A tale of two weeks

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Some reassurance amid a turbulent month

Things calmed down substantially after my first session of iv chemo.

Since then my husband and I have had a fabulous nine-day holiday in the beautiful county of Cornwall in southwest England and I have already had the first and second sessions of my second cycle of iv chemo. Things have not been without drama on the treatment front but, for a few weeks now, I have been feeling really well.

There will be more on the holiday and on how treatment is going in later blog posts. In the meantime, here’s a run-down of events over the month when I realised I would be moving on to iv chemo through to starting treatment and heading off on holiday. With more than a dozen hospital trips, two blood transfusions and a 2am trip to the emergency department, it was a turbulent few weeks.

During much of this time, I was sleeping badly. That didn’t help an already difficult situation.

Reading through this post now, it seems a million miles away from where I am today.

Among other things, my feet are better than they’ve been in years. That means I’m sleeping so much better. Also, I have my appetite back. I’ve put on two or three kilos over the past few weeks; I don’t think it’s all down to Cornish beer and gin.

Here goes. It’s a long read.

10 August

I make a quick trip to the hospital to have blood taken for standard testing at the end of the fourth monthly cycle of the drugs that I’m on – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin), taken once daily in tablet form. At the end of the third cycle, the all-important CA 15-3 tumour marker had, to our pleasant surprise, unexpectedly fallen slightly when the trend over the first two months of treatment had been upwards.

11 August
I see my consultant to discuss the results of yesterday’s blood tests. My haemoglobin level has held up to some extent since my latest red blood cell transfusion on 29 July. Other developments outweigh this positive news, though. My platelets have fallen to a level that’s deemed problematic. Also, the tumour marker is up, meaning the cancer is more active than it has been just recently. That is a huge disappointment. My neutrophil level is where it has been for the past couple of months – low but not too concerning.

All things considered, the consultant reckons it’s time to move on to the next line of treatment, ie iv chemo with a drug called paclitaxel. The secondary – incurable but treatable – breast cancer I have has spread to my bones and invaded my bone marrow, impairing the ability of my body to make healthy blood. It’s hoped the paclitaxel will attack the cancer sufficiently to enable my bone marrow to be more productive. That in turn would mean among other things less frequent blood transfusions.

I stop taking the various drugs I’ve been on, except for one. That means stopping the non-red blood cell transfusion option we’ve been trying as a means of boosting my haemoglobin production. I’ll have another set of blood tests done in a week’s time. At that point, we will most likely go ahead and prep for starting iv chemo.

12 to 17 August

I’m feeling pretty grim on and off – emotionally and physically. I feel so tired. My feet are sore, a side effect from chemotherapy treatment back in 2015 and also probably from the drugs I’ve been on more recently. My elbow and knee joints are sore. I’m thirsty all the time and I’m drinking gallons of water and juice. All these things prevent me from getting a good night’s sleep. I revert to wrapping my right foot in a wet towel in the middle of the night to try and stop the throbbing. Some nights I’ll take a painkiller, others a sleeping tablet. Sometimes they work, sometimes they don’t. Also, I have very little appetite.

18 August
I have blood tests first thing followed by a clinic appointment in the afternoon. My regular oncologist is on annual leave and I see another consultant from the team.

The consultant talks me through the consent form for paclitaxel, with all its horrible potential side effects. My eye catches the date on the form and I mention that today is our younger son’s 21st birthday. We have a nice chat about where we might go for a celebratory family meal on 24 August, which is when the birthday boy, his older brother, their dad and I all next coincide at home.

I sign the consent form. I’m booked in for my first session on 23 August.

As for the blood test results, my haemoglobin level has fallen during the treatment break. It’s decided I should have a blood transfusion prior to starting chemo.

I’m tested that afternoon for diabetes and for signs of an infection as for days I’ve had the most incredible thirst that won’t go away no matter how much water or cordial I drink. Nothing is detected on either front.

20 August
I have the blood transfusion. I have just one unit (previously I’ve usually had two) and I’m at hospital for about two hours. I start to feel slightly better overall. The pain in my joints has gone.

23 August
I’m still feeling ok. I have my first session of iv chemo. I’m at hospital for around three hours or so.

24 August

I still feel fine. It’s not exactly hot but I decide to go for a swim at the local lido.

I still feel fine later on. The four of us head out for the birthday meal. We go for a drink at a local pub then on to an Argentinian steakhouse. We have a really lovely evening. I’m still feeling fine when we get home.

At around midnight, in bed, I feel myself developing a temperature. I track it for a couple of hours then decide to get a taxi to A&E at the hospital where I’m being treated. I’ve been told not to bother calling the emergency oncology line but to go straight to A&E if my temperature goes above a certain level. It was above that level.

I’m admitted almost immediately to a room in the emergency department. The concern is that with such low neutrophil levels, you might have or be in the process of developing neutropenic sepsis, a serious and potentially fatal infection. I have lots of bloods taken. I give a urine sample. I have a nose and throat swab taken to check for Covid in case I need to be kept in. While the tests are being run, I’m pumped full of antibiotics and fluids – just in case. My blood pressure, temperature, blood oxygen level, etc, are checked multiple times throughout the night. My temperature goes down overnight and no infection is found. I’m sent home mid-morning the following day with a week-long course of antibiotics to cover me in case there is an underlying infection that hasn’t been picked up. I go straight to bed and don’t get up until the following morning other than to go to the loo. Loo trips are quite frequent given I am still drinking huge amounts.

They don’t know why my temperature went up but said that it might have been a reaction to the chemo. 

27 August

I’ve felt absolutely exhausted since coming home from hospital. I have no energy, no appetite and I feel really low.

I go back to hospital this morning for follow-up blood tests in light of my trip to A&E earlier this week. My neutrophil level is down to well below the level that’s deemed safe for chemo. My haemoglobin is down too. That explains the lack of energy.

I’m given yet another blood transfusion and I’m sent home with three lots of neutrophil boosting injections that I’m to give myself over next three days to get my neutrophil level high enough for chemo on 31 August.

29 August

I feel so much better. It’s like I’m a different person. I could cry with relief.

31 August

Blood tests at 9am. The results are good enough for me to go ahead with the second chemo session that afternoon. It takes about two hours or so. I’m still feeling well, although there is no improvement on the sleepless night front.

2 September

Back at the hospital at 9am to have mid-cycle bloods taken. Later in the day I see the consultant, who tells me the results are ”reassuring”. After all the turmoil of the past few weeks, that is very good to hear.

The consultant checks my feet and hands for any signs of worsening peripheral neuropathy. There’s nothing to be concerned about, so she orders a slight increase in the next dose of chemo I’m to get.

I’m still feeling well, but lack of sleep – largely due to the pain in my feet – is still a big problem. The consultant makes some suggestions, some involving drugs, some not. I decide to stop being an idiot and to give the sleeping tablets a proper chance to work. I also start rubbing tea tree oil into my feet.

3 to 5 September

I’m feeling well. I still tire easily, but that’s ok.

On the Friday, my husband suggests a trip to the always stunning Kew Gardens. We take it slowly and spend a lot of time sitting, resting, on benches. One such bench is the Remembrance and Hope bench. An explanation of the provenance of the oak tree from which it is made is carved into it. I read the words while seated on the bench, which means I read them “upside down”. My husband again professes amazement at my ability to read this way. Until I met him, I genuinely thought everyone could do this. Apparently not. My husband claims it gives me an unfair advantage at Scrabble.*

On the Sunday, the sun is shining and we visit another lovely outdoor London space. This time it’s Regent’s Park, where we have a catch-up and lunch with some good friends.

6 September

Back at the hospital for blood tests to determine whether I can go ahead tomorrow with the third and final session of the first cycle of iv paclitaxel.

7 September

In the morning, I have a follow-up dental appointment at the hospital. Some months ago, I became aware of an annoying throbbing in several of my lower front teeth. It comes and goes but no cause could be found at the initial appointment and no cause was found this time either. We agree I’ll keep an eye on it.

The blood test results from yesterday are good enough for me to go ahead with my third session of chemo. That’s the afternoon accounted for. It’s a relief to have completed Cycle 1.

After a terrible summer weather-wise, London is basking in 28 degree heat.

8 September

The sun is still shining.

We had hoped to get away for a week’s holiday abroad with our two sons at around this time but we just couldn’t make it happen. We agreed to try and arrange something later in the year. My husband and I decide to go on holiday ourselves. Planned departure date 11 September. Destination Devon and Cornwall. We’re sorry not to be holidaying with the boys but it can’t be helped. We start to look forward to our own trip.

We go to the local lido with some friends and spend the morning there. It seems wrong not to take advantage of this beautiful weather and this beautiful space.

We bump into some other friends. It feels like we’re already on holiday!

Our older son leaves for uni.

That afternoon, I take part in my company’s annual fundraising walk. I do the 5k distance; others do 10k or 20k and some even do the full marathon distance. I see colleagues I haven’t seen for ages because we’ve all been working from home for well over a year. I meet in person for the first time new colleagues with whom I’ve been working online for months. The destination and after party is at Twickenham Stadium in southwest London, the world-famous home of English rugby. We enter through the players’ tunnel. It feels quite special.

What a lovely, lovely day.

9 September

We start planning our trip.

10 September

Our younger son goes back to uni.

We pack for our trip.

11 September

Off we go!

*I was always able to read inverted text but I have just googled it and it seems that if it doesn’t come naturally, it can in most cases be learned.