A life well-lived

Maureen passed away peacefully yesterday, a week after she was able to celebrate her 59th birthday, something she never dared to plan. This is her husband Andy and I was privileged to be at her bedside when she drew her last breath, along with our sons Jamie and Finlay and a close friend. In her final weeks our house was filled with love, joy and laughter as she faced death with characteristic courage and good humour. She read every one of your responses to her last post and your affection and support gave her great comfort, so thank you.

Maureen hoped that such a frank and personal account of her experience would help others in similar situations but it was also an important part of her own cancer journey, allowing her to organise her thoughts, understand what was happening to her and find some happiness and even amusement in the darkest of places. It gave meaning and purpose to this most difficult and cruel period of her life and your engagement with it brought her immense satisfaction.

Once again, my sincere thanks and best wishes to you all.

Andy Tighe

Comfortable at home

A lot’s happened since I wrote my last blog. The bottom line is that Ive stopped active treatment against the secondary breast cancer I was diagnosed with in March 2019 and I’m comfortable at home with possibly just weeks left before I die.

That’s such a difficult thing to write and a difficult thing to be living with but I can’t hide from it any longer. And it means I can have those very tender conversations with my beloved husband, sons, brothers, nieces and nephews, friends, colleagues and so many others. I can let everyone know what stage I’m at on my journey through this life.

I’ve had the support of my oncologist and her team every step of the way and frankly I can’t believe I’ve had three such good years since my diagnosis. I can’t thank her enough.

The cancer that was advancing through my body has, sadly, spread even further. In addition to the courses of chemotherapy I’ve been receiving, I’ve also had whole brain radiotherapy. There’s one further chemo available but I’m assured it won’t work and the side effects are brutal.

So for the last couple of weeks it’s been end of life care – at home. I now live downstairs, with all the medical paraphernalia that entails, including the marvellous 24/7 syringe driver that provides me with constant and continual pain relief and anti-nausea treatment.

At various critical times throughout the day, I take steroids to reduce the swelling in the brain, three or four different laxatives to tackle the constipation that the antinausea drug in the syringe driver causes and, critically, an anti-epileptic to deal with any seizures. I have blurred vision, which makes things very difficult. I can only see with any clarity at all things that are at about 8 inches away. If you come and visit me, I’ll only know it’s you by your voice unless you’re within that sweet spot. But at least I’m at home.

It took a long time to get me here from hospital; my last stay, when I was very ill, lasted two weeks. I realised I could die in hospital and I didn’t want that. But they couldn’t discharge me with the symptoms I had as they could only be treated in hospital. I won’t go into detail but I had great difficulty keeping down food and fluids, along with various other serious issues that thankfully have now been addressed. Now I have a team of carers who come in the morning to wash and dress me for the day, the evening to wash me and get me ready for bed so that I will sleep comfortably and during the day to replace the syringe driver when it’s nearly empty. All this had to be in place before I could be at home.

The healthcare teams were amazing in getting me well enough to come home. This time two weeks ago there were days when I barely knew what a phone was.

I am now under the fantastic care of the local hospice. I don’t want to be resuscitated if it gets to the stage where that’s an option. I’ve told my nearest and dearest there’s no need to feel guilty if they choose not to be there or indeed if they want to there but can’t make it. I will either die at home or at the hospice – but not in hospital. 

Life has been so, so good but it’s time to let nature take its course. Accepting that and letting everyone know is such a relief. I’ve had so many beautiful visits, messages and gifts from friends and relatives. They all agree that carrying this knowledge is much better than getting a surprise email or phone call bearing the sad news that I’ve just died. We’ve been able to celebrate our relationships with each other in a way that wouldn’t have been possible had I not been so frank. Friends have weeded and tidied my garden for me; they’ve massaged my feet and hands; they’ve painted my nails; they’ve brought frozen strawberry daiquiris; or we have simply just revelled in each other’s presence.

Those of you who follow my blog may remember I wrote about a wonderful country music song called Bring my Flowers Now (While I’m Living). That’s what’s happening now. I’m genuinely living “with death in mind” and hope that I will have a good death. 

I don’t know if I’m going to be able to continue with this blog for much longer. So let me say now how thankful I am to you all for reading it over the years and for your support. It’s been an important part of my cancer journey, allowing me to organise my thoughts and emotions. Living with advanced cancer is hard, but if what I’ve written has helped any of you, then I’m humbled and grateful.

Covid, etc

Note: I updated this post on April 15th to give a more realistic picture regarding what was happening cancer-wise even before I got Covid.

I managed to avoid it for the best part of two years, but Covid finally caught up with me. I had a mild dose and I seem to have recovered well. Of the five days that I was out of sorts, there was just one day when I felt really rough.

I was more upset about the fact that a session of chemo had to be cancelled than about the fact I had Covid. The only thing worse than being on chemo is not being on it when you should be.

It didn’t end there. When I next went to the hospital to start back on chemo, they took my temperature at the entrance to the treatment unit as they always do. It was sky high. I hadn’t realised. Almost immediately it was decided I couldn’t possibly have treatment. Several hours later, I was tentatively diagnosed with a bacterial infection and sent home with a seven-day course of antibiotics. I had now missed two chemo sessions – the equivalent of a whole cycle. I felt lower then than I had felt in a long time. I reckoned the last thing my cancer needed was a free rein to cause even more havoc than it’s already caused.

Back to Covid. After testing positive, I took up the offer of one of the new antiviral drug treatments for Covid that are now available for “clinically extremely vulnerable” individuals such as myself. There’s no way of knowing whether the drugs made a difference but my dose remained mild and I’m glad I was offered them.

I sent off the priority PCR test that I had at home soon after testing positive on an LFT. The NHS has been issuing these priority kits to people classed as CEV as part of a programme to get us tested quickly if we develop symptoms and, if positive and if appropriate, onto one of the new treatments. 

The drugs have been shown to reduce the risk of CEV individuals with mild to moderate Covid from progressing to severe disease and all that entails – hospitalisation and worse. They have to be started within five days of you developing symptoms. 

It was all very efficient. I was notified of a positive PCR result less than 24 hours after sending off the test. I got a call some hours later from an infectious disease doctor from the Covid Medicines Delivery Unit based at the hospital in southwest London where I’m being treated for my secondary breast cancer. I took delivery of a five-day course of an antiviral treatment called Paxlovid that evening and I started taking the tablets immediately. I started the course around 2.5 days after developing my first symptom.

Paxlovid is the brand name for the treatment, which is a combination of an existing HIV drug called ritonavir and a new antiviral drug called nirmatrelvir. The former helps the latter stay active in the body longer.

These are strong drugs. As the patient information leaflet says, “not many people have taken Paxlovid” and “serious and unexpected side effects may happen”. Within the CEV category, there is clearly a broad spectrum. Currently, I am clearly not at the most-at-risk end of it. Nonetheless, I decided to take the extra help.

Those of you who follow this blog know that I really only fully shielded for a few weeks at the very beginning of lockdown, back in March 2020. I did take care, adhering to guidance on social distancing and avoiding shops, supermarkets and public transport for a very long time, for example. However, I jumped at the chance to get out and exercise, socialise and travel as soon as it was allowed. With the Omicron variant being so transmissible, I’m aware I certainly could have been more cautious over the period when I must have caught the virus.

I know people with no underlying health conditions who’ve been far more cautious than I’ve been throughout the whole pandemic. Everyone decides on their own risk threshold but I do think that many people who were classed as CEV and who shielded for many, many months – and who indeed may be still shielding – were done a disservice by the government. Blanket guidance was issued for what very clearly was not a one-size-fits-all situation.

I was quite happy self-isolating while I had Covid. I work from home and there are some weeks where I don’t leave the house for a few days at a time anyway other than to get fresh air or meet friends locally. My symptoms were a sore throat, a headache and tiredness. I slept through most of the day I felt roughest. I’m quite happy in my own company so I didn’t suffer on that front. I listened to a book on Audible, my first time. I recommend the book – Unsettled Ground by Clare Fuller. It covers issues such as homelessness and it took on a special resonance, reading it as I was in the comfort of a big, warm, comfortable house.

My husband kept me fed and watered throughout (as he does anyway, it has to be said). He too likes his own company. He asked me on Day 5 when I thought I might stop self-isolating. When I said “possibly tomorrow”, he quipped back “steady on, there’s no rush”. Cheeky or what? In the end, I was in isolation for seven days.

The self-isolation was fine logistically but the disruption it caused was hard to deal with, emotionally and practically. Among other things, I had to cancel a trip to Glasgow that I’d really been looking forward to. I felt I was letting a lot of people down by not going. I had to send multiple begging emails in an effort to get refunds or credit vouchers for the cost of unused train tickets, hotel reservations and theatre tickets. I also had to rearrange or cancel several appointments or events in London.

I currently have treatment with intravenous eribulin at the hospital on Day 1 and Day 8 of a 21-day cycle. I have blood tests on Day 7 and Day 21. I also tend to see the consultant on Day 21 or Day 1. When you’re tied to the hospital so much, you have to organise your time really carefully. I’ve become very skilled at this but the slightest change to what you think is going to be your routine can cause havoc. For example, the upset to my chemo routine caused by these recent events in combination with a rescheduled PET CT scan will mean having to cut short a trip to Spain in the run-up to Easter, with the extra cost and inconvenience this entails. First-world problems certainly, but they’re still problems. I was so low and frustrated at one point that I told my husband I wasn’t booking anything ever again. That’s how bad it was. That didn’t last for long, you won’t be surprised to read.

It doesn’t look like the four weeks I went without treatment made much difference to my situation. Having been at its lowest level since I was diagnosed almost three years ago, my tumour marker level had already started to edge up even before I got Covid. It continued to rise during my time off treatment and it’s risen again since I’ve been back on chemo. Nothing about that is good in any way.

More positively, I haven’t needed a red blood cell transfusion since January 17th. I started on eribulin on December 1st last year. Given that I’d been having transfusions at least monthly for almost a year, I’ve been delighted at this outcome. Even here, though, while my haemoglobin level went up, it didn’t stay at that level and has been slowly falling – again even before I got Covid.

Rising tumour marker levels and falling haemoglobin levels. That’s not a good combination.

As I’ve said before, I’ve generally largely felt really well on this chemo. In fact, I would say it’s been the easiest of all five treatments I’ve had in the past three years.

I have had a couple of MRI scans done in recent months on a specific area to check for problems there but I don’t want to dwell on that here.

Also, I will find out for sure soon whether my cancer is now spreading elsewhere; my first half-body PET CT scan since starting on this treatment is scheduled for April 14th. It was meant to have been on March 12th but the scanner was broken and the appointment had to be rescheduled.

Covid and the subsequent infection – followed by a rotten cold, because I hadn’t suffered enough – didn’t spoil everything.

The four of us (my husband, our two boys and I) still managed to get away to the French Alps for a few days’ skiing that coincided with my husband’s 60th birthday. We had a fabulous time. It was so lovely that we were able to spend this important milestone together, in the place where we’ve had such fabulous family holidays in the past.

I then went to the beautiful Spanish island of Mallorca and joined for a few days a women’s cycling camp I’d been to a few times before; I did precious little cycling but the achievement was doing any at all.

Even going was a big deal. I was so deflated at having to miss a second session of chemo that I totally lost my mojo and couldn’t see myself summoning the energy even to pack, never mind get on a plane. My husband persuaded me to go and I’m very glad he did. I didn’t do any group riding; that was never in the plan. However, despite not having been out on my bike back home since last October but hugely inspired by the enthusiasm of the other women on the camp, I hired a bike. Among other things, I did a short ride to a beautiful cove that I’d never have visited had I not been on the bike. It felt unbelievably good to be on the bike again. I got to spend some time with a friend from London who was also there, hang out with some women who are members of Bella Velo, the women’s club I’m still a member of here at home, and see again some women I’d met before on previous camps run by the same lovely company, Mellow Jersey. I am so grateful to Emma and Tony of Mellow Jersey for suggesting I come out. The last time I was there was right at the start of the coronavirus pandemic, when in very dramatic fashion we had to evacuate the island from one day to the next.

Finally, just last weekend, I made it up to my native Glasgow for my older brother’s 60th birthday party. It was such a joyous occasion, filled with so much positive energy. It’s not often my five brothers and I all manage to get together at the same time and it always feels very special when we do. I think the last time we were together may have been at our mum’s funeral in September 2020, mid-pandemic. The pandemic is very much still with us, with rates particularly high in Scotland. Regardless, the party went ahead and there was lots of dancing and singing – including a Karaoke rendition by my older brother and me of an old family favourite, The Gambler, that would have had the original singer Kenny Rogers turning in his grave!

All three trips were priceless, especially as it really wasn’t certain that any of them would happen pretty much right up until the last minute.

I’m relieved to be back on chemo, even though I’m aware I may not get too much more out of this particular one. I’ve had both sessions of Cycle 6 of eribulin and am now a few days into the two-week break.

Regardless of what the PET CT scan shows, it appears that an unconnected issue is brewing that may need addressing in rather a brutal way. Thus the MRI scan.

Back to today, though. One son is back home from uni for the Easter holidays and I’m already enjoying basking in his presence. Also, I’m looking forward to heading off to Spain next weekend where my husband and I will spend time with some very good friends, eat some good food and hopefully feel some sun on our shoulders.

Choosing to go bald

I’m bald, for the second time in my adult life.

The first time I lost my hair was in mid 2015/early 2016. That was as a result of the intravenous chemotherapy I received as part of my treatment for primary breast cancer. My hair grew back within a few months of finishing chemo. 

Then in Spring 2019, I was diagnosed with secondary breast cancer. The original cancer had spread and was in my bones and bone marrow. Almost three years into treatment for that, I’m once again on iv chemo and once again I have no hair.

This time, I feel much less of a need to wear a wig. In fact, I actively dislike wearing the one I’ve got. I’ve worn it just a handful of times since I shaved my head just before Christmas. I now much prefer wearing either some other kind of head covering – regular beanie hats or headwear specifically designed for people with chemo-related hair loss – or indeed going bare-headed. I wasn’t expecting to feel this way and I’ve been thinking about why I do.

Lots of women who lose their hair and choose to wear a wig during primary breast cancer treatment give their wig away once they finish treatment and their hair grows back. I didn’t. I just couldn’t. I always knew I was at high risk of recurrence and I always thought I might need my wig again. I wasn’t wrong.

So the wig I have now is the same one I wore during my original treatment. 

I remember how, initially, I hated wearing it. Once I’d got used to it, though, I loved how it allowed me to disguise the fact I had cancer. It felt empowering. I went bare-headed in the house among family but never in public and only very, very rarely among friends.

Now the wig feels heavy on my head. It’s uncomfortable. Also, unlike the last time, it’s nowhere near the colour my hair was before I shaved it off. It feels much less “me” than it did before. Fundamentally, I think it’s because I feel much less of a need to disguise the fact that I have cancer. The first time round it was temporary; my cancer was being treated “with curative intent”. Now, it’s permanent and treatment is palliative, aimed at stopping or slowing the cancer from spreading, maintaining as high a quality of life for me for as long as possible and alleviating symptoms. Thankfully I’m currently feeling really well. Indeed while there have been some quite difficult periods, I’ve been well for much of time I’ve been undergoing treatment. 

It’s worth noting that this time I chose to shave my head. I could have lived with my hair as it was but I’d had enough. It had become terribly thin after two rounds of eribulin, the iv chemo I’m currently on. Clumps would come out when I brushed it or when I ran my hands through it. It wasn’t falling out on its own, though, and I could have got a haircut – I’d already had one not long before – that would have disguised quite how thin it was. With primary treatment, so much of it was falling out that I really had little choice but to shave the rest of it off when I did. It then never grew during all the time I was on chemo and for a month or so afterwards. This time, it hasn’t stopped growing; I’ve had to buy a head shaver, which I use perhaps once or twice a week. The question for me at some point will be when to stop shaving and let it grow out.

I generally feel a sense of liberation when I take off whatever head covering I’ve been wearing. I like the fact that I have the courage to, as I see it, be myself. It’s not always easy. If it’s a new situation, I’ll be nervous beforehand. I always consider the impact it’ll have on my “audience”, as the last thing I want to do is make people feel uncomfortable. Some well-meaning friends have said I shouldn’t care what other people think but I can’t help it.

It’s much easier when I’m among strangers or am outdoors. By choice I’ve gone bald when I’ve been out walking, whether on my own or with friends. I’ve been bare-headed at the cinema, at the theatre, on the tube or just walking down the street.

Les Gets, French Alps

We’re lucky enough to have been skiing in France – during the 12-day break I had from hospital that I wrote about here – and I’d sometimes go bald when we stopped for coffee or hot chocolate. And cake.

It felt fabulous having the sunshine and fresh mountain air on my head – although I soon had to put a hat on against the cold! 

Heated outdoor pool at Hampton, southwest London

I’ve started swimming again, where I have little choice in the matter. Also, I had a lovely session at a spa last weekend with my two London-based nieces – again, it was go bald or don’t go at all and miss out on quality time with two of my favourite people.

Even with headwear on, it’s obvious I’m bald underneath. However, I haven’t yet felt able to bare all in the pub, on video calls with work colleagues, or, perhaps ironically, at hospital appointments, whether with the consultant or at the treatment unit. With the last of these, I guess on some level I worry that I’d upset people who have just started chemo and know they are going to lose their hair. 

If I’m due to meet friends who’ve not seen me bald before, I’ll let them know in advance that I won’t be wearing any head covering when I see them or that I’m likely to take it off at some point. On a couple of occasions, I’ve asked people if they’d mind if I took off my hat. They’ve always said without hesitation to go ahead.

Sometimes you completely forget just how different you look. You only remember when you realise someone has seen you and done a double take or is smiling kindly at you for what you initially thought was for no obvious reason.

I do think it’s good to normalise cancer. That was part of the reason I started this blog all those years ago. It’s surely a positive thing for people to see individuals who clearly have cancer doing “normal” things. Our situation might be grim, but we’re out there like millions of others with or without disabilities, obvious or not – doing the shopping, working, in the pub drinking beer and laughing with friends, on the tube, walking the dog, swimming, or just sitting on a bench resting. Essentially just being.

I’m not evangelical about it. Everyone should tackle their personal situation in the way that works best for them. For now at least, this way works for me. 

Notching up Cycle 3 of my latest chemo

Last week I went ahead with the first session of the third cycle of the iv chemo that I’m on. This afternoon I had a blood transfusion that will enable me to go ahead later this week with the second of the two sessions that make up the cycle.

Things are far from perfect on the blood front – thus today’s blood transfusion, for example – but they’re not disastrous. I’m just relieved to be notching up another cycle of the chemo that I started at the beginning of December.

The fact that I’ve only been on this chemo – eribulin – for a month-and-a-half means it’s still early days in terms of knowing whether it will be successful in keeping in check for a decent length of time the metastatic breast cancer for which I’ve been having treatment since late Spring 2019.

That said, there is another thing about which to feel relieved – indeed perhaps encouraged. My tumour marker, which in my case is a good indicator of cancer activity, has fallen again. While we don’t have bang up-to-date results, the test done early in Cycle 2 showed that it’s the lowest it’s been since I was first diagnosed. It’s not everything, but it is a very important part of the overall picture. Things can change very quickly, but falling levels at any time are clearly far better than rising levels.

Eribulin, also known as Halaven, is the fifth treatment I’ve been on. The previous four worked for varying lengths of time before my cancer outwitted them and spread a little more each time. The last treatment – paclitaxel, also iv chemo – only worked for a few months so it’s understandable I’m nervous about how I’ll fare on this latest one.

The cancer is in my bone marrow among other places and is preventing my body from making healthy blood, particularly red blood cells. Blood transfusions* – to increase my haemoglobin level – have become a way of life. I’ve been having them almost monthly since May last year. However, on the past two occasions, ie since starting on eribulin, I’ve needed one unit rather than two. In my world, where not bad news pretty much equates to good news, that’s a positive.

Any side-effects I had from eribulin over the first two cycles have subsided or are under control and I’m feeling really well. Each cycle lasts 21 days. Treatment sessions are on Day 1 and Day 8. My Day 8 session of Cycle 3 is on Wednesday this week. Barring any mishaps, there will then be a full 12-day gap before my next hospital appointment, which will be for blood tests towards Day 21 of this cycle. Then the whole thing starts again, beginning with an appointment with the consultant where you find out whether you need another transfusion, whether your tumour marker has gone up or down, whether things are looking good or whether there are signs of trouble and, ultimately, whether you will – as you fervently hope – go ahead with the next cycle.

I’ve been at the hospital twice almost every week since starting on eribulin. I’ll accept whatever it takes to keep me well, but sometimes it can feel pretty relentless. I’m really looking forward to the break. 

*Our two boys promised me as a birthday present last July that they would both become blood donors. Covid jabs, Covid infections, colds and other assorted obstacles got in the way but the older one (23) is indeed now a donor. I’m delighted. The younger one (21) almost made it but found out on the day he was due to donate that he’d have to wait another two months as he’d recently had his ear pierced. He’ll get there.

My festive A to Z (chemo side effects included)

I’m very close to the end of my second 21-day cycle of eribulin, the iv chemo I moved on to at the beginning of December as part of the latest pharmacological effort to stop my metastatic breast cancer from spreading further around my body. 

There have been side effects but they’ve been tolerable. Physically, on the whole, I’ve been feeling more than fine. Emotionally, too, I’ve been feeling stronger. I’ve largely put behind me the disappointment of the PET CT scan that showed that my cancer had outwitted paclitaxel, the chemo I was on before I switched to eribulin. 

I look back over the past six weeks and, despite multiple trips to hospital for treatment sessions and associated blood tests and/or blood transfusions, cancer has definitely not been front and centre.

There has, of course, been Christmas. With the Omicron variant of the coronavirus rampaging around the country, there were very few of us whose plans for the holiday period were not disrupted at least to some extent. Thankfully, we escaped pretty much unscathed, disappointing as it was to cancel several social engagements we’d really been looking forward to.

Christmas is a time for lists, whether you’re writing to Santa or shopping for presents or for the food for Christmas dinner.

Here’s another list of sorts that you may be interested in. It’s my festive A to Z!

A

Appetite. This was all over the place during the first cycle of eribulin. Some days I had no appetite. Other days I had a huge appetite. On yet other days I wanted to eat but my mouth was so dry that I found it hard to swallow. Things are much more stable now.

B

Beef Wellington. For the third Boxing Day in a row, our two boys made Beef Wellington for dinner. The shape may not have been perfect this year but it was just as good as the previous two offerings! What an absolute treat.

Blood tests. I had my latest round of tests this morning. I’ll get the results on Wednesday when I see the consultant. All going well, I’ll start Cycle 3 of eribulin later the same day.

C

Chemo. Each 21-day cycle of eribulin – also known as Halaven – comprises two treatment sessions. These take place on Day 1 and Day 8 of the cycle, with blood tests done one or two days before each session to check to see whether it’s ok to go ahead with the next one.

Christmas Day. An extremely pleasant relaxing and relaxed day that involved for my husband and me a walk across Tooting Common, a pint in a local pub followed by drinks at a friends’ house across the road, then, later at home with the boys, a delicious traditional Christmas dinner, board games and a film.

D

Dry. We did think that we might do “Dry January”, where you go the whole of the month without drinking any alcohol. It didn’t take us long to decide life was too short for such sacrifices so we’ve decided instead to cut down. Perhaps “damp” rather than ”dry” would be more appropriate for this entry!

E

Exhibitions. My husband and I have been taking advantage of the fact that central London is very quiet to visit a few of the exhibitions that are on at the city’s museums and art galleries. It’s been fun.

F

Fatigue. I’ve experienced this in its extreme form where you feel like you’re walking through treacle and you really just have to stop and, ideally, sit or lie down. I’ve also experienced bog-standard fatigue, mild fatigue, and no fatigue at all. It’s fair to say chemo takes it out of you.

G

Gin. Sloe gin made by a friend or gin from Tiree, the tiny Hebridean island where we spent a week in October. I’m not fussy.

H

Hair. Ongoing thinning and loss of head and body hair.

Head. Shaving thereof.

Haemoglobin. The cancer is in my bone marrow among other places, affecting my body’s ability to make healthy blood. It particularly affects my red blood cells. My haemoglobin level is constantly low. If it goes below a certain level, I can’t have chemo. During both of these first two cycles of eribulin, I’ve had to go to hospital on or around Day 15 for blood tests to have it checked. I had one unit of blood transfused during the first cycle but I haven’t needed one during the second cycle. That is good. 

Heartburn. A side effect of eribulin. Painful, not pleasant.

I

Indecision. I’ve spent hours looking at flights to various places but haven’t yet taken the plunge and booked to go a somewhere. Watch this space.

J

Jelly. Yes, jelly, that weirdly coloured gooey stuff you should really only eat at children’s birthday parties. It was a godsend on days during my first chemo cycle when I had no appetite and/or a dry mouth. 

K

Kleenex. Nose hair is one of those things most people (or at least most women) don’t realise they have. However, you notice when you don’t have it (see above under ”Hair”) as you have a runny nose much more frequently than you used to. You therefore need plenty of tissues – not necessarily Kleenex but it was the best I could think of for the letter ”K”!

L

Lateral flow tests. I’ve lost count of how many I’ve done. Thankfully, they’ve all been negative.

M

Metoclopramide. This is an anti-nausea drug I take to stop me feeling sick after I’ve eaten. I’ve more or less got this under control now. 

Metal. Some food tastes metallic in the days following chemo, after which it goes back to normal.

N

Nata. As in “pasteis de nata”, those delicious little Portuguese egg custard tarts. A good friend made a surprise delivery of a box of four. Yum!

O

Optician’s. I stepped on my glasses and broke them. I don’t have a spare pair (thank goodness I also have contact lenses). An appointment has been made at the optician’s for an eye test and to buy a new pair of specs.

P

Priority PCR test. I’ve been sent one of these as part of a government initiative to ensure that clinically extremely vulnerable (CEV) individuals such as myself, should we catch Covid, get timely access to one of the new drugs that are now available for treating the illness.

Pubs. There have been plenty of visits to the pub. Again, we’ve taken advantage of the fact things have been quiet.

Q

The Queen’s Speech on Christmas Day. We somehow missed this!

R

Roast potatoes. You can never have too many of these with your Christmas dinner!

Rummikub. We played a few rounds of this on Christmas Day. 

S 

Steroids. I take these for two days after each chemo session, to help prevent nausea. I have a huge appetite for two days and, once I start talking, it’s hard to stop.

Swimming. I managed a couple of sessions in early December, before the start of the massive surge in Covid cases. It may be time to start thinking about going again.

T 

Tumour marker. In my case, my tumour marker is a good measure of how active my cancer is. The marker level went down during the first cycle. I’ll find out on Wednesday what it’s done in Cycle 2. Fingers crossed that it’s stayed where it is or has gone down further.

Tennis. I still can’t quite believe that I have been back on the courts. This disease saps your confidence and I’d convinced myself that, with my haemoglobin level being so low, I wouldn’t have the energy to play. In the end I played for around 40 minutes, with a fabulous bunch of women from the tennis club of which I’m still a member. I hadn’t played for many, many months and I absolutely loved it.

Theatre. A friend very generously invited me to the theatre in the run-up to Christmas. That too was a lovely treat.

U 

University. Both our sons came home from uni for the Christmas holidays. As always, it was/is great to have them around. The older one has gone back; the younger one is still with us. Both are in the middle of final year exams. These are still being done online. By the time they finish, they will have had less than six months of “normal” university – from a three-year degree.

V

Vaccines. I’ve now had my booster jab, bringing to four the number I’ve had overall. CEV individuals were offered three jabs as part of the primary vaccination programme and then also a booster.

Volunteering. On New Year’s Day morning, I volunteered at my local Parkrun. I put back in order some of the bar codes of the 299 people who turned out that morning to run, jog or walk the 5k route. I’ve volunteered a couple of times now since I myself stopped running.

W

Wig. I have renewed my acquaintance with the wig that I last wore in February 2017.

Walking. Lots and lots and lots of walking.

X

This may be cheating but ”x” is for the challenging letter ”x” in Banagrams and Scrabble, two of our favourite word games. We played both of these more than a few times time over the holidays.

Y

Year. Another year has passed. It’s been very hard for many on many fronts. On a personal level regarding my health, it’s hugely disappointing that three different lines of treatment stopped working over the course of just 12 months. In many ways, though, it’s been a wonderful year. If you follow this blog, you’ll have followed the many ups and downs.

Z

Zoom. We hadn’t used the Zoom online chat service for a while but it came back into its own over Christmas. My book group had its Christmas meet-up on Zoom where, instead of the Secret Santa we would have done had we met in person, we bought ourselves a present and did “show and tell”! On another occasion, we were able to chat to our friends in Madrid.

And that’s it. Happy New Year, everyone!

From one chemo to another

I had hoped to go the full six, 28-day cycles with paclitaxel, the intravenous chemo I was on as part of my treatment for the breast cancer that’s spread to my bones and is in my bone marrow, affecting my body’s ability to produce healthy blood.

That would have taken me to early/mid February next year. Frustratingly, my cancer had other ideas. I’m now no longer on paclitaxel and I’m due to start a different chemo – eribulin – on Wednesday this coming week. 

Yes, I was annoyed and frustrated and angry and sad and, yes, I swore a huge amount out loud to myself once the results of the half-body PET CT scan that sealed my fate with regard to paclitaxel had sunk in. I got the results on Tuesday this past week. I’m not going into detail but they showed “progression of the skeletal metastatic disease” and “nodal and widespread metastatic activity… suggestive of disease progression”. The paclitaxel session I was due to have two days later was duly cancelled.

A few days on, I’m more settled but I’m still also massively pissed off.

Of course it could be worse. However, most of you know that I’m a great advocate of the sentiment “just because it’s not worse doesn’t mean it’s not shit”. It is shit. Every time a drug in your limited treatment arsenal stops working is shit. That said, there’s still no visceral spread and there are no concerns regarding spinal cord compression. There are options and there is a plan. That plan is eribulin (brand name Halaven).

My tumour marker level had tumbled during the first and second 28-day cycles of paclitaxel almost to an all-time low since my secondary breast diagnosis in Spring 2019. When my tumour marker level is falling, it tends to mean the cancer is less active. It had edged up a little during the third cycle but it was still very low relative to where it had been when I started on paclitaxel in mid-August.

The fact that the marker had gone up at all was disappointing, but not disastrous. I’d also been experiencing some pain in a couple of joints on a sporadic basis. On a positive note, the results of the spinal MRI scan I’d had recently had come through, showing no change from my previous one, in July. It was decided when I saw the consultant at the end of Cycle 3, on Wednesday 17th November, that I should go ahead with Cycle 4. I had the first session a couple of days later, on Friday 19th, following the now seemingly standard blood transfusion. On Thursday 18th, I had a half-body PET CT scan, which covers from the top of your head to above your knees. As with the MRI scan, my last PET CT scan had also been in July.

It’s fair to say things started to get a bit messy on the Wednesday night (17th). I awoke with considerable pain in various joints on my left hand-side at various points during the night. It largely eased after I took some strong pain killers. It happened again the following two nights, although the episodes on Wednesday were by far the worst.

Things were largely ok during the day. I’d signed up as a volunteer at my local Parkrun on Tooting Common in southwest London at 9am on the morning of Saturday 20th. I was due to be one of the barcode scanners at the end of the run. I felt wrecked but I wasn’t in pain so I went along and did that. I’m glad I did. I’ve had so much out of Parkrun; it’s good to give back.

To cut an even longer story short, some pain returned on the Saturday morning after I got home from Parkrun. I’d run out of strong painkillers and I was exhausted but couldn’t sleep. I ended up being admitted to the hospital where I’m being treated and kept in overnight while they sorted out my pain meds. I was not screaming in pain or anything like it but it was not pleasant. I was discharged on Sunday afternoon, by which time I was absolutely fine. I left with copious amounts of both strong and very strong painkillers.

I cannot fault the care I received in hospital but it was all rather frustrating as I’m pretty sure I could have resolved the matter at home had I not run out of my usual painkillers.

On the Monday, I was contacted by the superbly efficient clinical nurse specialist who’s a critical part of the breast cancer team at the hospital. She said she and the consultant were fully aware I’d had an overnight stay and that the consultant would like to see me the following day. I didn’t realise it at the time, but the results of the PET CT scan were already through. Those, together with the pain-related episodes, meant it was time to move on from paclitaxel. 

With Tuesday came a detailed review of the scan results and my signing the consent form to start eribulin.

So what is this new treatment? 

With paclitaxel, it was a 28-day cycle. Each cycle consisted of three iv treatment sessions. These took place on Days 1, 8 and 15, with blood tests the day before each session and then again at the end of each cycle, followed by a meeting with the consultant on or around Day 28. Each treatment session took a couple of hours or so, with the first session of each cycle taking an additional hour or so as this was when I received my monthly infusion (also intravenously) of the bone-strengthening drug, Zometa (zoledronic acid). The standard number of cycles one has on paclitaxel if things are going ok is four but this can be upped to six.

With eribulin, it’s a 21-day cycle, with each cycle consisting of two treatment sessions. Treatment is on Days 1 and 8. As with paclitaxel, there are blood tests the day before each session, to check that it’s ok for that session to proceed. There are also blood tests at the end of the cycle, followed by an appointment with the consultant 1) to go over the blood test results; 2) to discuss how you’ve been coping with the treatment; and 3) hopefully that you can go ahead with the next cycle.

Unlike with paclitaxel, there is no limit to the number of cycles of eribulin you can have. As long as you’re tolerating it well and it’s working, you keep taking it. The longest the consultant has had a patient on it is 13 months. Fingers crossed it works for me and that any side effects are tolerable – as they were, it has to be said, with paclitaxel. My feet feel better than they’ve been in years and I’m pleasantly surprised not to have lost all my hair. I was also feeling really well overall.

There are some overlapping potential side effects between paclitaxel and eribulin, but of course each drug also has some that are unique. Somewhat strangely, bone marrow suppression is a potential side effect of eribulin – but that’s also precisely among the things we’re trying to treat.

On the bone-strengthening drugs front, I’m switching from Zometa to denosumab (Xgeva). We’ve switched between the two before. The idea is that a drug that works in a different way will have a more beneficial effect. That, in essence, is also the idea behind switching to eribulin. 

Eribulin is delivered intravenously – that’ll be through my port – over a period of just two to five minutes. Denosumab is given as a quick injection – in my case to the abdomen – once every four weeks. It’s clear treatment sessions at the hospital will be much shorter than when I was on paclitaxel and Zometa.

With my haemoglobin level and resulting energy levels being largely low, I now rarely cycle and I don’t run at all.  Swimming has become my new favourite pastime. I don’t swim far and I don’t swim fast but I’ve always loved swimming and now I do it once or twice a week. I’d like to do it outdoors but I get cold very quickly and if I don’t have a way of getting warm immediately, I’m cold for hours.

This desire to feel the sun on my shoulders was in grand part behind my decision to escape to a beautifully warm and sunny – and beautiful – Cyprus for a week in early November. 

Yes, you read correctly. Cyprus. Photo number one to the left.

And yes, you’re also right, my husband and I had indeed just been to Madrid.

The photo to the right was taken on the trip to Spain. It’s of me and two of my dearest friends, both of whom I met in Madrid in the early to mid-1980s when I lived there teaching English as a foreign language before coming back to Glasgow to finish my degree (in Spanish, what else!). We were in Madrid for a wedding; the woman in the middle is the mother of the groom.

My now husband and I met in Madrid in those same early days. We loved the city this time round as much as we’d always done.

And, yes, there is even more on the travel front. Before the Madrid trip, we had been to Tiree, a tiny island off the west coast of Scotland.

My husband and I were in Tiree with one of my brothers, John, his wife and my niece, one of their four children. We had a lovely week.

Madrid and Scotland had been in the diary for a long time. After months of coronavirus-related uncertainty – combined with uncertainty over how I might be feeling health-wise – we were delighted that we were able to do both trips.

Cyprus was an impulse booking, done the day before I had my port inserted on 1 November. I just Googled ”Where’s hot in Europe?” and Cyprus won.

I’m happy to say I swam outside every day of the Cyprus holiday in the sunshine, either in the pool or in the sea – indeed sometimes both on the same day!

There is little that can beat the feel of the sun on your shoulders drying you off after you’ve been swimming.

The sea was warm, the water was clear. It was an absolute delight. I went with one of my brothers, Peter. We took dozens of photos. The one above on the left is among my favourites. 

I couldn’t stay in the water for long at any one time as I’d only recently had my port inserted. The wounds from the two incisions from the procedure were healing well and while I wasn’t concerned about getting them wet, I didn’t want to overdo it.

Before I had the port inserted, I thought I was ok with the chemo nurses taking several attempts to find a decent vein through which to administer chemo or blood transfusions. Since I’ve had the port inserted and we’ve now used it several times, I have to say it is a game-changer. It makes things so much easier.

The procedure to insert the port only took some 40 minutes. However, with the pre-procedure preparation and the post-procedure monitoring, I was at the hospital for the best part of the day. The procedure, which is done under local anaesthetic, was the weirdest experience. You feel the sensation of cutting, pushing and shoving – but no pain. The port stands out from my chest; it looks weird but I’m totally fine with it.

Several other events have happened in my life, not relating to my treatment or travels. On my last day in Cyprus, I awoke to the news that the 57-year-old husband of one of my best friends back in Glasgow had died very suddenly and unexpectedly the previous night. A day or so later, the husband of my beloved aunt and godmother in New Jersey died, of advanced prostate cancer.

It’s easy to say, but this first tragic event in particular illustrates why worrying about one’s own mortality – or indeed about the mortality of sick parents, friends or relatives – is so futile. Enough sad/bad things happen that aren’t even on the radar. Be concerned, yes, but try not to over-worry. Events such as these will happen regardless. If anxiety about your or someone else’s future is becoming overwhelming, please seek help. And let the people you’re worrying about know you love them. That should make you and them feel better.

I’m hoping to go up to Glasgow for my friend’s husband’s funeral later this month. It will depend on how I feel after starting this new chemo and on the ever-changing situation with regard to the never-ending pandemic. 

In the meantime, I’ll be booking regular swim sessions at the two local leisure centres to which I’m fortunate to have access. I may also be on the lookout for another break that involves winter sun and warm seas. If you have any ideas, let me know!

To finish, fingers crossed eribulin works for longer than either paclitaxel or indeed the drugs I was on before that. I’m not aiming for or expecting anything, but more than just a few months would be very welcome.

Two days in October

This started out as an account of what’s been happening since my last post on 11 October. When I got to 19 & 20 October, I decided that together they deserved a post of their own. I’m pretty sure you’ll agree that they were two rather eventful days. Among other things, the first of the two days was our older son’s 23rd birthday.

19 October

I have an appointment with the consultant oncologist in the morning to go over the results of the blood tests I had done yesterday. Today is the final day of my second cycle of the iv chemo I’m having as part of my treatment for the breast cancer that’s spread to my bones and is also in my bone marrow, affecting my body’s ability to produce healthy blood. All going well, I will start Cycle 3 tomorrow. I’m currently on 28-day cycles of iv paclitaxel. This involves treatment sessions on Days 1, 8 and 15 of each cycle with blood tests done the day before each session. Each treatment session lasts two to three hours. I see the consultant at the end of each cycle to review how things are going.

As well as having blood taken for the usual tests, I have an extra vial taken so they can do a cross-match. This is in case my haemoglobin has fallen – as it had at this stage in Cycle 1 – and I need yet another red blood cell transfusion.

I see the consultant. It feels like groundhog day. Things are indeed much the same as they were at this stage in Cycle 1. My tumour marker has fallen again (this is very good news) and everything is looking good on the blood front other than with regard to my haemoglobin (this last part is not good news). The level has fallen markedly since my third and final chemo session of Cycle 2 two weeks ago and is again below the level where a red blood transfusion is needed. It’s not quite as low as it was four weeks ago when I last had a transfusion but it’s pretty low – the second lowest it’s ever been. That’s my afternoon accounted for – four hours plus having a transfusion of two units of red blood cells in the walk-in oncology care unit at the hospital.

Immediately after the transfusion, my husband and I head off in the car to Brighton, where our older son is at uni. He’s 23 today. The plan is for my husband and I to take him out for supper, stay over in a hotel then drive back to London the following morning, arriving in plenty of time for me to get to the hospital in time for my afternoon chemo session.

That, at least, is the plan. In the event, our car breaks down when we’re just a few miles from Brighton. We manage to get the car to a safe place. We decide to leave it where it is overnight, continue with our plans for a nice evening with our son and sort out repairs the next day. 

We all have a really lovely evening. This is followed by a very disturbed night for my husband and me. The wind picks up at around midnight. We hear it howling and it’s accompanied by heavy rain battering on the windows. When it all eases off – at around 2 or 3am – we’re treated to squeals, shouts and laughter from youngsters leaving the clubs on the seafront, just down from our hotel. Who on earth goes clubbing in a storm on a Wednesday night? Students, that’s who.

We eventually get to sleep although, as we Scots say, it’s blowing a hooley again in the morning. I go for a walk to take some photos of the waves and the famous pier. It’s so windy that people use railings and lamp posts to steady themselves as they walk along.

We recount our night to our son. He informs us that our hotel room is above one of the most popular post-clubbing kebab shops in Brighton. That explains the noise. He also tells us that one of the seafront clubs hands out free donuts! As with many things that young people get up to, I feel a mix of annoyance, respect and, I guess if I’m being totally honest, envy. It crosses my mind that I should have made good use of the blood transfusion I’d just had and joined the revellers for a night of dancing. I settle instead for a swim before breakfast the following morning in the hotel pool.

20 October

I get the train back to London in the morning and leave my husband to sort out the car. I crack on with the chemo session. Because it’s the first session of a new cycle, I also have my regular monthly infusion of the bone-strengthening drug Zometa.

As on the previous few occasions, it takes a while for the oncology nurses to locate a vein into which to insert a cannula, even with the use of a mobile ultrasound machine. This is likely to be the penultimate time they will have to do this as I’ve been given a date – 1 November – to have a port inserted. I don’t in fact mind the nurses taking several attempts to find a decent vein. However, I recognise overall that it’s neither ideal nor sustainable.

After chemo, I head home to pack. We’re off to Madrid tomorrow for a long weekend! As with our trip to the tiny Hebridean island of Tiree earlier in October, this has been in the diary for many months. We’re going to the wedding of the older son of a couple I met when I first lived in Madrid over 35 years ago. We’ve been good friends ever since. I met my future husband in Madrid at around the same time. When these friends invited us to the wedding all those months ago, we hoped we’d be able to go but we were always aware that Covid and/or my illness could thwart our plans. In the end, everything has fallen into place and we’re very much looking forward to going. We’ll spend time with other very good, mutual friends from around the same time. It will mean a lot to all us that we’ll all be together again, even though it won’t have been that long since we last all saw each other.

My husband arrives home from Brighton shortly after I do, driving a car with a new alternator. Cost of repairs, £300. Ouch.

That was just two days in October. Lots happened over the rest of the month but thankfully the other days were not quite as busy.

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.