August update

3 September 2010

Black and white

A recent message from a business acquaintance included the sentence “it is good to hear that your treatment is progressing and hopefully you will soon be in remission.” A couple of days ago my mother – who is generously helping us – used the words “given what are you are going through”.

To be honest, I no longer remember what I thought about cancer before my own experience with it this year. Maybe people with no experience of it think that the only options are Never Had Cancer vs Will Eventually Die of Cancer.

I forgot that my mother doesn’t have access to this journal. I wonder what it is that people imagine that I Am Going Through. Maybe they imagine me pacing the rooms in tears, worrying about dying.

I am happy to report that, except for the annoyance and interruptions of treatments and their side-effects, I am fine. I don’t think I have cancer; it might sound like denial, but even my surgeon said it after hearing the results of clear lymph nodes after my lumpectomy.

Other than being at a higher risk of developing cancer than average, I don’t think of myself as being ill or anything being wrong with me.

Whereas 2008 was the year I lost loads of weight, 2010 will become the year that I had a small brush with cancer.

August

For the first time since January this year, August was a month without any hospital visits.

However, I still had treatments.

I had my last FEC chemotherapy on 28 July. I took the extra anti-sickness pills – Domperidone – regularly for a week and the nausea was tolerable. I don’t know why I stopped after a week as the nausea lasted three more days.

My remaining chemotherapy side-effects are:

• inflamed and sore vein in arm
• lines in nails

In the fourth week after chemotherapy – the last week of August – I started being nauseous again.

I wondered if it was because that would have been when I was due to feel sick if I’d had more chemo!

Hormones

I started taking Tamoxifen at the end of week four. It is hormone therapy to remove oestrogen from my body since the cancer I had grew faster in the presence of oestrogen.

I started to feel a different kind of nausea after eating (less the travel sickness kind and more the eaten-something-bad kind) and fatigue again. I’ll be taking Tamoxifen for five years. There are short-term and long-term side-effects.

At the start of the same week, I started having hot flushes during the day. I’d been having them at night for the last two years and already knew that I was pre-menopausal. It’s just ramped up a bit.

Daytime hot flushes are very weird.

It’s like feeling really hot from a fever but without feeling ill. It’s only when I can feel the sweat cooling on my forehead that I realise what’s happening.

I’ve taken to wearing layers which I can remove quickly. I have a hand fan by my seat in the lounge. I won’t be able to take HRT because it adds back oestrogen.

On losing my hair

I’m actually glad that I didn’t go for the cold cap to try to prevent hair loss because losing my hair has been a bit of an adventure: friends have made or bought hats for me and I’ve had fun with my blue wig.

It was great to go bare-headed indoors when it was really hot.

The rest of my hair has also changed. There’s much less of it. What’s left is finer and fairer. My eyelashes are short and my eyebrows are not as bushy.

Ever since my teens, I’ve battled with excess hair and so this respite has been welcome. In fact, at the time I found the lump in my breast, I was taking a high-oestrogen version of the Pill to make the hair on my face less dark and less thick.

I wish I could choose which hair I could get back and which to stay away! I miss my long eyelashes and head hair.

And, in the end, whether I wore a scarf, hat or wig, I always got looks, just different kinds of looks.

I’ll be keeping my blue wig and gorgeous hats to wear again.

Weighty issues

I gained 17lbs (7.7kg) this year. Although I have been putting on weight since I stopped calorie counting last year, I only gained 7lbs last year.

My Weight Chart:

Most of the clothes I bought last year after losing weight are too small for me now. I bought two pairs of larger trousers and blouses from eBay. It was ghastly realising just how big I was in 270 degrees of mirrors in the changing rooms on Friday.

Here are some key dates, if you’d like to try to match them to the graph:

• 26-ish Jan – I found a lump
• 10 Feb – screenings (“lump looks suspicious”)
• 17 Feb – cancer diagnosis
• 8 Mar – surgery
• 24 Mar – results (knowingly cancer-free)
• 30 Mar – Oncologist about survival & chemotherapy
• 14 Apr – chemotherapy #1
• 4 May – chemotherapy #2
• 26 May – chemotherapy #3
• 16 Jun – chemotherapy #4
• 6 July – chemotherapy #5
• 26 Jul – my birthday
• 28 Jul – chemotherapy #6

As usual, I feel as if someone else has done this to me, whereas I’m really responsible.

I remember blogging here about a couple of binges before big events, such as the before the screening results and first chemotherapy.

In the first week after each chemotherapy, my appetite was completely messed up. I never felt hungry. Instead I felt sick when it was time to eat. I didn’t feel like eating at all and so I bought treats and yummies such as crisps (potato chips) and bread rolls.

Now that I am feeling a bit queasy again for different reasons, it’s an effort not to resort to the previous trick of a slice of bread to get rid of it. I have also got into bad habits and have returned to old habits of “I deserve it”, “Just one more”, “I’ll start my diet tomorrow”.

I’ve managed to halt the weight gain in the last week. I know that I’ll only be able to lose a significant amount of weight if I start food diarying again. But I cannot bear the thought of weighing everything I eat to work out and then document the calories.

It occurred to me to refer back to my 2008 online food diary and replay the food I ate in the weeks where I lost weight. We’ll see.

Radiotherapy

I have my Radiotherapy Planning Meeting tomorrow at Reading Hospital.

I will be lined up to the machine and will probably get my lining-up tattoos.

Radiotherapy is a high dose of x-rays. The radiographers have to spend time lining me up with the machine and marking my position at the start so that the rays reach all of the required areas whilst minimising exposure to vulnerable areas such as my heart and lungs.

Because I am big-chested, I was advised to go to the John Lewis in Reading to get a fitted bra to wear during radiotherapy and for which I would be refunded. I was told that the radiographers might cut bits away of the bra.

We went to the shop on Friday and I had my first ever bra fitting.

It turns out that I had been buying bras with too large (+5″) a band size, which explains why my bras always rode up at the back. Because I’ve put on a load of weight, I also got an everyday cotton bra to wear for the next month or so. I went hatless in the changing room as it got quite warm.

The lingerie staff member was so helpful and patient that I said to Frank as we left that I wished I could tip her. When I had thanked her, she said “that’s what we’re here for”. I realised that all the other people I’d given jewellery thank-you’s to could have said the same thing, that they were just doing their job. Since getting help buying two new bras is part of my treatment experience, I might drop some earrings with a card over for them tomorrow.

I’ll be blogging next about radiotherapy.

Chemotherapy & gifts « Previous

Chemotherapy & gifts

28 July 2010

It started with a birthday

It was my birthday on Monday. I went for my blood test in the morning, had tea and cake with good friends who were neighbours where I used to live, and made jewellery in the afternoon.

We moved here, just a couple of miles from where we rented before, so that I could stay nearby the new friends I made. (I’d found the lump two days before we moved.)

Once or twice a month we host an afternoon of tea, cakes and chat. Some of us use the opportunity to try new recipes. This weeks cake club coincided with my birthday – I tried two milk-free cakes – an orange chiffon cake and a génoise.

I already had a 1950s coffee set (pot, cups, milk jug and sugar bowl) from my late mother-in-law’s house. I also had exquisite vintage hand-embroidered linen napkins that I’d bought a couple of years ago but hadn’t used yet. Last week I looked for vintage cake stands, matching side plates, a cake slice and cake forks. The cake slice arrived late – today – and I didn’t manage to find vintage forks in time.

Present highlights

As my birthday was two days before my last chemotherapy I asked the cake club ladies and my Facebook contacts to give me flowers to cheer me up after chemo and/or fruit and veg to use in my food dehydrator.

Here are some of the birthday presents I received. I love that Yvonne remembered I’d mentioned I’d never had a teddy bear growing up. My new teddy now sits on my pillow during the day.

Teddy from Yvonne

Oregano from Rosie

Basil from Aenne

Roses from Matthew

Thank you for all my presents!

Chemotherapy #6

The appointment of my last chemotherapy started – frustratingly boringly – with an 80-minute wait.

Even though we had a review with the oncologist yesterday, we saw another oncologist first. I’d made a note of the last set of side-effects and was told to prod my breast care nurse if I hadn’t heard about a radiotherapy appointment by the middle of September.

I’d told yesterday’s doctor that I had been taking the buccal anti-sickness pills on demand and he recommended I switch back to Domperidone and take them regularly every day for the first week; he explained that this would ensure a continuous level of the medication in my blood stream. I’d been given five weeks worth a couple of months ago by today’s doctor but I hadn’t been taking them. I feel foolish that I could have maybe been able to eliminate my nausea all this time but it wasn’t until yesterday that it was explained properly. Ho hum.

I started feeling nauseous yesterday – I didn’t eat until 4pm – and, while in the waiting room this morning, I started to feel sick again, another morning when I didn’t want to eat. I mentioned it to my chemo nurse, Anita, and she said that they have a pill for it – to help people ‘chill out’ – if I’d mentioned it.

Thank-you gifts

To say thank you to the various people who have looked after me during my treatment, I have been giving people jewellery I make.

There are four different chemo nurses at the Eden Unit in Windsor Hospital and I have now had all of them tend to me for my chemo drugs. There are three present at one time, plus an assistant.

I made Anita and Lesley freshwater pearl necklaces in a design that has always been popular, but in new colour combinations. I wasn’t sure how the pink and yellowy-green combination would look but I think it’s the best of the jewellery I made.

About an hour into my session, when Anita, the unit sister, came to check my drips, I gave her the two boxes (as Lesley was out of the room) and thanked her. I said that she and Lesley could decide between them who would get which colour. When she opened the box, I swear it took her breath away. I was chuffed! I later saw Lesley opening the boxes and she looked pleased too.

I then called Asif over; he was the first nurse to give me chemo and when I took photos at #5.

I had made him and the other male nurse turquoise and silver cuff-links. I also made two pairs of hematite and silver cuff-links. I gave Asif a pair of each.

I had decided to make and give jewellery to everyone who happened to be having chemotherapy at the same time, so that everyone could feel special for a little while.

There are areas for five patients at any one time but, depending what time I arrive, one or two could be replaced by new people. I made enough for seven women and two men. There was only one man having chemotherapy (his first session), which is how Asif got the second pair of cuff-links.

Being constrained by my drip-stand, Frank went around the room, first to women I’d seen before, to ask them to choose their necklaces. Frank said that two people offered to pay for them!

There were two left and so I gave one to the pharmacist (who said I’d made her day!) and to Gillian, a nurse with a striking black bob hair-cut, who’d sat in on two meetings with the oncologist and who’d always seemed friendly. I had to leave the box, with a note for Gillian, with the receptionist.

I didn’t want to make this a sales pitch for my jewellery shop and so, rather than use my proper shop cards with my name and shop details, I hand-made cards with my name and photo of me in my blue wig on one side, and my regular photo and general web site address on the back.

It felt weird when it was time to stand up and leave the chemo unit. I said my goodbyes, thanked the staff again and left.

Okay, I need to take a nap now. Talk to ya later.

wordle

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Chapter 8: On radiotherapy

25 July 2010

In three days, I will have my last FEC chemotherapy. It’s my birthday tomorrow and I’ve asked for flowers to cheer me up during the period following chemo of nausea and glum. (The other request is for fruit and tomatoes to dry in my new food dehydrator).

The oncologist

Three weeks ago, I’d been given overlapping appointments – chemo and with the oncologist to hear about radiotherapy. After a bit of confusion that morning with calls, we went to the Parapet, the breast cancer diagnostic centre I went to originally, to see the oncologist.

We saw the same doctor we’d seen after my surgery. There was a lot of information which I tried to write down even though he said it’s all be in the booklet they’re give me. As usual, some things came up in discussion that wasn’t in the booklet and some things are in the booklet that weren’t mentioned in person.

I will start radiotherapy in Reading hospital in September. That leaves August treatment-free, except for the side-effects of my last chemo. I will have 18 sessions on consecutive weekdays. I knew from reading another blog that each session is 15 minutes of alignment and just 2 minutes of the radiotherapy, which is (like?) a high-energy x-ray.

First I will have a planning appointment so that the machine can be specifically aligned to my body and the area needed to minimise the exposure of my heart, lungs and bones to radiation. I will get three small tattoos on my breast (chest?) that will be used in the alignment process. I was told to get a fitted bra – which I will get refunded – as this will hold me in place but be cut by the radiotherapists and, I guess, what I will wear during the sessions.

I didn’t write it down but I think he also said that I will start hormone therapy about the same time (as my turmour was sensitive to oestrogen and progesterone).

Side-effects

There are short- and long-term side-effects to radiotherapy. I knew about the obvious sun-burn effect and possible blistering. I was advised to use a non-perfumed aqueous cream twice daily. I must avoid anything that will further irritate my skin on that side, such as deodorants or perfume, and I mustn’t shave my underarm. I should wear natural fibres and a soft bra to avoid chaffing. It all makes sense.

The long-term side-effects can include skin changes such as darkening, thickening or a shrinkage.

There are also some very serious long-term side-effects due to the heart, lungs, nerves and bone being within the radiotherapy zone – explained by the oncologist and in the booklet. They are rare (1% of patients) and there’s nothing I can do to prevent them. I shall therefore not blog about them or try to think about them.

Chemotherapy #5

The previous chemotherapy went okay. I took my camera so that Frank could take photos of the dressing procedure from start to finish. The hand dressing and implements seem very sophisticated. I have added the photos as a set on Flickr.

As usual, we spent most of the time either chatting with the nurses or the other ladies having chemo.

One lady was having her first chemo. After the pharmacist left her the big bag of medications, I gave her some advice about the extra anti-sickness pills. I’d switched from Domperidone (to take before eating) to Prochlorperazine which is a buccal type; you put it under your lip against your gum so that it slowly dissolves and does its stuff. It works within minutes but, as it dissolves, it tastes foul and so I chew some gum at the same time.

The lady in front of me had nice sandals which I commented on. She told me that she had inoperable cancer – against her chest wall – and had been having chemotherapy since October EVERY WEEK in order to shrink her tumours. I asked her whether she felt that her life was in limbo and she said she did. She seemed to be taking it in her stride. How awful.

Dealing with chemotherapy

The nausea and glum feelings lasted longer after my last chemotherapy – about 10 days – but neither was more severe.

I set an alarm the first few days to remind me to eat regularly to pre-empt hunger-mutated-as-nausea. I have cut out lactose completely but sometimes get slightly nauseous after eating – it might be sugar or butter, I’m not sure. Or perhaps it’s inevitable. It’s not bad enough for me to experiment to find out.

I get tired in the afternoon and evening and sometimes take naps if I feel I just can’t stay awake.

I have blood – fresh and dried – under my big toe nails. The oncologist and GP that I was advised to see were both bemused about it. Nail problems are usually a side-effect of the strong chemotherapy drug, Taxotere. I just have to keep an eye on the bleeding toe to make sure it heals quickly and doesn’t get infected.

My hair started growing back several weeks ago. It’s about a centimetre long, mostly white, very thin and soft. There are about a dozen long hairs remaining that have survived chemotherapy.

The loss of my hair turned out to be less of a deal than I expected, and I hadn’t expected to worry about it much anyway.

It’s been nice and cool in the hot weather and I have had lots of nice scarves and hats to wear when I go out. I donated my black wig to Cancer Research UK and the two black felted hats that Becky kindly made for me to The Parapet. I will keep and continue to wear the purple and green hats she made for me.

Plans for the week

It’s my birthday tomorrow. I will be hosting this month’s cake club with my friends who were my neighbours at my previous house in the next village. We take turns hosting a tea and cake afternoon. I will be baking two milk-free cakes I’ve not made before: a chiffon cake and a génoise.

I will also have my pre-chemo blood-test tomorrow, Monday, as my last chemotherapy is on Wednesday.

I will make jewellery to give to the four chemo suite nurses on Wednesday, and for the (up to) seven people who will have be having chemotherapy at the same time.

It’ll be the first time I’ll give thank-you gifts to medical staff in person. And it’s because there will be a fuss made over them that I wanted the onlookers also to get a surprise and receive little gifts too, hopefully to brighten their day.

I figure that I will have about 10 days of annoying chemo side-effects but this time knowing that it’ll be the last time I go through them. I have lots of things to do to distract me during those days.

After Wednesday I’ll post photos of the jewellery and, hopefully, of some of the people.

See you on the other side!

wordle

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