Chemotherapy

Finally the Endopredict test result came back and it confirmed that there is definite benefit to me having chemotherapy. Chemotherapy is a pretty brutal and indiscriminate treatment which brings with it significant risks, but it also brings the very real chance that it will stop the cancer coming back. This more detailed test of my cancer and how it is likely to behave showed that the chances of the chemotherapy causing me long term harm are far lower than the cancer doing the same thing.

Last Monday I saw my NHS Oncologist, and I got myself booked in for chemo the next day. She talked me through all the potential side effects of FEC-T (it is a very, very long list), the drugs I’d be taking to counter these effects and I signed the consent form. Then off to have a blood test and ECG. My blood will be taken before every cycle so they can keep a check on things like my liver function. And the ECG was to check my heart is working healthily. This is because the E in FEC-T stands for epirubicin, and one of its (rare) side effects is long term damage to the heart. On a lighter note, it gives you bright red wee.

It was my first ever ECG, and the technician’s room was tiny, more like a broom cupboard with an examination bed. There was a small radio on the shelf playing classical music. I wasn’t sure if the music was for patient benefit or the technician, but anyway…. Over the airwaves came a very tinny version of the music from The Onedin Line and I was immediately transported back to the Sunday teatimes of my childhood.

The first round

On Tuesday, my mum and I headed off to the hospital for my first round of chemo. There will be six rounds in total, each three weeks apart, so this was the first step in an eighteen week marathon. I had previously visited the chemotherapy suite and met the team of nurses, so felt confident about what to expect.

Having the chemotherapy itself is pretty straightforward. After sorting out the cold cap, the nurse simply put a cannula in my left hand and then over the course of an hour I was administered saline, steroids, fluorouracil, epirubicin, cyclophosphamide and more saline. I’d had plenty of fluids in the morning so my veins were plump and well hydrated. The nurses are super vigilant, as in rare cases patients can have an allergic reaction, or the drugs can leak and burn the skin. At the same time I took my first anti nausea tablet, Emend. Fortunately, it all went well.

I also saw some familiar faces in the chemo suite, my breast care nurse dropped in, and the atmosphere was relaxed and chatty. It could almost have been a manicure shop.

Cold cap

I have chosen to try the cold cap which lengthens my time in the suite. Total hair loss is guaranteed with my cocktail of drugs (including eyebrows and eyelashes – not looking forward to that. But hey, at least there will be no waxing and shaving of all the other bits for a few months) but the cold cap offers a 50% chance of partially retaining head hair. I love my hair and I know losing it will be one of the toughest parts of this cancer story for me. Cancer treatment really is a bugger, when you’re at your lowest ebb physically and emotionally it then robs you of your identity.

The cold cap is a silicone cap which fills with fluid at below freezing. I had heard horror stories about the pain and that some patients can not tolerate it. You have to wear it for near on three hours, and I was prepared for lots of deep breathing and visualisation to get me through the first twenty minutes, after which time apparently it is tolerable.  I’d taken paracetemol to help with the pain, and the nurse wrapped me in blankets. Well, either the machine was broken or I have a very high pain threshold. It was uncomfortable but ok. But then, I am the woman who has chosen in the past to have ice baths after training runs.

The cap has a tight, fetching chin strap which made eating my chunky sandwich quite a challenge. Must take a thinner lunch next time.

Now I just wait to see if my hair starts to fall out. If it does, it will be next week. In the meantime, I was advised to wash my hair just once a week. Yuk. I’ve been wearing headscarves to cover my dirty locks. I washed it today and I felt like a new woman.

Drugs

To counteract the side effects, I was given a bag of drugs. Five different drugs. One of which was injections. Yes, injections. It’s a lot of fun injecting yourself in the tummy when you’re nauseous and your brain is mushy peas. But I’ve concluded that belly fat has no nerves as the injections don’t hurt at all.

I bought the dental kit on the right from a great website, Live Better With Cancer. Touch wood, no ulcers yet, but I’m ready if they come.

Where did I go?

All my online research tells me that most cancer patients are terrified of chemotherapy. I was no different. Jennifer Saunders described chemo side effects as the worst hangover ever. Decca Aitkenhead described it as being dead without having actually died.  But, I also found plenty of stories from cancer patients who found chemotherapy tough, but doable (those stories don’t make for good headlines I guess).

My first week was undoubtedly tough but I think I’ve been relatively lucky. I slept for five days and nights. I could not stay awake for more than a couple of hours. I have never known such low energy. I couldn’t concentrate and, at my lowest, I couldn’t even complete a sudoku puzzle. I put on 5lbs. I lost 5lbs. The nausea comes in waves, but not bad enough to staunch my healthy appetite. My old friend constipation made an unwelcome return. Acid reflux is today’s treat. But I was well enough to look after myself and the cat. And she’s loving this, there’s a permanent lap to sleep on!

Most distressing of all is that I have completely gone off tea. Don’t even like herbal teas. Pineapple juice and sparkling water are my new favourite drinks.

The weirdest side effect is you feel like you’ve lost yourself. Your brain, your emotions and your body are completely alien to you. But today I’m back – wobbly, weak and weird, but I feel like Alison again.

The drugs can have a cumulative effect, so I may be more impacted by side effects as the treatments progress. Fingers crossed that’s not the case.

Box set failure

This is the cat and me competing to see who can stay awake longest. I lost.

I have so many box sets to watch, and I’m failing at this simple task in my soporific state. But I’ve just started Better Call Saul, which is rather good (although I suspect most of the plot twists are passing by my addled brain).

In preparation for being at home, I bought some yoga dvd’s so I can practise yoga at home. I tried a half hour gentle, restorative session yesterday. Had to have a lie down to recover afterwards!

Thank you, thank you, thank you

Yet again I need to thank all you lovely people for your texts, mails and messages of support, for calling me, for visiting, for taking me for walks, for remembering me. Even the simplest of texts can lift my spirits enormously when I’m in the dark, surreal, unkind place that is cancer treatment.

Please excuse any typos, or if this is an especially rambling post. Brain definitely not operating at 100% x

Project Lumpy, version #527; Limbo

I had this really great plan. Visit Harley Street on Tuesday where I’d learn results of Endopredict test (the “do I really, really need chemotherapy?” test), see oncologist on Wednesday to discuss results (in my head I’m fully prepared to have chemotherapy), sign consent forms, have bloods taken. Then on Thursday buy fresh food for a week, do housework, change bedding, get my chemo kits ready. Friday (i.e. right now!) have first chemotherapy session. I had an army of friends and family lined up to go to hospital with me, visit me, feed me, and be generally positive and amazing around me as I found out just how I’d react to chemotherapy. Like the good Girl Guide I once was, “Be Prepared”.

Well, scrap all of that. The bloody test result is late coming back. Oh, how I laughed.

So, the new plan is to do all of this instead next week, with chemo starting, if needed, one day next week. I’m checking my phone for news from Harley Street like I’m waiting to see if a hot date is going to text me back.

The waiting, the ambiguity, the not knowing, the limbo. The hardest part of this cancer trip. It takes such emotional energy to get to a good place and stay in a good place. These curveballs can be exhausting and demoralising.

Some days just staying in bed seems like a good idea. But when you have a cat that jumps on your head or full bladder at 5am most days, you’re compelled to get up. I also remember the words from a speech by an Admiral, in which he talks about the importance of making your bed everyday. This clip is less than two minutes, but I find it inspiring. It’s not just about making your bed, it’s the belief that the effort to do little things can make your world a better a place.

My oncologist was great when we talked about the delayed test results. I really like her, she is firm and straightforward with me, and I shared all my concerns with her, such as “I have this vision of all these little cancer cells in my body having a party because we’re not blasting them!”. She reminded me why I had this test, and that many patients are currently over treated with chemotherapy because such tests are not available to all. And most reassuring of all, she’s not concerned by the delay, so long as we start chemotherapy next week if it is needed.

She also reminded me that as my cancer is so highly oestrogen receptive, taking Tamoxifen will be one of the most important parts of my treatment. Project Lumpy involves surgery, radiotherapy, Tamoxifen and maybe chemotherapy. Plus some lifestyle tweaks for me – that’ll be a later blog post.

Take a breathe Alison, this is all under control.

Mind and Body

I completed the Living Well With Cancer course, and also went on a one day Words As Therapy course. The latter was provided by Macmillan – another amazing freebie. I have now met dozens of people with cancer and it’s been wonderful, but also tough. This pesky disease is isolating, but when you meet other cancer patients there is a real sense of being in the same gang. Just saying you have cancer makes you immediately vulnerable, and other cancer patients get that and it’s ok. I also feel strangely guilty when I meet other cancer patients who have a more challenging diagnosis than mine.

Then another amazing freebie. A yoga class for people with cancer was recommended to me. Off I go, in my Sweaty Betty gym kit, yoga mat under arm. It’s in a church hall, no signs on the doors, so I ask the group of elderly people sat in one of the rooms where the yoga is. Ah, this is it, welcome! Oh. My. Goodness. And there began my first ever seated yoga class. I felt like I’d been dropped in to an episode of The Real Marigold Hotel.

It was actually a very gentle, meditative class and the teacher was super. Just not quite what I was looking for.

Cycling is my favourite way to keep fit and I’ve been doing nowhere near my usual mileage and feeling a bit down about it. So last weekend I though, sod it, I need the Surrey Hills and a bloody good hill climb! The North Downs are stunningly beautiful, with tough climbs and fast descents. It was amazing. I also love the camaraderie on the sportives I do. I stopped to eat a flapjack at the top of one hill, and a chap cycled past me saying “thank God you stopped, I’ve been trying to catch you for the last 20 minutes!”

And I got a silver time award – I usually get bronze.

The photo below is last year’s haul of medals. If I have chemo my cycling will be limited, but I’m determined to get some more medals this year.

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In preparation for chemotherapy I have also filled my freezer with healthy, homemade food. I spent two days cooking and can now hardly close the freezer door. Just hope I like that soup, there are eight portions of it…..

The big C after the big C

This week in Project Lumpy has been decidedly holistic. A bit of medical, nasty-pesky-cancer-cell stuff, but lots more about the power of positivity and caring for mind and body.

Living Well With Cancer

I attended the first day of a two day course run by a charity,  Penny Brohn, entitled Living Well With Cancer. The approach taken by this great charity; “Over the last 30 years, research has confirmed scientifically…that our bodies, minds and spirits are all connected and have an impact on each other and our physical health”. Right up my street.

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The course is held in the education rooms at the hospital. On entering the room, it was just like being on a corporate training course: semi circle of chairs, flip chart with a handwritten”Welcome”, Powerpoint projected on wall, facilitators welcoming us with encouraging smiles, then a discussion of our group agreements (no mobiles, be punctual, listen and respond with respect). So far, so familiar. But this was the first course I’ve been on with a table in the middle of the room with a flower arrangement and a flickering candle. Of course, meditation is on the agenda. And then the introductions. I wonder “surely we’re not expected to say, Hello my name is Alison and I have breast cancer”?! Fortunately not. We are not our cancer.

A wonderful day. I learned some great new information and confirmed much of what I knew.

Interestingly, much of the advice is about limiting inflammation in the body – apparently cancer loves a bit of inflammation, ripe conditions for its growth. What can cause inflammation? Being overweight, smoking, pollution, stress (hence the meditative candle), lack of exercise (keeping fit significantly reduces risk of recurrence), alcohol and some foods. And on the diet front, yes, we really do need to eat 10 veg and fruit a day. Preferably organic. That’s my Waitrose bill just gone up.

My understanding of the human body is limited to O-level Biology, so I was fascinated to learn about our natural killer cells, a type of white blood cell pumping around our bodies. These are the most amazing little warriors. This video shows them in action actually killing cancer cells. Now, I hate violent films, but I could watch this one on repeat. Just how awesome are our bodies, that could be happening in all of us right now.

In the group were other cancer patients, most of the women had had breast cancer too. It was heartening to meet them, to hear their stories, share our experiences. Cancer can be very isolating but it also opens doors to new connections.

Cherry Lodge

The Macmillan team had suggested I go to Cherry Lodge in Barnet, another charity supporting cancer patients. What a fabulous centre; they offer a range of complementary therapies, a singing group, yoga classes, counselling, drop in sessions and acupuncture before chemotherapy. All for free.

I spent a very informative afternoon there and will book various therapy courses once I know my treatment dates.

It’s interesting that at many of my Project Lumpy meetings I am often the youngest by some margin. Cancer tends to be more prevalent as we age. I heard of a group, Shine, for younger cancer patients, and I have my first meeting with them this week.

Harley Street

This cancer is helping my social climbing. I met an Oncologist in Harley Street. After the Oncotype DX discussion with my professor, he recommended meeting Professor Ellis to get an  EndoPredict test. It’s very similar, but more appropriate for my cancer. It’s not available on the NHS, hence the Harley Street rendezvous.  And my contact at my health insurance company wove some administrative magic to ensure the costs are all covered.

I had an encouraging discussion in the plush carpeted, palatial office with the rather charming professor. He was very positive about my prognosis. I agreed, “I have no plans for this cancer to kill me”. He knows my NHS team and so I feel reassured about continuity of care. And he said I would get exactly the same chemotherapy on the NHS as I would privately.

The EndoPredict test will show the likelihood of the cancer returning. The lower the risk, the less benefit there is to chemotherapy. Simples. So, a bit of my tumour is being tested right now. I have this vision of my tumour sitting in a fridge and someone in a white coat and hairnet taking it out and slicing a bit off with one of those delicatessen meat slicers, wrapping the slice in greaseproof paper and sending it off to a laboratory.

Professor was clear that he thinks I will need chemotherapy, but it’s worth checking.

Then the proof of my social climbing – an air kiss at the end of the appointment. You don’t get that on the NHS.

Chemotherapy: The next big C

I’m prepared and ready for chemo, much as I’d rather not go through it. I suspect this time next week I will have started my treatment – more about that in a later post.

This week I met a hairdresser who offers free hair cuts and advice on caring for your scalp and hair to anyone going through chemotherapy. I’ve decided I’ll have a funky pixie cut (I mean, how great does Annie Lennox look?) to protect my hair and also lessen the trauma of my hair falling out.  She also told me that some women donate their hair, if it’s long enough, to Little Princess Trust, who make natural wigs for children with hair loss.  Since being diagnosed, my eyes have been opened to the incredible amounts of generosity, humanity and support that is out there. When the news headlines cause me despair, I remember how much good there is in the world. I’m seeing and feeling that goodness everyday.

In preparation for my chemotherapy I’ve been given two very thoughtful, personalised chemotherapy survival kits. The one on my left is from my parents, but didn’t include the cat – she just can’t resist a photo opportunity.