The ups and downs of today

The good news from today:

• blood test results were “perfect”, which means I’m on track for my next chemo session
• the couple of painful mouth ulcers I’ve had for the past couple of days are well on the wane.

However, this has been by far the roughest day to date. I went to bed last night with a headache, woke up this morning with an even worse one feeling really tired, and only hauled myself out of bed because I had the blood test appointment at the hospital this afternoon. I told them I wasn’t feeling well and they checked me over (heart rate, temperature, blood pressure and blood oxygen saturation), and while a couple of measurements were slightly higher or lower than the normal range, “nothing screamed infection”. So once they’d seen the blood test results were fine, they sent me home with instructions to take lots of painkillers and lots of fluids and to have lots of rest.

I drove back home, whereupon I was immediately sick. I took some painkillers, hauled myself back to bed and managed to sleep. I have to say it felt just like food poisoning. Perhaps it was food poisoning. Either way, a few hours later, I am feeling more or less fine, having just eaten a boiled egg and toast (both done to perfection by lovely husband), washed down with a glass of elderflower and apple juice, my new Friday night tipple.

A series of firsts

I’ve experienced a plethora of firsts over the past few weeks. Here’s a little selection.

Nuclear medicine loo

For use by patients having bone scans, for example, which involve a small amount of radioactive material being injected into one’s vein. The separate loo is to help prevent radioactive contamination from nuclear medicine patients using hospital toilet facilities. And yes, I did use it the day I had my bone scan.

A constant supply of peeled carrots

So that I reach for something healthy rather than for biscuits or chocolate when I feel like a snack.

Steroids for breakfast

I knew I’d been taking dexamethasone to help prevent post-chemo nausea but I really didn’t think of it as having “steroids for breakfast”. It wasn’t until the oncologist warned me a couple of days ago that “Fatigue might be a little worse tomorrow as you will have no steroids for breakfast” that it hit home. I guess I’m stuffed if they start random drug testing at the tennis club. Thankfully, the fatigue didn’t get any worse and is still at bay.

Wigs

A story for another day, but suffice to say yesterday’s hot date with my husband to the wig shop was a big success. A wig was duly purchased. It’s still in its box, but we’re making good use of the wig stand.

Appointments, appointments, appointments

Breast cancer-related appointments between now and mid-September:

Monday 24th August – appointment to look at wigs at the London branch of Trendco, “one of the UK’s largest alternative hair suppliers”. There’s no guarantee against hair loss with scalp cooling and, as they say, forewarned is forearmed.

Friday 28th August – blood test at hospital to check white blood cell levels.

Tuesday 1st September am – pre 2nd chemo cycle review with oncologist & pre 2nd chemo cycle blood tests.

Tuesday 1st September pm – Look Good, Feel Better workshop, a two-hour skincare and make-up session “to help women and teenagers combat the visible side-effects of cancer treatment at what can be a very difficult time in their lives.  We aim to help them literally look good and feel better”.  It seems my days of being the woman who has always worn as little make-up as she could get away with are finally over! I have to admit I am so grateful this charity exists as while I think I can cope with the head hair loss, I am struggling to imagine life eyebrowless and eyelashless.

Wednesday 2nd September – 2nd chemo session, assuming blood tests ok.

Wednesday 9th September – MRI scan to check progress after 2nd chemo session.

Monday 14th September am – pre 3rd chemo cycle review with oncologist to review MRI scan results.

Monday 14th September am – workshop on The Effectiveness of Mindfulness organised by the hospital. Can’t do any harm, I reckon.

Tuesday 15th September – workshop on Diet and Cancer organised by the hospital. Healthy eating is one thing but I just can’t bring myself to start juicing. It’s just not me, but I will listen very carefully regardless of what they say.

Wednesday 16th September – 3rd chemo session, on same regimen if MRI scan shows expected progress. Regimen change if not.

Husband and boys have gone camping in Sussex for the weekend and so I am writing this while enjoying a peaceful weekend at home. Posting now as I’m off to switch on the tv and watch Mo Farah hopefully win the 10,000m race at the World Championships in Beijing. Fingers crossed. Go, Mo! (Him and me both, I guess.)

Waiting for the storm

So far, so good on the side effects front. Slight headache, but that’s all.

I was told to expect nausea and fatigue, so I’ve spent most of the day waiting to feel sick and tired.

Breakfast today

For the moment at least, the pre-chemo anti-nausea treatment and the three different lots of anti-nausea tablets I’ve taken throughout the day and will be taking for the next couple of days seem to be doing their job.

I still run when I go up the stairs.That’s the habit of a lifetime, so the day I’m unable to do that is the day I know I’m suffering from fatigue. That will come, although to what degree I obviously won’t know ’til I get there.

There are all number of other possible side effects. If they happen, they happen. Just because you don’t get them at the start doesn’t mean you won’t get them as treatment progresses. That’s because the side effects of the chemo are cumulative, ie they increase with each dose, although not always. So it’s like knowing there’s a storm on the horizon but not knowing how bad it’s going to be… or whether you’ll be lucky and miss the worst of it.

I was back at the hospital today for an injection of Lonquex, a product that helps boost your white blood cells post-chemo and so helps ward off infection. In official speak, “Lonquex is a medicine that contains the active substance lipegfilgrastim. It is used to reduce the duration of neutropenia (low levels of neutrophils, a type of white blood cell) and the occurrence of febrile neutropenia (neutropenia with fever) in adult cancer patients receiving cytotoxic chemotherapy.”

This medicine has to be taken 24 hours after each chemo session. One of the nurses performed the injection today and showed me how to do it so I can do it at home from now on. According to the official product information: “Self-administration of Lonquex should only be performed by patients who are well motivated, adequately trained and have access to expert advice.” I guess that includes me then. What a learning experience this whole thing is turning out to be.

Today was GCSE results day for older son. That went well. A good note on which to end.

You couldn’t make it up

You couldn’t make it up. I walked into the clinic this morning for my first chemo session to see the front page of today’s Daily Mail glaring up at me accusingly from the coffee table in the waiting area. “1 drink a day raises breast cancer risk”. In huge capital letters and “1 drink” underlined for good measure. You gotta laugh. I didn’t bother reading the article as it’s kind of irrelevant now.

The session went fine. I opted for “scalp cooling” in the end in a probably ultimately futile effort to reduce hair loss. Often it doesn’t work. It’s cold, but bearable. The chemo session itself takes a couple of hours, but I need to have the cap on for half an hour beforehand and two-and-a-half hours afterwards.  So that’s a long time to be sitting with what is basically an ice pack on your head. You can be unhooked to go to the loo. The session was otherwise pleasant enough: reading,  emailing, dozing, thinking, having lunch, chatting with the nurses, watching cancer patients at various stages of their chemo treatment coming and going.

One thing you will NOT see on this blog is a photo of me wearing the so-called “cool cap”. While it may be cool – indeed frozen – in temperature, it is the antithesis of cool in a fashion sense. Believe me, it is not a good look – unless perhaps you’re a not-particularly-fussy-about-the-way-you-look sky diver.

I aim to spend the rest of the day resting, go to bed early, hopefully get a good night’s sleep… and then await the inevitable onslaught of fatigue and nausea.

Unto the breach, “largely healthy”

Husband takes one look at my new bed-head look this morning after yesterday’s haircut and says in fake (I think) horror, “Oh my god, we’ve got a whole new chapter in ‘My hair’s a mess today’ opening up, haven’t we?”.

So the day of my first chemo session is finally here. I’ve been reading through the letter about my diagnosis and treatment plan that the oncologist has written to the surgeon. I am reassured to find that, on the basis of the answers I gave to the oncologist during our first meeting, she considers this “busy, 52 year old editor” to be “largely healthy”.

However, it appears I may have been economical with the truth during some of the questioning. Did I really say I had only gained a couple of kilos over the past few years? Who was I trying to kid? More like three or four… ok, maybe even five or six. (However, worry is great for weight loss – I’ve lost three kilos in two weeks!)

And, pre-diagnosis, did I really drink 3-4 units of alcohol most evenings? That really does not look good written down in black and white. In my defence, I really don’t think I drank that much, at least not most nights.

Moving swiftly on, playing tennis twice a week and the fact that I cycle is classed as “exercising well”. That’s good.

It’s also nice to read that it will be the oncologist’s “pleasure to guide Ms Kenny through her chemotherapy”. Finally, the oncologist hopes I won’t be “greatly troubled by toxicity”. As I prepare my “largely healthy” self for what’s to come later this morning, I can tell you she’s not the only one…

Long hair – vastly overrated?

If you’ve got long hair, they advise you to get it cut short. They say that way it’s less upsetting when it starts to fall out.

If I could ignore why I had to get it cut, I’d love it. That said, I’ll enjoy the new look while it lasts!

Before 1

Before 2

After

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)

Stopping the downward spiral

I was planning to start this post by saying that once you’ve got a breast cancer diagnosis, it’s at the back of your mind all the time. But as I wrote it, I realised that wasn’t true. It’s actually at the very front of your mind most of the time. You think of little else. Something will distract for a while and then, wham, it’s right back again.

The daftest things cross your mind. Take my ski boots. Last winter, after renting skis and ski boots twice every season for more than ten years, I decided to buy my own boots. Now I’m annoyed I won’t be using them this coming season (it’s likely I’ll have the mastectomy and full lymph removal in January) and I can’t help thinking I was somehow tempting fate by buying them. I go skiing with some girlfriends and we book our flights eight, nine or even ten months in advance. How presumptuous, I now think, ignoring the fact we’ve done the same thing for the past nine years and it’s been fine.

And in the changing room at work the other day after I’d cycled in? There was another woman getting changed too and, as I whipped off my sports bra, I found myself wondering whether I’d still do that post-surgery or whether I’d feel I needed to go into a cubicle to get changed. And then that gets you thinking about how long it’ll be before you’ll be able to cycle into work again after surgery. And then about how long will it be before you’ll be able to do another 63-mile bike ride, like the one you did with a friend the day before the appointment where you asked your GP to check your breast.

I know how destructive worrying about the future can be, but by now you’re in a downward spiral, thinking the worst. You start wondering whether, after surgery, you’ll ever be able to do a long bike ride or play competitive tennis again, or indeed play tennis at all. The same with skiing. And then you force yourself to snap out of it because you know that what matters for now is treating and getting rid of the cancer, not what you will or will not be able to do physically once you’ve done that.

The only thing that really matters is getting better.

Naming your blog

I really do wish I hadn’t named this blog I am the one in eight.

At the time I thought it sounded clever. Now I just think it sounds self-pitying and, while I’m as good at that as the next person, it’s really not me.

Now I wish I’d called it something much more positive like Not a misery memoir or, catching the zeitgeist and much more me, This girl can.