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.

 

 

 

 

Cycling challenges and lowering expectations

I’d been doing so well in terms of cycling to radiotherapy before I came down with this infection (It went downhill from there).

I’d first cycled on Day 4 (In the end, the wig ditched me). By the end of Day 7, I’d ridden to three sessions and had driven or been driven to four. Car 4 – Bike 3. Things were getting interesting. At some point during the third trip on the bike, I got the idea that it would be fun to aim to cycle to more radiotherapy sessions than I would drive to. At that point I had nine sessions left so it really wasn’t a tough target; I had plenty of leeway and I thought it might give me an incentive to cycle if I was feeling a lethargic or just plain tired. Then the infection took hold and while the goal is still achievable, it’s only just.

I’ve now had 11 radiotherapy sessions. The car has increased its lead over the bike and is winning 7-3 (I’m discounting from the car vs bike/me “duel” the session this past Friday when, for good reason, I used public transport). I came out of hospital last Wednesday and while I have been tempted to cycle on the odd day since then – particularly on Thursday, when it was such a beautiful day – I haven’t done so. I know I like a challenge but I’m not stupid and I knew I had to take it easy to give my body a chance to get over the infection.

So we’re at Car 7 – Bike 3. With just five sessions left, the best I can aim for is an 8-7 win. But a win is a win. To get it, I’ll have to cycle to radiotherapy every day this week. No pressure there. I’ve almost finished my course of antibiotics, I’ve had a very restful few days and so I’m up for trying. It’s a shame that on a couple of days the weather forecast is really not good.

Perhaps I should do as a friend suggests and just let it go. She could be right. There will be plenty more opportunities for cycling challenges. However, I’ve lowered my expectations over a good few things these past months, and as this is my final week of hospital-based treatment, there won’t many more of these particular types of challenges. I may be setting myself up for failure, but I’ve got to give it a go. I wouldn’t be being me if I didn’t.

I’m off to get my bike.

Just generally falling apart

Today I feel more like my normal self but recently I’ve felt I was just generally falling apart.

Let’s start with my teeth.

On the afternoon of what was already a difficult day (What a difference a year makes), I wasn’t best pleased to hear during my appointment with my dentist (Breast cancer does indeed “come with baggage”) that I needed two crowns… and that I really need to wear a mouthguard at night. Whaaaat? Apparently I’ve been clenching  my teeth to such an extent that I’ve damaged some of them, in some cases quite badly. The crowns are needed not only to prevent further damage but also perhaps even to save the teeth in question. Again, whaaaat? Was I aware my default position even while awake was to have my lower jaw clenched against my upper? Er, funnily enough, no, but now that you come to mention it…

I’d last gone to the dentist in February – ok, it’d been longer than the recommended six months but I’ve had other things on my mind – and no-one said a single word then about any clenching. Does that mean I started doing it quite recently? Possibly around the time of my diagnosis, in July? If so, can you really cause that much damage in such a short time? It’s often associated with stress, the dentist, who is aware of my diagnosis, says gently. Yes, I’m aware of that, I reply.

Now that I know I’ve got this “condition” – it’s called bruxism (at first it was fun but now all these new words are starting to annoy me) –  I’m obviously trying to stop it. But that only works during the day. As for the nights, well I don’t have any conscious control over what happens then and so I’ve already been fitted for a mouthguard.

The mouthguard will be a highly attractive piece of kit, I’m sure. It’ll no doubt do wonders for my self-esteem following my mastectomy and reconstruction. As if recovering from that and having various scars including one that’ll run hip to hip weren’t going to be challenging enough, I’ll also have to cope with a mouthguard. I hope it matches the beanie hats/chemo caps I already sometimes wear in bed (it’s winter, folks, and a bald head can get cold in the middle of the night). Anyway, it’s bad enough for me, but I don’t have to look at it all. Spare a thought for my poor husband. He must really be wondering if this is what he signed up for! He says it’ll be like sleeping with Hannibal Lecter. I have been a very compliant patient so far, but I’m struggling not to foresee problems on the mouthguard front.

So what else had been making me feel like a bit of a wreck since that final chemo session on 25 November?

Well, first and foremost there’s the numbness in my right foot, the result of damage to the nerve endings there from the chemo. For a few nights there this was waking me up about an hour earlier than the alarm clock was set for. The numbness comes and goes over the course of the day and while it’s not always what you could call painful, I am aware of it to some extent or another most of the time. I’ve also had a slight sore throat, a runny nose and a couple of painful ulcers on my tongue. They’ve all gone now. Then a couple of days ago, there was that famliar pre-cold sore tingle on my upper lip that had me running for the acyclovir. Thankfully that turned out to be a false alarm.

Now it has to be said that none of this is any worse than has happened before after a chemo session. It probably all seemed worse on top of the teeth-clenching discovery. I’d thought I was coping not too badly on the anxiety front, but this proved otherwise. That was a bit of a shock.

There was also the bone pain, a side effect of the bone-hardening drug I’d had at that last session. Although mild, I can’t not mention it. And let’s not forget the mess my fingernails and toenails are in. If you put all that together and add in the fact that I’m through with chemo and no longer feel the need to put all that effort into staying positive, I guess it’s not surprising I was feeling down.

The hair will grow back, the damaged nails will grow out, and the nerve endings in my feet should recover too, although it could take 10-12 months. It’s pretty ironic that the only permanent physical damage to date – the teeth – is not directly related to the cancer or cancer treatment but appears to be a result of stress. #collateraldamage #whosaidlifewasfair

I wouldn’t want you to think I’ve been a gibbering mess these past ten days, or indeed anything like it. But I definitely felt more battered and bruised than I’d felt at any time since starting chemo in mid-August… and very, very tired a lot of the time.

This may be clutching at straws, but I’m hoping for some cheer on one front. At the start of last week, I had a bone density scan. I start hormone therapy soon after my op on 19 December and the drug I’ll be taking increases your risk of developing osteoporosis. Before you start taking the treatment, you have a bone density scan to assesss how strong your bones are. This provides a benchmark against which to measure any weakening over the years you’ll be taking the treatment. The scan measures your bone mineral density and compares it to the bone mineral density of a healthy young adult and of someone of the same age and gender as you. Given the fact that I was pretty active for my age and that exercise promotes bone strength, I’m kind of hoping that, at this stage at least, my bones are in relatively decent shape. It could be a while before I get the results, though, and I’d better not speak too soon. Given that the rest of me seems to be falling apart, I’m taking nothing for granted.

 

 

 

More good news

The results from my latest MRI scan are in and, writes the oncologist, the report “does confirm ongoing response within the breast which is good news”.

I currently have an MRI scan every month, after every two sessions of chemo, to check progress. The first scan showed the main mass had gone from 30mm to 20mm (Why my oncologist “couldn’t be happier”). This second scan shows this mass now measures 11mm.  The overall affected area, which last time had gone from 100mm to 90mm, is now 87mm but is “very much less intense”. You could tell by feeling that the mass had shrunk further but it’s good to have the specific details.

The oncologist sent the results through a few days ago. I would normally show a little more enthusiasm writing about good news such as this but today I am knackered. Yesterday was our older boy’s 17th birthday and I did probably overdo it a bit.

Among other things, I made our traditional birthday meal of lasagna and garlic bread. I also insisted the boys take some birthday cake to their grandma, who lives in a care home a few miles away; grandma scoffed down the cake. For those of you who are freaking out at how unhealthy our birthday meals are, I should point out that we do always have a huge salad too (it’s there in the photo). I should also point out that grandma – my mother-in-law – has made it to the ripe old age of 93 without ever worrying about anything as trivial as a healthy diet!

Also, yesterday evening, I had a beer AND a glass of wine. In these abstemious times, that pretty much counts as binge drinking.

Incidentally, younger son was a massive help in preparing the meal. Older son refused to help “because it’s my birthday”. Fair enough, I guess, and he did hang up the washing.

I feel like I’m on speed

So I woke up this morning at around 7.30, and felt AMAZING compared with yesterday. I got up straight away, offered to make younger son poached eggs for breakfast (he said no but at least I offered), put a washing on, got food out of the freezer for supper, fired off an irate email to someone who’d sent us a final demand for a bill without having sent us the original bill in the first place then wrote emails to colleagues I’d seen yesterday to say how lovely it was to see them.

This was a different person to the one who woke up yesterday and for whom it was a real struggle even to get in the shower. As I sat on the couch in my dressing gown wondering how on earth I was going to make it through the day, I thought I won’t be able to take many days like this. So a million thanks to the friend/colleague who persuaded me to come in to the office for the lunch that I’d been really looking forward to but was now dreading. It was of course great to see everyone. Getting out and talking about normal things was just what I needed.

Then later today, I realised I’d felt much the same at exactly this point after my first round of chemo. In fact I even wrote about it (The moulting has begun, 7 September). What a relief to know it’s part of a pattern. Next time I’ll recognise it for what it is and be able to manage it so much better.

The rest of the day continued to go well. I had a walk and a coffee on the local common with a friend, I met up with some friends who’d been playing tennis, I did lots of little tasks round the house and we had a barbecue later on. I even made home-made mayonnaise, which believe it or not was a first for me. I did use a blender, but then again I did make industrial quantities of the stuff.

One of my brothers called and, as I related the day to him, I said I felt like I was on speed. No, he said, that’s the normal you! Yesterday morning I honestly thought I’d never feel normal again.

Bring on the weekend!