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!