I never really liked running anyway

I’d always joked that I didn’t really like running. There was some truth in it. I loved how fit it made you, I loved how you felt after you’d been on a run and most of all I loved Parkrun – those free, weekly, timed 5k runs that take place in hundred of locations across the UK every Saturday morning. Since finishing treatment for primary breast cancer in February 2016, I’d also run a half marathon, a 10-mile run and a 10k and for a while I even trained with a running club. You don’t do all that if you genuinely don’t like running – but I always found it hard and I wasn’t a natural.

Then in March I got a pain in my spine and my right hip. I followed it up and it turned out I have secondary or metastatic breast cancer.

As well as there being cancer in my bone marrow and in three vertebrae, there is a lesion in my left-side rib area and there are “areas of less significant scattered bone disease”. As for my right hip, while there are no obvious signs of cancer in the hip itself, the pain I get there may or may not be related in some way to the diagnosis. Either way, that’s where there is most pain.

I suspected my running days were over but I hadn’t put it to the test. I needed to find out one way or the other.

Last Sunday morning, I plucked up the courage to give it a go. I put on my running kit, including for inspiration the Parkrun t-shirt I got for having chalked up 50 runs, and set off for Tooting Common at the end of our road. I went as slowly as I possibly could without it being considered fast walking. It didn’t help. It took just a few steps for me to know it wasn’t going to work. I’m not going to exaggerate; the pain was nowhere near excruciating but I just knew my hip couldn’t take it. My back, I could feel, would also start hurting soon.

I waited a few minutes then tried again. It still hurt. I tried once more, and that was it. I limped to a secluded spot on the common, sat down in the shade of a tree and proceeded to shed a bucketload of tears – of anger, frustration, sadness and self-pity.

So now I know for sure. Barring some weird reversal of the crap that’s going on inside my body, my running days are in the past. I guess I knew they were but I think I had to go through the motions. Maybe on some subconscious level I knew I needed a good, cathartic cry.

So much for getting a century of Parkruns. I made it to 86, which is pretty damn good. For those of you who may be thinking of suggesting I limp or walk the course 14 times just to get to 100… the answer is a big no.

It’s strange. On one level, I’m really disappointed but on another I’m already over it. Maybe I really didn’t like running that much anyway! More likely it’s because I know I have no choice. Or perhaps sometimes a good cry is just what’s needed to help you move forward. I’ll continue volunteering for Parkrun every now and then as I’m so grateful for what it has given me over the past three years. It was a key part of my recovery from my treatment for primary breast cancer and I’ve made new friends through it and had such fun. I ran all but one of my 86 Parkruns in the past three years, most of these on my home course on Tooting Common. I started it in earnest in April 2016 – six weeks after I finished radiotherapy – and never looked back.

On the positive side, I’ve restarted treatment. I had to have a short break as the drugs made my neutrophil count drop during the first cycle to below the level that was judged safe to continue with treatment. Neutrophils are the white blood cells that fight infection. Pharmaceutical intervention was needed to get them back up to the required level but we got there and here I am, back on track with Cycle 2. I have blood tests next week to check to see how things are going.

There’s clearly lots going on inside that I’m not physically aware of. But what about the things I am aware of?

Well, it sometimes takes some careful manoeuvring to get out of bed in the morning without too much pain. This is mainly due to the pain in my ribs – where there may also be cancer – that sometimes develops overnight and to the discomfort in my hip, which gets worse overnight, regardless of what’s causing it. My back is not generally painful but can start aching if I walk a good distance.

My hip hurts every time I get up from a seated position and take my first few steps. The pain generally wears off as I start moving about but a few people have commented that I sometimes walk with a slight limp.

The level of pain I have in the morning gives me a sense of how things will go over the course of the day. Overall I’m glad to say the pain seems to be diminishing.  I either take no painkillers (that’s the most common outcome at the moment), over-the-counter strength painkillers or prescription painkillers. The problem with the strongest ones is that you’re not meant to drink alcohol; the pain has to pretty bad before I take those!

The pain is at its worst by far in the days following the monthly Faslodex/fulvestrant injections and the Zometa/zoledronic acid infusion. Getting the injection in your buttocks verges on the painful side of uncomfortable and your glutes hurt like hell for a couple of days afterwards. The Zometa and the fulvestrant can – and do – cause bone pain for a couple of days afterwards too. Painkillers are most definitely needed then.

Also, I swear my hair is getting thinner by the day. Thankfully diarrhoea – a serious concern with the Verzenios/abemaciclib tablets I’m taking – has not been a problem. I’m not saying it’s been non-existent but it’s not been a problem.

I already knew tennis was out. Now it seems running is too. There’s still the cycling; I rode 62k yesterday, in glorious sunshine, the furthest I’d ridden since starting treatment in late May. I’m paying for it now as I’m absolutely whacked. Thankfully I’m not working today and, as Wimbledon is on, I have an excuse just to sit on the sofa and do very little other than watch amazing tennis on TV and finish writing this!

The question now is whether cycling is enough or do I need to seek out something to replace the tennis and running? Swimming anyone?

Treatment – a reluctant trailblazer

“A trailblazer on a path you don’t want to be on.”

I paraphrase slightly, but that’s what the specialist breast cancer nurse at the hospital where I’m being treated said I was.

I have to say I was touched by the huge degree of empathy with which the nurse said it. This was just after the consultant told me that the treatment she was proposing for my secondary breast cancer was a combination of drugs that has just been made available under the NHS in England for women in my specific situation.

Given together, the drugs have been shown to improve what’s called “progression free survival”, ie the length of time patients live without their disease getting worse, and so delay the need for chemotherapy.

This latest development has been described as “fantastic news” for women such as me. The nurse was spot on with her description. I’m the first person at my stage of the disease and at my stage of treatment to have this therapy at the hospital trust where I’m being treated. I’m definitely grateful, but it’s a funny kind of gratefulness.

I started treatment on 22 May and I’m trying to focus more on the fact that the consultant is hoping for a “durable clinical response” than on the “significant, unavoidable or frequently occurring” risks of the treatment that are ticked on the consent form (see image).

The drugs are abemaciclib and fulvestrant – the brand names are Verzenios and Faslodex respectively for anyone who’s interested.

Abemaciclib is taken continuously in 28-day cycles as tablets – one tablet, twice a day, 12 hours apart. Fulvestrant is given as two injections – one in each buttock, not pleasant – each of which takes a couple of minutes to administer. You’re given it on Day 1 and Day 15 of Cycle 1, then on Day 1 of Cycle 2 and all future cycles – so that’s every two weeks for the first three doses, then once every four weeks.

You stay on these drugs for as long as they’re keeping the cancer in check and you can manage the side effects. Or, officially, for “as long as the patient is deriving clinical benefit from therapy or until unacceptable toxicity occurs”.

It could be a few months before we find out whether the drugs are working or not. If they’re not, you move straight away on to the next line of treatment. As for toxicity, the big worry with abemaciclib is diarrhoea. It’s a very common side effect and it can be so severe that the dose has to be reduced or a break in treatment is required. Three weeks in and I’m extremely relieved to report that I have got off very lightly indeed on this front. That may be partly explained by the fact that one of the side effects of the painkiller I’m on for the pain from the “bone mets” I have is constipation. I like to imagine the two drugs battling it out together inside me for supremacy.

You’re under close medical supervision, especially in the initial phase of treatment. You have blood tests every two weeks for the first two months, monthly for the following two months, and then as needed. You have scans every few months to check whether the drugs are working.

The cancer is in my bone marrow and bones, most significantly in my spine. Bone mets weakens your bones and puts you at risk of what are called “skeletal related events”. These include fracture, radiotherapy or surgery to the bone, and spinal cord compression or surgery to bone. To reduce the risk of these SREs happening, I’m back on the bone-strengthening drug, zoledronic acid or Zometa. I had that for a while after my active treatment for primary breast cancer ended; it was supposed to reduce the risk of it coming back. I have Zometa monthly too – via infusion, like chemo, on the same day I have the fulvestrant injections. The infusion itself takes 15 – 20 minutes. Zometa can also ease the pain that comes with bone mets. On the downside, as I mentioned when I started taking it before, it can also occasionally cause a very nasty condition called osteonecrosis of the jaw.

Fulvestrant is a hormonal therapy that aims to help shrink or slow the growth of metastatic breast cancer such as mine that feeds on oestrogen. Abemaciclib is what’s called “targeted therapy”, ie it’s a type of drug that targets specific characteristics of cancer cells, such as a protein that allows the cancer cells to grow in a rapid or abnormal way. Abemaciclib is one of a class of drugs called CDK4/6 inhibitors, which work by targeting two crucial cell division proteins, CDK4 and CDK6.

There’s a bit of a debate over whether CDK4/6 inhibitors are chemo or not. In the end, it seems it comes down to definitions.

This new combination treatment that I’m on hasn’t been in use long enough for it to be clear whether it also improves long-term survival, ie whether you live longer overall. In terms of quality of life, though, improvement in progression free survival is hugely important. The treatments don’t get any easier as your cancer gets worse. Not do the effects of the cancer itself, of course, so the longer it can be held in check, the better.

It’s very early days. Let’s hope I fare well on that trail I’m reluctantly blazing.

Post-op progress report No 6: If this is as good as it gets, I’ll take it

I was at the cinema one evening in late October and towards the end of the film I became aware of something really weird. A couple of hours had gone by and I hadn’t felt the need to make any of the stretches or movements I’d been used to making regularly throughout the day to ease the feelings of discomfort in and around the area where I’d had breast cancer surgery more than ten months earlier.

Basically, nothing had felt wrong for at least two hours. I hadn’t felt the need to lift my right shoulder up and back to stretch out the tightening around the scarring in the area where my reconstructed right breast – which they made out of my tummy fat immediately after my mastectomy – meets my chest. I hadn’t felt the need to lift my right arm back behind my head and straighten it out to ease out the tightening or cording that’s still there in the armpit area where I had lymph nodes removed. I hadn’t felt the need to rub the inner part of my upper right arm to lessen the feeling of numbness and tingling I still have there, also a consequence of the lymph node removal surgery. Finally, I hadn’t felt the need to stretch out the tightness I still feel from time to time around the horizontal hip-to-hip scar where they took skin, fat and blood vessels for the breast reconstruction.

Ever since that evening at the cinema (My Scientology Movie, if you’re wondering), I’ve been noticing ever-longer periods throughout the day when all I can say is that nothing feels wrong and I’m not aware of any discomfort anywhere on my whole body. I’m still not used to it but, almost a year on from surgery (The basics), that’s what I call a result.

I wrote a blog for the Macmillan cancer support charity in mid-September on the importance of exercise during my treatment and ongoing recovery. I read back through it recently (What do you mean I look like a wreck?) and was amazed at how much things have improved physically even in the past two months or so.

So where are we now? Well I do still stretch out my shoulder and arm every so often during the day, though nowhere near as regularly as before. It’s far less uncomfortable than it was. I’m still having monthly physio sessions and those really help; I also still do stretching and strengthening exercises. The feeling is gradually coming back in that upper arm area; I still give it a good pummelling every now and then. The uncomfortable swelling in and around the operated area that was diagnosed as lymphoedema has all but gone; I still do a special massage in the affected area to help prevent the build-up of lymph fluid. Sometimes I’m aware of a general feeling of mild discomfort in the whole area but, more often than not, I’m not aware of anything.

What else? Well it’s only in the past couple of months that I’ve been able to sleep on either side or indeed on my front. Being able to sleep in whatever position I want after so many months of having to sleep on my back with my right arm stretched out behind my head is a really big deal. Having to stretch out the area around my abdominal scar is not a big deal; what 53-year-old woman is going to complain about having a tight tummy?!

There’s more. It’s been a good while since I’ve experienced anything like that fatigue I would feel from time to time that would make it hard to move very far from the sofa. It didn’t happen often, but when it did it wasn’t nice. Finally, I caught myself the other day running down the stairs on the London underground and diving onto a train. I’d stopped doing that as I was scared of falling or bumping into someone (Sod the compression bra, it’s summer!). Clearly not any more!

All in all, then, there’s been quite some improvement in recent months.

There’s stuff going on that’s related to treatment rather than to the surgery I had last December, but none of it’s too bad. The chemotherapy-induced peripheral neuropathy I had in my feet really is all but gone, although I still get some low-level tingling and numbness when I run or play tennis. It’s either that or my trainers are too tight! I’m tolerating letrozole, the daily anti-hormone therapy that I’m on, well. Letrozole can bring on hot flushes; for a couple of months these would appear out of nowhere but they’ve now subsided.

The “trigger thumb” that I’ve developed in my right hand is persisting. This is a known but rare side effect of letrozole, and it’s a bit of a drag. I can’t bend my right thumb and I’ve had to change the grip I use to serve at tennis and the way I hold a pen. My serve is neither better nor worse but my handwriting has gone from bad to appalling. It’s hard to do things where you need to apply pressure with your thumb – such as opening bottles and jars, tying shoe laces or using a grater – but it’s not the end of the world. I guess I could/should get treatment for it; instead I’ve just got used to it.

Finally, I sometimes wake up with stiff fingers on my right hand and my knuckles on that hand are a bit swollen – letrozole again. My rings don’t fit any more, which is a shame as I used to wear my late grandmother’s wedding ring and a signet ring I got for my 16th birthday on that hand. There’s no other joint-stiffening to complain of at the moment (I do have a painful left hip, but I’m hoping it’s nothing more sinister than a sports injury; I’ll get it checked out if it doesn’t go away).

This is my sixth post-op progress report and I reckon it could well be my last. The consultant breast surgeon told me that on the physical front we’d be doing well if I got back to 95% of what I was before. I don’t know quite how you measure that but if the way I am now is as good as it gets, I’ll settle for that and be quite happy. Now if someone could just give me a guarantee the cancer won’t come back, things would be just fine. But they can’t, of course. I don’t believe my “recurrence anxiety” will ever go away but in the meantime there’s no doubting these physical improvements are reasons to be cheerful.

 

Just putting this out there

I recently came across the results of a survey about how women feel in the aftermath of their breast cancer treatment. Of those that responded:

• 48% reported feeling low or depressed
• 60% said they needed support to manage worries about recurrence
• 39% felt isolated by the ongoing side effects of treatment
• 61% felt those around them expect them to move on before they were ready.

I don’t know how scientific the survey was but, based on my own experience and the experiences of many of the women I’ve spoken to or come across, I’m surprised some of the figures aren’t higher.

Just putting this out there on this lovely sunny Spring morning.

Side effects you really don’t want to think about (Radiotherapy Part 3)

I know it’s seven weeks since I finished my course of radiotherapy but I really feel I need to get this off my chest. The potential long-term side effects of breast cancer radiotherapy are something else. There, I’ve said it.

At my first appointment with her, the consultant oncologist in charge of my radiotherapy explained why this treatment was being recommended for me. She talked me through the proposed treatment plan, the practicalities involved in planning treatment and the treatment itself, and, of course, the potential short- and long-term side effects. She then offered me a consent form for signing… or not. I did ask if people refused treatment. Yes, the consultant replied, but not in cases such as yours where radiotherapy has such a clear benefit in terms of reducing the risk of recurrence and improving overall prognosis. There was never any doubt that I would sign.

As with other breast cancer treatments I’ve had – chemo, surgery – or am continuing to have – hormone therapy – radiotherapy has lots of potential nasty side effects. Some are immediate, and some are more long-term and can occur months or years after treatment. If you’re familiar with this blog, you’ll be aware of some of the short-term ones: skin redness, tiredness, swelling and tenderness of the reconstructed breast, swelling from fluid build-up in the treated area, etc. The potential longer-term side effects are much scarier. That said, they’re less likely – in some cases much less likely – to occur than the short-term ones. They include shrinkage and firmness of the reconstructed breast, increased risk of second malignancy, rib fracture, lung scarring and a 10-15% risk of lymphoedema. And, of course, damage to the heart, especially if you’re having radiotherapy on your left side.

Let’s go through them. Around one in ten women who have radiotherapy following reconstruction experience shrinkage and hardening months or years after treatment. What a nightmare that must be. I agonised over whether to have a reconstruction or not and in the end decided to go ahead with one that involved transplanting abdominal fat and required major surgery. It was a massive deal. Nearly four months on, there are some “issues”, but it looks like the result will be good in the end. You really don’t want to wake up one day in five years’ time to find it’s shrunk and feels like concrete. The plastic surgeons, too, must hate seeing what radiotherapy does to their lovely artwork. It’s no wonder then that “with a view to improving cosmetic outcomes“, clinical trials are under way to determine whether it’s safe to do things the other way round, ie to give radiotherapy before surgery.

As for the other potential long-term side effects, well everyone knows radiation can cause cancer as well as treat it, so the warning about a “minimal risk of second malignancy” was no surprise. But rib fracture? And lung scarring? Well it seems a rare potential late side effect of radiotherapy to the breast is “weakening of the underlying ribs on the treated side“, which may “increase the risk of a fracture in later years”. I’d better be extra careful when I go skiing.

An equally rare or even rarer side effect than rib fracture is lung scarring, aka pulmonary fibrosis, which can result in serious breathing problems (guess there wouldn’t be much skiing at all then). If you’re having radiotherapy to the breast and chest wall, it’s impossible to avoid the lung. The reason I had to hold my breath during treatment was to lift the treatment area away from the lung and so minimise exposure.

Finally, with regard to lymphoedema, well I was already at risk of that anyway as a result of having had the axillary lymph nodes removed during surgery. And yes, I have developed it, in and around the breast area, but I’m hoping it can be resolved, to some extent at least.

So what else do I need to look out for now that I’ve had radiotherapy? Well, swelling caused by treatment can persist for months or even years. Also, irradiated skin may burn more easily from sun exposure and be prone to infection and breakdown, so you need to be extra careful in the sun. And here’s a nice one to finish. Breasts that have been irradiated may not grow or shrink in size as much as untreated breasts, or indeed at all. Radiotherapy seemingly freezes own-tissue reconstructions at the size they were before radiation treatment. Again, this is pretty annoying as one of the benefits of this type of reconstruction over an implant is that the new boob changes with you as you gain or lose weight. One of the main causes of asymmetry between the “treated” and “untreated” breast is, apparently, weight gain. While that’s a clear incentive to keep to a steady weight, it’s not much consolation to those women who put on weight as a result of the hormone treatment they may end up taking for as long as ten years after they’ve had chemo, surgery and radiation (or combination thereof) in an effort to guard against the cancer coming back.

I’m aware I’m not doing a very good job here of “selling” radiotherapy. Radiation treatment reduces the risk of recurrence and that is, of course, the main concern. But it doesn’t half add to the baggage that comes with having or having had breast cancer.

 

Breast cancer “reminders”

Quite apart from coping with the emotional side of having had breast cancer, there are plenty of physical reminders to make sure I don’t forget what I’ve been through any time soon.

I was thinking I would list the various side effects I’m experiencing in order of annoyance but that’s hard to do. I have different types and levels of pain or discomfort in different areas and each side effect is annoying in a different way. Here goes.

Peripheral neuropathy. I’m still experiencing pain – numbness, tingling and throbbing – in the balls of my feet and toes as a result of the nerve ending damage caused by the chemotherapy drug paclitaxel. This comes and goes, ie it’s not constant, and while it is improving, on some days – if I’ve done a lot of walking, say, or have worn heels – it can get pretty bad. I can’t remember when it last woke me up at night but it’s usually the first thing I’m aware of physically when I wake up in the morning. This can take up to a year to get better, although in some cases it’s permanent. So I’m guess I’m playing a waiting game.

Post-surgical pain. I still have pain – numbness, tingling (but different from the feelings in my feet) and a burning sensation – in the upper inner part of my right arm and what feels like muscle pain where the reconstructed breast meets my chest and below and behind my armpit. This is much less painful than the peripheral neuropathy but it is annoying, as this pain is more or less constant so I’m aware of it most of the time. I’m pretty sure the muscle pain – or what feels like muscle pain – has got worse in the past few days. It’s at its worst when I wake up, especially if I’ve rolled on to my right side while I’ve been sleeping.

The numbness and tingling is caused by nerve damage that happens during surgery to remove lymph nodes from the armpit area. The effects subside as you heal – within about three months for most people – although they can last or become worse months after the surgery. The numbness and tingling is definitely not as bad as it was but it’s still annoying. Another waiting game.

Breast lymphoedema. I saw the radiation oncologist on Monday and, while the cellulitis (It went downhill from there) has evidently cleared up nicely, she mentioned the dreaded L word – yes, lymphoedema – with regard to the persistent swelling in the breast area. Early treatment is recommended to help prevent hardening of the tissues and reduce the risk of you getting cellulitis (please, not again!). So I’m to have a course of manual lymphatic drainage (up to fifteen sessions over up to six weeks), a very gentle form of massage that allows the lymphatic fluid that’s collecting and causing the swelling to be redirected to – untouched and undamaged  – lymph vessels in the vicinity where the fluid can drain away more easily. Also, later today, I’m to be fitted for a lovely compression bra. I’m assuming this will be an even sturdier version of the post-surgery bras that I’ve really never stopped wearing since my op on 19th December – other than for a few days during radiotherapy when I had cellulitis and a bad skin reaction to the radiotherapy – because there’s always been some sort of swelling or another. Compression treatment for lymphoedema puts pressure on the area where you have swelling, and the pressure helps the lymph to flow through the lymph vessels. It also acts as an extra force for the muscles to work against, which helps the fluid to drain out of the area.

The swelling is not painful in itself, I suspect mainly because I have no feeling in most of the area in question. At rest, however, my inner upper arm rests against part of the swollen area and this aggravates the already tender upper arm.

By the way, breast lymphoedema I can cope with (Fear of lymphoedema); please let it not spread to my arm.

Cording. Now that the cellulitis has cleared up, I can start having physiotherapy again on the cording, this hardening of the lymph vessels to form tight bands under the skin from the chest or under arm down to the elbow and beyond that can happen after breast cancer surgery involving the axillary lymph nodes. The cording is not painful as such but, again, that’s because I have limited sensation in the affected area. I also know to limit my movements so that it doesn’t hurt where I do have feeling. It’s only painful in those areas when I forget and try to stretch further than I am able to. With physio and the arm and shoulder mobility exercises I’m continuing to do every day, the cording should go over the next few months.

Hip-to-hip scar. I was really nervous about the potential consequences of the surgery to get the fat and blood vessels from my abdomen for my reconstruction. While the immediate aftermath was tough, it’s the part that’s giving me the least trouble now in terms of ongoing post-surgical pain and/or discomfort. The scar that runs from one hipbone to the other has healed well really well (there’s just one small area of less than an inch long where it’s a bit messy) and while the surrounding skin can still feel very tight and hard in some places, there’s no pain. Discomfort, yes, but not pain. I’ve been shown how to massage the area above the scar to loosen the skin up and I do abdominal stretching and strengthening excercises at least twice daily. Things should continue to improve.

Lost toenails. Chemo played havoc with my nails, especially my toenails (Note to self – keep your toes covered when trying on shoes). The nails on my two big toes are in the process of growing out and the nails I lost on four other toes are growing back in*.

I think that’s it on the physical side effects front.

And then there are the drugs:

Hormone tablets. I take one tablet of letrozole every day and will do so for the next five years, when I’ll move on to a different hormone therapy, for another five years. I count myself lucky in that I seem to be tolerating letrozole very well; I have no side effects to speak of.

Calcium and Vitamin D supplements. Letrozole can cause osteoporosis; the calcium and Vitamin D supplements I take daily are to counteract the effects of the letrozole in this regard.

Iron tablets. I’m still taking these three times a day for post-operative anaemia. I stop taking them in a few days, three months after my op.

Zoledronic acid. I’m to have my next cycle of the bone hardening drug, zoledronic acid, this coming Monday. Thereafter I’m to have it every six months for as long as I’m on letrozole. This drug – and other drugs of its kind (bisphosphonates) – is used in the treatment of post-menopausal women with early-stage breast cancer as it’s been shown to lower the risk of them developing osteoporosis and of breast cancer spreading to the bones. This treatment is given via an iv drip in the chemo unit at the clinic.

Now none of the lingering side effects I’ve described above is so painful that I have to take painkillers. And I’m otherwise quite well, if still pretty whacked. And it’s still early days and hopefully everything will get better over time. But for the moment these things are annoying and they do cause pain and/or discomfort. They – and the drugs and exercises that I still need to take or do – are obvious reminders of what my body’s been through over the past seven months. I used to think I’d been quite lucky in terms of physical side effects. Reading back through this latest post, now I’m not so sure. I guess it’s all relative and no-one said it would be easy. One thing is certain, though. Regardless of how I deal with the emotional side of things, physically I’m really not going to forget any time soon that I had breast cancer, am I?

*My fingernails are looking great, I’m relieved to report.

A very strange position to be in (Radiotherapy Part 1)

It’s the strangest feeling, lying stock still for the best part of half an hour, on your back, naked from the waist up on a treatment bench in a cold room, with your arms up behind your head on arm rests, a weird snorkel-like breathing control device in your mouth and a nose clip on, holding your breath for periods of up to 20 seconds at a time while a huge machine called a linear accelerator or linac moves around beeping and whirring and zaps you with high doses of radiation (high-energy x-rays) in and around the area where your breast cancer was.

That’s precisely the position I’ve been in 14 times now since starting the radiotherapy part of my breast cancer treatment on 4th February. I just have two more sessions to go. After my final session, on Friday, the hospital-based phase of my treatment – chemotherapy that started back in August last year followed by surgery just before Christmas and now radiotherapy – will be over. That’s a huge milestone in anyone’s book.

The radiotherapy sessions felt very strange to start with but, as with many things over these past six months, I soon got used to them. The team in the radiotherapy department really couldn’t do more to make you feel at ease and you soon started to look forward to the daily chats with whoever was there on the desk when you arrived and the pair of radiographers dealing with you that day. And the breath-holding you have to perform during treatment is actually quite relaxing in a weird kind of way. That said, and despite the knowledge that radiotherapy is an important part of my treatment, I can still easily think of a lot of places I’d rather be than lying on that table in that position being zapped by high-dose radiation.

The aim of radiotherapy in the treatment of breast cancer is to reduce the risk of your cancer recurring by destroying any microscopic cancer cells in or near your breast that may be left in the areas being treated. Where you have it depends on things such as the location, size and grade of your original cancer. I’m having treatment to the right chest wall, the reconstructed breast and, since my cancer had spread to the right axillary lymph nodes, I’m also having it to the right internal mammary chain of lymph nodes and to the lymph nodes above the right collarbone, above where I had lymph nodes removed during surgery.

You may be wondering about the relevance of the breath-hold device. Radiation affects healthy tissue in the area being treated and radiation for breast cancer can cause heart and lung damage. In my case, I hold my breath during treatment to lift the treatment area away from my right lung and to a lesser degree from my heart to minimise the potential damage to those two organs. Even with the breath hold, though, the radiation beam passes through the top of my right lung. You might only find out in later years whether there’s been any damage, so fingers crossed on that front. In terms of the heart, the breath hold is particularly important if you’ve had a left-side mastectomy (Andy, that’s because your heart is on the left). My mastectomy was on the right, so in my case the breath hold is to reduce the amount of “scatter dose” reaching my heart from the radiation beams to the areas being treated.

The longest I have to hold my breath for at a time is 20 seconds, the shortest is about five. I’m zapped seven times in exactly the same places each session, which means I have to hold my breath seven times. I have to inflate my lungs by the same amount each time. The amount was worked out in a lengthy planning session that was carried out a week or so before the sessions themselves started and that involved among other things, a CT scan.

Each radiotherapy session lasts about half an hour. More time is spent making sure you’re in the right position for the delivery of the radiotherapy than is spent actually delivering the treatment. The precise position you need to be in is worked out during the planning session and the radiographers position you using alignment lasers and stickers or tattoos that were placed or marked on you, again during the planning session. The tattoos are indeed permanent marks, usually small dots; I requested no tattoos and got stickers instead.

You’re naked from the waist up while the radiographers (there are always two, one on each side) line you up. This involves them using a little metal ruler to check measurements in the area being treated, drawing lines on me with a felt-tip pen in a couple of places, positioning the treatment bench and moving me into place. Once the radiographers are confident everything matches up, they put a large piece of tissue paper over your upper body and then leave the room. An alarm sounds, a thick steel door closes behind the radiographers, and you’re on your own. The radiographers then talk to you through an intercom and tell you when to hold your breath so they can deliver the treatment. Sometimes before they start treatment they get the machine to take one or two x-ray images so they can check yet again that you’re set up correctly. The treatment itself only lasts a few minutes. The radiographers then come back in, extract you from the breath hold device, help you fasten up the hospital gown you’ve got on and help you off the bench. After a few reassuring words from them, the session’s over.

It feels like it’s been a long three weeks since I started this final phase of treatment, what with the stay in hospital when the infection I developed was at its worst (It went downhill from there). I was also very tired during the first week of treatment. Fatigue is a common side effect of radiation but in my case it could have been caused by any number of reasons. It could have been the radiation, it could have been the infection taking hold, it could have been the travelling up and down to and from Glasgow I’d done in the preceding weeks (and the reason for said travelling: In Glasgow again, but for the saddest of reasons), it could have been that I was still recovering from my surgery in December or it could be the result of having been undergoing treatment for a continual six months. Whatever the cause, I felt exhausted. But we’re nearly at the end of the road now. What an exciting – and daunting – prospect.

 

 

 

 

One down, just 3,652 to go

Yesterday I took the first of the 3,653 tablets I’m due to take over the next ten years as part of my long-term hormone treatment plan.

The oncologist said in her letter to the breast surgeon before my last chemo session in November last year that I should start hormone therapy as soon as I was recovered from my operation of 19 December and “if up and about”. I’m not exactly sure what recovered means – fully? partially? – but I’m up and about at least some of time so I decided that rather than start taking the tablets on some random, grey, nondescript day later in the month, I’d start on 1 January, the first day of the new year. So on every Hogmanay (or New Year’s Eve for the non-Scots among you) for the next nine years, I’ll tick off another year and on Hogmanay in 2025 I’ll have a massive celebration to mark my finally having finished treatment for something that happened more than a decade earlier.

That is, of course, assuming that the cancer doesn’t come back in the meantime or that some accident or other unforeseen event doesn’t cause me to shuffle off this mortal coil before then. There are no guarantees but I’m generally a glass half-full kind of gal so let’s look on the bright side ;-). And let’s face it, there are no guarantees for anyone in this life, it’s just that most of us never think about it and do just fine.

So just to recap, the breast cancer I have (had?) needs oestrogens to grow (Understanding your chemo regimen &  Breast cancer does indeed “come with baggage”). Every day for the next five years, I’ve to take one tablet of a drug called letrozole. Letrozole is one of a group of medicines called aromatase inhibitors. Aromatase inhibitors lower oestrogen levels in the body by blocking aromatase, an enzyme that converts other hormones into oestrogen. As a consequence, any slow-growing or dormant cancer cells that may have survived chemotherapy (and/or radiotherapy) are starved of the oestrogen they need to grow and so they slow or stop growing and/or spreading to other parts of the body.

Hormone treatment is now recommended for some women – I’m one of them – for ten years. Once the five years of letrozole are up, I’ve to take one tablet a day of another drug, tamoxifen, also for five years. That’s where the figure of 3,653 comes from – one tablet a day of either letrozole or tamoxifen for the next decade, and the decade includes three leap years.

The side effects of aromatase inhibitors can be severe and many women stop taking these medicines as a consequence. One of the reasons the oncologist emphasised recovery and being up and about is that exercise can help alleviate “the likely side effects [of letrozole] including bone ache and joint stiffness”. I’m not exactly super mobile at the moment but my daily walks on Tooting Bec Common must count as some form of exercise. Another reason for starting now is that I’m hoping that if I do get these side effects, I won’t notice them so much among all the other aches and pains I have at the moment following my operation and the chemo. I’m only half joking there.

Anyway, fingers crossed. Happy New Year everyone, and here’s to 31 December 2025.

 

 

 

“Maureen is tolerating the chemotherapy remarkably well”… just not today

I’m sitting at home feeling sorry for myself, nursing a cough that has kept me – and my other half* – awake for the best part of the past three nights. I also have a cold, a sore throat, and the remnants of a couple of cold sores and some unbelievably painful mouth and tongue ulcers.

I’m consoling myself by drinking Lemsip a friend dropped off earlier (along with some flowers – Thanks!) and by reading the oncologist’s report to the surgeon following my mid-September appointment with her in which she writes that “Maureen is tolerating the chemotherapy remarkably well… and is feeling very optimistic and positive”. On balance that’s true, it just doesn’t apply today.

I had another appointment with the oncologist yesterday. Showing distinct sadistic tendencies, she determined – or rather, in the spirit of the collaborative doctor-patient relationship that we’re espousing, we agreed – that, despite my various ailments, I should still go ahead with tomorrow’s chemo session, the first of four with Taxol/paclitaxel.

Here’s a full list of the side effects I’ve experienced at some point or other during the four cycles of doxorubicin and cyclophosphamide I’ve had over the past two months.

• hair loss. That was always going to happen, it was only ever a question of when. I do still have my eyebrows, though, although they are much thinner than they were, and my eyelashes, but they’re really not looking great either.
• mouth and tongue sores for a few days each cycle. This last cycle was by far the worst.
• dry mouth. That really is quite unpleasant but it does give you an excuse to have ice lollies in October.
• tachycardia. I don’t think I’ve mentioned before waking up at night the first week after the first session with my heart racing. That was scary.
• metallic taste in mouth and change of taste. This has come and gone and really hasn’t been too bad at all.
• water tasting metallic. Easily manageable, just add cordial.
• feeling pretty whacked at times. Fatigue is one of the most common side effects of chemo, but this has been nowhere near as bad as I’d feared it would be.
• pain in my left arm along the vein where the chemo drugs go in. This lasted for around a week.
• an itchy rash on my chest and lower back.
• the big thing everyone worries about is “CINV”, chemotherapy induced nausea and vomiting. I’ve experienced precious little nausea and one episode of vomiting that I’m not even sure was linked to the chemo.

In one or more of the four cycles, I also had a sore throat for a few days, one or two days of my eyes being dry and sore, and the odd headache.

All in all, I’d say I got off lightly. If you’re reading through all of that thinking that doesn’t sound light to me, believe me, it is.

I’m anticipating a long day at the clinic tomorrow. Paclitaxel is given over three hours and, with the various the pre-meds and procedures, I’m estimating I’ll be there for best part of five hours. I hope to doze through a lot of it and catch up on some of the sleep I’ve been missing as a result of this cough.

The oncologist has warned me that with paclitaxel there could be further hair loss. So I could still lose my eyebrows and eyelashes. Let’s hope not.

And just to end, I think I may be developing conjunctivitis.

It really is just one indignity after another.

*I did warn my husband that if anyone was moving into the spare room, it was him. If he chooses not to go and then can’t get to sleep for my coughing, whose fault is that?!

Goodbye to the red devil

Later today I’ll have the fourth and final round of my first set of chemo sessions. I won’t be sorry to wave goodbye to fortnightly injections of doxorubicin. This drug is nicknamed the red devil, not just because of its colour but because of its potential to cause serious side effects, including – mum and dad, look away – permanent heart damage and an increased risk of leukaemia.

In the interests of balance, I have to say I’ve also seen doxorubicin described as the red beauty, because of the amazing job it can do of stopping or slowing the growth of cancer cells. In my case, it seems, I can’t complain on that front.

Because of its potential to cause cardiotoxicity, you can only receive a certain amount of doxorubicin over the course of your lifetime. The drug certainly looks dangerous (that’s me in the photo, about to be injected with the first of two syringes of the stuff). It has to be administered by hand by a specially trained chemotherapy nurse. It’s delivered along with a saline solution as it’s too strong to go in “neat”. It can cause tissue damage if it escapes from the vein and leaks into the surrounding tissue. It can also damage the veins themselves; mine have held up well so far.

They take multiple precautions at the clinic to make sure there’s no mix-up with the drug. You get an ID band of the type they put on new-born babies, the syringes are labelled with your name, you’re asked your name and date of birth multiple times, the batch numbers of the drugs are cross checked, etc.

Did I mention it turns your urine bright red? And that they recommend you drink two litres of water the day before you have it and then two litres a day for a couple of days after to help flush it out of your system?

So it’s goodbye to doxorubicin and also to cyclophosphamide, which I’ve been taking in combination with the red stuff and which can have some pretty nasty side effects of its own.

Assuming all goes to plan, two weeks today I’ll have the first of four fortnightly chemo sessions of Taxol, or paclitaxel. That will have its own challenges, I’m sure. Peripheral neuropathy, ie damage to nerve endings that causes numbness and/or tingling in the hands and/or feet, is a common side effect, as is muscle and/or joint pain. But at least when I have that first session, I’ll be half way through the chemo part of my “journey”.