Mother of God, the mouth ulcers

Spoiler alert: This blog includes multiple gratuitous references to a recently concluded and very popular UK TV series about police corruption.

Jesus, Mary, Joseph and the wee donkey, if it’s not one thing, it’s another.

The pain I’d been having periodically in my joints disappeared overnight when, a fortnight ago now, I started on my first cycle of the new treatment I’m on for advanced breast cancer. Also – and what a relief – the pain I’d been having in my feet for the past few months eased up massively. Now we’re sucking diesel, I thought, then wham, I get blasted with two horrendously painful mouth sores within days of starting the new drugs. God give me strength.

Mouth sores are a very common side effect of everolimus, one of the two drugs I’m now on (Document A in your folder). I’ve written before about how painful cold sores can be (Document B in your folder). Well mouth sores are like that, except they’re on the inside of your mouth and they’re even more painful. Just when you’d started to sleep well again as a result of the throbbing in your feet having eased off, you wake up at 4am from the pain of these mouth sores. The discomfort when eating is such that I’ve had to tell the boss, who does most if not all the cooking in our house, to stop putting vinegar in the salad dressing. Mother of God.

Has it been so painful that I’ve sworn? No comment.

I’d been given mouthwash to prevent mouth sores from developing and/or to alleviate the pain once they do develop. I’d been following the instructions to the letter, to the letter, I tell you; who knows, maybe they’d be even worse if I hadn’t been using it.

As for the sleeping tablets I was prescribed at my last appointment, I’ve used them twice. The first time I didn’t notice any difference; the second time I slept for nine hours (getting up once for the loo and half-waking when my husband got up). Now we’re cooking with gas, I said to myself when I realised how long I’d slept for.

You’re monitored closely during the first month or so after you start on everolimus because of the potential side effects. The monitoring involved a mid-cycle review yesterday with my oncologist where we discussed how things were going and she gave me the results of the MRI scan of my liver that I had recently.

As I’ve said, for various reasons the consultant wasn’t convinced that the metastatic breast cancer I have in my bones and bone marrow hadn’t spread to my liver. Now most of you know that I’m a bit of a grammar pedant. I would therefore like to point out that this is one situation where two negatives don’t make a positive. The consultant didn’t necessarily think the cancer had spread but there was enough concern that it might have done that she thought an MRI scan was merited. It came back clear; no spread to the liver at this time. Pleasing news.

We also went through the results of the blood tests I’d had done the previous day. My tumour marker is continuing to rise and my haemoglobin level has fallen slightly. The rising tumour marker means my cancer is active; it’s early days, but one hopes the drugs I’m on will dampen down that activity. As for my haemoglobin, if the level falls much more, we could be looking at another blood transfusion. I’ve already had two since I was diagnosed with secondary breast cancer two years ago now (Documents C and D in your folder). I’ll have blood tests and see the consultant again in two weeks’ time, at the end of this first cycle of everolimus (brand name Afinitor) and exemestane (Aromasin). We can but hope but it seems unlikely that I’ll get as long as out of this line of treatment as I did from the other two. I was on the first line for a year and almost a year with the second.

I’ve been prescribed a stronger, steroid mouthwash. Let’s hope that between that and the one I’m already using – and also the ice lollies and chunks of chilled melon and the home-made mouthrinse of salt and bicarbonate of soda – they help alleviate the discomfort from the two sores I currently have and from any future ones that appear. If the mouth sore situation doesn’t improve, it’s possible we’ll reduce the dose of the everolimus tablets for the next cycle.

For the purpose of the tape, the consultant and I once again discussed future scenarios, with me voicing concerns I had about various things and asking questions that deep down I knew were impossible to answer in any definitive way.

As for the moles I had removed a few weeks ago from my right calf and the sole of my right foot, I get the stitches out next Tuesday and I have a teleconsultation a few days later when I’ll find out the results of the biopsies they did on the removed tissue.

I’m looking forward to getting back on the bike and to playing tennis once the stitches are out. Running had become quite difficult for me (Document E in your folder) so I’m not sure I’ll start that again, despite that fact that Parkrun – the free, timed, mass-participation, volunteer-led 5k run that pre-pandemic took place on Saturday mornings in parks around the UK and indeed in many other countries – is meant to be starting back in June. I ran my 100th Parkrun in January 2019 (Document F in your folder) and managed one more before the very first lockdown two months later. Despite my doubts about running, I would definately like to do at least one more Parkrun post-pandemic.

For those still in the dark over what TV series I refer to at the start of this blog and from which I’ve used multiple lines throughout, it is, of course, Line of Duty. I was helped by the fab bingo card that some joker put together.

None of what’s been going on cancer-wise has prevented me from enjoying the gradual lifting of the pandemic-related restrictions. That said, the novelty of meeting up for a drink and a meal in beer gardens when the temperature is in single digits is starting to wear off somewhat. Bring on May 17th, when we can socialise inside again. Rather excitingly, the boss and I have booked two nights away at the beginning of June. It’s only an hour or so’s drive from the house but we’ll catch up with friends we haven’t seen for many, many years. It’s the first of many UK-based trips we’re hoping to be able to make over the next few months and beyond.

Briefing over, readers. As you were.

The next phase

I saw my oncologist on Wednesday last week and we were finally in a position to decide what my next treatment would be.

I won’t go into the details regarding why it took a while for us to work out what the options were as it’s quite complicated. Suffice to say that on Friday night I started on my third line of treatment for the secondary breast cancer I was diagnosed with in Spring 2019. The other two lines each worked for around a year before the cancer – which has progressed but is still confined to my bones and my bone marrow – found a way of outwitting them. I’d be more than happy to get anything near a year with this treatment I’ve just started. As with any treatment, though, there’s no guarantee it will work at all.

The drugs I’m now on are everolimus (brand name Afinitor) and exemestane (Aromasin). They come in tablet form and I’ve to take one of each, once a day. One has to be taken with or after a meal, so I’ll take both after our evening meal. I will also still have Zometa, the bone-strengthening dug I have monthly via iv infusion.

One of the drugs can cause painful mouth sores so I’ve been given a mouth wash to use to help prevent the sores occurring or to alleviate the discomfort they’ll cause if they do occur.

I’d been off treatment since finishing my final cycle of capecitabine – the oral chemotherapy drug I’d been on – at the end of the first week of April. It’s a relief to be back on medication, even if the drugs I’m now taking come with a horribly long list of common side effects.

I have to admit that not being on any treatment freaked me out, at least initially. “Should I not start another round of capecitabine while we wait?”, I asked the consultant. No, she said, adding that there was little point in taking a drug that has essentially stopped working. “You’d get all the toxicity but none of the benefits.”

As for my new regimen, everolimus is a targeted therapy that blocks cancer growth . Exemestane is an oestrogen blocker. As I’ve explained before, the breast cancer I have is the most common type in that it thrives on oestrogen. Even when when post-menopausal, they still produce a certain amount of oestrogen.

Some of the potential side effects of these two new drugs are very common. Some are specific to everolimus and some to exemestane but I’ll just lump some of them together here: pneumonitis (inflammation of the lungs); mouth sores; taste changes; the usual increased risk of infection; muscle and/or joint pain; fatigue; feeling low; diarrhoea and/or constipation (go figure); liver and kidney dysfunction; sleep disruption; back pain; headaches; hot flushes; and pain, numbness and tingling in hands and fingers. And that’s just the ones classed as very common, which means they affect more than one in ten people taking them.

Of the above, I really wouldn’t notice the sleep disruption as I’m already sleeping badly as a result of the pain I have in my feet, a side effect of capecitabine and also of the chemo I had back in 2015 when I was being treated for primary breast cancer. I’d also been having some joint pain although this has eased off in recent days. To be honest, I also think I’ve been sleeping slightly better too (more on that below).

“I have a feeling that things are going to be tougher from here on in,” I said to the oncologist after I’d signed the consent form for everolimus and listened to her go through the potential side effects. She didn’t disagree but did say she hoped we could get to a place where I was “healthy and happy” on these two new drugs. Let’s hope we can. I honestly would never have thought I’d be so well (as it were) over the two years since my diagnosis. If we can somehow maintain some of that, great.

The next treatment after this one may well involve weekly iv chemo (it’s not quite weekly as you get every fourth week off). This would mean a massive change in terms of quality of life so there’s good reason to hope this latest regime keeps my cancer in check for a good long while.

I’ve seen a lot this past week of St George’s, the hospital in south west London where I’m being treated.

On Tuesday, I went to have blood taken for tests before seeing the consultant on Wednesday. If any of you have wondered what blood tests are done, take a look at what was ordered for me on one occasion recently.

Also on Wednesday, after seeing the consultant, I had a chest x-ray. Given that everolimus can affect your lungs, doing an x-ray now means they will have baseline images to compare with those from the chest x-ray I’ll have after my first 30-day cycle of everolimus and exemestane.

On Thursday, I popped in to pick up some painkillers from the pharmacy, together with some low-dose sleeping tablets. I’m extremely reluctant to take them but not being able to sleep despite taking strong painkillers is no laughing matter. I have so far only felt the need to take them once but I guess it’s good to know they’re there. There’s no point being a martyr about it.

On Friday, I went to pick up the new drugs I’m on; one of them wasn’t in stock when I’d been there earlier in the week. After that I went straight to the Dermatology Department to have two moles on the sole of my right foot and one of my right calf removed. It was done under local anaesthetic. I’m bandaged up nicely and I’d to “take it easy” and have my feet up for the first couple of days after the procedure. I can go on walks but I’ve not to do anything more strenuous than that for at least two weeks, depending on how the healing goes.

The dermatologist who did the procedure reiterated that they were removing the moles for precautionary measures and that they weren’t expecting to find anything nasty when it came to examining the removed tissue.

It’s been a pretty tough few weeks on the health front. On other fronts, though, things have been great. It’s like I’m living two parallel lives.

Work, for example, continues to be challenging and rewarding. Socially, I’ve played tennis and I’ve met up with lots of different sets of friends now that some of the pandemic-related restrictions have been lifted. We’re still not allowed to socialise indoors so we’ve met in pub beer gardens, in roof-top restaurants, in people’s own back gardens, in parks and in the countryside. Lots more gatherings are planned over the next few weeks. The next big thing will be going to visit and stay with friends and/or family around the country that I haven’t seen in ages once that’s allowed.

The weather’s been good.

We’ve done the planned mini revamp of our garden.

It’s Spring. Everything is in bloom and there are lots of baby birds at the pond on Tooting Common at the bottom of our road.

Friday was a beautiful day and I went on a short bike ride before going to the hospital.

I cycled to and around our four local “commons” – Streatham, Balham, Clapham and Wandsworth – to remind myself of how lucky we are to have these beautiful open green spaces so close at hand despite living in the busy capital.

Our boys were home from uni for a couple of weeks and seemed to be on good form – remarkable given the year they’ve had.

Their returning home was well timed as they – the younger one in particular – did the painting that was involved in the garden upgrade.

I’ve also had a haircut, using a voucher our sons gave me as a Christmas present. They bought it days before the latest lockdown that forced all hairdressers to close. They’ve only just re-opened. My hair hadn’t been that long for decades.

My husband continues to be amazing. I could not be more grateful.

Medically, I continue to be closely monitored. I have blood tests and a follow-up with the consultant in two weeks’ time, mid-way through the first cycle. Before then, though, I’m to have an MRI scan of my liver. The consultant wants to see whether anything suspect is happening there that might not have been picked up on the recent PET-CT scan I had.

Let’s see how it all goes. We have no other choice. In the meantime, we’ll get on with enjoying those parts of life over which we have some control.

Restrictions lifting and moving on to the next treatment

Pandemic restrictions are loosening and things are looking up on that front. 

We’ve been limited to meeting up with just one other person outside for exercise since December but now the rule of six – whereby you are allowed to gather outside in groups of up to six, including in your back garden – is back. I’m already taking advantage of it. 

In the fading sunshine one evening last week, my husband and I had beers on Tooting Common at the bottom of our street with some friends who live locally. 

We were all so happy to see each other and to be able to actually sit down and relax and enjoy each other’s company. We’ve been meeting up on Zoom and we’ve had some really fun evenings. However, as everyone knows, it’s really, really, really not the same as meeting up in person. This group largely comprises people who were parents of children who attended the primary school at the time our two sons went there. Before the pandemic, we’d meet up once a month in a local pub. Our boys are now 22 and 20 and it’s been a great way of keeping in touch and maintaining friendships. There are way more than six of us; we did more or less manage to arrange ourselves into groups of six. 

Talking of our sons, one is already back home from uni for the Easter holidays. The other is due back later today or tomorrow. We haven’t seen them in three months. That’s not long compared with a lot of people, I know, but this is longest we haven’t seen each other in person. On Easter Sunday, the four of us will have lunch in our garden with my two London-based nieces. Blankets may be involved, depending on the weather. 

Tomorrow morning I’m meeting up, again on the common, with some other good, local friends, all women this time. We’ll be having coffee and pastries rather than beer! Before the pandemic, we would meet up in each other’s houses once a month to catch up, watch a film and discuss it afterwards. We’ve continued throughout the pandemic, remotely. Someone chooses a film, we have a chat on Zoom then we each watch the film in our own homes and we catch up again afterwards on Zoom to discuss the film. It’s been great. There are five of us in this little group, and I think it’s safe to say we all very much appreciate, and take strength and comfort from, each other. Since last August, the group has experienced three bereavements. My mum died from an infection, one member lost her sister to dementia, and another her husband, tragically to COVID. 

Later on next week, I have a game of tennis planned with my four very special tennis buddies, followed by a birthday lunch for one of them hosted in the back garden of another of them. 

Also in our short-term plans is a drive an hour or so out of London to meet and have a walk with some friends we haven’t seen since last August.

Pubs can serve food outside to groups of up to six as of 12th April. Not only have we managed to make two evening reservations for that and the following week, some friends have invited us to celebrate the 60th birthday of one of them one evening that first week at a pub where they managed to get a reservation. Also, an early supper is in the diary one evening over the next two weeks with the tennis crowd. Finally, the BellaVelo cycling club I’m a member of has booked all the outdoor tables at pub on 21st April and I’m due to attend that too. There can be no mixing between tables but it will still be lovely. 

Finally, we’ve booked to eat out – inside!!! – with four friends on the very first day that’s allowed, 17th May. 

If I sound rather desperate to be out and about again and see people, it’s because I am.

We’re also having a mini revamp done of our garden. That is very exciting, especially as we’ll probably be spending a lot of time there this Spring and Summer.

Staying with the good news, I’m due to have my second dose of the Pfizer/BioNTech COVID-19 vaccine this coming Tuesday. It’s not known how much protection the vaccines provide for immunocompromised individuals such as myself, but it has to be higher than zero, so that’s something. 

On the downside, I didn’t get the best results from my most recent set of scans. 

There are some positives. My secondary breast cancer is still confined to my bones and bone marrow; it hasn’t spread to organs such as my liver or lungs. Also, the cancer that’s in my spine isn’t exerting pressure on my spinal cord. 

The bad news is that the cancer has spread within my bones. It is showing up on scans in places that were clear before. “Disease progression with widespread metastatic disease activity now apparent”, reads the report from the combined PET-CT scan of my body from the top of my spine to my mid thighs. The MRI scan I had of my spine shows “widespread diffuse abnormal marrow signal throughout the spine, in keeping with metastatic infiltration”. That said, “overall appearances [of the spine] are relatively stable” compared to the previous MRI scan I had, almost a year ago.

In addition to there having been progression, the relevant tumour marker level in my blood is continuing to rise and my haemoglobin level has been falling. This means it’s time to come off capecitabine, the oral chemo I’ve been on for the past 10 or 11 months and move on to what will be my third line of treatment since my diagnosis of secondary breast cancer two years ago.

There are a couple or perhaps even several treatment options, each of which comes with its own delightful set of potential side effects. We’re still working out what is best and what is possible. I see the oncologist again this coming week, when we will have some more information to inform what the next steps will be. In the meantime, I’m still on capecitabine.

In light of the scan results, we made a change to the other treatment I’d been on.

With bone mets, the cancer weakens your bones. You’re therefore given one or other of two drugs that are aimed at reducing the risk of what are known as “skeletal-related events”, that is fractures, spinal cord compression, bone pain requiring palliative radiotherapy, and orthopaedic surgery. 

In my case, as well as taking capecitabine tablets morning and evening on a one-week on, one-week off basis, I’d been having monthly injections of denosumab (brand name Xgeva), one of the two above-mentioned bone-strengthening drugs.

On seeing the scan results, my oncologist changed from me from denosumab back to Zometa/zoledronic acid, which has the same aim as denosumab but works in a different way. The idea is that trying something different, even though I’ve been on Zometa before, will have a positive effect. I’m fine with that. My position is that almost anything is worth a go, despite the fact that long-term use of Zometa is associated with a higher risk of dental problems than denosumab, such as sore gums and tooth loosening.

I’d only just got used to giving myself the denosumab injections at home. Now it’s back to the treatment day unit at the hospital every four weeks for an iv infusion of Zometa. The procedure only takes half an hour so I guess I shouldn’t complain too much. However, I hadn’t been hooked up to a drip for more than a year (other than to have a blood transfusion last July) and I have to say it felt weird.

Also, because I don’t do things by half, I’m to have two freckles/moles/lesions/whatever removed and biopsied. The dermatologists who examined me said they don’t think they’re suspicious but they advise removal given my current situation and my history of melanoma. 

One lesion is on the sole of my right foot and the other is on my right calf, near the scar from where I had a microinvasive melanoma removed in 2017. The latter has been there forever; the one on the sole of my foot is new. I contacted my GP, who referred me to the dermatology department at the hospital where I’m having my breast cancer treatment. “I’m here so often I should bring a sleeping bag,” I said to my oncologist when I told her about this latest news. I thought it was funny.

I’m waiting to hear when my appointment to remove the moles will be. 

Since I completed my big athletic achievement in early March, I’ve been taking it easy on the exercise front to give my poor feet a rest after subjecting them to such a pounding in January and February. The throbbing - a side effect of capecitabine combined with pre-existing damage from the chemo I had in 2015 – has definitely subsided but it is so much worse at night than during the day. I could count on one hand the number of proper sleeps I’ve had this month. Getting up in the middle of the night to wrap my feet in a cold, wet towel in an effort to sooth the throbbing is not an uncommon event.

I’ve also been feeling knackered – probably due to a mix of a lack of sleep, the cancer having spread, a low haemoglobin level, general pandemic-related general fed-upness, and – perhaps ironically – not doing much exercise other than walking. Seriously, exercise is known to help reducing cancer-related fatigue. And as we all know, if we can exercise, it does make us feel better.

I’ll give the running a rest for another while, but hopefully I’ll start getting some proper bike rides in soon. As for what playing tennis will do for my feet, I have no idea, but I want to play and so I will. I’m not sure my feet can be much worse than they have already been.

Finishing off, we’ll just have to see how it goes with whatever new treatments I end up on. I was on each of the two previous lines of treatment for almost a year. Let’s see how long I last on this next one. Keep your fingers crossed for me.

Completing a challenge amid joy and sorrow

Last Friday was one of those days where you experience a vast range of intense emotions over a short period of time and for hours afterwards they’re all spinning round your head, vying for attention.

It was the day I finished the challenge a friend had set for herself and me in December last year. We were to run, swim or cycle the 192 miles of the Coast to Coast route from St Bees in the Lake District in the northwest of England to Robin Hood’s Bay in Yorkshire in the east. We would do it more or less together – virtually, of course – and we had three months in which to complete it, starting on January 1st.

I decided I would try to run a third of the route and cycle two thirds. I am so slow at running these days but I reckoned running 64 miles and cycling 128 miles over three months was manageable. My friend was running the whole thing. However, once we started, it soon became clear that she would finish in early March. I knew I’d have to up my game to keep up with her.

I’m not going to lie. The running was hard.

I already had a permanent tingling in the balls of my feet and my toes as a result of the nerves being damaged by the chemo I had in 2015 for primary breast cancer. I’ve said before that it’s annoying rather than painful; I am constantly aware of it but it’s just something I live with.

Making things worse, though, was the fact that I think I have developed over the past few months one of the more common side effects of the oral chemotherapy that I’m on as part of my treatment for secondary breast cancer – palmar-plantar or hand-foot syndrome, whereby the palms of your hands and the soles of your feet can become red and sore and numb and swollen and the skin can become dry and blister and peel. Luckily I only have it in my feet and even then I mainly only experience soreness and numbness. It’s more pronounced than the existing tingling (or chemotherapy-induced peripheral neuropathy to give it its officially name) and I’m in no doubt that running exacerbates it. Long walks do too – the friction from walking can result in large and painful blood blisters as the skin is more sensitive than it would usually be.

On one of the secondary support forums I’m on, we refer to it as “cape feet” – “cape” being shorthand for capecitabine, one of the chemo drugs that can cause this particular side effect.

The bottom line is that my feet hurt when I run and the further I run the more they hurt. I therefore decided that I’d do lots of short runs than than fewer, longer runs. If I was meeting a friend for a walk a mile away, for example, I’d run the mile there. I also ran the couple of miles to or back from the hospital a good few times – once after having had blood taken for my latest round of blood tests and another time after having had an MRI scan of my spine, one of the places the cancer has spread to.

Inspired by Parkrun and an associated initiative known as Cancer 5k Your Way, I saw 5k as a good distance to aim for if I was feeling up to it. Parkruns are free, timed Saturday morning 5k runs organised by local volunteers that take place in parks and open spaces around the country and indeed the world. I was a huge fan before the pandemic-related restrictions put a halt to organised outdoor sporting events and, of course, to so much more.

“Cape feet” undoubtedly affects my quality of life. However, as long as I was still able to run, there was no way I was not going to complete the running part of this challenge. I’ve stopped looking at how long it takes me to do stuff now and I’m just grateful that I’m still able to do them. I’ve embraced the concept of “it ain’t what you do, it’s the way that you do it”. Plus, I’d treated myself to a new pair of running shoes and bluetooth headphones!

To encourage myself to get out there and run, I’d been listening to podcasts. Given the foot issue, I realised something more motivational was needed. So I put together two playlists on Spotify – one is called “Mo Is Dancing” (I’m Mo) and the other is “Women in Country”. I love both and it’s always hard to decide which to listen to.

Talking of motivation, I remember on one occasion standing in my running kit outside the hospital after a scan, my feet already throbbing. I was thinking that I really didn’t feel like running home. Then I thought “what if this were going to be your last run?”. That did it, and I set off. Some people say you should live every day as if it were your last. I’ve always thought that was kind of daft because that would mean every day would be exactly the same – and potentially very boring or very exhausting depending on how you’d chosen to spend it. However, it did come in handy that day at least.

It also helped that another online breast cancer support group I’m a member of was holding a challenge of its own throughout the month of February – for its members collectively to virtually walk round the coast of the UK. In addition, my company was running a February Fitness challenge, with around 250 teams from around the world all competing to clock up the biggest number hours of exercise over the month. All the runs and bike rides I did for the Coast to Coast counted towards those challenges too.

In case you’re wondering, running doesn’t seem to cause long-term damage. You do have to put up with some sleepless nights after you’ve been on a run that’s longer than a couple of miles. The symptoms recede to a large degree after a few days of rest (ie no running or long walks) but I have to be honest, the discomfort even when I haven’t been running does still cause the odd disturbed night.

I kept up with my friend by putting in some miles on my bike (mostly outdoors, but there were also a few indoor sessions) whenever she got too far ahead. We decided to run the last few miles at the same time so we’d finish more or less together. We video-called each other a few minutes before our agreed start time and then set off, me in south London on my own and my friend in south Wales with two of her lovely three daughters. We video-called again once we’d finished. It was all quite exciting! And the medal you get for finishing is rather smart.

The challenge was organised by a company called My Virtual Medal (myvirtualmedal.co.uk). You log your miles on a website that tracks where you are on the route. My friend and I had virtual tea and cake together in some lovely coffee shops and stayed in some very nice hotels along the way! Maybe one day we’ll visit some of these places in real life. I also dropped in for a virtual coffee with a friend who lives not far off the route as it enters Yorkshire! I did in fact call her up and we had a good old chat.

It couldn’t have ended in a nicer way. Towards the end of my run, on Tooting Common, my local stomping ground, I bumped into a friend who was also out running. His wife is a senior intensive care nurse at the hospital where I’m being treated. She’s been in the thick of it during the pandemic. Her husband and I hadn’t seen each other in person for a while and we stopped to chat.

Mid-catch up, a dog runs up to me and drops a ball at my feet. I recognise her immediately. It’s Ruby, our friends’ and neighbours’ beautiful black labrador. As it happens, I am chief ball thrower for Ruby when we’re out on walks with our friends. She’d clearly recognised me and wanted to play.

Her “master”, our friend Dave, wasn’t far away. How could I say no? I laughed and kicked the ball for Ruby while half-running the last few hundred metres of my run.

Coincidentally, Dave knows Robin’s Hood Bay really well and told to enjoy myself while I was there!

Dave is a good few years younger than me. He’s been living with Parkinson’s disease for ten years. I’ve mentioned Dave before in various posts. I had the pleasure of joining him and a group of friends last summer on yet another of his fundraising events for Parkinson’s UK – this time walking the Hadrian’s Wall Way during one of those periods when the pandemic restrictions were lowered. Dave’s a bit of a legend in the Parkinson’s community and in the world of darts, having been a presenter of Sky Sports Darts for many years. Check him out on Twitter at @daveclarktv.

While I was writing this post, Dave dropped off a prize – a memento from Robin’s Hood Bay (see photo) – for having completed the challenge. I love it!

Dave and I are among each other’s biggest fans, supporting and admiring each other through adversity. It was therefore lovely to bump into him and Ruby. However, it also felt quite strange, given that just a few minutes before, I’d been standing in front of a bench a few hundred metres away with tears streaming down my face.The bench is dedicated to the memory of a good friend of one of my sons, who took his own life last October. He was 21.

I’d known the bench was there but this was the first time I’d seen it. I’d looked for it before while out running but in the wrong place and coming across it at that point really took me by surprise. The bench was covered in flowers and looked beautiful. I had this most tragic of events in my mind* when I bumped into my running friend and Dave and Ruby soon afterwards. It all felt quite surreal.

I’ll finish by saying that it was good to complete the Coast to Coast challenge early. It meant I was able to finish it before I get the results of my latest set of scans. I had an MRI scan of my spine (the first in almost a year) and a near full-body PET CT scan the week before last (the first since last September). I get the results tomorrow. As we know, there’s no point trying to second guess the results. That said, if they show progression and I have to change treatment, it’ll be better to head into the next phase with a shiny new medal than with 60 plus miles of running and cycling left to go.

*If you’re in the UK and you or someone you know is struggling, you or they can get help from organisations such as The Samaritans (https://www.samaritans.org/) or CALM (https://www.thecalmzone.net/about-calm/what-is-calm/). It’s only by encouraging people – and men in particular – to reach out and seek help that we’ll make inroads towards lowering the numbers of those who see suicide as their only option.

An update

In the grand scheme of things, I’m quite relieved at the results of my latest round of blood tests.

I met the oncologist earlier this week to discuss the results of the tests I’d had done the previous day. The best I could have hoped for was for my tumour marker to have stayed at the level it had jumped to in December. I figured that was unlikely given that it had risen by a whopping 20% between the November and December blood tests. In the event, it went up by around another 10%.

On the upside, on the blood front things are good. The secondary breast cancer that has spread to my bones has also infiltrated my bone marrow and so reduces my body’s ability to make healthy blood. It was therefore good to hear that my haemoglobin count is up from last month and is again within the normal range, albeit at the very lower end. My neutrophils, while still below the normal range (they’ll never be there again), are 40% up on last month. That means I’m a little better placed to face any infection that comes my way – a positive in the current climate.

Once again, it’s swings and roundabouts. The tumour marker is up but bloods are ok.

With the pandemic still on the rampage, every effort is being made to minimise the number of trips patients on treatment make to hospital. For example, every other appointment with the consultant over the past nine months has been on the phone rather than in person. In fact, I may have had more over the phone than not. Some people don’t like this way of communicating but it’s fine by me. In addition, for my next two rounds of treatment, I’m going to self-inject at home the bone strengthening drug (denosumab/Xgeva) that I have at the start of every new cycle. It’s usually done by one of the oncology nurses at the day treatment unit at the hospital. I did it myself last month at the unit under supervision and that too was fine.

The fact that the marker is going up indicates that there is increased cancer activity somewhere in my body. That’s what happens with secondary cancer. It eventually outwits every possibly treatment. While these latest results were far from disastrous, you do have to be practical. The oncologist therefore discussed with me what drug(s) I might move onto if the scans I’m to have in seven weeks show signs that the cancer has progressed to the extent that we need to change to another treatment. The scans could show any number of things. While you can’t predict a precise course of action in advance as you don’t know what you’ll see, you can be thinking of what might need to happen under various scenarios.

The discussion was quite sobering. But let’s not pre-empt things. That decision – if indeed a decision needs to be taken – is eight weeks away. In the meantime, I carry on with my current treatment and just get on with things.

One of those things is reporting my health status daily on the Covid Symptom Study app – covid.joinzoe.com – that is used to study the symptoms of COVID-19 and track the spread of this virus that is causing such devastation and unimaginable heartache to so many. (On a personal level, next week will see the funeral of a good friend’s husband who died from COVID-19 just after Christmas. His death was heartbreaking on many levels.)

It seems heartless to carry on writing about my own experiences having just written those previous two sentences, but the case is that I reported having a runny nose on the Zoe app, as it’s known, one day last week. While a runny nose is not a symptom of infection with the virus, I, together with any other household members, was “invited” via the app to take a test. It was all very efficient. The test kits were delivered the day after we requested them, we posted them back the following day and got the results – negative in the case of both myself and my husband – 36 hours later via text and email.

I reckoned the results would be negative but, with transmission rates as high as they are, you can obviously never be sure. Our two boys are back at uni and so it’s just my husband and me in the house. I work from home so it’s been a few weeks since I’ve been out for anything other than to exercise or attend hospital appointments. In my husband’s case, it’s for exercise or shopping. I now exercise on my own; I’ve even stopped the walks with friends that had become such a regular and welcome feature of life.

I’m feeling well on the whole and another thing that I’m doing now that I don’t meet up with friends for walks is go out almost every day either for a run or a bike ride. The reason is that I have signed up to a bit of a mad challenge that involves running and/or cycling a total of 192 miles between the beginning of January and the end of March. I could do it all on the bike but I’ve decided to do as much of it as I can on my own two feet rather than on two wheels. Running is so much more challenging than cycling, at least it is for me given the pace at which I cycle. I run incredibly slowly but I guess it still counts as running in that I do overtake people who are simply walking!

There’s no way I’d be running if a friend hadn’t suggested we both sign up for this challenge. Even after having signed up, I’ve had to come up with an incentive to get me out running. I wanted to listen to Transmissions, a multi-episode podcast that I’d heard was really good – about the iconic Manchester bands from the 1980s, Joy Division and New Order. I decided I would only listen to the podcast while running. It was a good plan and it works both ways. I’m loving the podcast so much that I go out running so I can listen to another episode and listening to the podcast makes the runs easier.

This has been a good week for running. I’ve got the week off work, so I’ve got no excuse really. I’m in the category of people for whom work has never been busier and I worked part, if not all, of each of the four working days between December 24th and 31st. It has been so relaxing to have a big chunk of time off. The house is very quiet now that the boys are away again. We had a lovely Christmas together. It’s usually just the four of us anyway on Christmas Day so in that sense at least it wasn’t so different from other years.

The photo above on the left is of me on the 25th, relaxing on the sofa with two of my presents after an almost two-hour spin on the bike – out to Richmond Park, a favourite destination around seven miles away.

The photo on the right was taken in our garden by my husband not long after the bells on New Year’s Eve.

Hogmanay, as we Scots say, normally makes me feel quite melancholic. This year, though, presumably because of all the sadness that 2020 held, it felt important to celebrate and look forward – both because of and despite what the future may bring.

Expectations? It’s hard not to have them.

It’s sometimes good to have positive expectations – I think as humans we need them – but I should know by now that it really doesn’t do to raise your hopes in this cancer business. 

I don’t want to overdramatise things, but I have to confess to feeling rather annoyed at myself for daring to hope that things might have been different from how they turned out last week.

After just two months of staying where it was, that old tumour marker level is up again. This cancer of mine is doing a damn good job of fighting against the drugs that I’m on to try and contain it.

I’m – still – a glass half-full person and I couldn’t help but let myself hope that this “period of stability” might last for slightly longer than two paltry months. In fact, it wasn’t even two months; it was eight weeks. But it wasn’t to be. 

There I was, early Wednesday afternoon last week, feeling pretty good, in the middle of a regular, super busy day at work – working from home, of course. My oncologist was due to call with the results of the blood tests I’d had the previous day, at the end of my latest four-week cycle of oral chemotherapy for the secondary breast cancer that’s in my bones and bone marrow.

Was it too much to ask that the tumour marker level might have remained stable for even just another month? Apparently so.

The results showed my haemoglobin level was down. That’s not such a big deal as it fluctuates from month to month and it’s still at a decent enough level. My neutrophils were also down – to the level where it is just ok to go ahead with the next cycle of chemo. That’s ok, they’ve been there before. But, disappointingly, my tumour marker level was up by almost 20% over last month and is back up to where it was in August. I said already that I don’t want to overdramatise things. Specifically, it’s nowhere near as high as it was when I was first diagnosed in Spring 2019 or when I switched on to the drug I’m on now, in May this year. But that period of stability I had dared hope for never materialised. Also, the level never got as low on this drug as it did with the first drug I was on.

My oncologist knew I’d be disappointed and said she wished she had better news for me. We’ll carry on as is. My next scans are due early on in 2021 anyway. They may or may not show what’s causing the rise in the tumour marker level. I don’t expect the level will go down again although I guess it’s possible. It could stay where it is or it could be that it’s on an upward trajectory that will ultimately lead to my having to change on to the next line of treatment – whatever and whenever that may be. What will be, will be.

The standard regimen for the capecitabine oral chemo that I’m on is two weeks on, one week off. You take tablets every morning and evening for fourteen days then you have a week off and have blood tests at the end of the three-week cycle. I had been tolerating treatment well and my cancer was also responding well so a few months ago I switched to a four-week cycle under which you have one week on tablets followed by one week followed by the same again. It’s easier on the body. Should we go back to the more intensive regime, I asked my oncologist, thinking that might give the cancer more of a run for its money. But it’s not as simple as that. She doesn’t think my bone marrow would tolerate well “two weeks on, one week off” and that if I were to switch, I’d end up needing a dose reduction, which would defeat the purpose of switching.

How can this be, I think to myself. Physically I’ve been feeling really great. In the past few weeks, I’ve played tennis, I’ve been on the bike (outdoors and indoors), and I’ve done a 7k run – a very slow one with two stops for errands but it was still a run. Feeling well physically makes you feel well mentally so, to be fair to me, those two things probably contributed to my allowing myself to think things might have been under control cancer-wise.

I started my latest four-week cycle of capecitabine at the beginning of this week. Four weeks will take me well beyond the pandemic-restricted Christmas season, which we plan to enjoy regardless.  

The tree has been up for a while and I indulged myself this year and bought three funny-to-start-with-then-really-annoying singing trolls. They sing The Jingle Bell Rock and it impossible to get them all singing it at the same time. They do make you laugh when you set them off, though, and laughs are just what we need at the moment.

My husband has not only already made the gravy for Christmas dinner in advance, he has also prepared the stuffing and made a Christmas cake. Our two sons are home from uni, which is lovely.  Their very presence lifts the sprits. I’ve even made myself appreciate the sound of them singing in the shower to music, much of which is really not my taste and is far too loud even when I like it! What I really find amusing is coming down in the morning and trying to work out what they’ve eaten since I  went to bed the previous evening. This morning there was an empty cereal box beside the recycling bin and an empty hummus container in the bin itself  – neither of which was there at midnight last night! It reminds me of my own youth back in Glasgow, although with me it was cheese toasties rather than cereal. As for hummus, I’d never even heard the word, never mind eaten the stuff!

We have plenty of things planned over the Cristmas break – either with or without the boys, in case they read this and start panicking that they will be asked to go on a walk. There will be indoor and outdoor games, films, long walks, bike rides, and Christmas Day catch-ups on Zoom with friends and family. I will enjoy the four weeks of this cycle and will aim to have no expectations one way or the other in advance of my next blood tests and appointments in mid-January.

I had got used to taking things a month at a time and will pretty easily revert to having that mindset. Interestingly, the pandemic is forcing everyone to focus on the shorter term. This is something those of us with life-limiting illnesses have already had to learn to enable us to live with some modicum of peace. It’s not such a bad way to live your life. 

Still looking on the brighter side of things, it seems there’s no reason I shouldn’t be vaccinated against COVID-19 when the time comes. It doesn’t feel like it when I’m on the tennis courts or sweating buckets during an indoor cycling session on my newly purchased smart turbo trainer, but I’m in the “clinically extremely vulnerable” category.

That means I’m pretty high up there in terms of who gets offered the vaccine, although it will still be some time before it’s my turn.

No cancer patients were included in the trials of the vaccine; the big question is how much immunity it will give people like me, on chemo with compromised immune systems. I guess like many things relating to the pandemic, we won’t know until we know.

Before this latest lockdown, we’d gone out for a few pub meals – outside, as was allowed, in heated beer garden areas. At the beginning of this week, the NHS Covid app alerted me to the fact that I had been in contact with someone who had the virus and advised me to isolate for all of two days, which I did. I’m assuming it was related to eating out. I had to cancel a trip to the bike shop and a long walk with a friend that I was very much looking forward to; you’ve got to do the right thing. I’ve had no symptoms and so haven’t had a test myself.

I’ve had much to celebrate and enjoy this year but there’s also been a lot of sadness and sorrow, related to the pandemic or otherwise.

There have been too many deaths and too much serious illness among relatives, friends and acquaintances. A couple of the deaths have been far too premature and/or have happened in heartbreaking circumstances.

Even when a death goes well, as it were (as it did with my mum , this past August), it’s still hard. When I was diagnosed with primary cancer back in the summer of 2015, I wrote a piece about how it was ok to cry. Well this year, I have cried so many tears. Just the other day, Everybody Hurts by REM was playing on Spotify and half-way through I felt the floodgates open and there was nothing I could do except go with it. Sometimes you just have to let it all out. Grieving is a process that lasts a long time, and that’s ok. Also, I think the pandemic has made many of us more fragile than we were before. Things you might have batted off easily in pre-pandemic times can these days tip you over the edge.

Along with the grief, there has been a lot of joy. I will remember this year with fondness along with extreme sadness. Fundamentally, I am so grateful still to be so well physically. Also, the pandemic has led to people showing so much kindness and generosity of spirit. The older you get and/or the more the going gets tough, the more you appreciate that it’s connections with others and taking pleasure from everyday occurrences that matter most. I can’t deny that managing to do the Hadrian’s Wall Walk in northern England in September and escaping to Greece for ten days in early October also helped! 

Anyway, enough about me. Even in the best of times, it can’t be easy to make calls such as the one I received from my oncologist, can it? And let’s face it, there’s news far worse than that that they have to impart. So let’s spare a thought for all the healthcare professionals who are under intense and immense pressure at the moment, trying to manage the pandemic on top of everything else. This article by Lucy Gossage, the oncologist who co-founded the ‘5K Your Way, Move Against Cancer’ initiative, provides a great insight into how challenging things are, and that’s just in oncology – https://www.theguardian.com/society/2020/oct/29/watching-cancer-patients-treatment-alone-heartbreaking

Back to me (that didn’t take long!). This year I’ve found it hard to write Christmas cards. My heart has just not been in it. The naively exuberant words that that are printed in some of the cards somehow seem inappropriate when for so many it’s been a really dreadful year. The last thing lots of people will be having is the “wonderful Christmas” they’re being wished in the cards we send. Perhaps I should have made more of an effort, though, as I do appreciate how nice it is to receive cards.

I really do hope for a safer, saner and brighter year for everyone in 2021. If that’s not possible, then I wish calm and peace for those who are grieving or struggling or dealing with problems of whatever kind. 

Let’s finish with a smile, with a photo that was “Christmassed up” by my brother Stephen – so many thanks to him for that.

The original photo is from when my husband, the boys and I went wakeboarding in London’s Docklands for our younger son’s 20th birthday in August. I love this photo.

That day was one of the many highlights of 2020. I fully expect – here come those expectations again – that whatever 2021 brings, it too will have plenty of highlights. Best wishes to all. Thanks for reading.

 

Death in the time of coronavirus

My beloved mum died at the end of August and I’ve been wondering how to write about it for a while now.

I’m not sure it has much to do with the subject of my blog but I want to write about it and it’s my blog, so here goes.

Mum took ill at the care home she lived in in Glasgow one day in late August. She was taken to hospital, and things deteriorated very quickly. Two days later, my five brothers and I found ourselves on a call together where we had to decide whether to authorise a specific medical procedure, which would be distressing for mum and had no guarantee of success, or to stop treatment, have the staff make her comfortable and let nature take its course. It took us seconds to come to the unanimous decision that we didn’t want her to suffer if it could be avoided. Less than two days later, she was gone.

I took a train up to Glasgow from London as soon as I could after that call. Mum died less than 36 hours after I arrived – and less than eight hours after my older brother, the oldest of my siblings, arrived, having flown back urgently from abroad. My other four brothers were already there.

Mum, who was 83 and had dementia, never really regained consciousness after entering hospital. Nonetheless, perhaps she sensed the constant stream of love that flowed towards her in her final couple of days as her children, daughters-in-law and grandchildren came to sit and spend time at her bedside. Others – grandchildren who couldn’t be there for whatever reason (Covid-related restrictions largely), sisters-in-law, son-in-law, children’s partners, nieces and nephews, and friends – video-phoned to say goodbye, or passed on their goodbyes via those of us who were there.

We are all beyond thankful that she was moved to hospital from the care home she was in. After months of enforced non-contact because of Covid, we were finally able to kiss her, touch her and hold her hand.

Towards the end, all six of her children were with her, gathered round her bed. The usual talk and banter that happens when we’re all together was mixed in with the sadness and sense of occasion.

It was a very special time. We all felt very strongly the bonds that linked us all. It was a privilege to be there.

Mum had been such a focus for myself and my brothers since our dad died almost five years ago. Her death is huge loss. However, as the pandemic rages on and we face another lockdown, I think we also feel a certain sense of relief.

While this gracious and giving elderly lady didn’t die of coronavirus, she was most definitely a victim of it. She thrived in company. The restrictions introduced under the pandemic deprived her among other things of almost all contact with the family she loved and her resulting decline was sad to witness.

The pain the pandemic has caused and is continuing to cause is immeasurable. The way in which it is affecting people in care homes seems inhumane. It beggars belief that in seven months we haven’t found a way of enabling relatives to spend time with their loved ones in care homes, many of whom – no matter how high the level of care they are receiving – are suffering huge mental anguish and physical decline as a result of their enforced isolation. We’re protecting lives at the expense of quality of life or living and I can’t genuinely say I think that’s the right thing to be doing.

When it became clear that the virus was here for the duration and that visits to care homes would be severely curtailed, my brothers and I would chat about what the best outcome might be for mum. We used to say – in all seriousness – that the best thing would be for us to take her from her care home, have her spend a week with each of us during which time we’d have her singing, dancing and enjoying being in the moment – at the end of which she would somehow simply pass away. We knew it wasn’t practical but it was a nice idea.

My mum wasn’t aware I’d been diagnosed with incurable breast cancer. When I found out myself some 20 months ago, I decided there was no point in telling her. My brothers were quick to agree. Her dementia meant she would either forget we’d told her or she’d be terribly distressed by the news – or indeed both, at different times. I’m glad in a way that she didn’t know; that’s not the kind of news a parent needs to hear.

The photo below is from a year-and-a-half or so ago; it’s one of my favourites.

I take comfort from the fact that I saw my mum in good health and in good spirits – relatively speaking – just a few weeks before she died. It had been nine months since I’d last seen her. I don’t believe in fate, but on this occasion I feel a huge urge to thank my lucky stars that I made the decision to take that trip up to Glasgow when I did.

We’re lucky in comparison with the many, many people who weren’t allowed to be with their loved ones towards or at the end. There was lots we weren’t able to do because of the restrictions, but this was as good an ending as we could have hoped for – even in non-Covid times, I think it would count as a good death. Never in our wildest dreams did we think that we’d all be able to be there with her, together.

Not only that, we were able to deliver a eulogy as part of the funeral service in my mum’s local church. It was the first time this had been allowed since the start of the restrictions. Most of the immediate family was in the church, including all 13 grandchildren. The allowed maximum number of funeral attendees in Scotland at that point was 20; we managed to make it 21 by having one daughter-in-law as the cantor! The service was streamed so people could watch it online. While we weren’t allowed to carry the coffin out of the church, my brothers and I were able to carry it from the door of the church to the hearse that was waiting just a few yards away. This was symbolic as much as anything but the six of us had carried my dad and it just felt right that we would carry on this last part of her journey this woman who’d carried us – both physically and metaphorically.

Relatives and friends who hadn’t been able to attend the service gathered at the cemetery – in foul weather.

Afterwards we even managed to have a socially distanced buffet for the immediate family.

A day or two after my mum died, my brothers and I gathered together to reminisce and play cards. The following day, restrictions were put in place that banned indoor gatherings in that part of the city.

It seems the gods were on our side in many ways.

I’ve been wondering what all this has to do with my condition.

It’s relevant because the way I look at death has changed as a result of my diagnosis. I’ve had to come to terms with the fact that I will die “before my time” and for me at least, it helps to talk about it, to acknowledge it, and to plan for it. It’s not an easy thing to do, but we should all talk more about dying.

As part of that process I came across Dr Kathryn Mannix, a palliative care doctor in the UK who advocates for more openness around the topic of death. I’d highly recommend her book, With The End In Mind (how to live and die well).

Coincidentally, Dr Mannix shared a thread on Twitter just as it became clear to us that my mum would not be with us for much longer. I in turn shared the thread with my brothers. We all took comfort and strength from her words.

“When we take our turns at the bedside, or the virtual bedside, of our beloved dying person, it’s a memorable and profound experience. It is life-changing. It is our privilege to be there for each other as we learn the lessons of the deathbed.

As we sit with our beloved dying person, we are exchanging our final gifts. We are giving them the gift of our companionship and attention, and they are giving us the gift of showing us how to die. It’s an act of love.”

That’s exactly how it felt. We felt blessed.

When I wrote my last post, I’d just had my first scan since starting on oral chemotherapy at the end of May. I’m happy to report that the results showed my cancer is stable, with no signs of progression. Overjoyed wouldn’t be an appropriate emotion given that things can change from one month to the next, but that’s as good news as I could hope to get. Also, the tumour marker level that went up last month went down slightly this month – not by much at all but at least it didn’t go up. Again, the word thankful springs to mind.

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. 

A cathartic week in Scotland

I very recently got back from Scotland, where I spent a whole week visiting family and friends I’d not seen since last November.

I feel like a weight has been lifted from me. I also swear that for much of the time I was there, I came as close as I possibly could to forgetting that I have incurable breast cancer.

The main reason I went to Scotland was to see my mum. This wonderful lady is 83, has dementia and lives in a care home in my home city of Glasgow. She is very well looked after but things are tough with the pandemic. The restrictions on visiting are very tight – for example, indoor visiting is banned. In common with thousands like her, my mum is struggling to understand what is happening and is suffering quite badly from among other things the lack of social interaction and physical contact.

Over the course of seven days, I saw as much of my mum as I possibly could. I also spent time with each of my five brothers. I saw nine of my eleven nieces and nephews (the other two live here in London). I visited a few good friends, and, thanks to the good organisational skills of one brother, I managed to combine a lovely bike ride out in the countryside south of Glasgow with a visit to a cousin who recently lost her mum – my own mum’s last remaining sibling.I had four 30-minute “window visits” where I spoke to my mum on the phone while standing outside her room with her inside at the window. I also had one 30-minute socially distanced face-to-face visit in the grounds of the care home. 

While my mum now struggles to remember who we are, there’s definitely still a connection. Even if she can’t process the fact that the person standing there in front of her is her daughter, she knows that the concept of daughter is important and that the person talking to her is important to her and that she is to him or her.

The proof lies in the following anecdote.

On my first visit, I suggest that my mum write in her diary that I’m coming to see her the following day. She gets her diary out, opens it on the July 27 page, and I suggest she write “Maureen”. She writes “Maureen to visit today” in that still lovely and still neat handwriting that I’d recognise anywhere. I’m aware that the more memory prompts she has, the more likely it is that she’ll make sense of what she’s written. I therefore suggest that she also write “daughter”.  She duly writes daughter. Then, out of nowhere, she adds a little tick and a few kisses. As she adds the final “x”, she looks up, gives me a massive smile, and says with great satisfaction and pride, “there”. I can’t describe how happy that made me.

I felt relaxed, cared for and loved throughout the whole trip. Despite talking about my situation at length to anyone who cared to and was brave enough to ask, I became aware many, many times throughout my stay that the fact that I have incurable breast cancer was as far back in my consciousness as it’s been since I was diagnosed over a year ago.

It helped that the week I was there coincided with my week off treatment. Under the drug regime I’ve been on for the past few months, I’ve been taking a certain number of tablets of the oral chemo drug capecitabine twice a day – every day, morning and evening, more or less 12 hours apart – for two weeks then I have the third week off. You have to take each set of tablets within 30 minutes of eating.On the week off, I don’t have to eat at a specific time, twice a day. I can skip breakfast if I want. I can have a late supper without having to remember to eat a snack a couple of hours earlier to stay within the 11-13 hour range that I think is acceptable. I don’t have to think about whether I need to take that evening’s supply of tablets out with me in case I’m not at home. I turn off the “Tablets AM” and “Tablets PM” reminders on my phone. It’s nice.

I packed a lot into the week but it never felt rushed. 

I visited friends and family in various places – Glasgow, Killearn, Perth. I rode a tandem for the first time. I had my first ride on an e-bike. I discovered a new park in Glasgow. I was introduced to the music of a couple of bands I hadn’t come across before. I had some really great food. I played tennis. I went on two bike rides, one of 35 miles and one of 20 miles. I breakfasted on wild raspberries during a walk in a park in Perth. I had my first meal out since lockdown was introduced in mid-March. I also managed to read a whole book – Hamnet by Maggie O’Farrell.

If you’ve read the post I wrote for the Institute of Cancer Research, you’ll know that I don’t have a bucket list. That said, being on the tandem was such good fun that retrospectively I’m adding “have a go on a tandem” to and ticking it off from that non-existent bucket list! The e-bike was fun too, but not bucket list material. It may yet become so, I guess, once getting up hills on a regular road bike becomes too much of an effort.

On the book front, parts of Hamnet moved me to tears. The protagonist in this beautifully written novel is Agnes (William Shakespeare’s wife). In one particular scene, it’s Agnes’s wedding day and she’s thinking of her mother, who died years earlier. O’Farrell writes:

“[Agnes] senses, too, somewhere off to the left, her own mother. She would be here with her had life taken a different turn… So it follows, of course, that she will be here now, in whatever form she can manage. Agnes does not need to turn her head, does not want to frighten her away. It is enough to know that she is there, manifest, hovering, insubstantial. I see you, she thinks. I know you are here.”

Again, as I wrote in the ICR blog, I try not to worry about possibly not being here for specific events such as weddings – the events we fear we’ll miss may never happen – but that passage did make me tearful. Indeed it’s not exactly easy writing this now. I find the words sad but also hugely comforting. I hope that when I’m gone and people feel they have need of me, they’ll think along those lines and find some sort of peace. I recommend the book, not just for that passage.

You should get the message loud and clear from reading this that I had a really lovely time. If I’m in any doubt at all myself as to whether I had a lot of fun, I have a physical reminder that I did. I’ve got a sodding big cold sore on my bottom lip.

I’m an atheist but I was brought up a catholic and I can’t dissuade myself from thinking in a very Old Testament-esque way that cold sores are God’s way of punishing me for enjoying myself too much.

I get them quite regularly, in exactly the same place on my bottom lip. They never just happen, though. They always happen in the immediate wake of my having done something that’s really fun – skiing, being on holiday in the sun, cycling on a sunny or windy day (that’s what caused the one I have now). Of course I know that bright sunlight and the cold and the wind can trigger cold sores but I have fun thinking divine retribution is to blame.* I hate them. They are horribly painful and can make you feel really low. The Scottish word “louping” seems tailor-made to describe how your lip feels when you have a cold sore. In addition, of course, they’re unsightly – so much so this time round that I’m quite thankful I have an excuse to wear a mask in public places!

Going back to the god issue, I have to confess that I went skiing several times earlier this year and, despite skiing in glorious sunshine on some days and in bitter cold on others, I didn’t get any cold sores. I like to think that was god giving me a bit of a break cos he/she knew that 1) the scans I was due to have soon after I got back would show signs of progression and I’d have to move on to a new line of treatment and 2) coronavirus was around the corner.

The pandemic forces us to make choices. You balance the risk of catching or unknowingly spreading the virus against your desire and/or need to go to certain places and do certain things. I didn’t need to go to Scotland but I chose to go. I took care on the hygiene front and on the social distancing front I did what I could. Everyone was very accommodating. Almost everyone I came across was complying with the recommendations on social distancing and mask-wearing. I felt pretty safe. 

I also didn’t need to have a massive hug with each of my brothers or they with me, but hug we did.

It was sad that I couldn’t hug my mum. This photo shows how close we were allowed to get to each other on the outside visit. It was far from ideal but, under the circumstances, it was the best I could do. It was enough. It had to be. I feel like a different person after my trip. I realised in hindsight how concerned I’d been about my mum.

I hadn’t seen her in eight months. That’s a long time. It was a huge relief just to see her – even within the very limited boundaries of what was possible. It was also so good to be in the company of so many family members and good friends. 

I got back from Glasgow on Sunday evening. First thing yesterday I went down to the hospital to have blood taken for the regular end-of-cycle tests. Today I saw the oncologist for the results. I’m tolerating capecitabine well, the relevant tumour marker is down again and all the other blood test results were good enough to switch from a three-week cycle of two weeks on and one week off to a four-week cycle of one week on and one week off times two. I start cycle #4 this evening. Back to enforced breakfasts and reminders on my phone and, more importantly, taking the cancer treatment that for the moment at least is enabling me to get on with living my life.

*While this image made me howl with laughter, I do of course realise that it is based on an outdated stereotype. One of my mum’s sisters was a nun and she was the life and soul of the party. More pertinently, my mum’s care home is run by nuns. Before lockdown, there was plenty of singing and dancing and fun and frivolity. I hope they can return to those days soon.

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.