An update

In the grand scheme of things, I’m quite relieved at the results of my latest round of blood tests.

I met the oncologist earlier this week to discuss the results of the tests I’d had done the previous day. The best I could have hoped for was for my tumour marker to have stayed at the level it had jumped to in December. I figured that was unlikely given that it had risen by a whopping 20% between the November and December blood tests. In the event, it went up by around another 10%.

On the upside, on the blood front things are good. The secondary breast cancer that has spread to my bones has also infiltrated my bone marrow and so reduces my body’s ability to make healthy blood. It was therefore good to hear that my haemoglobin count is up from last month and is again within the normal range, albeit at the very lower end. My neutrophils, while still below the normal range (they’ll never be there again), are 40% up on last month. That means I’m a little better placed to face any infection that comes my way – a positive in the current climate.

Once again, it’s swings and roundabouts. The tumour marker is up but bloods are ok.

With the pandemic still on the rampage, every effort is being made to minimise the number of trips patients on treatment make to hospital. For example, every other appointment with the consultant over the past nine months has been on the phone rather than in person. In fact, I may have had more over the phone than not. Some people don’t like this way of communicating but it’s fine by me. In addition, for my next two rounds of treatment, I’m going to self-inject at home the bone strengthening drug (denosumab/Xgeva) that I have at the start of every new cycle. It’s usually done by one of the oncology nurses at the day treatment unit at the hospital. I did it myself last month at the unit under supervision and that too was fine.

The fact that the marker is going up indicates that there is increased cancer activity somewhere in my body. That’s what happens with secondary cancer. It eventually outwits every possibly treatment. While these latest results were far from disastrous, you do have to be practical. The oncologist therefore discussed with me what drug(s) I might move onto if the scans I’m to have in seven weeks show signs that the cancer has progressed to the extent that we need to change to another treatment. The scans could show any number of things. While you can’t predict a precise course of action in advance as you don’t know what you’ll see, you can be thinking of what might need to happen under various scenarios.

The discussion was quite sobering. But let’s not pre-empt things. That decision – if indeed a decision needs to be taken – is eight weeks away. In the meantime, I carry on with my current treatment and just get on with things.

One of those things is reporting my health status daily on the Covid Symptom Study app – covid.joinzoe.com – that is used to study the symptoms of COVID-19 and track the spread of this virus that is causing such devastation and unimaginable heartache to so many. (On a personal level, next week will see the funeral of a good friend’s husband who died from COVID-19 just after Christmas. His death was heartbreaking on many levels.)

It seems heartless to carry on writing about my own experiences having just written those previous two sentences, but the case is that I reported having a runny nose on the Zoe app, as it’s known, one day last week. While a runny nose is not a symptom of infection with the virus, I, together with any other household members, was “invited” via the app to take a test. It was all very efficient. The test kits were delivered the day after we requested them, we posted them back the following day and got the results – negative in the case of both myself and my husband – 36 hours later via text and email.

I reckoned the results would be negative but, with transmission rates as high as they are, you can obviously never be sure. Our two boys are back at uni and so it’s just my husband and me in the house. I work from home so it’s been a few weeks since I’ve been out for anything other than to exercise or attend hospital appointments. In my husband’s case, it’s for exercise or shopping. I now exercise on my own; I’ve even stopped the walks with friends that had become such a regular and welcome feature of life.

I’m feeling well on the whole and another thing that I’m doing now that I don’t meet up with friends for walks is go out almost every day either for a run or a bike ride. The reason is that I have signed up to a bit of a mad challenge that involves running and/or cycling a total of 192 miles between the beginning of January and the end of March. I could do it all on the bike but I’ve decided to do as much of it as I can on my own two feet rather than on two wheels. Running is so much more challenging than cycling, at least it is for me given the pace at which I cycle. I run incredibly slowly but I guess it still counts as running in that I do overtake people who are simply walking!

There’s no way I’d be running if a friend hadn’t suggested we both sign up for this challenge. Even after having signed up, I’ve had to come up with an incentive to get me out running. I wanted to listen to Transmissions, a multi-episode podcast that I’d heard was really good – about the iconic Manchester bands from the 1980s, Joy Division and New Order. I decided I would only listen to the podcast while running. It was a good plan and it works both ways. I’m loving the podcast so much that I go out running so I can listen to another episode and listening to the podcast makes the runs easier.

This has been a good week for running. I’ve got the week off work, so I’ve got no excuse really. I’m in the category of people for whom work has never been busier and I worked part, if not all, of each of the four working days between December 24th and 31st. It has been so relaxing to have a big chunk of time off. The house is very quiet now that the boys are away again. We had a lovely Christmas together. It’s usually just the four of us anyway on Christmas Day so in that sense at least it wasn’t so different from other years.

The photo above on the left is of me on the 25th, relaxing on the sofa with two of my presents after an almost two-hour spin on the bike – out to Richmond Park, a favourite destination around seven miles away.

The photo on the right was taken in our garden by my husband not long after the bells on New Year’s Eve.

Hogmanay, as we Scots say, normally makes me feel quite melancholic. This year, though, presumably because of all the sadness that 2020 held, it felt important to celebrate and look forward – both because of and despite what the future may bring.

How’s this for awesome?

Here’s an update on the past few weeks. It’s mostly been more than good and a couple of really lovely things have happened to me.

If things carry on at this rate, I may well attempt to cycle the full 100-mile route of the Ride London event early next month.

Here goes.

First off, later today, essentially without there being a break from treatment cycle #2, I start treatment cycle #3 for the advanced breast cancer I was diagnosed with a few months ago.

At St George’s Hospital in Tooting in south-west London, I’ll have two injections of Faslodex (fulvestrant) in my buttocks, I’ll be given the bone-strengthening drug Zometa (zoledronic acid) via a drip in my arm, and I’ll start my next round of twice-daily Verzenios (abemaciclib) tablets.

Each treatment cycle lasts 28 days. I had to have a short break between cycles one and two and I feared there might be another one between two and three – or that we might have to reduce the dose of tablet that I’m on. I’d really rather not have either at this stage as there are some signs that the drugs are having a positive effect and I’m totally paranoid about doing anything that in any way, shape or form might reduce the effectiveness of the treatment.

The reason I had the break between the first two cycles is that abemaciclib had pushed my neutrophil count to below the level that’s considered safe to continue treatment. That’s still happening. To counteract that, I had to self-administer injections of a drug called filgrastim yesterday evening and the previous evening. I’ll do the same again half-way through and at the end of this latest 28-day cycle. Filgrastim boosts the production of neutrophils – the white blood cells that help fight infection – and I inject it in my belly area. I did much the same during chemo nearly four years ago.

Assuming this treatment cycle passes uneventfully, my next trip to the hospital won’t be until near the end of the 28-day period, when I’ll have blood tests in advance of seeing the consultant and hopefully get the go-ahead to start treatment cycle #4. In the time between the two injections, we should manage a ten-day family holiday in Spain.

Re the drugs having a positive effect, my blood test results from Monday show that my tumour marker levels are down – again. A decrease in marker levels during treatment can indicate that the tumour is responding to treatment. You don’t want to get too excited but that’s a positive early sign.

On the pain front, I haven’t needed to use painkillers for weeks now. I have been in no pain whatsoever for a good couple of weeks. I’m expecting potentially to have to take painkillers over the next few days as the fulvestrant and zoledronic acid can cause bone and joint pain.*

There have been some tough moments emotionally, when I’ve started thinking too far ahead. However, for now I’ve become a bit of an expert at pulling myself back to the present PDQ.

Now on to the subject of exercise. Since suggesting in my last blog post that I might take up swimming to make up for no longer being able to run or play tennis, I have been swamped with offers from friends and acquaintances to swim with them – outdoors!

In the past ten days alone, I’ve been for two early-morning swims at Tooting Lido, the big outdoor swimming pool near where I live. I’ve also been to an evening session of open-water swimming at the beautiful Shepperton Lake on the outskirts of south-west London. I’m due to swim again at Tooting Lido early tomorrow morning and at Victoria Docks in the Thames one evening next week. All new and lovely experiences for me. I don’t have the fitness to do front crawl for more than a few strokes at a time but breast stroke is fine.

On top of all that, I managed a 75-mile bike ride last Sunday, with two cycling friends. I thought it was a flat 100k route but we followed a friend’s route and hers was 120k! That’s made me think I should at least try to do the longer, 100-mile route of Ride London, the mass participation, closed road bike ride through London and the Surrey hills that’s taking place this year on 4 August. I got a place in the public ballot but when I started treatment in May, I didn’t think I’d even be in a position to attempt the shorter 46-mile route.

And how’s this for awesome? If you’ve been following this blog, you’ll know I was gutted at having to pull out of a big charity bike ride known as Le Loop that I was planning on doing in France earlier this month.

As part of Le Loop, I was due to cycle Stages 5-7 of this year’s Tour de France route a week before the real thing. A bunch of us from BellaVelo, the cycling community and club based in south west London that I’m a member of, had signed up to do various stages of the Tour as part of this big fundraising event.

It turns out that some of the BellaVelo women who did take part in Le Loop – often riding more than a 100 miles a day in ridiculously high temperatures – wore ribbons with the Scottish flag on on their helmets or bikes or even as hair ties while they were riding. Why? Because they thought it would be “a nice way to include you in Le Loop even though you were unable physically to be there”.

I’m still feeling so chuffed about that. What a kind gesture. That has to be up there with having had a sonnet written for me!

There’s more. Two BellaVelo members are currently riding every stage of the Tour de France the day before the pros. They’re part of a team called InternationElles and they’re doing this amazing feat to raise awareness of inequality in cycling. Anyway, what they’re doing is incredible and so demanding… but they took time out to send me a video of support. That was very cool.

Staying with the cycling theme, it was my 56th birthday recently and my husband gave me as a present a lovely framed photo of the two of us dressed up for an evening out… with a second option – of me with my bike and in full cycling kit – in case I get fed up with his first choice! In the one of me on my own, I’m standing at the top of Box Hill in Surrey. It’s a classic ride for south Londoners and we’d cycled there a few weeks ago to see whether I’d be able to do it. I was delighted that I could. My husband knows how much both photos mean to me. He is a star.

On top of that, on Monday I had the best evening out with three friends I’ve known since my early days in London. I’m the only one who still lives in the capital and this was a very hastily arranged get-together. They’ve been friends with each other since childhood and I’m the blow-in! It was a beautiful, fun-filled, life-affirming evening.

I could go on but I’ll mention just one more thing. A friend has given me a book called the Poetry Pharmacy, by William Sieghart. If you haven’t come across it, try to get a copy. It could change your life.

Plenty of other friends and family members have made other lovely gestures. I massively appreciate them all. I feel surrounded by kindness. People are amazing and it’s good to be alive.

*In the end, painkillers weren’t needed. There was no pain at all in my glutes after the injections and no joint/bone pain at all over the following days. 

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?

So how did it all happen?

Here’s how I found out I had secondary breast cancer.

I developed backache and a sore right hip in mid-March while I was on my first ever overseas cycling trip, in Mallorca. The week-long trip was the first proper phase of the huge amount of training I was planning to do over the following few months that was to have culminated in a long-distance, three-day charity bike ride in France in July.

Initially I put the pain down to a mix of factors. For starters, while I’d done plenty of indoor training, I hadn’t ridden much at all outside or for any distance over the winter, and here I was doing back-to-back 50-75 mile rides involving quite a few hills. Also, I wasn’t using my own bike. While the rental bike was far better than mine and I loved it, I figured I was probably riding in a different position and that that was part of the problem. I hoped I’d just strained my back and hip and that it would soon get better. Interestingly – and fortunately – while the pain was at times quite bad, there was no pain at all when I was on the bike and cycling.

The pain persisted when I got back to London, although it would come and go. The most common place to which breast cancer metastasises or spreads is the bones and I knew backache was a potential symptom of it having spread to the spine. The pain was worse at night and when I was lying down. I did some reading and discovered that these too were signs of “bone mets” in the spine.

I very rarely get backache of any kind. Pretty quickly therefore, I decided to contact the consultant oncologist who treated me for primary breast cancer in the summer of 2015 and ask her advice, hoping all the while that it was just a sprain and that it would go away soon.

That was in late March. The consultant said it made sense to investigate further, so I had some blood tests done the following week.

The following weekend, I held a games afternoon at home to raise funds for the charity I was going to be doing for the bike ride in France in July. Other than the intermittent back ache and the periodic hip pain (the latter had in fact almost gone by then), I felt as fit as a fiddle. This fundraiser had been planned for ages and, at that point, while I was worried, I was still hoping the remaining pain would disappear with time.

That hope all but disappeared when the consultant subsequently called to say some of the blood results “weren’t entirely normal”. It made sense to follow up, she said, and a PET CT scan was being arranged for the following week. The writing was on the wall.

Despite this big shadow hanging over us, my husband and I managed to have a lovely Easter. The pain in my right hip had gone away completely at this point. As for the pain in my back, it sometimes disappeared for days at at a time, it always came back.

In the now forlorn hope that I would still be doing the various cycling events I had planned for the summer – or perhaps it was just to make myself feel better – I went out training on three of the four days of the Easter weekend. I even set myself a new speed record, reaching just over 40mph on a descent in Surrey.

My husband came with me on two of the rides. We don’t usually ride together but I think we were both aware that our lives were about to undergo a massive change and wanted to enjoy each other’s company while things were still relatively normal.

I had an appointment with the consultant the day after the Easter weekend, on 23 April. This was a couple of days before I had the PET CT scan and it was to have been my regular annual review with her. The consultant knows from having treated me before that I like facts and straight talking. So when I asked what she thought the problem was, she told me that, going by the blood test results, she strongly suspected that the breast cancer I’d been treated for more than three years earlier had spread to my bones and infiltrated my bone marrow. We even talked through potential treatment plans.

Among other things, the level of a specific breast cancer marker (CA 15-3) in my blood was very high. While this was “meaningless in itself”, I also had anaemia. The two things together clearly spelt trouble.

A week later, and the results of the PET CT scan confirmed what the consultant had predicted – “bone metastases and bone marrow relapse”. 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 may well be related in some way to the diagnosis. Then again, it may not be.

Thankfully our two young-adult sons were away at the time. We had time to digest the news ourselves and to plan a strategy for breaking it to them.

Since the PET CT scan, I’ve had numerous additional blood tests, a bone marrow biopsy, an MRI scan of my spine, and I’ve started treatment.

I have, of course, had to withdraw from the charity bike ride in France in July. More on that later.

Post-op progress report No 5: On very intimate terms with three new people

Fifteen sessions of manual lymphatic drainage later and things were looking a lot better. My reconstructed boob was much softer and less swollen, the swelling had all but gone in my right “flank” (I do like that word), the scar tissue that had developed after the operation was softer, and the tethering on the reconstruction had been massaged away to next to nothing. And I was on very intimate terms with three new people… or rather they were on very intimate terms with me.

More or less daily for three weeks in May, I lay there on a treatment bench in a room in the hospital for an hour at a time, naked from the waist up – yes, again (although there was a towel to cover me) – and gave myself over to the ministrations of one of three different MLD therapists. My initial scepticism about what might be achieved turned to admiration, fascination and surprise as the results started to show. And if you thought acupuncture was relaxing (Acupuncture, tennis, a haircut and going back to work), MLD takes you to another plane altogether. Within seconds of the therapist getting to work, I would feel myself starting to drift off. It was awesome.

So what is manual lymphatic drainage and how is it used in the treatment of lymphoedema? For yes, dear reader, that is what I have, in and around the operated area. Well – and all I’ve done here is copy and paste from the MLD UK website – in MLD “the therapist uses a range of specialised and gentle rhythmic pumping techniques to move the excess fluid into an area with a working lymph vessel system. This stimulates the lymphatic vessels and helps move excess fluid away from the swollen area so that it can drain away normally.” With me, the areas that the therapists manipulated were in my neck (that’s what sent me to sleep), my right and left flank, around my left boob, and all the way across the top of my upper chest and various parts of my back.

I felt quite low as the final sessions approached, firstly because the results were so good and secondly because the sessions themselves were so pleasant. I was taught how to do “self MLD” myself and I endeavour to do this every day before I get up to keep the swelling at bay. It’s not the same, though, as having someone else do it, for a whole hour at a time. Somehow it’s easier to cycle half an hour to the hosptial, have an hour-long session and cycle half an hour back home than spend half an hour doing it to yourself in the comfort of your own home. In a perfect world, I’d have my own private MLD therapist for use on demand!

So the reconstruction looks and feels a lot better than it did. But while the swelling is down, it hasn’t gone completely. And the tethering is back, although it is better than it was. Also, while the cording has improved, it’s still there. And it’s all still tender. And, somewhat disconcertingly, over the past week or so there’s been more pain and discomfort in the general area than there’s been for a while. Everything seems to tighten up overnight and while it eases off once I do some rubbing, massaging and stretching, the discomfort persists throughout the day. I don’t know whether it’s post-surgical pain or whether it’s the cording or lymphoedema or something else that’s causing it.

I’m now six-and-a-half months out of surgery and while they warn you that things “take time” to settle down, I somehow – probably naively, or even arrogantly – expected to be pretty much back to normal physically by now. But I hadn’t counted on cording and lymphoedema. The time seems to have flown by but I can’t help but be disappointed that at this stage there are still “issues”. I’m seeing the physiotherapist again the week after next after a bit of a break. That will help, I’m sure. It always does. I also have some more MLD sessions this coming week, which I’m hugely looking forward to.

Other things have also improved since my previous post-op progress report, in April (Post-op progress report No 4: Passing the Velux window test and “running” 5k). The horrible, painful tingling and numbness (chemotherapy induced peripheral neuropathy to give it its medical name) in my feet has all but gone. I’m so relieved at this. I hardly noticed it when I did my latest 5k Parkrun, yesterday – and when, by the way, I smashed my personal best by more than 40 seconds and came in at well under 29 minutes! I’m back to playing tennis regularly, and am delighted to be back on the ladies doubles team. Whatever problems I have with my arm and chest, it doesn’t affect my running or tennis. And I don’t feel the problems are caused by either.

The scar across my abdomen is continuing to fade – thanks in part to the fact that I massage Bio-Oil into it once a day and twice if I remember and can be bothered.

And I’m loving being back at work.

Over the next two weeks I’ll see the plastic surgeon, the breast surgeon and the radiotherapy consultant for two- and three-month reviews. I’m pretty sure they’ll tell me that as far as the discomfort and swelling is concerned, it’s still “early days” and that with stretching and physio and MLD and more time passing, things could still improve. That’d be good. I guess I’m just impatient.

 

 

 

 

It’s not over ’til it’s over

The hospital-based phase of my breast cancer treatment has finished but there’s still lots going on. My final radiotherapy session was a week ago now (Bike 8 – Car 7. Victory is mine) but by tomorrow afternoon I’ll have been back at the centre every day this week except today. Given that I started radiotherapy on 4th February, that means I’ll have been there every weekday – including two days as an in-patient – for precisely a month. No wonder I’m tired. And there’s more to come.

On Monday, I had my post-radiotherapy appointment with the consultant oncologist who organised the radiotherapy treatment. Also on Monday, I had to have new dressings put on those parts of the irradiated area that are worst affected by the radiation. On Tuesday, I had a six-week check-up with the plastic and reconstructive surgeon. On Wednesday, I was back at the radiotherapy department to be checked over and to have fresh dressings applied. I’ll be there again tomorrow for the same.

Let’s start with the “radiotherapy-induced skin reaction”. This is really common in people receiving radiotherapy (Sunburnt backs, patchwork dressings and crop tops (Radiotherapy part 2)) and can involve redness (yes), dryness (yes), itchiness (yes) and skin breakdown, ie cracking or weeping (not quite, although one or two areas are still at risk). The reason they’re keeping a close eye on things is that radiotherapy side effects can continue to develop after treatment ends and indeed can be at their most severe around 7-10 days after your final session. While the radiographers don’t think the skin will break down now (if it did, I’d be at increased risk of infection), they’re continuing to take precautions until the 10 days are up. Better safe than sorry, especially with my record on infections.

On to Monday’s meeting with the oncologist. She examined the irradiated area and said she was “hopeful” the infection that had me in hospital for two days on iv antibiotics was resolved (It went downhill from there). I finished my course of antibiotics later on Monday and there’s been no flare-up, so it’s good news on that front.

There’s still swelling/fluid build-up in the reconstruction and under my arm and the cording  (where the lymph vessels have hardened following the removal of the axillary lymph nodes) there has got worse. The cording now stretches from where the reconstruction meets my chest to past the crook of my arm. The oncologist suggested that a massage treatment called manual lymphatic drainage or MLD might help with the swelling. From what I can tell, this could require sessions three times a week or more for up to three weeks. So much for finishing treatment. Except now, of course, instead of treating the cancer, we’re treating the side effects of cancer treatment. Major difference. The physiotherapy I was having – and loving – for the cording is on hold until the skin reactions from the radiotherapy clear up. The MLD wouldn’t start until then either.

As for the plastic surgeon, there’s good news there in that she didn’t seem overly concerned at the appearance of the reconstruction and surrounds… despite the swelling, redness, inflamed scars and indentations. She did agree it was not the “lovely” – my word, not hers – thing that it was in the aftermath of the operation. However, she said reassuringly that while it might take six months (yes, six months!) for everything to settle down and will likely require a second round of surgery to tidy things up, “I don’t think you’ll have any problems” in the longer term. Phew. My claim to fame is that she took a couple of photos for her collection. She didn’t often get to see her reconstructions like this, she said, ie in their full, immediate post-radiation, scarlet glory! I’m really not used to having this part of my anatomy photographed but I was happy to oblige.

The abdominal scar has healed really well. I got some advice on how best to massage the area above the scar to loosen it off (it’s still quite tight) and on scar care in general. Also, not that I did that that much of it before, but I can start running again. I’ve to wear two bras, though, a regular sports bra and a crop top!

Next week is shaping up to be a lot quieter on the appointments front. Hopefully the radiographers will sign me off at the beginning of the week and then I’ll have nothing until the following week when I’ve got appointments with the two consultant oncologists involved in my care. The oncologist responsible for the radiotherapy – a clinical oncologist – will review how the skin reactions and swelling are looking and perhaps I’ll get an idea of when I can restart physio and perhaps start this new MLD treatment. The oncologist who’s been responsible for all my drug treatment to date – a medical oncologist – will arrange a date for me to come in to the chemo unit for my next cycle of the bone-hardening drug, zoledronic acid (Breast cancer does indeed “come with baggage”). I’m to have this initially every three months and then every six months during the five years I’m on letrozole hormone therapy. I had the first cycle with my final chemo session last November. It’s hard to believe that was only three months ago. It seems like an absolute age.

 

 

 

 

 

 

 

The drugs, round 1

For those of you who are interested, here is a list of the drugs that I’ll be having under the first part of my chemotherapy regimen (AC), as kindly provided by the lead oncology pharmacist at the centre where I’m being treated. 

After all these years writing about drugs such as these from a regulatory and corporate standpoint, it feels very strange to be experiencing them as a patient.

Drug	What is this for?	Manufacturer	Comments
Aprepitant (Emend®)	Anti-sickness	Merck, Sharp & Dohme	Pre-medication and post chemotherapy
Palonosetron (Aloxi®)	Anti-sickness	Chugai Pharma	Pre-medication
Dexamethasone	Anti-sickness	Hospira UK Ltd	Pre-medication and post chemotherapy
Sodium Chloride 0.9%	To keep IV line patent	Baxter UK Ltd	Line Flush
Doxorubicin (Adriamycin)	Chemotherapy	Medac GmbH
Cyclophosphamide	Chemotherapy	Baxter UK Ltd
Domperidone	Anti-sickness	Generic brand	Post Chemotherapy
Laxido®	For constipation	Galen Ltd	For gentle relief of constipation if needed
Biotene®	For oral hygiene	GSK	Non-alcohol based mouthwash
Lipegfilgrastim (Lonquex®)	To boost white blood cell count	Teva Pharma	Long acting Granulocyte- Colony stimulating factor (G-CSF)