Goodbye to the red devil

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

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

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

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

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

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

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

How did I “get” breast cancer?

I’m sure everyone who’s told they have breast cancer wonders how they “got” it. I’m no exception.

The strongest risk factor – other than being female – is increasing age. Not much I can do about that. Did I drink too much over the years? Probably, but it was fun, and didn’t we/don’t we all? Did I smoke? Yes, but that really was a million years ago. I think I’d stopped by the time I was 24. Being overweight, especially after the menopause? Definitely put on a few kilos these past few years.

Could I have eaten more healthily? Come on, I grew up in Glasgow* – and, anyway, it’s not clear how much diet is a factor in breast cancer. Indeed until recently, the same went for smoking.

In my favour, I’ve always been physically active and played loads of sport. But is that really all I’ve got on the positive side of the balance sheet?

Well, no. Exposure to oestrogen and progesterone can also affect your breast cancer risk. Again in my favour, I’ve never taken HRT and I breastfed both children for long enough for it to matter (any time over a year in total apparently makes a difference). The fact I had children at all helps too, but against me is the fact that I was over 30 when I had them. Also not great is the fact I took the pill for years. However, the increased risk with the pill, as with HRT, reduces when you stop taking it. Breast cancer can be genetic, of course, but even having two aunts and one cousin who’ve had it doesn’t put me in the high-risk category on that front.

More research is needed, but some studies have suggested a link between breast cancer and exposure to certain everyday chemicals. If that proves to be the case, then we’re all doomed.

Despite all the scare stories, no link has been found between stress and breast (or indeed bowel, lung or prostate) cancer. A lot of people I know will be relieved to hear that.

Given all of the above, it seems to me it’s really not surprising so many of us do get breast cancer.

But while I’ve wondered how I got it, I’ve never really seriously wondered why I got it or collapsed in a heap complaining that life’s not fair. That said, I am right-handed and I love playing tennis and the cancer is in the right breast and the right axillary lymph nodes. Lots of women continue to have problems in terms of shoulder, arm and hand strength and mobility long after they’ve had the same type of surgery that is currently planned for me. There’s also a life-long risk of developing lymphoedema. I can’t help but wish the “problem” were on the left side.

*Deep-fried Mars Bars – as seen in the first photo – are apparently a Glasgow delicacy. Just for the record, I have never seen one, never mind eaten one. In fact, I hadn’t even heard of them until I was in my early 30s and living in New York when a colleague thrust a front-page New York Times article under my nose in which they featured and demanded I tell him how they tasted!

Thanks, baby bro!

I decided to take matters into my own hands when I realised that my hair was so thin and patchy that I no longer felt I could venture outside without some sort of cover.

So I got the nearest pair of scissors and my husband’s hair clippers and chopped off what I could. That was about three weeks ago and since then the wig has been a de rigeur accessory whenever I’m outside. I assumed that was it, but when I was up in Glasgow this past weekend, my youngest brother and I got chatting and we agreed he should use his own hair clippers to finish the job off. I realise this sounds a bit grim but it was in fact done amid much hilarity.

So there I was, on Monday night, sitting on a chair in my parents’ kitchen with a towel around my shoulders. We advised my parents to stay clear as I’m pretty sure it would have freaked them out to see their youngest son shaving their only daughter’s head.

My baby brother, clippers in hand, sounded every inch the barber. In time-honoured fashion, he asked me about my holidays and we chatted about the weather… and we had a laugh about whether I’d need something for the weekend (some of you younger folk, especially if you’re female, may have to Google that).

It was over before I knew it. I was completely bald and smooth-headed, and I guess that’s how I’ll be until my hair starts to grow back in once I finish chemo.

It does feel very weird. Two days on, I haven’t yet found the confidence to let anyone else other than my husband see it. Give it time, I guess. And who knows? You may even see a photo of the bare-headed me on this blog. Not yet, though. But that’s partly because the only photos I have at the moment are those I took on Monday night… and since baby bro looks so much better in them than I do, they’re staying on my phone! I still have my pride.

It’s not all bad

If I hadn’t had a cancer diagnosis, I wouldn’t be sitting here now feeling  cherished in my parents’ flat in Glasgow where I’ve come for a couple of days because I’m feeling ok after that third round of chemo last Wednesday. I wouldn’t be sitting here writing this in the bed that my dad lovingly made up for me last night, counting my blessings as my mum cooks me bacon and eggs in the kitchen.

If I hadn’t had a cancer diagnosis, I wouldn’t have got back in touch with friends I hadn’t been in contact with for years because life is normally just so darn busy.

If I hadn’t had a cancer diagnosis, my many friends – and something like this makes you realise just how many friends you have – might never have felt the need to tell me they consider me to be strong, determined, resilient, courageous, focussed and a fighter. I’m not sure the cancer cares about any of that, but it’s good to feel the love!

And if I didn’t already know what a rock my husband is, I certainly do now.

And if I hadn’t come up to Glasgow this weekend, I wouldn’t have got tickets for the final day of the Davis Cup semi-final and I wouldn’t be sitting here now looking forward to going to see Andy Murray in a few hours hopefully take Great Britain into the finals of the tennis world cup for the first time since 1978!

And I wouldn’t be looking forward to seeing my brothers and sisters-in-law and nieces and nephews and some old school friends before I go back to London to see my own two lovely boys again on Tuesday.

A cancer diagnosis turns your life upside down, but once things settle down and you take stock, you realise there’s a lot to be thankful for. I clearly wish my cancer had been caught sooner, but the bottom line surely has to be that it’s being treated with curative intent. Given that and all of the above, I am very much aware that things could be a lot worse.

The old ways are sometimes the best

Surrounded by high-tech machines measuring, bleeping and pumping at chemo session No 3 yesterday, it was reassuring to see that in some instances the old ways are still the best. Need to dilate the veins in your arms so the needle goes in more easily? No problem, just stick your arm in a bucket of warm water for a few minutes!

I can’t exactly say I left home for the clinic with a spring in my step yesterday morning. However, knowing I wasn’t going to have to suffer scalp cooling meant I was definitely far less anxious than I was the last time.

The session still took a good while – more than three hours in all – although the last hour or so flew by as an old friend I hadn’t seen for ages came to chat and keep me company. With the cool cap out of the picture, I can allow myself to have what is known as “chemo company” (one of the many new terms I’ve learnt since becoming involved in the world of cancer). Thanks, S, I’ll enjoy the sweets and will look forward to the tennis match we arranged – our first ever after all these years!

This is what happens when you turn up for your 9.30am appointment:

• You check in with the nurses on the chemo unit and choose where to sit. I always pick a station with a good view of the unit so I can see what’s going on.
• Before you even sit down, you’re weighed by the chemo nurse assigned to you for the day. The dosage of the chemo drugs depends on your weight and height so you’re weighed before each session.
• You have your vital signs checked.
• You’re given the first of the many anti-nausea drugs you’ll be taking over the course of the day and the following three days. The first, Emend (aprepitant), is in tablet form, and has to be taken one hour before chemotherapy.
• They put in place the cannula, a small, flexible plastic tube that’s inserted through the skin via a needle into a vein to administer medication. They then connect a nifty little extension set with two connectors. One of the connectors is for the drugs that’ll be administered via a drip. The second connector is for the drugs that are given as injections.
• They inject a small amount of saline solution to check the cannula is in the right position.
• You’re given via injection through the cannula another anti-emetic, the steroid dexamethasone.
• The electric heat pad on which you rest or wrap your arm for the rest of the process (to keep the vein dilated) is plugged in.
• They start the saline drip – a litre of the stuff – which helps flush the chemo through the body and will later be used to dilute the doxorubicin as it’s being delivered.
• You’re given the third and last of your pre-chemo anti-emetics, Aloxi (palonosetron), again via injection.
• Only now do they start with the actual chemo. The doxorubicin comes first, and is injected by the nurse manually, slowly and carefully. It mixes with the saline solution that’s coming in from the drip so that it goes into the body diluted. That’s the doxorubicin in the syringe in the picture. More about “the red devil” – another one of those new terms – in a later blog.
• Once that’s done, you’re given the second chemo drug, cyclophosphamide, as a drip over the course of at least half an hour.
• Finally, they give you a final flush of saline to wash through the last of the chemo through the cannula.

In between all of that, you’re brought tea and croissants and, if you’re there long enough (as I have been every time), lunch. Also, the pharmacist appears at some point and asks you how you got on with your take-home meds the last time and then puts together and brings you your next lot.

Before you leave, you pick up from the nurses’ fridge the lipegfilgrastim injection that you’ve got to give yourself 24 hours later.

And that’s it, at just after 1pm, you’re gone.

 

 

It’s a small world

It turns out the chemotherapy nurse who looked after me today today grew up in Bearsden, just a couple of miles from where I grew up in Glasgow and did her training at our local hospital, Stobhill.

I’d already found out at my first chemo session that the catering lady is from Springburn, an area not two miles away in another direction,

Small world indeed!

No need for any comments about us coming down here, taking all your jobs…

Why my oncologist “couldn’t be happier”

Today I had an appointment with the oncologist, where we went over the results of the MRI scan I had last Wednesday. Two cycles of chemo in, and the critical area within the abnormal mass has shrunk by some 50%, leading the oncologist to say she “couldn’t be happier” with progress to date.  Specifically, the central mass that measured at least 30mm in July now measures a maximum of 20mm. The drugs (not to mention the oncologist!) are clearly doing their job.

As I’ve said before (The details, 12 August), in my case the main aim of having chemo before surgery is to zap at this stage any cells that may have escaped from the primary site and that are in the bloodstream on their way to somewhere else but can’t currently be detected. Clearly the fact that the tumour is shrinking is good, although because of its location, it’s likely a full mastectomy will be needed regardless of response. Critically, however, given that the drugs are working on the tumour, the assumption has to be that they’re also doing their work on any “migrating” cells.

So as I prepare for round three of chemo on Wednesday, it’s good to know the oncologist is happy. That means I’m happy too.

I feel like I’m on speed

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

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

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

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

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

Bring on the weekend!

The moulting has begun

So it’s goodbye and good riddance to scalp cooling and hello to wigs, baseball caps, Buffs and headscarves.

The moulting began on Thursday evening, the day after my second chemo session, and has continued apace ever since. You wouldn’t believe how much hair is on a human head. And since I haven’t had it coloured since early July, much of mine is gray. “I really think that’s only news to you,” quips husband.

The wig passed its maiden outing with flying colours, according to the friend with whom I had coffee on Friday while wearing it out for the first time (you know who you are… thanks). I did have a bit of a meltdown getting ready to go round to a friend’s for dinner on Saturday evening and then again when we got back. Regardless of how the wig looks – I’ll leave it to you to guess who said it was the “best hairstyle you’ve had in years” – the very fact I’m having to wear it is for me still a big deal. Wearing it for the first time in company where not everyone knew (or did they?) was hard. Still, I feel I’ve passed an important milestone.

So at least I won’t have to suffer another session of brain freezing/scalp cooling/cool capping at my next chemo session. Did it work at all? Impossible to tell. With the combination of chemo drugs I’m on, hair loss usually happens after the first or second cycle, so I guess at most it might have bought me a week or so.

I’m doing ok, though, after that second session. No headaches this time and the mouth ulcers are still at bay. Slight sore throat this morning, so will have to keep an eye on that. Energy levels still ok, although when I woke up on Friday and felt springier than I had in days, I realised that perhaps I hadn’t in fact been up to par the previous few days. Maybe that’s how it works at first, you don’t really realise you’re tired until you come out the other side. (To the lovely ladies who’ve played tennis with me this past week, thank you so much. Again, you know who you are.)

There is one other substantial side effect; the chemo is affecting my taste buds. I’ve got a constant thick metallic taste in my mouth that no amount of brushing or gargling with mouth wash can get rid of. And I can tell you from this morning’s breakfast alone that while poached egg and hot buttered toast still taste great and strawberries still taste of strawberries… grapes, sadly, taste of cardboard. I really shouldn’t have bothered with that glass of white wine on Saturday evening. My first taste of alcohol for over a month, and it tasted just like the grapes this morning! Now that’s what I call a disappointment.

The torture of scalp cooling

That’s Chemo Cycle 2 over, and was I happy to see the back of that one.

Getting the chemo was fine, but OMG the scalp cooling. That was torture and it took all my strength to go the distance.

I have just read over my post after the first session where I said that the cool cap was “bearable”. I can’t believe I wrote that. It really was mind over matter to get through the first 20 minutes this time; the oncologist had said if you can get through the first 20 minutes, you’ll manage the whole thing, as that’s the time it takes to get to the required temperature. I buried my head in a book and tried very, very hard not to clock watch. I had a fleece and a blanket over me and I was still cold.

So you wear this really tight silicone cap on your head that covers your whole skull. That’s covered with a neoprene cap that insulates the inner one, and that’s kept on with a really tight chin strap that pushes your cheeks up and makes you look like a hamster. The cap is connected to a cooling unit that circulates coolant through the cap “extracting heat from the patient’s scalp”. Your scalp needs to be cooled from its normal temperature of 36 degrees C to below 24 degrees C. Sounds lovely, huh? I swear I felt ice when I touched the back of my neck.

Even though the wig’s been bought – and I love it – I can’t bring myself to say no to the cap. Hair loss usually starts after the first or second cycle, so I guess I’ll know soon enough whether the cap’s having the desired effect. Part of me would be relieved if it didn’t work as it would mean I wouldn’t have to bear another session. Also, the good old Macmillan website says “Some people find that losing their hair over a prolonged period while using scalp cooling is harder to cope with than the quicker, more predictable hair loss that tends to occur without scalp cooling”. Tough as it is, I think I’ll take my chances.

If you’re doing scalp cooling during chemo, you have to rest the arm in which you’re having the injections on a heated pad to keep the vein dilated. So once chemo was over and I had another hour-and-a-half to go with the cap, I used the pad as a hot water bottle. That helped a little but it was still miserable. I was so happy to leave.

I’m clearly still traumatised almost 24 hours later. Other than that, I’m fine!