see much. Also, stopping and starting are skills in themselves. But once we got going we were both beaming! I could take both hands of the handlebars to get things out of Dermot’s pockets, take photos and generally poke and prod him (not sure he enjoyed that as much as I did), and we’re both keen to save up for a tandem of our own.
London Calling
This was the week when I had been told to book treats to enjoy to keep me going through the bad weeks of chemo. And Monday was definitely going to be a Good Day. Rather than spending a lot of money on a very good wig, I thought I’d get some funky glasses instead. My two normal pairs of glasses looked hideous with my new bald look, and I wanted something different.
I had decided to be very brave and go to London without covering up. I mean, if you can’t get away with being bald in London, where can you? I felt very self-conscious on the train, but in London no-one batted an eyelid. In shops, I didn’t see even a fleeting ‘look’ from the assistants, and no chuggers came near me on the streets! (You know, the charity muggers who want you to sign up to stuff.)
We get our glasses from The Eye Company in Soho. We’d emailed the shop, and Steenie, the most amazing man who can pick out the perfect pair of glasses that you would normally never try on, agreed to come in on his day off to help style my bald head. He was as excited as I was to find me the perfect pair, and we did. They were bold black frames with red shoes on the end of the arms!!!!! You wouldn’t normally see the shoes if you had hair, but everyone will be able to see them on me!!! We both thought – if you’re going to stare at me, do it because I have fab glasses rather than a bald head. And these were just the glasses.
I then met Dermot who had been in London for a meeting, and we wandered through Covent Garden past Paul Smith’s store. Now, when Dermot and I used to be Consultant and SpR, pre-dating, I always used to comment on his socks. He only wore Paul Smith socks, to match the PS suit, shirt and tie. And it became something of a daily ritual. (I used to flatter all the consultants – manipulation of their egos to keep them happy and off the juniors’ backs.)
Anyway, I thought my new look might need something from PS, and I had seen a beautiful hat online. We went in, and they had it in my size (small, now I have no hair) and it was perfect fit. Then we ate tapas at Barrafina before he took me to see a show. I had no idea what we were going to see. We ended up seeing Gypsy with Imelda Staunton, which was out of this world. Daniel Sommer had recommended it to Dermot, and I can’t recommend it enough. A very, very good day!
No massage for a year?
I’d been looking forward to having a massage as a way of relaxing and unwinding and being kind to my body after chemo had well and truly battered it. There is a local country house that does spa days, and I foolishly thought they’d have availability if I rang on the Monday, but it turned out they were fully booked until the end of September. I then tried a local salon where I’d been before and they told me that they couldn’t give me a massage until a year after chemo had finished!!!!!
I was gutted, and in shock. Seriously??? I had no idea that this was an issue. Most cancer centres offer complementary therapies such as massage and acupuncture, so why can’t beauty clinics? I looked at the Macmillan website which said that massage is OK during treatment for cancer. With a bit of Googling, I discovered it’s an old wives’ tale that massage can stimulate the spread of cancer by stimulating lymph flow, but most beauty therapists are taught it and believe it. And I’m having chemo, so even if they do get the lymph going, chemo is treating ALL of me. My massage would have to wait until the end of the next cycle, once I had got a letter from my oncologist.
Bowels…
I am getting a bit obsessed with my bowels by now. I hadn’t been for 10 days, despite taking regular tablets to help me go. I’d gone to the local pharmacist who’d given me some Lactulose to help as well. Now THAT made me feel like a little old lady! I’ve always thought taking laxatives is something a patient does, and clearly I’m not a patient. And in my head they all taste disgusting. And here was I, having to swallow Lactulose (FYI it tastes like a sugary syrup). But nothing was working, and I was getting bloated and sore. So I went back to the chemist and got some suppositories, and finally they worked. The relief!!!!!
Oncology Appointment
On the Wednesday we went to see my oncologist to get a check-up before round two. Clinically, the lump seemed to have shrunk a bit, and wasn’t as obvious to see, so maybe the chemo was working? We got the results of my blood tests from the morning, and my neutrophil count was 1.0.
Chemotherapy targets your bone marrow and lowers the number of red and white blood cells. Neutrophils are white blood cells that fight infection. I have the bone-marrow stimulating GCSF infections to boost red and white blood cells, and take antibiotics to stop me getting infections when the count starts to drop.
This made Dermot and me sit up and think. This is very low. If it had been <1, I might have been admitted for a top-up and antibiotics, and the chemo would have been delayed. It brought home to us that chemo is a serious medicine and I am actually not as well as I think I am, even in the good weeks.
We ran through the list of side effects and ticked off what I’d had. I then told her about the constipation and buying Lactulose and suppositories and got properly told off. I had to stop being a doctor and trying to heal myself. I should have rung the oncology nurse to ask her advice about the constipation. They were worried that I could have caused trauma when I used the suppositories, especially when my blood count was so low (I hadn’t even thought of that, as I felt so good). Personally, I’d rather use a suppository (and having done 3 years of colorectal surgery I’m a little more educated in these things than most patients), than risk getting painful bleeding piles from constipation. Anyway, lesson learned. Stop treating myself. Ring for advice. Be a patient. We changed my tablets to Movicol, which should hopefully keep me regular.
Please, no more injections!
I then talked about the headaches and severe bone pain, and it was suggested that it could be the GCSF injections I’d been having. A lot of women can’t tolerate the full week of injections, apparently. Because I’d had a problem with them and had such bad side effects, they could justify giving me a different injection. It’s only given once, instead of the 6 days, with fewer side effects, but it’s double or triple the price of the weekly course, which is why it’s not given routinely to patients at my hospital.
Not everybody has such severe symptoms from the daily injections as I did, and it was a relief to know that there was an alternative. It was hard to think that women being treated go through these extra symptoms because of money. Now this is not going to turn into a rant about money and the NHS and the Cancer Drug’s Fund – that’s not my thing, but I’d like women and men who are having, or may have chemo to know that if they struggle with the first round of chemo and GCSF injections, speak up – and your oncologist might be able to switch you to the one-off injection to see if it makes a difference.
Back to work
I went to visit everyone at work and it was very strange wandering around the hospital in normal clothes. I felt like I was trespassing! But it was so nice to catch up with the breast care and clinic nurses, and my secretaries, and be able to have a bit of a laugh and joke about everything that had happened. They also gave me a Chemo Essentials Bag and a Comforts Gift Box from a company called Occasional Comforts . Lots of lovely useful little things that I never knew I needed to help me get through chemo. These would make fabulous presents for anyone having chemo. And one of my clinic nurses bought me a beautiful orchid that I have promised not to kill (I’m terrible at looking after houseplants).
Filling in time
The rest of the week was spent trying to keep active, and catching up with a few friends. I still got up and walked every morning with Alex, and did a 10 mile cycle ride on a gloriously sunny day. A lovely friend, Emma, had sent me a Rapha cycling hat which I definitely needed under my helmet – I didn’t want to get stripy scalp tan lines and my helmet was a bit loose without all my hair! I also went cycling with Pam, and this was a bit more challenging. I was finding it hard to ride at my normal pace and was (stupidly) shocked at the fitness that I’d lost, but we put the world to rights in the tea shop across the road from me. I do think I might have traumatised the young girl serving us. I was wearing my hat to cover up in public, but was talking about getting a henna tattoo on my scalp. She walked past and heard us talking about me sticking needles in my head….Ooops!
I finished the jigsaw, and became an expert in scarf tying, although I was starting to be brave and walk the dogs without a hat or scarf. I quite liked feeling the breeze running through my hair – no wait, running over my scalp! More time napping in the hammock, but only for a few minutes – as my delightful cocker spaniel puppy jumped up after paddling in our duck pond, and covered me in muddy duck poo – just what every neutropaenic girl wants!
Mirror, mirror, on the wall
I’m slowly getting used to being bald, but I still don’t like the way I look in the mirror. I have no body hair now, apart from my eyebrows and eyelashes, and my port is one of the first things I see, with the line running up the side of my neck. I don’t look like ‘me’ anymore, but I guess the old Liz has gone, and I need to learn to like and accept the new one.
I can pretend to like myself more when I’m all dolled up. Friends had said that suddenly it was really important to them to wear make-up, lipstick, earrings to make them feel attractive and feminine once they had lost their hair. And they were right. I very rarely wear earrings now, but was digging them all out again, and with a bit of lippy I could put on quite a good mask, and actually like the way I looked. But this would be a work in progress. And the added pressure of coordinating my hat and head scarf with my outfits – it was taking me even longer than normal to get ready to go out!
And that ends cycle one – 3 weeks had flown by. On the Thursday evening, the night before chemo, I could hardly remember how bad the first week had been. I was hopeful that the change in injections would make it a little more tolerable, but that didn’t make it any easier to know I had to go back and have it all again. With the steroids on board, I was back to sleepless nights, and the apprehension of what was to come.
