Well that didn’t last long

After four or five glorious days of respite during which once again I could eat whatever the heck I wanted, another blasted mouth sore developed. It was mild to start with but for the past few days it’s been as vicious, if not even more so, than the two I’d just got rid of

Managing these painful, spirit-sapping sores takes effort. For a start, when do you eat when frankly it’s the last thing you feel like doing? Also, what do you eat? 

Because of where this latest sore is, I can only open my mouth so far before it starts hurting. It also hurts to fully close my mouth. The other day in a cafe with friends, I had to cut the crusts off a toasted sandwich and cut the rest of the sandwich into tiny pieces before I was able to eat it. And rather than have a hot coffee, I had a healthy beetroot and carrot juice concoction that I drank through a paper straw. It was rather nice, if also rather expensive. 

And how do you brush your teeth without touching the sore and nearly fainting from the pain? I was always a hard-bristle kind of gal, but I have just bought some soft-bristle brushes.

And how often do you rinse with the various mouthwashes you have? They all sting.

When I had my appointment with the consultant oncologist who’s treating my secondary breast cancer and me on Thursday this past week, this new sore wasn’t causing too much trouble. I had thought that was as bad as it was going to get. I therefore bravely and, with hindsight, in far too cavalier a manner, told the consultant I’d stay on the highest dose of the tablet that’s the cause of the problem for another month. 

However, rather than improve, things got worse. I’m now seriously thinking that I will indeed have to reduce the dose. I’d really rather not do that but I may well have to as this really is no fun. If another sore appears after this one, my mind will be made up. I think. It’s a bit like a “good” childbirth. Once it’s over, you forget how painful it was. Until the next time.

That’s the bad news from this week. It’s been a busy one on the health front, with plenty of decent or even good news. I need to focus on that, really.

The chest x-ray I had on Wednesday was clear. That means that the new treatment regime of two drugs – mouth-sore inducing everolimus and exemestane, both taken as tablets, daily – hasn’t done any damage on that front. 

Also, the results of the biopsies on the pigmented lesions that I had excised on my right leg and foot, also four weeks ago, came back clear. We had suspected they would, but it’s good to have that confirmed. The wound on the sole of my foot that wasn’t healing well is looking much better. 

There’s more. The blood tests I had on Wednesday – immediately before I had the chest x-ray – showed that the all-important tumour marker is stable compared with two weeks ago. That’s the first time it hasn’t risen in many, many months. It’s early days but it shows that perhaps the new treatment will have a dampening effect on the tumour activity. That makes the mouth sore issue even more frustrating.

My kidney and liver are functioning ok too. However, my bone marrow is still struggling (the secondary breast cancer that I have is in my bones and bone marrow). 

I can walk for miles on the flat without any trouble but increasingly just walking up stairs had been making me breathless. The first thing I said to the oncologist when she asked how I’d been was that I reckoned my haemoglobin level had taken a bit of a dive. That was indeed the case.

The bottom line is that after seeing the consultant on Thursday morning, I spent four and a half hours in the Ambulatory Oncology Care Unit at the hospital having a blood transfusion. It takes around two hours to transfuse a single unit of blood and I had two, the same as on the two previous occasions where I’ve needed help on the red blood cell front.

I do feel much better now, energy wise. Never one to waste a good blood transfusion, I have planned two bike rides for this week, one short and one a bit longer. This will be the first exercise I’ll have done other than walking for over a month, specifically since I had the procedure done on my foot. Fingers crossed my foot wound and energy levels behave and that I manage if not both, then at least one.

Distractions are good. They take my mind off what’s going on in my mouth. There have been a few this week. 

Work continues, for example.*

Monday saw us have a meal out – inside at a pub restaurant – for the first time in many, many months. Gathering at the bar is not yet allowed so it’s all table service but it pretty much felt like nothing much had changed.

We went to the pub again (a different one) on Thursday evening to celebrate a friend’s 50th birthday. This time we were outside, as more people are allowed to gather together outside than in.

The wind did its best to blow us away; it did in fact blow a glass of wine into my lap! However, we held firm and had a lovely evening. I’d only been planning to stay for an hour as I’d been feeling miserable earlier that evening. However, such was the power of the blood transfusion I’d had that afternoon that I not only went out but stayed as long as everyone else, ie until closing time. I also remembered that white wine stings less than beer on the mouth sore front so, after one beer, white wine was my tipple of the evening.

Both those nights out were organised well in advance. On Saturday, though, we did something on impulse. Yes, read it again, on impulse! We went to the cinema and, as if that weren’t enough, we went for a meal afterwards – without booking!!!! There was social distancing in the cinema itself but it’s been a long 14 or 15 months since we’ve done anything that remotely “normal”. 

The restaurant was Turkish, where we knew we’d be able to order lots of mouth-sore friendly dishes such as all sorts of tasty but not spicy dips with lovely warm, soft bread.

The film we saw was Nomadland, which was great to see on the big screen with all those amazing American landscapes.

I watched a lot of the film through tears. If you’ve seen it and you’re aware of my situation, you’ll understand why. This phrase from one of the characters, who has terminal cancer, spoke volumes to me: “I don’t want my sail boat to be in my drive when I die.” 

You can take that literally or figuratively. In my case, much as I’d love to do it, heading off on a yacht is not practical. I hope we can head off on foreign trips soon but, in the meantime, there are plenty of things close to home that bring joy.

I’m feeling quite sentimental so I’m going to mention a few.

There’s new life all around. Our revamped garden is bursting into life and everywhere I go it seems I see baby birds. With the ones in the photo here, at Kew Gardens this week, there was no drama – unlike the previous week at Richmond Park.

A friend giving me as an early birthday present a beautiful throw that she’d crocheted herself.

Another couple of friends handing in a surprise bunch of flowers.

Our sons, who are away at uni, WhatsApping us photos of things they’ve cooked for supper. Or one of them pretending he’d had his nose pierced and using it to encourage me to have mine done; I’ve been saying for ages that I want to do it but I’m too nervous.

One of my brothers who lives in Glasgow going out of his way to take one of my sons out for dinner when he was on a work trip in the north of England, near where his nephew’s at uni.

The many messages I get from friends asking how I am and sympathising with me on my “issues”.

And, most recently, my husband presenting me with a box of Tunnocks tea cakes “because they’re soft and they won’t hurt your mouth”.

Allow me a schmaltzy ending: “Take joy in the small things because one day you’ll realise that they were the big things.”

*My story about working with an advanced cancer diagnosis is featured in a campaign that has been launched by an organisation called Working with Cancer. I’m upfront about my prognosis right at the start so please only read it if you’re prepared for that – https://workingwithcancer.co.uk/2021/05/11/maureen-kenny/.

Fourth time lucky with the needle

I’m writing this sitting on the sofa feeling totally exhausted. I suspect my body is reacting to the fact that it took four – yes, four – attempts at the hospital today to find a vein into which they could inject the radioactive tracer for the PET CT scan I was to have.

We got there eventually but at one stage – I think it was during the third attempt – I started sweating and feeling queasy and I genuinely thought I might faint. I closed my eyes, rested my head in the hand that wasn’t being used for the injection, took some deep breaths and, thankfully, it passed. I felt sorry for the lovely chap doing his best to find a decent vein; he felt sorry for me, having to go through this. In the end, I had the injection through a vein in the back of my hand, the second attempt in that area.

Injection over, I then had to sit quietly for an hour while the radiotracer worked its way round my body before then spending half an hour lying on my back in the scanner with my arms stretched out behind my head, taking care to stay as still as possible for the whole time.

Scans and needles generally don’t bother me but today was taxing to say the least.

This was my first scan since starting on capecitabine oral chemotherapy at the end of May. It’s to measure how this latest treatment is working. That is, is it having the desired effect of stopping the secondary breast cancer that has spread to my bones and infiltrated my bone marrow from spreading further?

Until very recently, all the signs were positive. I’d moved from a three-week cycle comprising two consecutive weeks on chemo tablets followed by one week off to a four-week cycle of one week on followed by one week off and the same again.

My haemoglobin level was again within the normal range – albeit at the lower end – for the first time since April.

As for side effects, I was tolerating capecitabine well. I’d been feeling fine on the whole. Walking for miles, going on long bike rides, playing tennis. Also, no diarrhoea whatsoever; this can be a big problem. I’d been getting some tingling in the fingers of my left hand and my toes and the surrounding area of the soles of my feet had been feeling kind of numb – even more numb than usual (a side effect from the chemo I had as part of my treatment for primary breast cancer five years ago now, known as chemotherapy-induced peripheral neuropathy). It’s undeniably annoying and irritating but it is tolerable. There’s still no pain from the cancer itself.

Importantly, the relevant tumour marker had been falling with each cycle of capecitabine. Until this latest cycle, that is. The number is not up by much, relatively speaking, but it’s still up. I can’t deny it was a bit of a body blow when the consultant gave me that particular piece of news at my clinic appointment with her last week. “I’m never going to be stable, am I?”, I think was my response.

Capecitabine is my second line of treatment and I started cycle #6 this evening. With the first line (see previous blogs), the tumour marker kept going down until it got to a certain level – at which point it started going up again and just kept going up. We eventually moved on from that treatment when scans showed signs that the cancer had progressed. Will it be the same with capecitabine or will we manage to keep that tumour marker subdued and hope this recent rise was a one off?

I get the scan results in a couple of weeks’ time. I’ll have another round of blood tests beforehand and will get both the scan and blood test results at the same time. We’re clearly hoping for no progression but we have to be on the lookout for what might be causing that marker to rise.

I could have had the scan next week, in which case there would only be a week between having it and getting the results. For various reasons, I chose this week, even though it means a longer wait.

Pandemic restrictions permitting, we’re planning some nice adventures over the next couple of weeks but I’ll no doubt find myself increasingly thinking about what the results might be the closer we get to the date of my next appointment.

I’ve had many, many experiences with needles in recent years – to have blood taken, to enable the insertion of a cannula so I can be given iv chemotherapy or iv antibiotics or blood transfusions, or, as was the case today, to have a radiotracer injected for a PET CT scan. In all that time, there have been very few problems. Regardless, you always have some degree of concern that it won’t go well, especially when you’re aware that your veins are most likely damaged from earlier iv chemo. This is as good an opportunity as any to express my gratitude to the fabulous phlebotomists and oncology nurses at St George’s Hospital in south west London where I’m currently being treated. I know it’s their job, but the care they show and the tenderness with which they treat you make things so much easier. 

As for the results of this latest scan, what will be will be. In the meantime, let’s take each day as it comes.

Note: This is my first post since early August. A lot has happened over the past couple of months and for a while I really didn’t feel like writing. It feels good to be in the saddle again. 

Please don’t ask to see my feet

I have three pieces of good news.

One, after getting pretty positive blood test results on Tuesday, I started on round three of oral chemo that evening.

Two, I have had a post-lockdown haircut.

Three, in another very welcome development, it turns out that the seven cases of COVID-19 that had been diagnosed at the care home where my mum lives in Glasgow were false positives.

I had blood tests done on Monday, on Day 21 of my second three-week cycle of the capecitabine that I’m taking as treatment for secondary breast cancer. I saw the consultant for the results the following day. The relevant tumour marker level has fallen again by a huge amount. In just two cycles of chemo, it has more than halved. It’s only one part of the jigsaw but that’s very good news.

My haemoglobin count was fine; it has held steady since the blood transfusion I had around a month ago after my first round of capecitabine. My white blood cell count is also healthy enough, and within that, without any additional pharmacological support, my neutrophil count is ok too. Various other measures – to do with my liver, for example – are also fine.

At my appointment with her, the oncologist talks me through the results and asks how I’ve been. She has previously warned me specifically to watch out for two main side effects of capecitabine – diarrhoea and palmar-plantar or hand-foot syndrome, where your hands and feet can become red and sore and swollen.

No diarrhoea whatsoever, I report happily. “Hands and feet?”, she asks. Fine, I say, showing her my hands. My nails never recovered from chemo first time round and the treatment I was on for a year before I moved on to this current treatment made them even worse. They’re not at all painful but they are not pretty. That’s just my nails, though. My hands themselves are fine, with no sign of the dreaded syndrome. 

This is going well, I think. And then it hits me. “Please don’t ask to see my feet, please don’t ask to see my feet,” I think. I mustn’t give her any cause for concern, I think. My left foot in particular is a bit of a mess at the moment, with a couple of large and unsightly blisters at varying stages of healing (reasons below). What if she suspects they’re caused by the chemo?

Anyway, she doesn’t ask – at least not then. Next comes the physical examination. I undress to the waist and get on the examination table. The consultant does the usual (usual in normal times, that is; this is the first time this has happened since February), feeling for lumps and bumps in my chest and abdomen and getting me to take deep breaths in and out while she listens with her stethoscope. 

And then it happens. While I’m still on the table, she says “shall we have a look at your feet?” Shit. As I take my sandals off, I start wittering on about how she has to believe me when I say that the fact my feet are a mess has nothing to do with the treatment and everything to do with new pumps I bought and wore without socks and ended up with several big and really painful blood blisters and one popped and I had to cut away the skin because it was making it worse and that’s why it’s got a plaster on and I’m listening to myself and I’m saying to myself, “Maureen, shut up, just show her your feet” but I keep going and now I’m telling her – and the breast cancer nurse who’s also there – how I have a permanent flap of hard skin under my big toe as a result of a bunion-removal operation a million years ago that blisters really easily, and, really, really, this has nothing to do with the treatment.

I finally shut up. I take the plaster off to expose all. She looks and says, “that’s fine, it’s healing”, applies a fresh plaster, checks between my toes, and we’re done.

Next time, I’ll just show her.

Incidentally, these side effects can develop at any time while you’re on this drug. You can have been on it for months without any problems and then they appear.

Anyway, the end result is that I‘m on Day 3 of round three of capecitabine – at a slightly higher dose than I was on for the first two cycles. 

Everyone has a maximum dose based on their body surface area. I started on 85% of my maximum dose and now I’m on 87.5%. Ideally it would have been 90% but the tablets only come in certain strengths and that’s the closest they could get. It doesn’t seem much of an increase but these are highly toxic drugs and I guess you have to take things slowly. 

If there’s evidence that the capecitabine (also known as Xeloda) is working well  and you’re also tolerating it well, you can be switched from a 21-day cycle of two weeks on and one week off to a 28-day cycle of one week on, one week off, one week on, one week off. On this longer cycle, you have less capecitabine overall even at the higher dose and your body has more recovery time within each cycle. IMG_20200712_133309898You also have fewer blood tests and fewer hospital trips; you have four weeks at a time to live your life, as it were, rather than three*. You may also be switched if you’re not tolerating the three-week cycle well. Luckily it looks as if I might be in the former category.

In terms of knowing whether the drug is working, we currently have the CA 15-3 tumour marker level and other blood test results to go on. My first scan or scans to assess the full impact will be sometime in the autumn.

As for the haircut, it looked great when I left the hairdressers – all moussed up, blow-dried and straightened. It won’t last five minutes under a bike helmet, I thought. Having done several bike rides since, I have been proved right, but at least I know what it can look like!

I wrote about the COVID-19 scare at my mum’s care home in my previous blog post. A few days later, the seven people who had tested positive were retested and the results came back negative. To everyone’s huge relief, the original results were deemed to have been false positives. I’m getting closer and closer to deciding to go up and visit, even if it’s through a window. The fact that two friends have just very recently lost their mums has made me even more aware that this is something I have to find a way of doing, pandemic or not.

*It’s hard to keep everything in sync when you’re on treatments with different dosing schedules. For example, I have to go back to the hospital next week, just one week into my three-week cycle, for the other part of my treatment. That’s the monthly injection of denosumab, the bone strengthener that’s given to people like me whose primary cancer has spread to their bones, to reduce the incidence of “skeletal-related events” such as fractures, radiation or surgery to the bone, and spinal cord compression. Hopefully from next month I’ll be able to give myself that injection at home.

Back on treatment, feeling mellow

Thankfully the break in my treatment for secondary breast cancer lasted only five days.

I saw the consultant on Tuesday to find out how my blood was looking after the blood transfusion and filgrastim injection the previous week. The answer was good and I was straight on to my second round of capecitabine oral chemotherapy that very evening.

I’d had blood tests the day before. The results showed that the transfusion and injection did what they were expected to do on the haemoglobin and neutrophil front respectively. My haemoglobin count was up by a whopping 36% (it has to be said it was rather low to start with) and my neutrophil count had almost trebled.

Apparently the rise in the haemoglobin level could be accounted for partially by the fact that I’d been doing a fair amount of cycling. More on that below. Also, we don’t know how much of the fall was due to the new treatment and how much was due to the cancer. Whatever the reason, my haemoglobin was at a decent level.

The consultant is as pleased as I am about the big fall in the tumour marker level. The details are all in my previous post but, after just one cycle of capecitabine (two weeks of daily tablets), it had fallen by almost a third. While the chemo had a negative effect on my bone marrow function, it also clearly had a marked anti-cancer effect. The sooner I got back on treatment the better, the consultant and I agreed. The only objective of the breast cancer that’s already spread to my bones and infiltrated my bone marrow is to grow and spread further and cause even more havoc. You don’t want to leave that untreated any longer than is absolutely necessary.

I’m on the same dose of capecitabine as during the first cycle – 85% of my maximum possible dose, three tablets on the morning and four more 12 hours later. Because there was such a dive in my haemoglobin during the first cycle, I’m to have a blood test half way through this second cycle to check how things are going. So it’s back to the hospital – I’m lucky to live so close – first thing on Wednesday this coming week to have blood taken. The consultant will call me later that day, hopefully to say it’s ok for me to continue with the second week of the tablets. If things have gone awry again… well, we’ll face that bridge if we come to it.

I should have been back at the hospital on Thursday for my monthly injection of the bone strengthening drug, denosumab. However, the consultant brought the appointment forward so I wouldn’t have to make yet another trip to hospital that week. Instead I had the injection at the day treatment unit when I went to pick up my capecitabine tablets a couple of hours after having seen the consultant.

The consultant again emphasised the need for good foot care given the fact that a common side effect of capecitabine is the dreaded palmar-plantar or hand-foot syndrome, where your hands and feet can become red and sore and swollen. This, I’ve just found out, is caused when small amounts of chemo leak out of your capillaries, affecting, most commonly, the skin on your hands and your feet. Nasty.

So what does good feet hygiene entail?

To start with, plenty of moisturising, and, basically, socks at all times – even at home. Yes, really. No more padding about bare-footed  in the house, to lower the risk of getting small cuts that might get infected. No wearing flip flops or sandals that have that a strap that goes between your toes in case the friction caused by the strap causes the skin, which is likely to be fragile, to break. Given that I’m not prepared to walk round the house in trainers or shoes, that leaves me pretty much with the option of that footwear which is de rigeur for Young Folk but pretty much a criminal offence for anyone over the age of 30 – sliders and socks!

IMG_20200627_183057200We used to laugh at our dads for wearing socks with sandals but now it’s an art form. Even if it does become the norm for me indoors, I’m not sure I could ever own it quite to the extent our elder son is doing in this photo!

On the coronavirus front, my thoughts are now turning to when I might be able to go up to Scotland and see my mum and my brothers and their families. That would be very nice indeed. Our younger son gets access to his second year university accommodation in Leeds at the beginning of July. He’s keen to go up sooner than later to settle in and spend some time with his new housemates. I can’t say I blame him. A plan is forming; we could drive together up to Leeds, drop him off then drive on up to Scotland.

I don’t want to get ahead of myself but it’s nice even to think that I might get to see my mum again soon. I haven’t seen her since November. She’s in a care home in Glasgow that thankfully has managed to keep the coronavirus at bay, but she’s struggling with the lack of contact. My brothers up in Glasgow have been as brilliant as ever. They’ve “visited” regularly and talked to her, sang with her and played games with her through a slightly open window but it’s hard on everyone.

Going on a trip – if and when it happens – will be weird. Everyone’s experience of the pandemic is different but it has made a lot of people’s lives much smaller in a geographical sense.

In my case, my policy of “not shielding but being careful” and working from home means that until a couple of weeks ago I hadn’t been inside a building that wasn’t my own house for more than three months – excluding the hospital and the odd cafe for a takeaway coffee or cold drink when I’d been out for a walk or out on the bike.

Also, other than going on long bike rides, I hadn’t been travelling much further than a two-mile radius from the house. The only car journeys I’d been on until very recently were to the hospital, which is less than two miles away. I really should cycle there but I still can’t bring myself to lock my bike up at the hospital. I have PTSD from April 2019 when my bike got stolen outside the breast cancer centre on the very day my diagnosis of advanced breast cancer was confirmed. (Note to self: “You really need to get over that. Just make sure you have decent locks.”)

I know there are lots of issues and challenges regarding the loosening of lockdown restrictions. For me personally, it’s been a joy. Playing tennis in the sunshine with friends you’ve been keeping in touch with through WhatsApp or the odd Zoom call. Meeting up with friends on the common at the bottom of our road to share socially distanced coffees or cold beers or Prosecco on picnic blankets. Stopping off for cold water, a cup of tea and a chat at friends’ houses on the way back from bike rides on scorching hot days. And, more recently, an even bigger change, and all the more pleasurable for it – suppers with friends in their back gardens. One was local; the other I drove to. If it hadn’t been for the pandemic, we’d have taken public transport and probably got a taxi back; I’m not ready for either yet if I have the choice. I’m still being careful, like any sensible person.

IMG_20200627_134204830_HDRI’m four days into this second round of oral chemo and I’m feeling good. I’m writing this sitting on the sofa, feeling mellow and enjoying the view – of flowers inside and out, bike sheds and bins, and blue skies and clouds.

In my previous blog, I said I was going to put that blood transfusion  to good use by going on a long bike ride. Father’s Day dawned last Sunday, the weather was beautiful, and off my other half and I went – on a beautiful, flat and slow 100 kilometre cycle from home in Balham in southwest London into the leafy lanes of Surrey and back. It was my husband’s first 100k ride. Flat or not, that is a fair distance for anyone. I‘ve done a fair few rides of that distance and more, but I‘d be lying if I didn’t admit to being amazed and grateful that, with all this shit going on inside, I can still manage it.

We got back just in time to have showers before settling down to the classy Father’s Day supper our two boys had prepared while we were out. It was pretty much a perfect day.

A quick update and it’s rather a mixed bag

Let’s start with the good news. I’ve no idea what its relative importance will be longer term but I’m a glass half full kind of gal and I’m happy to enjoy it for what it is, so here goes.

After just one cycle of chemotherapy, the breast cancer tumour marker that had been rising since last November has gone down by almost a third. 

The behaviour of this CA 15-3 marker is very much only one part of the overall picture. However, the fact that it’s fallen is a clear sign that the chemo treatment that I started just three weeks ago – oral capecitabine – is dampening down at least some of the cancer activity that’s going on inside my body. The level had been rising faster in recent months and while a reduction by a third only takes it down to what it was at the end of March this year, in proportionate terms that’s a big fall. That has to be a good thing. 

IIMG_20200618_142526718f I’m not rejoicing, it’s because that’s only one part of a substantially bigger and more complicated picture. Also during this first cycle of chemo, my haemoglobin count took a huge dive. Instead of picking up my second round of capecitabine tablets on Thursday afternoon so I could start taking them the following day, I spent upwards of four hours in the day treatment unit at the local hospital having a blood transfusion.

My haemoglobin count had been falling for a few months and this was one of a combination of factors that had led to my coming off the treatment I’d been on since my initial diagnosis of advanced/secondary/metastatic breast cancer in spring last year. I had known that if the level were to fall much more, a blood transfusion would probably be in order. That’s precisely what happened.

Coincidentally, it was almost a year ago to the day that I had a transfusion for precisely the same reason. Then, I was really taken aback when the consultant told me what she was advising. I had only recently had the diagnosis confirmed and being told I needed a blood transfusion really brought home to me the seriousness of what was happening. This time round it couldn’t have been more different. It wasn’t quite “hey, ho, let’s go“, but there was no drama, just an appreciation of the effort that’s going into keeping me as well as possible and a ready acceptance on my part that developments such as these are now part of my reality. 

There are two aspects to my disease. The cancer is in my bones, weakening them as it tries to spread further. It has also infiltrated my bone marrow, reducing my body’s ability to make healthy blood. Both aspects need to be managed, along with the side effects of the drugs. That’s what I mean about the fall in the tumour marker only being one part of the overall picture.

The bone marrow issue is a pretty big part of that same picture. Even if my haemoglobin count had been healthier, I wouldn’t have started round two of chemo. That’s because my neutrophil count too was below the level that’s deemed safe to carry on with treatment. Neutrophils are the white blood cells that fight infection.

The fact that capecitabine can also cause anaemia and neutropenia is an additional complication. It’s hard to determine precisely how much of what’s happening on the blood front is caused by the cancer and how much is down to the treatment.

As well as having the transfusion, I had an injection of the white blood cell booster, filgrastim. I’d been used to having this as standard under my previous treatment but we’d gone without during this first cycle so we could see how I’d manage on the neutrophil front under the new treatment without support. Not brilliantly, it seems.

So what’s next?

Well, for starters I get to enjoy the extra energy that comes from having two bags of healthy blood coursing round my body.IMG_20200618_155048864 There’s no denying I’m feeling perkier than I felt last week. There is, literally, more “blood in my cheeks” – a saying I’d never really thought much about until now.

On a more serious point, I go back for more blood tests on Monday to see how things are looking and we’ll see what the consultant recommends when I see her on Tuesday. 

Hopefully I’ll be able to go back on treatment. None of this is abnormal in the context in which it is happening. As with many powerful drugs, it can take some time to find the right dosage of capecitabine. I guess there might at least be a discussion around that. As it was, my starting dose was 85% of what it might have been.

As for side effects that I’d notice, I’m relieved to report that I’ve nothing to report. I have been aware of a little bit more tingling in my feet than usual but I can’t at this stage say that it’s anything other than the mild chemotherapy-induced peripheral neuropathy I have from the original treatment I had for primary breast cancer in 2015. It can get worse in the heat and when I’ve been doing a lot of cycling. The weather’s been great and I have indeed been cycling a fair amount.

Talking of cycling, I’m planning on putting this transfusion to good use in much the same way as I did with the last one. It’s midsummer weekend and a long bike ride is on the agenda for tomorrow. When I’m out there, I’ll be even more appreciative than usual that I’m very much still in the saddle.

 

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.