Bike 8 – Car 7. Victory is mine.

In the end, I did it. I cycled to every session of radiotherapy this week. That means that over the course of my radiotherapy treatment, the final phase of the hospital-based part of my treatment for breast cancer, I cycled to more sessions than I drove to. That means that in the duel that was being fought between the car and the bike, the bike won. The final score? Bike 8 – Car 7.

It started out as a bit of fun (Cycling challenges and lowering expectations) but then it became more serious. It became really important to me psychologically that the bike won.

20160226_121012-1 (1)The infection I’d had (It went downhill from there) set me back a few days. To secure a win, I knew I had to cycle the 11-mile round trip to the clinic every day of my final week of treatment. So that’s what I did. I cycled in the rain on the first day, last Monday (Don’t wait for the rain to stop, dance – or cycle – in the rain), and then the weather turned in my favour. It was cold, but there were beautiful blue skies for most of the rest of the week. By Thursday evening, we were even at 7-7. It was only by cycling to that very last session that the bike would win. Friday 26 February dawned clear and bright and off I rode, making it 8-7 to the bike. The photo is of me minutes after arriving back home from the clinic (thanks to the neighbour who took the photo!).

It seems fitting that my triumph on the bike coincided with the very last day of the hospital-based phase of my treatment. Six months of chemo, surgery and radiotherapy – it’s all over.

I’m not stupid; I know how symbolic the “duel” was. The bike was me and the car was my breast cancer. Put simply, my treatment has gone well. We got rid of all the cancer that could be detected. There can never be any guarantees that it won’t come back in or around the same area or turn up somewhere else in my body. For the time being, however, I guess you could say I’ve won. For now, that has to be good enough. Victory is mine.

Sunburnt backs, patchwork dressings and crop tops (Radiotherapy part 2)

I wouldn’t like you to miss out on my radiotherapy adventures so here goes, before I head off to my final session and the last of the hospital-based phase of my breast cancer treatment.

Radiotherapy treatment session 1, Thursday 4th February: I turn up for my very first session minus one of the three stickers that I’d been meticulously measured up for and had stuck on me during the radiotherapy planning session a week or so earlier. The radiographers draw red and black lines on the stickers and use those as markers at every session to help ensure you are in exactly the right position for treatment (A very strange position to be in (Radiotherapy Part 1)).

When I realised I’d somehow managed to “lose” a sticker, not  long after getting it, I went into panic mode. You must have realised by now that that’s my default reaction (In the end, the wig ditched me  & Emergency delivery of post-chemo injection – to the pub!). When I contacted the radiotherapy department to tell them, however, they said not to worry and that they’d be able to use the traces that had been made of my boobs (yes, really) during the planning session. The traces or templates consist of what seem to me to be, rather than tracing paper, squares of thin, flexible perspex. These were placed over both breasts during planning and the planners “traced” the nipples, scars and various other markers (freckles?). The templates are used in the actual sessions among other things to check whether your shape changes during treatment, due to weight change or swelling, for example. They put them back over you – although not at every sesssion – to check everything’s more or less in the same position as it was in the planning session. There is some leeway but your shape mustn’t change too much. I’m advised to try not to put on or lose any weight over the 3.2-week treatment period.

20160225_233246I have three stickers, one on each side of my body a couple of inches down from my armpit and one right in the middle of my cleavage (happy still to have one of those!). That’s one of the stickers in the photo. The netting is explained below.

After the first radiotherapy session, I’m given some aloe vera gel and some oils to rub into the treated area three times a day to help minimise any skin reaction to the radiation.

Treatment sessions 2-5: Uneventful.

Treatment session 6: I turn up and report that I’m feeling a bit fluey. The reconstruction and surrounding area is looking a bit red and swollen. Skin reactions – redness, rashes, dry skin, itchinesss – to radiotherapy are common, but not at this early stage. The radiographers have me see the doctor, who prescribes a cream to rub on the affected area. I’ve to keep using the aloe vera gel and oils.

Treatment session 7: I’m feeling fine. The reconstruction, however, is redder, more swollen and very warm to the touch. “That definitely wasn’t us,” the radiographers joke. They suspect an infection. They call the doctor back. He prescribes antibiotics. He’s providing cover and says I should see the regular doctor on Monday morning, before radiotherapy.

Treatment session 8: Everything relating to the reconstruction and surrounding area has got worse, but I feel more or less ok. I can’t feel anything on the reconstruction itself as there is no sensation there. I have a sense that if I could, I’d be in considerable pain. Outside of that area, it’s very tender indeed. The doctor, who I know from chemo, isn’t happy. She gets a big black marker pen and draws round the borders of the rash/redness/swelling so we can track whether it gets any worse. She sends me off to my radiotherapy session saying I need to see her again when I come out. In the meantime, she arranges for me to see the breast surgeon later that afternoon (the consultant oncologist in charge of my radiotherapy is not around) and to have a scan that evening to check whether the swelling is being caused by fluid collecting in the area (I have form here, having already had fluid collections or seromas drained four times since my operation). I see the surgeon, who immediately starts me on a different antibiotic. The radiologist who’ll do the scan takes one look and announces “that’s cellulitis”. There is some fluid but apparently not enough to need draining. I’m starting to feel fluey again. I go back to the breast surgeon and, after a review of the scan results and a brief chat, he decides I should be admitted to hospital for a course of iv antibiotics to treat the cellulitis (It went downhill from there). Radiotherapy is off the agenda for the moment.

Treatment sessions 9-11: After a two-day break, I start back at radiotherapy. Coincidentally the machine was down the two days I was in hospital so I wouldn’t have had treatment then anyway. Things seem to be settling down although it’s hard to tell how much of the redness and swelling is down to the cellulitis and how much of it is a skin reaction to the radiation.

Treatment session 12: The radiographers don’t like the fact that the area where the breast meets the chest, the “intramammary fold”, is very red and inflamed. It is painful. It’s apparently quite common for radiotherapy to affect this area. However, this is where the “flap” of skin, tissue and blood vessels that was transferred from my abdomen for the reconstruction is attached. The last thing they (and I) want is for the skin or scar there to break down. The plastic and reconstructive surgeon is going to freak out as it is at what’s happened to her masterpiece when I see her next Tuesday. OK she won’t, because doctors don’t do that, at least not in front of their patients, but I would if I were her.

The radiographers decide a dressing is needed. The radiography assistant applies one after the session. It’s moist, cool and very soothing. Let’s not dwell too much on what it looks like, other than to say that it has to be cut to shape and I resemble Elmer the Patchwork Elephant – in pink and red. I joke about how ridiculous it looks.

I then to go upstairs to see the oncologist, who wants to see me/the damage. We discuss the cellulitis and my short hospital stay and she expresses concern that I’ve “had to go through this”. After her examination, she decides to extend the course of antibiotics that I’m on for an extra five days and says to get back in touch immediately if anything changes for the worse over the following few days.

Treatment sessions 13-14: The radiographers remove the dressing before each session and the radiography assistant applies a fresh one after each session. Now though, she decides it’s best not to use tape on the part of the reconstruction that has no feeling. So I’m wearing what can only be described as a netting crop top to hold it all in place. That’s me in the photo above. It’s an exciting addition to the range of sexy breast-cancer related garments I already own (The least sexy washing line ever). “It’s good we can laugh about it,” I say to the radiography assistant and the radiographer who’s also there on one of the days. “No,” says the radiographer, “It’s good you can laugh about it.”

Treatment session 15: Another day, another dressing, another netting crop top. But there’s more. I’ve developed an itchy rash on my upper chest in the area that’s being treated – they cover that with a dressing too, to stop me inadvertently scratching – and there’s a red patch on my back at the radiation exit site. It feels like mild sunburn, which I guess is not too far removed from what it is. The joys.

Treatment session 16, Friday 26th February: FINAL TREATMENT HERE WE COME…

 

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 elekta cclin 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. Active-Breathing-Coordinator_05Radiation 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.

 

 

 

 

Don’t wait for the rain to stop, dance – or cycle – in the rain

In the epic Bike vs Car duel that I am currently playing out on the not so mean streets of southwest London, the score now stands at Car 7 – Bike 5.

I’m trying to cycle to more sessions of radiotherapy than I drive to (Cycling challenges and lowering expectations). It’s an eleven mile round trip. Yesterday, Monday, was the critical day. It was raining (lightly, but it was still raining) and I could so easily have hopped in the car and driven. What a bad start to the week that would have been. It wouldn’t have counted towards the overall score as I’d decided that if the weather was bad, I could drive and it wouldn’t count. I reckoned that was fair. However, it would have meant that, even if I cycled to my final four radiotherapy sessions over the rest of this week, the best I could get would be a 7 – 7 draw. If I wanted a win, I had no choice but to cycle, despite the rain. Now, an 8 – 7 win is still in sight.

I did briefly consider phoning the clinic at 9 o’clock yesterrday morning to ask if they could change my appointment to the afternoon when the forecast was better, but I decided that would have been taking things too far. So I put on my waterproof trousers and jacket and off I went. I got wet, but not soaked. It wasn’t cold and it felt good. By the time I left the clinic to come home, it had stopped raining.

On the way back, I bumped into a good friend and neighbour, the Sky Sports presenter, Dave Clark.

Dave, who’s 49, was diagnosed with Parkinson’s disease five years ago and is living life to the absolute full (Dave Clark interview: Darts presenter lifts lid on five years of battling Parkinson’s – and refusing to throw in the towel). We started chatting about where we might go on holiday this summer. We’re thinking of going where Dave and his family went last year. He said a few things about how beautiful it was then remarked that it rained a lot at that time of year. No sooner had he said that, though, than he followed it with “*But don’t wait for the rain to stop, dance in the rain, eh?” We both knew exactly what he meant. That’s why I cycled to radiotherapy in the rain yesterday and that’s why, in September, Dave will be tackling the 200 mile coast-to-coast walk across the north of England, raising funds along the way for Parkinson’s UK…  but hopefully not in the rain! We hope to be with Dave for part of the trip. Way to go, Clarky.

* I’d never heard it before yesterday but I think the original phrase is “Life isn’t about waiting for the storm to pass… It’s about learning to dance in the rain.” I’m not usually one for cod philosohpy, but this one struck home. 

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.

Why I had sticky toffee pudding for dessert

I’d kind of regretted not having had the chocolate fudge cake that was on offer for dessert in hospital on Tuesday evening (It went downhill from there). I’d chosen the fresh fruit option. So when the time came to choose a dessert for lunch the following day, I decided I’d ignore the healthy eating bug that’s taken hold of me and have the sticky toffee pudding. 20160217_084705

I marked the box on the form… but seconds later the bug got the better of me and I decided I’d have fresh fruit salad instead. I scored out my  original mark  and was just about to tick the fruit salad box when the nurse came in and said it was time to take some blood. My heart sank. “Right,” I thought, “this is no time for self denial. I’m having the sticky toffee pudding.” Thus the messy order form you see in the photo.

The words “We just need to take some blood” are guaranteed to strike fear into the hearts of those of us who have veins in our arms that have been damaged by chemotherapy, and I’d already had an unpleasant experience on the Monday night, when I was admitted.

Chemo drugs are pretty potent (as you know) and the veins that have been used during your course of treatment can collapse or become hard (not sure if I’ve mentioned that lovely factoid before). The obvious vein you’d use in my left arm is currently pretty fragile (they can recover), and it’s not always easy to find a “good” vein to take blood from and/or to insert a cannula into. With me, there are now even fewer options than we might otherwise have since it’s recommended that, if you’ve had lymph node removal surgery – as I have – you don’t have blood taken from or drugs injected into veins in the operated arm. It’s to do with reducing your risk of developing lymphoedema. For the moment at least, therefore, we’re only using the left arm and the back of the left hand for these types of procedures.

In the end it was fine. It isn’t always. There’s bruising on the back of my left hand after the cannula they’d inserted into a vein there on Monday night to administer the anitbiotics had to be removed because it was causing swelling and discomfort.  All went well with the second site they chose.

These things happen and are over in the course of a few minutes and the nurses are never anything other than concerned, caring and gentle, but it can still be quite traumatic for the patient.

So now you know why I went for the sticky toffee pudding. Very nice it was too.

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). 20160216_063859The 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.