Legal doping and Hank Williams

I can personally attest that blood transfusions do indeed improve your cycling performance! Unlikely as it seems, I have become a legal doper.

I had some scheduled blood tests done on Monday with a view to starting my second cycle of treatment after seeing the consultant the following day. When I saw the consultant, however, she told me my haemoglobin level had fallen even further since my previous appointment. It was clear that a blood transfusion was the obvious option to help combat the anaemia that the low haemoglobin level was causing – even to me who’d been in denial as to whether it was necessary.

The secondary breast cancer I have is in my bones and bone marrow, with the latter affecting my body’s ability to produce the required amount of red blood cells. Red blood cells contain haemoglobin, which transports oxygen around the body.

A transfusion would mean I didn’t feel as tired as I’d been feeling these past few weeks. I’d been finding that if I went up the stairs too quickly, I had to stop at the top to get my breath back. I couldn’t rush anywhere – it was taking half as much time again as it usually did to walk to the the tube and from the tube to work. On Thursday, therefore, I spent the whole day at the hospital having two units of red blood cells transfused.

You’re meant to feel the effects of a transfusion pretty soon after having it. I therefore decided I owed it to myself to do Parkrun on Saturday morning. Parkrun is the free, weekly, timed 5k runs that take place in hundred of locations across the UK every Saturday morning. I’m a massive fan and while I haven’t run for months, I’m keen to start doing Parkrun again if I possibly can. However, I had a pretty strong feeling that even if I had the energy to run for 30 minutes plus, my back (there’s cancer in three vertebrae) and hip (the pain there may or not be related to the diagnosis) wouldn’t cope for more than a few hundred metres. So I knocked that idea on the head.

Come today, though, I decided I’d aim for a proper bike ride. Since May 19, I’d only been out on my bike a few times and I hadn’t cycled more than 10 miles. You get out of the habit pretty quickly so I did have to psyche myself up for it. Also, we were at a wedding last night (nails painted accordingly!) and this morning I wasn’t exactly raring to go. It was a beautiful day, though, so eventually I forced myself out the door.

Off I cycled to Richmond Park in south west London, did three laps then cycled back home, stopping only at lights and junctions and to take photos of the beautiful fawns in the park. I cycled almost 35 miles in total and surprised even myself. In fact, I would have done a fourth lap had I not wanted to make sure I got home in time to watch Andy Murray in the men’s doubles tennis finals at Queen’s. In the end he didn’t play until much later on so I could have gone ahead and done the extra lap.

Painwise I felt almost fine the whole ride – no hip pain, no back pain, and just a little pain in my left ribs (where it’s likely there is cancer).

I can’t say for sure but I really don’t know whether I would have been able to do that ride at the start of this week. I’m not sure I’d have attempted it. Of course I’m aware that even with the transfusion, my haemolgoblin will still be below normal levels, but it’s all relative.

As well as having a transfusion, I’ve also had to take a temporary and hopefully short break from treatment. I’m disappointed but the blood tests had also shown that my neutrophil levels had fallen during the first cycle to below the level that’s judged safe to continue with treatment. Neutrophils are the white blood cells that fight infection. We’ll do some more blood tests tomorrow and hopefully we’ll restart treatment on Tuesday. The break in treatment has also probably led to me feeling less tired as one of the drugs I’m on can also lead to anaemia.

I’ve written many times before that I had in effect resigned myself to being diagnosed with secondary breast cancer at some point. I was at high risk of it happening and that’s precisely what has occurred. Accepting that it might was part of my coping strategy.

I even had a headline planned for the blog post I would write if it came back. It was “The f***ing f***er’s f***ing back and I’m f***ed”. In the end, though, I decided not to use it. I went for the much plainer and much less crude and bleak, “It’s back.”

While the first part of my unused headline captures perfectly how I feel, I hope it’ll be a good while yet before the second part becomes a reality. As the wedding last night and today’s bike ride show, there’s still plenty of world out there to enjoy and plenty of wonderful people to enjoy it with. In the end, we’re all f***ed, aren’t we? To paraphrase the late, great American country singer Hank Williams, none of us is getting out of here alive.

Cycling plans come crashing down

This really was going to be the year of the bike. I’d even bought an additional week’s leave from work so I could fit in all the cycling trips, events and related training that I had planned.

The secondary breast cancer diagnosis I received at the end of April, though, put paid to that. The primary breast cancer I was treated for in 2015/16 has come back and has spread to my bones – most significantly to my spine  – and bone marrow. It’s treatable but not curable.

I know the diagnosis is the key thing here. Everything else, really, is insignificant. However, when I got my diagnosis, I just felt all the ambitious and exciting cycling plans I had for the summer collapse around me. To make matters worse, I had my good bike stolen from outside the hospital where I had the appointment with the consultant on the very day she told me she strongly suspected my cancer had come back. It really felt like someone had it in for me.

Most significantly, I’ve had to pull out of the big charity bike ride I was planning on doing in France in July that consisted of cycling Stages 5-7 of the Tour de France route a week before the real thing. I was due to cycle 345 miles over three consecutive days as part of a big fundraising event known as Le Loop. Instead, I’ll be following the other riders’ progress from my home in south London. The other riders are doing anything from two to all 21 stages of the Tour.

I’m a member of two cycling clubs, one of which is BellaVelo, a fabulous women’s cycling club and community based in south west London. A bunch of us from BellaVelo had signed up to do various stages of Le Loop. It was all very exciting. There was such a buzz around it. Almost every conversation I had with relatives, friends and colleagues involved someone asking how my training was going or asking for details about the event itself. I’m gutted not to be doing it.

I’ve also had to withdraw from the “Highland 500”, a version of the famous North Coast 500 bike ride that I was planning to do with my brother Peter the first week in June. This was to have been a major piece of the training for Le Loop. For seven days in a row, I should have been struggling up and racing down one hill after another in the Scottish Highlands. Instead I was at home in Balham getting to grips with the treatment I’d just started and with the symptoms of the cancer itself. 

Among other things, I have anaemia as a result of the cancer being in my bone marrow – it can also be side effect of the treatment I’m on, so that probably hasn’t helped – and I’ve suffered a massive loss of energy. I bought a good second-hand bike to replace the one I had stolen; at the moment even looking at it makes me tired. In fact, the anaemia is at the stage where the consultant oncologist is proposing a blood transfusion.

My fundraising for Le Loop had been going really well. I was already well over my target of £1,200 when I got the news that my cancer had come back and realised there was no way I would be doing this event.

The training was also going well. I was walking or running up the stairs on the London underground. I was doing indoor cycling sessions aimed at improving my pedalling technique, my endurance and my hill-climbing abilities. Quite frankly I’m not sure how much progress I was making on that last front but I was at least trying! I even rode up and down Box Hill in Surrey five times in a row one day.

I had also been on a cycling training camp in Mallorca with BellaVelo in March. That trip was to kickstart my outdoor training for Le Loop… and that’s where my back and right hip starting hurting. I followed it up when I got back to London and that ended up in a diagnosis of metastatic breast cancer. Sadly I only managed one ride with my other club, the Balham Cycling Club.

All was not totally lost on the cycling front following my diagnosis. We agreed I’d start treatment the week beginning 20 May and this meant I could go ahead with the four-day BellaVelo cycling training camp that I was helping organise in the New Forest from 9 – 12 May. I was slow, as I knew I would be, but it was great fun.

It also meant I could go on a four-day tennis camp in Mallorca with three friends, as planned, from 13 – 17 May. I could have started treatment that week, but I think the consultant felt sorry for me. “Do your tennis,” she said, “before I take away your summer.”

Finally, on 19 May, I did the shorter version of the Etape Caledonia, a beautiful closed-road bike ride that starts and finishes in Pitlochry in Scotland.

I had signed up originally to do the full 85-mile route, again with my brother Peter. I was pretty confident I could do the full distance but I knew I didn’t have the strength to do it in the allotted time. There was no way I was going to suffer the ignominy of being swept up by the “broom wagon”, so I did the shorter, 40-mile route instead.

It was a bit of a logistical challenge to get to Pitlochry but I’m glad I made the effort. It was very special – and not just because I’m Scottish! The real reason, of course, was that I knew I was starting treatment in a few days’ time. I didn’t know (I still don’t) when – or even if – I’d next do another ride like that. Peter rode the first 13 miles with me to where the two routes separated then sped off to complete the full 85 miles.

The final cycling-related casualty this summer of my diagnosis is likely to be Ride London, the 100-mile closed road bike ride through London and the Surrey hills that’s taking place this year on 4 August. I got a place in the public ballot this year. This was to be the third and – I’d already decided – final time I’d do it. It was to be the grand finale to an amazing summer of cycling.

You never know. If I get off lightly on the side-effects front, get an energy boost,  manage to get my head in gear and keep cycling during these first few months of treatment, I may try the shorter, 46-mile version of Ride London. At the moment, I have no idea how feasible that might be. 

The pain in my hip disappeared for a while but it’s back now. Regardless of whether it’s related to the cancer or not, that pain is worse than any pain I have in my spine (where there’s definitely cancer) or in my ribs (where there possibly is).

My cancer will obviously affect my physical ability to do things as it progresses. It’s already doing so and we’re just at the start. Specifically, I fear my days of competitive tennis are over. Just like that. The stress on my back and hip is just too much.

As for running, well I’m not so sure on that front yet. I can’t bring myself even to try at the moment.

There’s obviously a weight-bearing thing going on here. My hip doesn’t hurt at all when I’m on the bike and my back only hurts a little. All the way through my treatment for primary breast cancer and beyondthe bike has always been part of the solution. I’m desperately hoping that continues to be the case.

So how did it all happen?

Here’s how I found out I had secondary breast cancer.

I developed backache and a sore right hip in mid-March while I was on my first ever overseas cycling trip, in Mallorca. The week-long trip was the first proper phase of the huge amount of training I was planning to do over the following few months that was to have culminated in a long-distance, three-day charity bike ride in France in July.

Initially I put the pain down to a mix of factors. For starters, while I’d done plenty of indoor training, I hadn’t ridden much at all outside or for any distance over the winter, and here I was doing back-to-back 50-75 mile rides involving quite a few hills. Also, I wasn’t using my own bike. While the rental bike was far better than mine and I loved it, I figured I was probably riding in a different position and that that was part of the problem. I hoped I’d just strained my back and hip and that it would soon get better. Interestingly – and fortunately – while the pain was at times quite bad, there was no pain at all when I was on the bike and cycling.

The pain persisted when I got back to London, although it would come and go. The most common place to which breast cancer metastasises or spreads is the bones and I knew backache was a potential symptom of it having spread to the spine. The pain was worse at night and when I was lying down. I did some reading and discovered that these too were signs of “bone mets” in the spine.

I very rarely get backache of any kind. Pretty quickly therefore, I decided to contact the consultant oncologist who treated me for primary breast cancer in the summer of 2015 and ask her advice, hoping all the while that it was just a sprain and that it would go away soon.

That was in late March. The consultant said it made sense to investigate further, so I had some blood tests done the following week.

The following weekend, I held a games afternoon at home to raise funds for the charity I was going to be doing for the bike ride in France in July. Other than the intermittent back ache and the periodic hip pain (the latter had in fact almost gone by then), I felt as fit as a fiddle. This fundraiser had been planned for ages and, at that point, while I was worried, I was still hoping the remaining pain would disappear with time.

That hope all but disappeared when the consultant subsequently called to say some of the blood results “weren’t entirely normal”. It made sense to follow up, she said, and a PET CT scan was being arranged for the following week. The writing was on the wall.

Despite this big shadow hanging over us, my husband and I managed to have a lovely Easter. The pain in my right hip had gone away completely at this point. As for the pain in my back, it sometimes disappeared for days at at a time, it always came back.

In the now forlorn hope that I would still be doing the various cycling events I had planned for the summer – or perhaps it was just to make myself feel better – I went out training on three of the four days of the Easter weekend. I even set myself a new speed record, reaching just over 40mph on a descent in Surrey.

My husband came with me on two of the rides. We don’t usually ride together but I think we were both aware that our lives were about to undergo a massive change and wanted to enjoy each other’s company while things were still relatively normal.

I had an appointment with the consultant the day after the Easter weekend, on 23 April. This was a couple of days before I had the PET CT scan and it was to have been my regular annual review with her. The consultant knows from having treated me before that I like facts and straight talking. So when I asked what she thought the problem was, she told me that, going by the blood test results, she strongly suspected that the breast cancer I’d been treated for more than three years earlier had spread to my bones and infiltrated my bone marrow. We even talked through potential treatment plans.

Among other things, the level of a specific breast cancer marker (CA 15-3) in my blood was very high. While this was “meaningless in itself”, I also had anaemia. The two things together clearly spelt trouble.

A week later, and the results of the PET CT scan confirmed what the consultant had predicted – “bone metastases and bone marrow relapse”. As well as there being cancer in my bone marrow and in three vertebrae, there is a lesion in my left-side rib area and there are “areas of less significant scattered bone disease”. As for my right hip, while there are no obvious signs of cancer in the hip itself, the pain may well be related in some way to the diagnosis. Then again, it may not be.

Thankfully our two young-adult sons were away at the time. We had time to digest the news ourselves and to plan a strategy for breaking it to them.

Since the PET CT scan, I’ve had numerous additional blood tests, a bone marrow biopsy, an MRI scan of my spine, and I’ve started treatment.

I have, of course, had to withdraw from the charity bike ride in France in July. More on that later.

Treatment – a reluctant trailblazer

“A trailblazer on a path you don’t want to be on.”

I paraphrase slightly, but that’s what the specialist breast cancer nurse at the hospital where I’m being treated said I was.

I have to say I was touched by the huge degree of empathy with which the nurse said it. This was just after the consultant told me that the treatment she was proposing for my secondary breast cancer was a combination of drugs that has just been made available under the NHS in England for women in my specific situation.

Given together, the drugs have been shown to improve what’s called “progression free survival”, ie the length of time patients live without their disease getting worse, and so delay the need for chemotherapy.

This latest development has been described as “fantastic news” for women such as me. The nurse was spot on with her description. I’m the first person at my stage of the disease and at my stage of treatment to have this therapy at the hospital trust where I’m being treated. I’m definitely grateful, but it’s a funny kind of gratefulness.

I started treatment on 22 May and I’m trying to focus more on the fact that the consultant is hoping for a “durable clinical response” than on the “significant, unavoidable or frequently occurring” risks of the treatment that are ticked on the consent form (see image).

The drugs are abemaciclib and fulvestrant – the brand names are Verzenios and Faslodex respectively for anyone who’s interested.

Abemaciclib is taken continuously in 28-day cycles as tablets – one tablet, twice a day, 12 hours apart. Fulvestrant is given as two injections – one in each buttock, not pleasant – each of which takes a couple of minutes to administer. You’re given it on Day 1 and Day 15 of Cycle 1, then on Day 1 of Cycle 2 and all future cycles – so that’s every two weeks for the first three doses, then once every four weeks.

You stay on these drugs for as long as they’re keeping the cancer in check and you can manage the side effects. Or, officially, for “as long as the patient is deriving clinical benefit from therapy or until unacceptable toxicity occurs”.

It could be a few months before we find out whether the drugs are working or not. If they’re not, you move straight away on to the next line of treatment. As for toxicity, the big worry with abemaciclib is diarrhoea. It’s a very common side effect and it can be so severe that the dose has to be reduced or a break in treatment is required. Three weeks in and I’m extremely relieved to report that I have got off very lightly indeed on this front. That may be partly explained by the fact that one of the side effects of the painkiller I’m on for the pain from the “bone mets” I have is constipation. I like to imagine the two drugs battling it out together inside me for supremacy.

You’re under close medical supervision, especially in the initial phase of treatment. You have blood tests every two weeks for the first two months, monthly for the following two months, and then as needed. You have scans every few months to check whether the drugs are working.

The cancer is in my bone marrow and bones, most significantly in my spine. Bone mets weakens your bones and puts you at risk of fracture, so I’m also back on the bone-strengthening drug, zoledronic acid or Zometa. I have that monthly too – via infusion, like chemo, on the same day I have the fulvestrant injections. The infusion itself takes 15 – 20 minutes. Zometa can also ease the pain that comes with bone mets. On the downside, as I mentioned when I started taking it before, it can also occasionally cause a very nasty condition called osteonecrosis of the jaw.

Fulvestrant is a hormonal therapy that aims to help shrink or slow the growth of metastatic breast cancer such as mine that feeds on oestrogen. Abemaciclib is what’s called “targeted therapy”, ie it’s a type of drug that targets specific characteristics of cancer cells, such as a protein that allows the cancer cells to grow in a rapid or abnormal way. Abemaciclib is one of a class of drugs called CDK4/6 inhibitors, which work by targeting two crucial cell division proteins, CDK4 and CDK6.

There’s a bit of a debate over whether CDK4/6 inhibitors are chemo or not. In the end, it seems it comes down to definitions.

This new combination treatment that I’m on hasn’t been in use long enough for it to be clear whether it also improves long-term survival, ie whether you live longer overall. In terms of quality of life, though, improvement in progression free survival is hugely important. The treatments don’t get any easier as your cancer gets worse. Not do the effects of the cancer itself, of course, so the longer it can be held in check, the better.

It’s very early days. Let’s hope I fare well on that trail I’m reluctantly blazing.

It’s back

This is the blog post I hoped I’d never write. A lot of people who aren’t yet aware of my situation will be shocked and upset by it. There are so many people I’d like to break the news to on an individual basis but that’s just not possible. Whoever you are, thank you for reading.

It’s back. I’ve been diagnosed with secondary breast cancer. The primary breast cancer for which I was treated “with curative intent” in 2015/2016 has spread and turned up in my bones – most obviously in three vertebrae in my spine* – and bone marrow.

The consultant oncologist who broke the news to me is the same doctor who treated me originally. She knew I knew this very well already but I guess she had no choice but to include it in the conversation; it was “treatable but not curable”.

So here we are, having recently started treatment following a diagnosis of secondary/advanced/metastatic/late stage/Stage IV breast cancer. Call it what you want, they all mean the same thing – a life-limiting illness with a very uncertain prognosis.

I was diagnosed formally on 30 April (though I knew it was coming) and I started treatment on 22 May. I’m on a new combination of powerful and aggressive drugs that are aimed at preventing the cancer from spreading any further for as long as possible. For some women, these drugs are game changers in terms of how long they keep the cancer under control. Like the consultant, we’re hoping they will result in a “durable clinical response” for me. We’re trying to be positive and to focus on the fact that I’m largely well at the moment and we hope treatment will keep me this way for a long time.

The good news is that “bone mets” from breast cancer can often be stabilised and managed for long periods of time, ie for a number of years or more. The fact that it’s also in the bone marrow complicates things. We can but see how it goes. The aim of treatment is to control the cancer, relieve symptoms such as pain, and reduce the risk of fracture – while at the same time trying to maintain a good quality of life for the patient.

It wasn’t inevitable, but anyone who follows this blog will know that I was at high risk of recurrence. Lord knows I wrote about it often enough. While I had in fact made peace with that, there’s very little I wouldn’t give for this not to have happened.

For a long time after finishing treatment for primary breast cancer, I lived in fear of it coming back. I worked very, very hard to get to a position where, while I thought about it often, I really no longer worried about it and just got on with living. Life was good; it was very good. I had conquered my fear and I was in a position of pragmatic acceptance that it might one day return. I’m really proud of myself for having got there. It wasn’t easy.

That mindset of acceptance is really helping me now. It’s a difficult time for us all but life goes on. We’ll aim to keep enjoying it and we’ll keep hoping for the best for as long as we can.

As always, writing helps. I’ve already got a few more posts in the pipeline – about my treatment, how I found out, how I’ve had to cancel big cycling plans I had for this year, etc. You know where to look if you want to read them. Wish me luck.

*As well as being in my bone marrow, the cancer is definitely in vertebrae T8, T9 and L4. There is also a lesion in my left-side rib area as well as “areas of less significant scattered bone disease”. My right hip hurts like hell sometimes but while I’m told there are no obvious signs of cancer there, it could well be related in some way to this new diagnosis – although, equally, it may not.