“Well done, Maureen”, “#8 Final” and I’m off the chemo leash

For the first time since 19 August my life is not governed by when my next chemotherapy session is.

Now that I’ve had my eighth and final round – a five-and-a-half hour session on 25 November – I feel like I’ve been let off a leash that’s been tying me to the centre where I’m being treated since that first session in  mid-August.

It is undoubtedly a huge milestone and while I do on one level feel very, very relieved, it’s also a little bit unsettling. An image springs to mind of those poor battery chickens that are liberated and put out to graze but don’t go anywhere as they’re so used to having been in captivity. I wasn’t even on chemo that long, just over three months, and in fact it seems to have passed quite quickly. It is pretty much all-consuming, however, and I would think especially so when your sessions are every two weeks rather than every three. On 19 August, 25 November seemed a long way off. The advice I got from lots of people to try and take it one session at a time turns out to have been very sound.

Despite the side effects and the obvious seriousness of the situation, undergoing chemo made you feel quite safe. The routine was comforting. You knew something was being done. In my case there were:

• blood tests two days before every chemo session to check whether my white blood cell counts were ok (they always were);

• injecting myself 24 hours after the end of the previous day’s chemo session with lipegfilgrastim, a drug that promotes the production of white blood cells, to strengthen your immune system and so lower your risk of infection after chemo;

• MRI scans once a month to check the response of the tumour to the chemotherapy (all good);

• the fortnightly appointments with the oncologist who, among other things, 1) appears to have done a great job of tailoring my chemo treatment (she says she “only writes the prescriptions” but I think we both know there’s rather more to it than that); 2) has patiently answered my many questions (sometimes the same ones two and three times until I got my head round the answer); and 3) has gone beyond the call of duty and reviewed some of my more “technical” blog posts (in one case adding for good measure some details about the toxicity of the particular chemo drugs I was taking); and

• the copies of the follow-up letters from the oncologist to my GP or to the breast surgeon that dropped through the letterbox a few days after each consultation. It was interesting to see how some of the layperson speak in which the appointments had been conducted turned into largely incomprehensible medical speak in the letters. I’d never heard of the word proprioception before, for example, never mind the concept the word describes. But what a lovely word. If you’re interested, it’s what the oncologist was testing when she asked me whether she was holding my toe in an “up” or “down” position (obviously I couldn’t see my toes; I had to “sense” what position they were in. This was in the context of determining the extent of the nerve ending damage in my right foot).

Lastly but most importantly, there were the chemo sessions themselves. These took place every second Wednesday in the chemo suite with the wonderful nurses and staff who always made me feel at ease and took care of me so well… and also answered lots of questions from me. I will miss them. Good natured, humorous, sometimes irreverent, gentle, calm, caring, competent, professional, attentive, watchful: they were all of that and more. I laughed when I opened my chemo record after the last session and saw that the sister had written “Well done, Maureen” and drawn a little smiley face on my notes. I can’t decide whether that or where it says “#8 Final” is my favourite part.

I got home from that final session at around 4pm. I pottered around for a bit then suddenly felt completely exhausted. There had been a lot to think about in the previous two weeks. Would my operation be confirmed for 19 December? Did I really need the lymph nodes taken out under my arm? Would I go for the immediate breast reconstruction option that involves rebuilding the breast from my own tummy tissue? Would the final chemo session go ahead? Big questions, and the answer to all of them turned out to be yes.

I took myself off to bed, supposedly for a nap but I wrote most of this post instead. I then got up for supper, and had a congratulatory glass of wine with my husband. Unlike the first two chemo drugs I was given in the first part of the treatment, the one I’ve just finished being given has not affected my sense of taste!

There will be various appointments between now and my op three weeks’ today, just not related to chemo. This coming Tuesday I’m to have a bone mineral density scan and later that day I also have a dental appointment (more on these later). Inbetween the appointments, I will enjoy having my life to myself again – even if it’s just for a few weeks at this point. I’ve already thrown myself back into work over the past couple of weeks and I’m loving it. I’d almost forgotten just how much I enjoyed it and got out of it. Looking at my diary for 9 December, my first “non-chemo Wednesday”, I see I’m having an evening out with my tennis buddies. Nice. I’ll need to make sure I do something special during the day too to mark my albeit temporary return to freedom.

What a difference a year makes

Precisely one year ago today, I set sail from Gran Canaria in the Canary Islands on a 72-foot yacht called Challenger 1 that was headed 3,000 miles across the Atlantic to St Lucia in the Caribbean.

Together with 11 colleagues, I was taking part in the Atlantic Rally for Cruisers, an annual race (or rather it’s a race for those who choose to race; most don’t, it probably won’t surprise you to hear we did) involving hundreds of yachts that all follow largely the same route Christopher Columbus took when he “discovered” the Americas in 1492. As part of our “Atlantic Challenge”, we and other colleagues had raised more thn £32,000 for Save the Children. Our crossing took 15 hot, humid, exhilirating days and nights. It was – and I’m sure will always be – one of the most exciting things I’ve ever done (the photo of the dolphins on the About page of this blog is from that trip).

What a difference a year makes. Here I am at home in rainy London preparing for my eighth and final round of chemotherapy after being diagnosed with early-stage breast cancer in July (Before Christ? British Columbia? No, BC stands for breast cancer). My last chemo session is tomorrow, 25 November*. Three-and-a-half weeks later, I’ll have major surgery (19 December – it’s official & Immediate reconstruction – the decision is made), and may or may not spend Christmas Day in hospital.

Two very different challenges. I worked so hard to get a place on the boat and I couldn’t believe my luck when I heard I’d been selected. The second challenge, breast cancer, was thrust upon me and is one that nobody would ever, ever wish for.

I was determined not to be sad today, but it’s not even 9 o’clock yet and I’ve already been in tears twice – once talking to my husband about this blog post and once later when he made a funny comment to cheer me up and I meant to laugh but cried instead. But that’s enough for one day, and I already feel better having driven back from dropping the boys off at school (yes, I’ve become a bit of a soft touch on that front) to Barry White blasting out My first, my last, my everything on the Chris Evans Breakfast Show on Radio 2.  I defy anyone not to be cheered up by that song (so thanks, Chris!). Now I feel reflective rather than sad. I plan to spend plenty of time over the rest of the day reminiscing about my Atlantic Challenge and contemplating the sheer bloody randomness of life and the importance of taking your chances when you can.

*I agreed with the oncologist at my consultation yesterday that I should go ahead with the final session as the chemo-induced nerve problem in my feet, particularly the right one, appears not to have got any worse. We’ll stick with the reduced dose of 75%. I never thought I’d ever say I was happy to have a session of chemotherapy, but I’m genuinely glad that I’m going the distance on this. As one of my fellow travellers said of my final round on the online forum that I joined back in August, “may it zap any little blighters left standing”. I can only second that.

December 19th – it’s official

I’m pleased to report the date of my operation has been confirmed for December 19th.

I heard on Friday and since then I’ve felt a lot calmer. This was something I’d been worrying about since it emerged that while the medical team who’ll be doing the op were all available on 19 December, the facility where the breast surgeon wanted to do it appeared not to be (Immediate reconstruction – the decision is made). I can worry for Scotland and, believe me, this particular concern has had pride of place at the top of my personal worry league for the past week or so. Now it’s settled I can relax (!).

Regardless of whether my final session of chemo goes ahead this coming Wednesday or not, the operation will be within the recommended period of three to six weeks after finishing chemo. If I do have the final session, the op will be three and a half weeks after finishing; if I don’t, it’ll be five and a half weeks. The decision hinges on whether the chemo-induced problem with the nerve endings in my right foot (An “excellent response to treatment”) has got any worse since my last session. The decision will be made at the consultation I have with the oncologist tomorrow afternoon. Strange as it may sound, I’ll be gutted if we skip the final session.

The hospital where I’m to have the operation – right-side mastectomy, right axillary lymph node dissection (removal of the lymph nodes from the right armpit) and immediate breast reconstruction – is further away from home than the centre where I’ve been having treatment so far. The fact we have a date is more important than the location, however, and, to be selfish about it, I’m not the one who’ll be doing the travelling to and fro during the 5-10 days I’ll be in hospital after the op! I’ll advise my husband and boys to view the travelling time as an opportunity for some dad and lads bonding ;-).

I’m flying back home to London today after a fab few days up in Glasgow seeing family and friends. I’m pretty sure I’ve put back on some of the weight I’ve lost since being diagnosed in just three days up here, what with the multiple sessions of coffee and cakes with friends, lunches out, and – because a trip to Glasgow wouldn’t be complete without it – Sunday morning breakfast of sausage, bacon and eggs.

I’m leaving Glasgow a lot poorer financially; the card school with my dad and five brothers last night did not go my way. But it was lots of fun. I laughed ’til I cried when my youngest brother (yes, the one who shaved my head the last time I was here – Thanks, baby bro!) decided he should try on my wig. It then ended up getting passed around among various other brothers and the nieces and nephews who were there too. It was good to laugh. It took two decades off my youngest brother but I can say with every confidence that it looks much better on me than it does on anyone else! Thank goodness for that. Happy days indeed.

I love Glasgow, but it’s not Geneva

So I’ve swapped the flight I had for Geneva early next year for a flight to Glasgow tomorrow. I was due to go skiing with friends at the end of January – we’ve been going every year for a while now and, yes, I did appreciate how lucky I was to be able to do this – but instead at that time I’ll be recovering from a mastectomy and preparing to start a course of radiotherapy. How’s that for a change of plan?

I love going back to Glasgow. But much as I’m really looking forward to seeing everyone and to being fussed over by my lovely mum and dad for a few days, I’d still far rather be going skiing. That’s not so hard to understand, is it? This will be the first time in 10 years that my girlfriends and I won’t have done this long weekend (or short week if you’re to accept my husband’s interpretation of it!). It’ll save my dad some money as it’ll also be the first time in 10 years that he hasn’t treated us to the first round of apres-ski beers! I’m hoping there will be other years.

It’s not been an easy week. I’ve been worrying about when my operation might be (Immediate reconstruction – the decision is made) and I’m completely paranoid about whether this nerve ending damage in my right foot is getting any worse (An “excellent response to treatment”). Watching Federer beat Djokovic at tennis at the O2 Arena here in London in the ATP World Tour Finals last night was a welcome distraction. I’d bought the tickets months ago and the boys and I were delighted to find out on Sunday it was these two who’d be playing on the evening we were going.

So Glasgow here I come. I’m already bracing myself for losing at the card school my dad, brothers and I have got planned for Saturday night. On the bright side, no matter how much I lose, it’ll be a lot cheaper than a skiing holiday!

Immediate reconstruction – the decision is made

In the end I’ve decided to go for immediate reconstruction. So as soon as the breast surgeon has done the right-side mastectomy and removed the lymph nodes from the right armpit, a plastic surgeon will reconstruct the breast using my own abdominal skin, fat and blood vessels.

These three procedures could take around eight hours in all, or perhaps even longer. The reconstruction involves complex microvascular surgery and is by far the longest part.

Now I don’t know about you but that all sounds pretty scary to me. The thought of such a long operation was one of the things that made deciding whether to have immediate reconstruction so difficult (Decisions you never dreamt you’d have to make). Now that I’ve made the decision, however, I’m completely at ease with it.

When I first found out back in July or August that I’d be having a mastectomy, I thought I’d be happy being what’s known as “flat”. I’m not sure what tipped the balance in the end but I do know that when I was watching TV quite happily last Sunday night, I happened to look down at my chest and just welled up at the thought of there being just a big gap there in a month or so’s time. I did think I could make do with a prosthesis, but it’ll be good knowing that if and when I do get back to cycling and playing tennis and skiing and swimming – and diving into swimming pools on summer holidays – that I won’t be worrying about balance and things falling out.

I’ve already had one lengthy consultation with the consultant plastic surgeon who’ll be doing the reconstruction. The surgeon went over the procedure, the risks involved and the recovery and showed me some photos of reconstructions that she’d done that are similar to what’s planned for me. This particular type of reconstruction has lots of advantages over an implant. The rebuilt breast looks and feels more natural; it changes as you age; it shouldn’t have to be replaced. As with an implant, it will have little, if any, sensation. Unlike with an implant, however, you have a hip-to-hip scar to deal with and a long recovery period. You also often need a second operation six months or so down the line to tidy the scar and do a bit of tweaking to the new breast if needed. That’s also when they do nipple reconstruction, again if needed.

Let’s focus on the nipple, then (I told you this was an education). I wrote in my last post (An “excellent response to treatment”) that the breast cancer has shown an excellent response to the chemo and that this might have positive implications for the reconstruction. In a mastectomy, the nipple is often removed but with me they are going to try and keep it. They initially thought the nipple would have to go because of the location of the tumour but the tumour has shrunk back to such an extent under the chemo that it may be possible to preserve it. They’ll give it a go; after the operation they’ll biopsy tissue taken from behind the nipple and if they find any cancer, there will have to be another procedure to remove the nipple. That would happen around two weeks after the original procedure; then we’d be looking at doing a nipple reconstruction later on.

I am now in the very strange position of not being allowed to lose any more weight before the operation. I’ve lost 4 – 5 kg since coming back from our summer holidays at the beginning of August, due to a combination of eating more healthily, eating less (this one I guess could be down to a combination of worry, the chemo and choice), and more or less stopping drinking alcohol (a lot easier than you’d think!). The surgeons are already considering changing the type of procedure I’m to have from a DIEP flap reconstruction to a stacked DIEP flap reconstruction, the latter being for women who “aren’t eligible for standard DIEP surgery” as they “don’t have a lot of extra belly tissue”. I’m one of those, apparently, although you could have fooled me!

It does make you wonder, though, about the workings of the mind with regard to weight loss and gain. I’ve lost that weight completely effortlessly and being overweight, especially after the menopause, is a risk factor for breast cancer (How did I “get” breast cancer?). I know it’s not that simple, but it has crossed my mind that I really should have been a bit more vigilant and not put that weight on in the first place.

The operation could be on 19 December, but that has yet to be confirmed. If you’re having surgery after chemotherapy, ideally it should take place between three and six weeks after your last round, and better closer to three weeks than six. For me, assuming I have the last session of chemo as planned on 25 November, that’s any time between 16 December and 6 January. The fact that this period includes Christmas and New Year complicates matters as people are on holiday and operating theatres get booked up in the run-up to the break. The issue is finding an available operating facility on a day that suits everyone. Everyone can make 19 December but it’s proving hard to find an operating facility that’s free for a whole day. I hope to find out soon if they’ve found somewhere. The fact that I’ve developed some nerve ending damage in my right foot and toes from the chemo potentially complicates matters (An “excellent response to treatment”). If it continues to get worse, we won’t do the final round of chemo. This means I’ll already have had my final chemo session and the period during which they should do the surgery will be from 2 to 23 December.

You’re in hospital for 5-10 days after this operation, so if it does happen on 19 December in theory I could be back home on Christmas Eve. I have been warned, however, that I could well be spending Christmas in hospital. Better that, though, than waiting until after the New Year.

An “excellent response to treatment”

I got some very good news at the consultation I had with the oncologist on Monday in advance of today’s chemo session. The MRI scan I had on 3 November – to review any effect that the chemotherapy drug I’d had two sessions of at that point was having on the breast cancer – shows there has been “an excellent response to treatment”.

The chemo is continuing to do its job, so much so that the “primary lesion is no longer clearly identifiable”, the much bigger suspect area that extended from the nipple back towards the chest wall “is now no longer distinguishable”, and there is no longer any sign of the cancerous lymph node there had been in the right axillary or armpit. This doesn’t mean the cancer is “gone “- you wouldn’t expect that anyway in cancers that are oestrogen positive like mine – and it doesn’t mean I need any less surgery than I was told I’d need initially. However, it’s good news in that it has positive implications in terms of my prognosis.

Regardless of the effect of the chemo on the tumour, for various reasons I was always going to have a mastectomy and also, it seems, lymph node clearance. The main aim of chemo was always to lower the risk of the cancer coming back in the future by killing off any cancer cells that had broken away from the main tumour and were on their way to a new site somewhere in the body but that that couldn’t be detected. Breast cancer cells spread through the lymphatic or blood system. As the oncologist explained at the start of the treatment, although I might be paraphrasing here, “We’re good at finding [breast cancer cells that have broken away] once they’ve got to where they’re going but not so good at finding them when they’re on their way there”. The fact that the chemo is working so well on something we can see (ie the tumour) implies it’ll be having much the same effect on any stray cells that may be out there but can’t be seen.

Importantly, the MRI scan report makes it clear that the scan “alone cannot predict the absence of disease”, that “the presence of residual tumour” within the breast cannot be excluded, and indeed that there are areas that are “presumed to relate to residual disease”.

I had a consultation with the breast surgeon too on Monday, straight after after I’d seen the oncologist, and he made it clear that mastectomy and lymph node clearance were the only safe options when it comes to surgery, again paraphrasing, “given that we’re looking to cure this”. They’ll do tests on the breast tissue and the lymph nodes they’ve removed post surgery to determine how much cancer is there. Clearly there will be less than there would have been had they done the mastectomy and nodal clearance in August before I’d had chemo. The lower your “residual tumour burden” at the time of surgery, the better your long-term prognosis.

There’s been a bit of a glitch with regard to chemo side-effects. I have developed in the ball and toes of my right foot some degree of chemotherapy induced peripheral neuropathy, a known side effect of paclitaxel, the chemo drug I’ve now had three sessions of after today. It’s a very strange type of pain, like a mixture of numbness and pins and needles and throbbing that comes and goes. It’s been enough to wake me up a few times in the middle of the night. The oncologist did a test whereby I’d to say whether she was touching my toes with a sharp object or a non-sharp object. I felt the touch, but pretty much “consistently failed” on whether it was from the sharp or non-sharp object. The oncologist therefore reduced the dose of the drug for the chemo session I had today by 25%.

I’ve to report back at my consultation with the oncologist in two weeks’ time – before my fourth paclitaxel session, which is my eighth and final chemo session (yippee!) – on whether this problem has got worse. The aim is to see the chemo regimen through as it’s having such a positive effect on the cancer, but not at the expense of long-term nerve damage that won’t get better. If the neuropathy continues to worsen – it started after the first round of paclitaxel – we won’t do the final round of chemo.

Lastly, the effect the chemo has had may also have positive implications for the reconstruction I’m having done at the same time as the mastectomy and lymph node clearance. Yes, I’ve decided in the end to go for an immediate reconstruction and indeed first thing yesterday morning met with the plastic surgeon who’ll be doing the procedure. It looks like the operation could be on 19 December. More on this at some point. It’s been a busy few days.

PS I’ve preferred to go to most of the consultations on my own but my husband was there on Monday when I met the oncologist and breast surgeon. This whole thing has been a massive education for me. Think what it’s been like for a man who claims not to have known until after I started chemo that we had white as well as red blood cells! When I told him I was adding this to the blog, he said he wanted to know first whether I was holding any other colours back from him. I think he was joking on this last point. Either way, our consultant haematologist friend is going to despair when she reads this.

A lesson on living in the now

I got up this morning very much looking forward to my second mindfulness workshop at the centre where I’m having my breast cancer treatment. I’d so enjoyed the session I’d gone to a month or so ago that I’d signed up again. Not only was I really looking forward it, I’d also psyched myself up to cycle there.

I hadn’t been out on my bike for ages and I was more than a little apprehensive about my ability to make it. There’s one big hill on the way there that I’d struggled with the last time, after just one chemo session. Now I’ve had six sessions, and while I have made real effort to stay active, my energy levels are not what they were. On top of that, it was really windy. But I thought I’d go for it; I’m very aware that with the operation coming up, I’ve got to do these things while I can.

I got there, but it was hard. I cycled most of the 5.6 miles in gears usually reserved for hills, which made the hill when it came even harder. I did not get off the bike. It took much longer than I’d anticipated (almost 40 minutes!) and I arrived at the centre very hot and sweaty, very red in the cheeks and eight minutes late. I locked up my bike, quickly swapped the fitted chemo cap I’d been wearing for my wig, rushed into the centre… to find the session had been postponed and rescheduled for another day.

Now if this had happened four months ago, I’d have got really cross. It  might not have been obvious externally but I’d have been fizzing inside. And I’d have stayed cross for a good while. Today, I did get cross – you can’t change that quickly! – but not for long. I took a few deep breaths, remembered the reason I’d come, got myself some water and a coffee and sat down to cool down. I then had a chat with a woman that I’d met once before who’d also turned up for the session. Forty minutes later, having met yet another woman I knew and had a chat, I set off for home, wig back in the bike pannier and chemo cap firmly in place.

The ride back was much easier than the ride there. On the way home, I noticed a restaurant with the same name as a friend of mine so I stopped and took and photo and emailed it to her. Just like with the bakery the other time I’d cycled (Love that bike!), I’d driven past this spot on my way to and from appointments but had never noticed it from the car. Yet another win for the bike in the bike vs car stakes!

It doesn’t end there. As I was on my bike, I was able to stop and buy some pesto at the Earlsfield branch of Carluccio’s. Carluccio’s is an Italian restaurant and deli which sells the best fresh pesto you’ll ever taste; my boys will tell you that I can’t walk past one without going in and buying some. I knew this branch was here but had never been able to stop in all the times I’ve driven past. Yet another win for the bike!

Later on the way back home, yes, you guessed it, I whipped off the cap. This time it wasn’t because I had anything to prove (Paris and being where I never thought I’d be & The Great Sugar Loaf Uncovering), I was just so hot! The wind on my scalp felt good.

So here’s to living in the now. I’m booked on to the rescheduled mindfulness session, two weeks today. Watch this space on whether I cycle to that one.

Decisions you never dreamt you’d have to make

One of the things that makes this “journey” so difficult is that you’re forced into making lots of decisions you never dreamt you’d have to make. And some of those decisions are really big.

One of the first things I had to decide following my breast cancer diagnosis in mid-July was whether to cancel our summer holiday or not. We decided to go ahead with it (It’s ok to cry). At the time that seemed like a big decision but it was nothing compared with what was to come.

Then I had to decide whether to have chemotherapy before or after surgery. At the time I essentially viewed this a choice over what to lose first, my hair or my right boob. I said as much to the consultant breast surgeon. I think I was still in shock. I can’t remember whether he found it funny. Unlikely, I would have thought. Anyway, I went with the recommendation of the surgeon and the oncologist and opted to have chemo before surgery. So I’m bald but very happy to have held on to (not literally) my breast for these extra few months.

I really didn’t have much choice over whether to have chemo or not. I was an obvious candidate, given among other factors the size of the tumour, the fact it had spread to the lymph nodes and was fast growing. For lots of women, it’s far less clear-cut. That must be a really tough decision.

Much the same factors make me an obvious choice for radiotherapy, which I’m to have after surgery. Lastly, the fact that the tumour is oestrogen-receptor positive means it should respond well to hormone therapy. So again, the decision on whether to take hormone treatment on a daily basis for the next ten years has really been made for me.

While some decisions were essentially out of my hands, there are plenty of others that weren’t. Many of these had to do with hair loss:

• Whether to try the scalp cooling in an effort to stop my hair falling out. I did (You couldn’t make it up & The torture of scalp cooling).
• Whether to have my hair cut short in advance of it falling out. I did (Long hair – vastly overrated?).
• Whether to stop the scalp cooling when my hair started falling out anyway or to persevere. I stopped (The moulting has begun).
• Whether to just bite the bullet once it did start falling out and shave my head. I did (Thanks, baby bro!).

Now I’m in the process of deciding whether to have breast reconstruction at the same time as my mastectomy and lymph node removal or whether to “go flat” first and see how that goes.

Some women seem to know almost instinctvely what they want. I thought I was one of them but it turns out I wasn’t. In the end, this has turned out to be a really hard choice. I started off determined to try the flat route, but the more time has gone on the more I’m coming round to thinking I should go ahead and have the immediate reconstruction. Believe me, I have spent a lot of time working this one through, quite often while lying awake in bed at 3, 4 or 5 am. Indeed sometimes at 3, 4 and 5 am on the same night. I can find plenty of arguments for and against both options.

The reconstruction that I’m being recommended is a DIEP flap reconstruction – DO NOT CLICK ON ANY OF THOSE LINKS IF YOU ARE AT ALL SQUEAMISH. Yes, it’s the one that involves moving skin, fat, and blood vessels from your abdomen to your chest and so it means that post-op “your belly will be flatter and tighter — as if you had a tummy tuck”. Strange as it might seem, I can honestly say that really does not figure at all in the debate I’ve been having with myself over this.

Crunch time for this big decision is fast approaching. I have an appointment with the breast surgeon to discuss my mastectomy in just a few days’ time, on 9 November. That’s just a couple of weeks before my final chemo session, which is on 25 November. It’s quite possible I could have the operation before Christmas.