A tale of two weeks

Our trip to Cornwall was just what we needed. There’s something about big open beaches, rugged coastlines and fresh sea air that’s good for the soul. 

My husband and I were away from our home in London for nine days, taking advantage of the two-week break between me finishing my first cycle of intravenous chemotherapy and starting my second. It was a last-minute decision to go but I’d been feeling really well after a turbulent few weeks and it made sense.

We would gladly have stayed away longer but I had to come back home to London for bloods tests on 20 September in advance of starting a couple of days later cycle 2 of the new treatment regime I’d begun a month earlier – iv chemo (paclitaxel) to try and stop my secondary breast cancer from suppressing my bone marrow and preventing my body from making healthy blood. Or at least to try and stop it doing so to the extent it had been, where I was having to have regular blood transfusions.

The Eden Project, isolated beaches and coves, rugged rock formations and crashing waves, stunning coastal walks, sea swimming, beautiful harbours and villages clinging to impossibly steep streets, boat trips, ferry rides, freshly caught seafood, local beer, local gin, cream teas, surfers. That was our week (and a bit) in Cornwall.

The following week, back in London, couldn’t have been more different. There were blood tests, a blood transfusion, iv chemo and a third dose of the Covid vaccine.

Back to Cornwall for the moment. Its coastal paths are famous for being hilly and steep. With the bone marrow suppression, my haemoglobin – and consequently energy – levels are pretty low. I’ve had to stop doing many of the sports I used to take for granted. Exercising now largely consists of gentle walking and swimming. 

Before we went away, we had no idea how much walking – strenuous or otherwise – I’d be able to do. We soon found out and, once we got the measure of things, it was better than we might have anticipated. Walks that would normally have taken two hours took four, but that was ok. We weren’t in a rush. There were several short-lived bouts on my part of melancholy regarding my illness and we reminisced over the week about the big, long walks we used to do. Overall, though, our mindset was that it was a huge positive I was doing these walks at all.

I was fine on the flat but as soon as the gradient started to climb, my legs turned to lead and I could feel my poor heart go in to overdrive. I had to stop for breath every few minutes, if not even more regularly.

I genuinely wondered more than once how fast a heart could safely beat. I also thought that sometimes it’s best not to know the challenges ahead. That goes for life as much as it does for steep Cornish footpaths.

We travelled round, visiting lots of different places, keeping to the coast as much as possible.

We made the holiday last as long as we could. We stayed away one more night than we’d planned so the drive back to London would be three hours rather than six. Our hotel that last night had a heated outdoor pool and I went for a swim the following morning. The previous day, we’d done a five-mile hike – out along the cliffs and back along the beach. In true Cornish style, it was indeed hilly.

The scenery throughout the whole trip was spectacular and I was genuinely happy that I was able to do the amount I did. It’s hard to let go but, for peace of mind, you have to.

One thing didn’t register with me at all while we were walking and it really should have done. In addition to the bone marrow suppression, I have extensive bone mets (ie the cancer is in many of my bones including my spine and pelvis). Bone mets can cause extreme pain but I’m in no discomfort whatsoever in that regard.

On our way home, we stopped off at the hospital and I had bloods taken for testing. I was to see the consultant for the results the following day and I hoped I would start my second cycle of chemo the day after that. Back at the house, we started the mundane tasks that always follow a holiday. We talked about what a superb time we’d had.

It came as rather a shock, a few hours later, to get a phone call from the hospital telling me my haemoglobin level was lower than it had ever been and could I come in for a transfusion of two units of red blood cells the following day? This would allow me to go ahead the day after that with the first session of my second cycle of chemo. I was gobsmacked. I genuinely had no idea it was so low. I’d got used to being breathless during the walks, but overall I was feeling great. 

Back to earth with a jolt. I now couldn’t help thinking that the results of all the other blood tests they’d done would be bad too. Talk about a mood change.

Thankfully I was wrong. When I saw the consultant the following day, she told me that everything else was largely good. Significantly, the tumour marker had fallen substantially. That was all good to hear.

I had the blood transfusion and then went ahead with the first treatment session of Cycle 2 of iv chemo. We’re now a few weeks on and I’ve finished cycle 2. Each cycle lasts 28 days and I have treatment on Days 1, 8 and 15. It’s all going well except on one front. The chemo has damaged the veins in the arm where I have it and it’s becoming increasingly difficult to find a vein into which to insert a cannula for chemo. It looks like I may need to have a port inserted. More on that another time.

So far on chemo I’ve had no nausea, no mouth sores, no change in taste and no gastrointestinal problems. My hair is not falling out as such although it is thinning and comes out in clumps when I brush it if I’m anything other than extremely gentle. You might not think it from this photo, but I did in fact leave a substantial amount of hair in Cornwall.

I’m due to have my next set of blood tests on 18 October, in advance of potentially starting cycle 3 of iv chemo on 20 October. They’ll check the tumour marker then as well. 

I won’t be surprised if I hear I’ll need another blood transfusion before going ahead with cycle 3. My haemoglobin level had gone down between sessions two and three of cycle 2 to just above where they recommend a transfusion. I was given the choice of having one and chose not to. If it falls further between now and the 18th, I’ll need one.

In the meantime, we’ve started our next adventure.

We’re on the tiny Scottish island of Tiree for a week’s holiday with one of my brothers, his wife and their 15-year-old daughter. Unlike the impromptu Cornwall trip, this has been in the diary for months. We didn’t know how my health would be when we arranged to come, back in May, but here I am, feeling well and doing ok. Getting here was an adventure in itself; we flew from Glasgow in the small 18-seater plane in the photo.

Incidentally, Tiree is almost totally flat so at least I won’t have to worry about any hills when we’re out walking!

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.

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.

Post-op progress report No 1: Biting off more than I can chew

I realised I’d bitten off more than I could chew when I found myself on my back on the living room floor, unable to get up, with no-one in the house to help. I know, funny image, but I wasn’t laughing.

That was on Monday afternoon. Andy and the boys had gone out for a couple of hours; I’d said I would be fine. I was being lazy and decided to do my post mastectomy/DIEP flap reconstruction tummy exercises on the floor just where I was. The alternative was to climb two flights of stairs – which I can do fine now – to the bedroom and do the exercises lying on the bed.

What I’d failed to take into account was that getting up from the floor would be so much more difficult than getting up from the bed. Even getting out of bed is still quite painful because of the strain on the hip-to-hip incision when you roll over from your back on to your side, then again when you swing your legs over the edge of the bed and yet again when you have to get into a sitting position on the edge of the bed so you can stand up. I still can’t use the operated arm (the right one in my case) for support and my left arm isn’t the support it normally would be as it still hurts from where all the needles went in for the various “lines”. So basically all I could use to get up from the floor were my legs and abdomen… and anything that stretches the incision too much is very painful.

Anyway, I managed to manoeuvre myself, still on my back, over nearer the sofa and somehow used that as leverage to get myself up and back on my feet. Or rather back on the sofa, which is where I spent most of the rest of the day. Lots of pain involved. Lots of swearing involved.

That episode notwithstanding, I think my recovery from the major surgery I had less than two weeks ago is going well.

It’s hard to believe we’re already on Day 11 post-op. You do make considerable progress day by day, but I still tire easily and there is pain involved in doing the most mundane things, even when you’re on painkillers. I spend a lot of time on the sofa, reading, watching TV (I’m on Series 2 of House of Cards and loving it) or writing. It still hurts to sit down and to stand up. Getting into bed is relatively easy at this stage. Manoeuvring while in bed is not.

Things are generally fine when you’re sitting down and not moving although there is a constant painful numbness on the underside of my right arm from my armpit almost to my elbow. I’m hoping that will go in time. I’m following instructions and am doing next to no weight bearing or carrying with my right arm; also at this stage I’ve not to lift my elbow any higher than my shoulder.

On the upside, I can shower standing up although drying and dressing myself takes an age. I can stretch my legs out flat in bed; previously I’d needed a pillow under my knees all the time I was horizontal. I still can’t quite lie completely flat and sleep on my back propped up on two pillows with one cushion under my knees and another by my right side on which to rest my right arm.

I can more or less stand up straight, although once I’m on my feet it takes a good few minutes of loosening up to get there as everything tightens up when you’re sitting down and not moving.

Nothing hurts anywhere near as much as it did a week ago, or indeed even a few days ago. I can now laugh – a little – without doubling up in pain. It still really hurts to cough although not so much that I need to resort to the wonderfully low-tech but effective “bracing device” that you see in the photo – a rolled-up towel held together with tape. One of the nurses put one of these together for me when I was in hospital. If you press it onto your incision while you cough or laugh, it decreases the stress on your incision and you feel less pain than you otherwise would.

I can walk quite well and I make a point of going out – accompanied – for a short walk every day now. Yesterday I ventured out by myself for the first time – to the doctor’s surgery just round the corner to put in a prescription request for iron tablets (anaemia is common after major surgery and for the first time in my life I’m anaemic; I’m to take one tablet three times a day for the next three months).

I’m doing my arm and shoulder mobility exerises and abdominal exercises as directed; they’re going ok. We step them up in week 3 post-op. However well things are going, though, I think I’ll stick to doing the tummy exercises on the bed for a while yet!