A welcome surprise and another lesson in unpredictability

Well, well, well. Not only did the PET CT scan I had a couple of weeks ago show no disease progression, my tumour marker level has fallen twice in a row over the past several weeks. The ongoing inability of my bone marrow to make enough haemoglobin to transport sufficient amounts of oxygen around my body continues to be a major challenge but there’s no doubting this is welcome news.

It was not expected. For me, it’s yet another lesson in how unpredictable this whole thing is.

I was more or less resigned to the breast cancer that has spread to my bones and “infiltrated” my bone marrow having spread further. This would have meant my moving on to intravenous chemotherapy. Instead, I am staying on my current medication – a combination of two (non-chemo) drugs, everolimus (Afinitor) and exemestane (Aromasin). This will be my fourth monthly cycle on these two drugs, which are taken in tablet form, once daily.

I know that iv chemo is an inevitability and I have to accept that. However, I’d be lying if I said the thought of it doesn’t scare me, with all of the associated additional and potentially lengthy treatment sessions and toxic side effects, including hair loss. Thus my relief at having dodged this particular bullet – for however long it may be.

Let’s stay with the good news. Not only was there no progression, there was, in the words of my consultant oncologist, “a hint towards better” in that the disease in my spine and pelvis showed up as less bright on the PET scan than it has done on previous occasions. The brighter an area is on a PET scan, the more active the cancer is in that area.

As for the tumour marker, this had shot up considerably towards the end of the second treatment cycle, suggesting there had been an increase in cancer activity. Now, going by the latest test results, it is back at almost exactly the level it was at when I started this current treatment three months ago.

On now to the issue of my bone marrow and the fact that the cancer is impairing its ability to make healthy blood – most critically at this stage healthy red blood cells, which contain the haemoglobin that transports oxygen around the body.

On the haemoglobin front, I’ve essentially been anaemic to one degree or another since my diagnosis in the spring of 2019, well over two years ago now. Up until now we’ve intervened with transfusions of red blood cells when it has fallen to a level that’s considered too low. I now generally know myself when it’s falling as I get breathless doing the simplest of things such as climbing stairs. That’s pretty much the current state of affairs.

Yesterday, for example, I went to Tooting Bec lido* for the first time since last summer. It’s baking hot in London at the moment so this is a great place to be. I swam four widths (the pool is 33 yards wide), breast stroke, after which I thought my heart was going to burst out of my chest it was beating so hard! That said, it was fabulous to be there and I was fine after a rest.

The problem with blood transfusions is that you can only have so many before you get iron overload, a serious condition that can damage major organs such as the heart, liver and pancreas. We’re not close to that stage yet but it wouldn’t take long to get there if I were to continue to have transfusions as regularly as I’ve had them recently. Earlier this summer, I had two within less than six weeks of each other. We’re now therefore looking at ways of tackling the problem that don’t involve transfusions. I hope they work.

My tumour marker and haemoglobin levels will be monitored even more closely than usual over these coming weeks. The results of the other scan I had – an MRI of my spine – have still to come through. I should get those next week. 

I can also report that a good few of the drug side effects and/or other physical ailments that were making me so miserable on a physical – and emotional – level have subsided.

I’ve continued to stay to clear of the painful and spirit-sapping mouth and tongue sores that I had on and off during the first and second cycles. That sentence really does not do justice to how awful these sores are. 

The massive cold sore wound on my bottom lip that wasn’t healing and that’s been plaguing me for around six weeks seems to have a mind of its own. One day it seems almost to have gone but then it’s a bloody mess again the next. I’m not swearing here, it really is sometimes a bloody mess. However, it does seems to be going in the right direction, albeit very, very slowly. Also, the wounds from the two pigmented skin lesions that I had removed from the sole of my right foot and my right calf nearly three months ago have now completely healed. These two things combined allowed me to go to the lido yesterday, although I did keep my face out of the water to be on the safe side.

The night sweats have been much less frequent but are still pretty nasty when they do happen. 

The discomfort that I’d been feeling in some teeth has gone – at least for the moment. I have a session with the dental hygienist at the hospital next week, by which time I really hope the cold sore wound has fully cleared up.

The sore feet at night can be a bit of a nightmare, especially if I’ve been out on a long walk during the day. My plan to take sleeping tablets more regularly so as to basically knock myself out hasn’t worked as planned. You can’t take alcohol with sleeping tablets and at 7pm when I fancy a cold beer or glass of cold white wine (or both!), bedtime seems a long way off. The alcohol usually wins!

I’ve had some new joint pain, but I can’t tell whether this is cancer- or age-related. The pain either eases on its own or I take painkillers. 

My 58th birthday has come and gone.

There was so much going on and so much uncertainty on various levels in the weeks running up to the day that I had been veering from thinking I wanted to see as many people as possible to feeling that I just wanted to hide under the duvet all day.

In the end, I had a lovely time, with celebrations and events with friends and family spread over the best part of a week, or indeed longer.

On the day itself, we kept things low key, with a little but perfectly formed extended family group. The rain stayed off and the cake tasted as delicious as it looks in the photo.

Over the course of a few days, there were multiple deliveries of, among other things, cakes, pastries, chocolates and flowers – lots of flowers!

There was a trip to the Wimbledon tennis championships, with Dave, my friend and partner in seizing the day. I have incurable breast cancer; Dave is five years younger than me and has Parkinson’s disease.

My husband and I went to the Hampton Court Palace Garden Festival one evening. Friends treated us to supper at the smartest restaurant in our local area. Some very good friends visited and stayed over one evening. We had a very relaxing night away with our 22- and 20-year-old sons.

I also went to a gig at London’s Jazz Cafe on July 11th, the day after my birthday. This was the night of the European football championships final in which England – the “auld enemy” of my country of birth – were playing. I’d booked this evening out a while ago as a birthday treat for my husband, our sons and me. However, when it became clear that England was going to be in the finals, I started looking round for replacement company – friends who, like me, didn’t mind whether they watched the match or not. An Australian friend and a Dutch friend answered the call and we had a lovely evening – unlike the people watching the match, given the sad ending for England! I’m only sorry that one of the two friends had to self-isolating afterwards as she was “pinged” to say she’d been in close contact that evening with someone who later tested positive for COVID-19.

Suffice to say I have felt very loved over these past couple of weeks. The cutest and perhaps best birthday present of all was a promise (see photo) from our sons to become blood donors. I understand they were all set to donate before my birthday but they both contracted Covid and had to postpone it. I’m quite hardline on this in that I see giving blood as one’s civic duty but I have to concede there was a certain amount of persuasion and emotional blackmail involved here!

Back to my medical situation.

The bone marrow impairment is of course a big concern but one has to be grateful for the other, more positive news. I am delighted to have received this unexpected surprise. Nonetheless, it seems appropriate to end this post with a phrase that I’ve used many times before: let’s just see how things go.  

*At 100 yards long and 33 yards wide, Tooting Bec Lido in southwest London is the largest freshwater swimming pool by surface area in the United Kingdom. It holds a million gallons of water and is just a 15-minute walk from where we live.

A birthday, a bike ride and a breast cancer reality check

That was a fabulous weekend – despite there being a stonking big breast cancer reality check at the end of it.

On Friday I went ahead and started my sixth monthly treatment cycle for the secondary breast cancer with which I was diagnosed in April. A mix-up with bloods meant it didn’t happen the previous day as planned. According to the blood test results, things are still looking good. For that, I am incredibly thankful.

The following day was our older son Jamie’s 21st birthday. It was the loveliest of occasions.

My mum bowling!

The two boys came back from uni and my brother Peter, who is also Jamie’s godfather, came down from Glasgow. He brought my mum with him. Finally, my two adult nieces – the boys’ cousins – who live in London (and who very sweetly call me their London mum) were also there, with the boyfriend of one of them. We went bowling!

The cake

Since I was diagnosed with this treatable but ultimately incurable illness in April this year, milestones have even more special significance than they ordinarily would have.

At this one, there was a sense of calm and wellbeing with lots of joy, affection, love and laughs… and, of course, cake. 

Then on Sunday, the next day, the two cycling clubs I ride with – BellaVelo CC and Balham CC – joined together for a 100 kilometre bike ride in my honour and to raise funds for research into secondary breast cancer.

Up to 90 of us, including my brother Peter, rode out through Surrey in different pace groups and then all met up in a coffee shop back in London at the end.

After the ride

The Balham club has a nice write-up and more photos of it here. The charity we raised funds for is called One More City.

It wasn’t until I saw the photos that I realised quite how many colours I was combining on the ride. I decided it would be fun – and appropriate – to wear both clubs’ kit and then, with the gloves, I added a touch of “breast cancer pink” to mark the fact that we were doing this in October, breast cancer awareness month.

The debate over the whole pink thing is quite polarised. In my case, I don’t mind the use of the colour but I do object to the use of “fun” props such as inflatable boobs and pink wigs, pink boas, pink tutus and the like. I get the fact that people want to make public displays of support and/or need an outlet for their own fears or other feelings but I find a lot of it quite tasteless. I think it trivialises, infantilises and sexualises this killer disease.

Colour clash!

Now we’ve got the feminist speech out of the way, let’s get back to Sunday’s ride. The two-club kit combo was bright enough but I hadn’t taken into account the bike and water bottle. That took the whole colour thing to another level!

The bright colours were appropriate, though, as they kind of reflected my mood. I was quite overwhelmed that some 90 people had signed up to do this event. I was definitely feeling the love. The support and sentiment that led to this ride taking place meant a great deal to me on a personal level and on top of that it was great to get these two lovely clubs together. I’m extremely grateful to everyone who helped organise and took part in the ride and/or have supported the One More City charity.

Relaxing on the sofa on Sunday evening with a glass of white wine, I reflected on what a lovely few days it had been. Treatment had gone ahead and both the birthday celebrations and the bike ride had gone really well. It had all been very special.

Then I read on Twitter of the death from secondary breast cancer of Deborah Orr, a huge character and well-known personality from the world of journalism. At 57, Deborah was just slightly older than me; she was also a Glaswegian. Chillingly, she died just months after receiving her secondary diagnosis. She was clearly very ill, but her death came as a shock, at least to me. I suddenly felt terribly sad.

Right there on the sofa, I raised a glass to Deborah and felt even more grateful for the weekend I’d just had.