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. 

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!

Starting iv chemo and celebrating a special 21st birthday

A lot has happened since my previous post on 7 August.

The bottom line health-wise is that I have moved onto a new line of treatment, intravenous chemotherapy involving a drug called paclitaxel. I had my first treatment session on 23 August and my second session yesterday.

Life-wise, our younger son has turned 21 and it has been a real joy to be able to celebrate this milestone.

We thought I might be catching a bit of a break on the cancer front. However, blood test results from a few weeks ago showed that, overall, things really weren’t going well in terms of my bone marrow function. In addition, the important CA 15-3 tumour marker had gone up again, meaning the cancer was more active than it had been recently.

The situation was complicated but the consultant concluded that it was time to come off the treatment I’d been on for almost four months – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin), taken once daily in tablet form – and move on to the next line of treatment, iv paclitaxel.

I knew it was coming and I understand the rationale for changing. We really need to get a grip on the bone marrow issue and we can’t ignore potential tumour progression. However, I’d hoped it might not happen for another few months. We’d discussed the matter at length and the consultant knew how keen I was to hold off iv chemo for as long as possible.

There were various reasons for this.

One reason is that I’m now tied much more to the hospital. I’m on a 28-day treatment cycle, with treatment sessions on Day 1, Day 8 and Day 15. Each session takes about two hours. You also need to have blood tests done before each of the three sessions of each cycle, etc, etc, etc.

Another reason is that I know this drug. I had it as part of my treatment for primary breast cancer way back in Autumn 2015. It had a very good effect on my cancer then and we obviously hope it will this time too. However, it is also responsible for the “chemotherapy induced peripheral neuropathy” – essentially nerve damage – that I have in my feet that even now can stop me from sleeping. During the day it’s not so bad, but it is there. We’ll keep a very close look-out while I’m on paclitaxel now for signs of additional damage. It would be too bad if the treatment worked well but again brought with it this distressing and, it has to said, potentially debilitating side effect.

Then there are all the other common side effects, including likely hair loss. I didn’t like losing my hair last time. If I lose it this time, I don’t think I’ll like it any better.

All in all, I think I can be forgiven for feeling rather nervous about starting this particular treatment again.

Despite my concerns, though, now that I have started treatment, I’m desperate for it to work and for me to stay the course. It’s not as if the previous regime I was on was a breeze. In fact, at times it was hideous, but you put up with a lot when you know there are limited options ahead of you, each potentially more toxic than the previous one.

Discussing it all with the consultant on 11 August, any hopes I had that my husband, two young adult sons and I might fly off to Spain in late August/early September went flying out the window. Following right behind were plans for a trip to my home city of Glasgow that I’d hoped to take before going to Spain. Other trips were and are – as of today, at least – still planned, potentially for later in September and certainly for October.

I’ve had dozens and dozens of appointments with doctors since my diagnosis of primary breast cancer in the summer of 2015. I’ve cried at only a few. This was one of those. It felt like we were definitely moving into new territory and I was feeling very sorry for myself.

The transition to chemo and the weeks preceding the move have been really quite traumatic. This may not be a complete list but they have involved tiredness and extreme fatigue, a lack of appetite, dry mouth, insatiable thirst, being tested for diabetes, sore feet, badly disturbed nights, joint pain that I’ve been told is not related to the bone mets, dental discomfort, a 2am trip to A&E with a high temperature and suspected serious infection (nothing was found), a couple of blood transfusions – and me feeling very, very low and dejected.

This is the fourth line of treatment that I’ve been on since I was diagnosed in April 2019 with secondary – incurable but treatable – breast cancer. When I was diagnosed, it had spread to my bones, with “bone marrow involvement”, meaning it was impairing the ability of my body to make healthy blood.

More than well over two years on, the various drugs I’ve been on have managed to keep the cancer from spreading outside of my bones and into, say, my liver, or my lungs, or my brain. I would say I have been largely healthy, despite experiencing some quite nasty side effects and, of course, despite having the illness in the first place. However, the real and serious problem at present is bone marrow suppression. We know the cancer itself is causing at least some of this but it doesn’t help that the treatments themselves can also cause your haemoglobin and neutrophils to fall. For those of you who are interested in the detail, my platelets are also not in a great way – that’s a new development and a new concern.

The plan initially is to have four 28-day cycles of iv paclitaxel, assuming it works and I cope with the toxicity. The number of cycles could be increased to six if things go exceedingly well. I’m not second-guessing anything. I’ve already had to have a one-unit blood transfusion and several neutrophil boosting injections between the first and second sessions.

Let’s hope things settle down, that I’m not afflicted with additional peripheral neuropathy, and that I can make the most of the two-week breaks between cycles.

I’m to have blood tests tomorrow before seeing the consultant for a mid-cycle debrief. They’ll take an additional vial of blood for a “cross-match”. This is when they test a patient’s blood against a donor’s blood to check that the two are fully compatible. This happens regularly now when I have my regular blood tests done, “just in case” I need a transfusion. I’m getting used to it.

I think I’ll need yet another set of bloods done the day before my third treatment session of this first cycle, which is scheduled for 7 September.

To say it’s been a tough few weeks – physically and emotionally – would be a huge understatement. Through it all, ordinary life goes on. Today, for example, I’ve felt great. I wrote this blog and this evening I went out on a three-mile walk. Earlier on, I had a nice chat on the phone with one of my brothers. Yesterday, between having bloods done in the morning and my chemo session late afternoon, I did a few hours’ work. I’ve been taking a bit of a break from work recently.

I’d been feeling so wretched that I hadn’t been meeting up so much with friends. You feel less like making plans to socialise in case you have to cancel at the last minute. A couple of weeks ago, my husband and I feared we’d have to pull out of at really short notice a lunch date in central London with friends we hadn’t seen since last summer. We’d really been looking forward to it. I’m so glad we made it – not just for the company, which as always was excellent, but to experience the zaniness of the place we had lunch. The photo is of Cath and me, somewhat over-excited in the sci-fi toilets; each pod is an individual loo!

Some days, I really haven’t felt like getting out of bed – especially when I’ve slept particularly badly that night. I do, though, one always feels better for it. On those days, even picking up the phone when someone calls to chat can be a real challenge. Friends and family know the situation well enough not to be offended.

It can’t be easy for my husband but, throughout this whole thing, he has continued to be an absolute rock.

Among all the turmoil, our younger son turned 21 – a real highlight and milestone for any family. Family-wise we did a couple of low-key things – not on the day itself as he was off in Cornwall with friends. After the year many young people have had, we loved thinking of him mucking about in the sea and on the beach and enjoying big wide open spaces on the very day of his 21st. We have no doubt whatsoever that he was feeling the parental love and affection from a distance.

I think I deserve a medal for the most quickly and imaginatively cobbled together birthday cake – a slice of malt loaf with a candle on top! A few of our son’s friends popped round one evening soon after his birthday for drinks before heading out to a party. I decided they should sing happy birthday to him. They duly obliged. You can’t say I don’t make an effort!

Moving to oral chemo: different treatment, different approach, fingers crossed

It was pretty clear to me even before I got my latest blood test and scan results that I’d got as much benefit as I was going to get from the treatment I was on for advanced breast cancer. I more or less knew that when I had my next meeting with the oncologist, I’d be moving to a new treatment.

That was indeed what happened. On direction from the oncologist when we met at the end of May, I agreed to stop the treatment I’d been on since I was diagnosed a little over a year ago, skip the next possible treatment and move on to an oral chemotherapy drug called capecitabine. The treatment I’d been on didn’t involve chemo.

A change had been on the cards and while it’s disappointing to know that one’s exhausted the first in a finite number of potential treatments, at least it wasn’t a surprise or a shock. 

This new treatment is in tablet form.

You take it orally but it’s still chemo, as you’re reminded by the yellow warning sticker on the box the tablets come in telling you that the contents are cytotoxic and should be “handled with care“.

On to the rationale for moving on to capecitabine, which is also known by its brand name Xeloda. 

Well, there is no sign of any cancer outside of my bones and nor is there any sign that the cancer that’s in my spine is pressing on my spinal cord, where it could do serious damage – positives among the negatives. Things have progressed, though. There are new “skeletal lesions” in certain areas including in my pelvis and sacrum and in my right hip and left collarbone. In addition, my bone marrow is “more infiltrated”.

There are two aspects to my disease. The breast cancer for which I was originally treated for in 2015/16 has spread, or metastasised, to my bones. “Bone mets” weakens your bones and this in turn increases the risk of fracture among other things. It can also cause immense pain. As if that weren’t enough, the breast cancer has also “infiltrated” my bone marrow and so reduces my body’s ability to make healthy blood. Both aspects need to be managed in parallel. 

We’d known for months there was increasing cancer activity. Monthly blood tests had shown that levels of the relevant breast tumour marker (CA 15-3) had been rising since November. My bone marrow function remained stable, though, and rising tumour markers weren’t enough on their own to prompt a change of treatment. Also, the scans I’d had in November and February hadn’t picked up any meaningful or actionable change.

More recently, though, the blood test results overall had been showing a “continued though minor deterioration”. Among other things, my haemoglobin level had been falling. Despite this, I’d been feeling fine but over the past couple of months I’d become increasingly aware that certain physical exertions were leaving me breathless or were becoming too hard even to do.

So even before I got the results from the scans I had in mid-May, I knew things had changed. This time round, to no-one’s surprise, there was something to see.

Bone mets is hard to measure radiologically but there was enough change in the combined near full-body PET CT scan that I had compared to previous scans to be able to say for the first time that things were worse. According to the official report, “The interval change within the skeletal lesions in particular within the pelvis raises suspicion of disease progression.”

I’m in no pain so all this is happening without my having any awareness of it.

As for the MRI scan I had of my spine, “The pattern of marrow infiltration appears to be slightly more diffuse than previously and is concerning for progression.” It also confirmed “extensive metastatic disease throughout the visualised spine and sacrum.”

The blood tests confirmed that the tumour marker is still rising and that my haemoglobin level had indeed continued to fall. The former is not yet at the high level it was at when I was diagnosed in April 2019 although given the rate at which it’s been rising, it’d be there in a couple of months. As for the haemoglobin level, it’s near to what it was when, this time last year, the oncologist started discussing the potential need for a blood transfusion – which I subsequently had.

The results regarding the haemoglobin didn’t surprise me. Most obviously, just briskly walking up the two flights of stairs in our house to the loo had been leaving me breathless. (We’re lucky enough to have two bathrooms. At the moment, while we’re in pandemic mode, the one in the loft extension has been designated for my sole use.) 

Also, I’m playing tennis now that the courts are open and, while I love it, those explosive movements you make all the time have my poor heart pounding. As for running, I’ve more or less given up as I can’t even run fast enough to break a sweat.

Cycling is absolutely fine – you go at your own pace, you can stop and start when you want – and I’ve been doing plenty of that. The photo on the right was taken at the top of Reigate Hill in Surrey, half-way through a hilly, 40-mile ride with my husband a few days after moving on to chemo.

When I started treatment last May with abemaciclib (Verzenios) and fulvestrant (Faslodex), I was one of the first people in my situation to be put on this new combination at the hospital in southwest London where I’m being treated.

The most obvious next treatment was what I’d have been given had the abemaciclib/fulvestrant combination not been available then – a combination of two drugs called everolimus (Afinitor) and exemestane (Aromasin). While everolimus is also oral chemo, the combination is aimed at doing much the same thing as the drugs I’d been on, both over the past year and in the three years between finishing active treatment for primary breast cancer and being diagnosed with secondary – that is, stopping my cancer one way or another from getting the oestrogen it needs to grow. Capecitabine uses a different approach.

There was no reason to suggest the everolimus and exemestane combination wouldn’t work so I understand why the oncologist said things weren’t straightforward. However, to paraphrase in an extremely liberal way, I think her bottom-line recommendation was “let’s not faff about with more of the same and see instead if we can get a quick response with capecitabine”.

Depending on how things go, I could go back and try the treatment I’m skipping. Clearly at this stage I have no idea how likely that is but it is good to know.

With capecitabine, it’s a three-week cycle initially; two weeks on the tablets and one week off, with blood tests at the end of each three-week period. It can take time to find to right dosage.

If I tolerate capecitabine ok and it keeps things in check (remember we have the cancer in the bones and in the bone marrow to worry about), I’ll be on it for as long as it keeps working. Whether that’ll be weeks, months or years, we don’t know. It’ll be at least nine weeks before I have a scan to determine what effect it might be having. In the meantime, the regular blood tests that I’ll be having will give us some idea.

Also in the meantime, I continue with the four-weekly injections of the bone-strengthening drug denosumab at the day treatment unit.

My appointment with the oncologist – in-person, with masks – was on the last Thursday in May. I started on capecitabine the very next day. Having seen the way things were going, the oncologist had me tested a couple of months ago to see if I was in the group of people whose bodies are unable to metabolise capecitabine and would be likely to develop very severe side effects. I wasn’t. It’s strange what you become thankful for.

I was forced to make lifestyle changes from Day 1. For years on weekdays I’ve rarely eaten anything before 11am. However, I need to take these new tablets twice a day, at more or less 12 hours apart, within half an hour of eating. Given we have supper at about 8pm, I have to have had something to eat by around 9am. That really is not me but it’s amazing how quickly you adapt when you have no choice.

For breakfast on the first day, I had stewed prunes and yoghurt – a strange choice given that one of the very common side effects of capecitabine is diarrhoea. On that particular day, though, there happened to be some prunes in the fridge and, since I’m the only one in the family who likes them, I couldn’t let them go to waste. In fact, more than simply disliking them, my long-suffering husband can’t stand the smell of either prunes or yoghurt and refuses to be in the kitchen when I’m eating them! I usually drizzle some warm honey on top but he still can’t bear it.

The second day, a Saturday, I had a poached egg on toast. If I’m going to be forced to have an early breakfast, I decided, it may as well be nice. My resolve has petered out already, however; now I have a quick slice of toast and marmalade or jam, some fruit and a cup of tea, and I’m done.

Capecitabine can cause many of the same horrible side effects as other chemo drugs that are given via infusion. However, it works in a more targeted way compared with regular chemo and some of the standard side effects can be less severe. For good measure, though, there are some additional side effects that are specific to capecitabine.

On the hair front, I’ve been told to expect thinning but not loss. That’s something. I really wouldn’t have thought my hair could get much thinner than it is already but I guess I’m about to be proved wrong.

One of the more common side effects – that I’m looking out for and dreading getting – is palmar-plantar, or hand-feet, syndrome. With this, the palms of your hands and the soles of your feet can become red and  dry and flaky and sore and numb and swollen. It sounds horrendous and some people get it really badly. No-one needs that but for someone who plays tennis and cycles, it seems particularly cruel. I have already started moisturising my feet morning and evening in anticipation.

Exhausting one treatment and moving on to another is quite a sobering milestone psychologically.

Physically, ten days in on cycle #1 and I’m feeling fine. I wanted to write and post this before any side effects rear their ugly head. Once again, we can but hope for the best and see how it all goes.

And time goes by

I thought I’d more or less passed all my post breast cancer diagnosis- and treatment-related milestones. But then a few days ago I found myself having to put on a visor halfway through a game of tennis. It was a beautiful sunny morning but it wasn’t because of the sun. It was to stop my hair getting in my eyes.

I hadn’t had to do that since starting chemo in summer 2015. Don’t ask me how I managed it, but I kept playing tennis more or less all the way through chemo (Tennis II). I had eight sessions over 16 weeks. I lost my hair (Learning to live with a wig). I played with a wig on but of course it never grew so my fringe never got in the way.

I finished chemo at the end of November 2015. My hair started to grow back and I stopped wearing my wig just three months later, towards the end of February 2016 (In the end, the wig ditched me). It was very, very short at the time. Now, 16 months on from my last chemo session, I’ve lost count of the number of times I’ve had it cut. Given my experience on the court yesterday, it needs cutting again!

Summer 2015, though? That’s almost two years ago. I finished all the “big” treatments for my breast cancer  – chemo, mastectomy, radiotherapy – over 14 months ago and I still have thoughts every day about whether my cancer will come back. I find it hard to believe that anyone who’s had any kind of cancer that can come back doesn’t. If they exist, I want to know their secret.

But it’s ok. Thinking about something it is not the same as worrying about it. I don’t think you can stop a thought coming into your head. You can, however, decide what to do with that thought. You can dwell on it and let it worry you or you can acknowledge it, process it and send it packing if it’s not helpful. I now regularly do the latter, but it’s taken me a long time to get to this position of strength.

Time does indeed go on. I look back over the half dozen posts I wrote about recurrence last year in the months after my hospital-based treatment ended. I was clearly terrified and was convinced it was only a matter of time before my cancer came back and finished me off. That might still happen, of course. Indeed if I’m being completely honest, I have to admit that I still do expect it to come back at some point. But while I do still think about, I don’t worry about it, at least not in the almost all-consuming, anxiety-filled way I did then.

It’s still hard sometimes. You’ll have been fine for ages then there’ll be a “trigger” of some sort and you’ll be blindsided by a dark thought or a wave of melancholy that seemingly came from nowhere. When that happens, you have to just go with it and remind yourself that it’ll pass and that what you went through was really traumatic so it’s fine still to have big thoughts about it all.

With every little ache or pain I get, my first thought is still that it’s a late side-effect of the various treatments I had, a side-effect of ongoing treatment… or that my cancer’s come back and spread to wherever the pain happens to be. But while you can’t time or measure thoughts, I’m pretty sure these particular ones don’t last longer than a millisecond. If an ache or pain persists, well that’s a different matter; you have to get it checked. When someone suggests booking something for any length of time in advance, my first thought is still whether I’ll continue to be “cancer free” by then. That’s a big improvement on a year ago, though, when my first thought was not whether it would have come back by the time whatever we were planning came round but that it would almost certainly have come back by then. These days, as with the aches and pains, I force myself very quickly to move on and to focus instead on looking forward to whatever it is I’ve just booked. Life is good.

If my cancer comes back, it comes back. John Hurt, the great British actor who died of pancreatic cancer earlier this year, said: “We’re all just passing time, and occupy our chair very briefly.” We might as well make the most of it while we’re here. So here’s to life and to hair getting in our eyes.

This post is dedicated to the lovely Julie, my friend and tennis opponent from the other day who asked me how I was and in doing so inspired this post.

“Looking relaxed, happy and hairy”

I never thought I’d take being called hairy as a compliment, but when I posted a photo of myself on Facebook recently and a friend* commented that I was looking “relaxed, happy and hairy”, I had to smile. It’s nearly seven months since I finished the breast cancer chemotherapy treatment that rendered me bald (The great Sugar Loaf uncovering) and now I just look like another greying, short-haired, middle-aged woman.

I’ve already had one haircut and I’m close to needing another. The chemo has made my hair curly and everyone says it looks nice and thick. It really isn’t, though. In fact, the hormone therapy I’m taking causes your hair to thin, so that’s another delight to look forward to.

So am I more dark than grey or more grey than dark? I don’t care either way, but it seems the answer varies depending on who’s doing the looking. I come in after getting the haircut and younger son Finlay looks at me and says “It’s quite dark, isn’t it.” Five minutes later husband Andy appears and, subtle as ever, says “God, it’s really grey!” Go figure.

I still haven’t used a comb or brush. I towel it dry, add some ridiculously expensive “product” and off I go. I love not dying or colouring it.

The photo you see here is the one I posted on Facebook. It’s from two weeks ago, in Madrid, and I’m standing outside the flat I lived in when I first went to live there almost 33 years ago. I lived in Madrid for three years in all. I met Andy there. I still have good friends there. I love the place. Andy and I were there a couple of weeks ago for a bit of a treat (If planning a holiday is a clear sign of recovery…). In all the times I’ve been back since living there in the 1980s, I’ve never felt the urge to go and take a look at where I used to live. This time was different, I guess because so much has changed in the past year. The door to the block of flats was open. I could have gone in. I didn’t, of course. Because you can never go back, and that applies as much to early last summer, before breast cancer came on the scene, as it does to September 1983.

Back to the hair. The other day Finlay greeted with me with “Ooh, bed head!” rather than “Morning, mum”. We’re moving on.

*Thanks, Brenda!

Acupuncture, tennis, a haircut and going back to work

Good things are happening.

The biggest thing to report on the physical front – and this is massive – is that the peripheral neuropathy in my feet that was caused by the chemotherapy drug paclitaxel has improved dramatically over the past month.

Don’t get me wrong; that painful throbbing and numbness in the balls of my feet and toes is still there, but to a much, much lesser degree. It’s nowhere near as painful as it was and it’s now only very rarely so bad that I have to sit down and rub my feet to try and ease the discomfort. I used to have to do that pretty regularly. It no longer wakes me up at night. In fact sometimes it’s not even there when I wake up. This is still slightly disconcerting as I’d got so used to it; I wake up and lie there wondering what’s wrong and then I remember and savour the fact that it’s no longer there. It’s a lovely (non)feeling.

Now here’s the thing. This easing off of the chemo-induced peripheral neuropathy has coincided with my starting acupuncture. I know those of you who know me well will do a double take on reading that but, yes, I’ve had three sessions to date and I absolutely love it. Regardless of whether or not that has anything at all to do with the improvement in the nerve damage in my feet, I have to say I have never in my life felt as relaxed as I feel during those sessions. I have them through a lovely charity, The Haven. I did wonder what I’d let myself in for when in one of the sessions I felt a needle being placed in the middle of my forehead right where a “third eye” might be if we had one (think Cyclops), but by then it was far too late. It was half-way through a session and, anyway, I was so relaxed by that point that I really almost didn’t care.

Ironically, the peripheral neuropathy is now at its worst when I’m running. The last five minutes of this Saturday’s 5k Parkrun were a bit of a struggle.

There’s plenty more good news. I’ve been back on the tennis courts twice now, albeit playing with the soft balls children play with when they’re learning. You won’t be surprised to hear that it felt really, really, really – I could go on – good. It was fine in terms of my arm and shoulder and abdomen (where the big scar is), both when I was playing and in the following days. On a related matter, the cording in my chest and arm is really loosening up. While certain stretches are still painful, I’ve more or less regained full mobility in my arm and shoulder.

I’d asked the consultant who’s in charge of managing my lymphoedema when I met her a couple of weeks ago whether I should play. The swelling is currently only in the reconstructed boob and surrounding area (Looking forward to a “much more symmetrical overall shape”). If it develops in your arm, the consultant said, it’s as likely to be caused by (over)reaching for a tennis ball as it is from lifting a too-heavy shopping bag. Her advice then? “Do what you enjoy.” That was just the encouragement I needed. It basically confirmed what the consultant on the radiotherapy side of things had said a few months ago (Should I play tennis? “Yes, just don’t play Federer.”). A few days later, I enlisted my lovely doubles partner to knock up with me and the following week the rest of the stalwarts of the ladies doubles team I used to play for also obliged. (Thanks, Mary M, Mary P, Monica and Julie, and thanks to coach Steve who suggested the soft balls! Hopefully it won’t be too long before I’m whacking those hard yellow balls again and back playing in the team.)

There’s more. Five months on from finishing chemo, I need a haircut. That’s happening later today. And this last one is really huge… I start back at work tomorrow. It’s time.

That’s about it on the physical front. What about emotionally? Well, thoughts of recurrence are no longer always the first thing that pop into my head when I wake up in the morning. When they do, I tell them to sod off. Sometimes it works. That’s a big improvement.

Footnote April 11, 2019. I’m not convinced I ever had lymphoedema. Post-op odoema, certainly, but the swelling eventually went. So lymphoedema? I don’t think so.

 

It went downhill from there

Not long after the excitement of getting back on the bike last Tuesday (In the end, the wig ditched me), things started to go downhill.

I’d been feeling really tired since starting radiotherapy towards the end of the previous week, on 4th February, but I started to feel physically unwell as well as tired last Thursday. Also, the reconstruction was looking red and more swollen than usual. Skin reactions to radiotherapy are common, but not that early in the programme; I was only five sessions in at that point. Things got progressively worse and they culminated in me being admitted to hospital this Monday evening – exactly half-way through my 16-session course of radiotherapy – for a short course of iv antibiotics to treat a rather nasty bacterial infection that I’ve developed of the skin and underlying tissue in and around the operated area.

I had a dose of antibiotics via iv injection every eight hours between arriving at the hospital late on Monday and leaving earlier today after I’d had the last of six doses (my doses were given at 10pm, 6am and 2pm). The good news is that the infection is responding to the antibiotics. It hadn’t responded to a different antibiotic I’d been started on on Friday. I’m now back home, with a supply of oral antibiotics to take over the coming week.

I’m still tired – guess I’m stuck with that for a while – but otherwise I’m feeling almost fine. The extremely swollen, extremely red and extremely warm right boob is less swollen, less red and less warm than it was on Monday and the rash that covered nearly a quarter of my midriff looks much less angry and is receding. It really was quite impressive on Monday, but there are no photos, as there are things even I won’t photograph! Some areas feel a little sore and tender but it would hurt a whole lot more if I weren’t numb in most of that area following the operation back in December. Every cloud, eh?

For those who like details, I have breast cellulitis, a known but not common complication in women who’ve had certain types of breast cancer surgery. The consultant breast surgeon, who decided I should be admitted to hospital, said the infection needed to be cleared up “pdq”. (The consultant keeps trying to get rid of me but I keep coming back. I’ve now gone to him with one complication or another three times since he supposedly signed me off on 8th January, saying he’d see me in April for a three-month check-up.)

I’m aware this all sounds terribly dramatic. However, for most of the time I was in hospital – apart from the night I was admitted – I actually felt more or less ok, although you’d have found that hard to believe if you’d seen the infection.

This has been an interesting diversion in my breast cancer “journey” (I’m so sick of that term now). It has included:

• two nights in hospital;
• the best part of two days spent at home in bed with a fever and the shivers, either sleeping or just feeling really lousy;
• another ultrasound scan, to see whether any fluid needed draining off – it didn’t;
• a two-day break in radiotherapy while we got on top of the infection;
• seeing two consultants who thought they’d seen the back of me for a while; and
• more people than I care to remember examining my inflamed and burning hot boob.

I have had some lovely visits over the past couple of days… and the friend who came with me to hospital on Monday has finally accepted that I do have something serious wrong with me and that I haven’t just been slacking all these months!

I’ll start back at radiotherapy tomorrow. Coincidentally, it turns out that the machine was down both today and yesterday, which means I wouldn’t have had the sessions anyway. Maybe there was so much heat coming off me during my session on Monday that I caused the machine to shortcircuit! To make up the two missing sessions, I’ll have one this Saturday (they’re running Saturday sessions to work through the backlog) and they’ll add one on at the end. Assuming all goes to plan from now on, my final radiotherapy session will be on Friday 26th February.

Onwards and upwards.

 

In the end, the wig ditched me

I was feeling really exhausted and fed up on Monday evening. When I woke up feeling much the same on Tuesday morning, I decided radical action was needed. The bike, I thought, could be the answer. I would cycle to my fourth radiotherapy session. It would be the first time in around three months that I’d done any cycling.

Just making the decision made me start to feel better. I got the bike out and pumped up the tyres. I stuffed the pump and everything else I needed into a little backpack and, with my cycling headband* and winter cycling gloves on, I set off.

The bike, as always, is part of the solution (Love that bike! & A lesson on living in the now). I loved every second of the 5.7 mile ride to the clinic, even the hill, and I felt great when I arrived. I locked the bike up, looked in the backpack for my wig to throw it on before making my way inside and realised to my horror that it wasn’t there.

I swear my heart skipped a beat. It was the same feeling of utter horror that I’d had when I was out having a meal with some friends to celebrate finishing chemo last November and realised that I’d forgotten to give myself my critical post-chemo injection (Emergency delivery of post-chemo injection – to the pub!). That time, my older son brought the needed item to the pub. That wasn’t an option this time.

I lost my hair to chemo last September. I hadn’t gone out in public without some sort of head covering since. I finished chemo at the end of November and so my hair is growing back, but I hadn’t yet taken the plunge. Now I had no choice. I simply (?) had to take a few deep breaths and go for it.

I remember thinking this must be what a panic attack feels like.

I phoned my husband Andy for some moral support. While frantically pacing the clinic car park, I treated him to a monologue that consisted mainly of me repeating down the phone the same four-letter word over and over and over (think the opening scenes of the film Four Weddings and a Funeral). I then phoned a friend who’s a couple of weeks ahead of me in terms of treatment (although it has to be said she didn’t lose her hair). This is the friend who said she wouldn’t have worried about not having had the injection and would just have waited until she’d got back home. The two of them found my discomfort all highly amusing, which I have to say did calm me down somewhat. As they pointed out, I couldn’t have picked a more receptive audience for my wigless public debut.

Deep breaths taken, I walked in. It wasn’t easy. Of course everyone I met said how good I looked, how well my hair was growing back, etc, etc, etc. I could literally feel the tension fading away. And when I explained it had been an accident and how it had come about, it felt even better.

It turns out I’d put the wig in one backpack and the rest of the stuff in another. If you must know, I swapped because the first one clashed with the cycling jacket I was wearing! (Bet that surprised you, my fashionista nieces Louise and Shereen.)

I haven’t worn the wig since. And it’s such a relief. Perhaps something was going on subconsciously that morning, because just a few days earlier I’d written about how and why I couldn’t wait to ditch it (One’s changing relationship with one’s wig). In the end, the wig ditched me.

Whether the wig stays unworn depends, I guess, on how my hair grows out. But so far, so good, and I’ve got a story I’ll be able to dine out on for a long time!

*No helmet, I’m afraid. In the three months of having been bike-inactive for want of a better term, my helmet appears to have “got lost”. No-one in the house is taking responsibility for said loss, but I didn’t lose it and I’d bet my life Andy didn’t either. That leaves just two possible culprits. They know who they are. 

One’s changing relationship with one’s wig

Now that my hair has started to grow back post chemo, I can’t wait to ditch my wig.

Since my operation in December I’ve been wearing the wig less and less and now I’m looking forward to the day when, instead of transferring it from my head on to the mannequin’s head where it rests when I’m not wearing it, I assign it to the back of a drawer. It’ll likely be another couple of months, though, before that actually happens.

The wig took some getting used to when I first started wearing it (Learning to live with a wig), but I soon grew to love it. It was liberating. I could throw it on, give it a quick brush and I’d be ready to leave the house. Nobody – other than those I’d told – would know I had cancer. With a wig, I could pretend things were normal. I felt I was in control.

Now, nearly eight months after my diagnosis, seven months after my first chemo session and more than two months after my last, I’m getting a little tired of pretending. More than that, I no longer feel I need to pretend. I’ve long since come to terms with the fact that things are not normal. My breast cancer is now part of who I am and, rather than embrace the wig, I’m starting actively to dislike it. If I’ve been wearing it out – and I do that less and less – I whip it off as soon as I get back home.

My operation on 19 December was the turning point. I could hardly move for three days after the op and disguising my bald head was the last thing on my mind. I didn’t care who saw me bald – I had more important things to think about (Feeling a million times better than this morning, but what a struggle) – and I didn’t wear the wig for the five days I was in the hospital. I never wore the wig at home anyway, except when people visited, so when I came back from hospital and was essentially housebound for a couple of weeks, before I knew it three weeks had gone by with me having worn it only a couple of times. After that it seemed strange putting it on at all.

Since the death of my dad* almost four weeks ago (In Glasgow again, but for the saddest of reasons), I’ve spent a lot of time indoors in Glasgow in the company of close relatives. I didn’t really wear the wig much there either. And those times I did wear it, it inevitably ended up being passed around for all and sundry to try on!

Back home in south London, it used to be that if someone came to visit or knocked at the door, I’d rush to put the wig on. Now I just throw on a beanie hat… or if one isn’t handy, I don’t bother. The window cleaner, delivery men, the electricity meter reader… they’ve all seen me bald, and of course haven’t batted an eyelid. And if I go out for short periods locally – driving the boys to school, popping to the shops, going for a walk on the common or going round to a friend’s house – I just pop on a hat and go. It’s only when I go out for more prolonged periods that I wear the wig.

At this stage, I have a layer of hair on my head that’s around a quarter of an inch long. It looks ok, if you like the Sinead O’Connor look. It’s very, very soft, like a baby’s hair. I’ve been told it’ll soon go fuzzy or wiry and at that point you get it cut and it then grows in thicker. It’s VERY grey, although there’s also some near black in there as well. I don’t remember my hair being that dark. That said, I’d been colouring and/or highlighting it for so long that I’ve forgotten what colour it was originally. My eyelashes and eyebrows have also grown back, the latter really thickly.

When I’ve seen women in the past with hair like mine, I’ve always thought “Oh, there’s someone with cancer”. I now realise it’s more accurate to think that it’s someone who’s had, rather than got, cancer. By the time your hair’s that length, you’re through the chemo and probably also most of the rest of your treatment.

I’ll spend the next few weeks – or perhaps months depending on how it goes – deciding on such things as how to have my new hair styled and whether to have it coloured or leave it grey.

There are other questions to consider, too. What do you do when you go back to work? It could be a bit embarrassing to go from wearing a wig one day to sporting your original hair the next. And what if the wig really is nicer than your own hair?!

I still have plenty of time to think about it all. In the meantime, my niece Shereen has come up with a novel, ultra-Glaswegian alternative to the wig. Very becoming, don’t you think?

*I have a story about my dad and the wig, from my visit to Glasgow last November (I love Glasgow, but it’s not Geneva). I’d got up one morning and it simply did not occur to me to put on the wig or any other head covering. I was happily having breakfast with my mum and dad in the flat they’d been living in for less than a year when I realised this was the first time they’d seen me bald. Bless them, they hadn’t said a word. I apologised for not warning them in advance and explained that I was used to going bareheaded at home, to which my dad replied: “That’s nice, because it means you must feel at home here too.” He was right, of course.