Goals

My fifth and penultimate chemotherapy session is tomorrow (hooray!). I have to take super high doses of steroids with this chemo, consequently this evening I am buzzing and wide awake. Not to mention melting in the heat of our June heatwave, and wishing to distract myself from the horrors in our beautiful capital of the past week. 

I thought I’d share how important I’m finding having goals to help me through treatment. Hopefully this won’t read as a management training guide….. 

Project Lumpy, one step at a time

My treatment has a number of phases

  • Diagnosis (welcome to your new world! Get with the cancer club quick, because we don’t have time to hang around)
  • Surgery (bye bye tumour! Hello scars and a new body, hopefully cancer free)
  • Chemotherapy (hair today, gone tomorrow! I’ve resisted that joke for weeks…. This is the phase where I lose myself, but find myself again. And again and again. Unfortunately it’s also one of the longest phases)
  • Radiotherapy (shorter, but could be tiring with its daily hospital visits)
  • Tamoxifen (the longest phase, being at least five years)
  • Then I’ll pop out the other end of active treatment and fashion my new reality. 

Phew, that’s a big project. 

From the start, this was unknown and overwhelming. I researched and educated myself so I could hope for the best and prepare for the worse. It was clear I needed to break it down in to manageable chunks (SMART objectives anyone?) For this I drew on my career as a manager, but also my running and cycling experiences.

Some of what running and cycling has taught me

When I set myself a goal of a 100 mile bike ride, there are months of training, then achieving the 100 mile ride itself. I feel like the last 15 years or so of my life have been, unwittingly, preparation for my cancer and its treatment. By this I mean: enjoying life (time with friends and family, travel, culture) especially to counteract the stresses of life, getting and staying fit, a relatively healthy diet, always being a healthy weight, yoga and mindfulness, living somewhere I love. Don’t misunderstand me, I’m no angel – I’ve loved drinking, spent too many hours at work over the years and been more stressed than is healthy. But on balance, I felt emotionally and physically resilient going in to treatment, the strongest I’ve been.

The treatment itself is the bike ride. When I’ve run half marathons or long bike rides I’ve learnt that breaking it down to goals gets me through. I didn’t invent this, it’s standard practise. And your brain usually gives up before your body does in such events, so finding the psychological plan is key. So, my first goal may be the feed station at mile 19 where I know there’ll be flapjacks, then the first killer hill at mile 28 with a thigh killing, lung bursting 18% incline (followed by, “yippee, I did it!” as I free wheel the descent at 38mph) and so on. 

Experience has also shown me that I get a dip mid way on all long rides and runs. I start to tire, pain or injuries start to niggle, and the end is not in sight yet.  This is what happens in my head:

“I can’t do this”

“What???”

“Shall I take a shorter route?”

“You trained for this, don’t let yourself down! You’ll only beat yourself up!”

“But I’m really not enjoying this, and there are still 60 miles to go, not even half way yet. Maybe I didn’t train enough”

“What, all those 5.30am starts on a Sunday morning, you’re going to waste that? Get over yourself” 

“But it hurts”

“You can do this. Keep going”

“But I’m tired”

“There are flapjacks 10 miles from here. Chewy, buttery flapjacks”

“Mmm, well I can do another 10 miles….”

And sometimes at this point another cyclist passes me (a very common occurrence, most road cyclists are men and I’m slow anyway, so it’s normal for me to be overtaken. I’ve seen hundreds of men’s bums in Lycra) and that cyclist will say something funny, we’ll share a joke or we moan about/praise the weather or curse the hills. And that fleeting human connection and shared experience can be a massive boost and push me on.

My treatment has been so similar to this – one phase at a time, then one chemotherapy at a time, set goals and rewards and remember there is a mid way dip, but I’ll get through it. The thick treacle after chemo #3 was a huge dip, and I could happily have given up at that point. But having goals and the support of family, friends and strangers are all invaluable. I may have more dips to come. I hope not. 

Aside from the treatment goals, I also set recent goals of Race For Life, The Pink Ribbon Tour and my talk at The Haven’s fundraiser.

The Haven Grand Garden Party Fundraiser

As I wrote about in a previous post, I was asked to talk for a few minutes about what this fabulous charity means for someone with breast cancer at their fundraiser last week. I felt so privileged to have this opportunity.

Chemo brain, fatigue and public speaking are not a good combination, so I was very apprehensive but equally determined to do the talk, and to do it well.

I’ve attached the video (hope my limited technical ability hasn’t scuppered the upload) so you can judge for yourself. I was shocked to see how my hair looks, and it is not the best public speaking I have ever done, but I’m pleased overall. A number of guests, including women touched by breast cancer, sought me out afterwards to thank me, which was so humbling. Most importantly, The Haven raised oodles of money. Brilliant.

And my mum, brother and some dear friends were with me, which made it a very special evening. 

Needless to say, I was completely wiped out for two days afterwards. But it was worth it. 

Now I need to set some more goals.  

 

Racing through chemo

Well the UK is a different place since I last wrote. Two appalling, vile, heart breaking terrorist attacks and a general election unlike any we have ever seen. Fear not, I won’t get all political. But it just reinforces for me how important it is that we live the best lives we can, and show humanity and kindness to ourselves and each other.

Shine Connect

Shine is a charity  providing support for young adults (20’s, 30’s, 40’s) with cancer. I went to their recent Connect conference, and it was a great day. Lots of useful information as well as the invaluable opportunity to meet others in the same situation. It’s humbling to hear from others and their cancer stories. For instance, one speaker had had 50 cycles of chemotherapy. There’s a unity in being with others living with cancer, and a real sense of hope and living as fully as we can.

One of the most interesting sessions was a talk from Professor Petticrew. Along with some of his colleagues, a few years ago he was able to demonstrate that the link between stress and cancer was a fabrication of the tobacco industry. It was known as early as 1940’s that smoking caused lung cancer. To divert attention from this, the tobacco industry funded a huge amount of research to link stress and cancer, hence moving the spotlight off smoking. Scandalous and fascinating. I wonder how much of this is going on right now with the food and cosmetic industries.

At the conference, I met a wonderful woman, Fiona Murphy, who has set up a service Sparkle Through Chemo. Fiona was diagnosed with cancer at 25, and saw how little provision of beauty treatments there was for those undergoing cancer treatment. So she did something about it, got herself fully qualified and now offers wonderful treatments and products. I have since had a fabulous manicure and pedicure as well as great advice to help me keep my nails through chemo.

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Chemotherapy #4

This was the first of three cycles of docetaxel, a step in to the unknown. What would this treacle be like?

I was given a high dosage of steroids to take the day before to counteract some of the side effects. Steroids make you quite wired and weird, so I had very little sleep the night before my chemotherapy. The infusion itself went well. My vein was usable, if sore. And the good news is I only have to wear the cold cap for two and a half hours with this drug, not three hours as on FEC. The combination of my tiredness and getting cold saw my heart rate drop to 42, so the chemo nurses wouldn’t let me leave until they could be sure I wouldn’t pass out.

I was quite exhausted that night, although the steroids kept me buzzing and awake. I woke up the next day, and to my surprise I felt ok. Tired, nauseous and foggy headed, but ok. The same the next day, I even went to a spin class. Then that evening I could feel the pain come on, starting at my feet and working up my legs. It’s quite bizarre to be lying in bed and to feel pain in your ankles and knees even though you have done nothing. I established a routine of alternating paracetemol and nurofen to the maximum daily dose, and it made the pain tolerable, although I was housebound for five days. And I had a lot of baths to ease the aches.

The other pain was in my pelvis. For five days, I inject myself in the tummy with a drug that boosts blood cell production to get my immune system back up and running. My nurse explained to me that this starts in the bone marrow in the pelvis, hence the pain. So, at least I knew the pain was my body doing its thing and recovering.

Unfortunately food and drink is all vile at this treacle cafe. Everything tastes yuck, especially all drinks. I’ve learnt that spicy food, with more flavour, is better, so I’m trying out lots of new Indian recipes. No bad thing as I could happily live on dahl.

And fatigue is ongoing, I guess this side effect really is cumulative. Not helped by broken sleep – I am now getting head sweats that wake me up, I think it may be the start of menopausal symptoms. It is as gross as it sounds.

It takes me a good couple of hours to get going in the morning. But I pace myself, and it’s manageable. I think it also adds to the chemo brain.

Overall, I have found docetaxel easier that FEC (so far). I had an EFT session, and this without doubt helped my anxiety levels. Those five days were dark, but not the molasses that I experienced after #3.

Chemo brain – quite alarming

It’s ironic that I have to remember to take oodles of drugs and yet my brain is uncharacteristically forgetful at the moment. So, I set alarms on my phone to remind me to take my drugs.

On my good week, I went to see Romeo and Juliet at The Globe (a very modern interpretation – the cast broke in to YMCA at one point). In the final act, as Juliet is riven with angst about taking the poison that may enable her to reunite with her true love, what should break the spell but the sound of an iPhone alarm? Shit, shit, shit! Frantic handbag fumbling to find the damn thing and turn it off. I did not know that the alarm works even though phone is turned to silent. Ooops, sorry fellow theatre goers.

Keeping fit, pushing on

When I was diagnosed, some of my first concerns were going bald, losing fitness and putting on weight. I’ve put a lot of focus on these areas, and what works really well for me is having goals. So, a few weeks ago I signed up to Race For Life and the Pink Ribbon Tour. Intentionally, I did not broadcast this as I knew chemo could take away my ability to do them, but internally I was determined I would. And I did.

For a number of years, I have completed Race For Life with one of my good friends who organises it for a group of us. I have always run it. And in all those years, it never occurred to me that one day it would be me who was the one with cancer.

What an amazing event. Hundreds of women in pink, some running the 5km in 20 minutes, others walking it in over an hour, but all doing it and raising funds and awareness. The sign on my back led to a number of women offering me their support, a reassuring arm squeeze, a hug, or just a smile of encouragement. I walked it, but I bloody well did it. The next day I felt like I’d run a half marathon and it took me a couple of days to recover, but it was worth it.

Then this Sunday I cycled the Pink Ribbon Tour a 25km route through central London, all in aid of Breast Cancer Care, which is the charity affiliated with this year’s Women’s Tour ( a pro cycling race – they go about twice as I fast as I do!). After signing up, I received an email from the organisers, with this request:

“102 professional women cyclists will be taking part and we want them all to carry a pink ribbon with a personal message of support from someone affected by breast cancer. The cyclists will then carry this ribbon with them as they cycle across the UK and wear the ribbons on their helmets in the final stage through London”

So, one of the pro cyclists had my message on a ribbon with her for the tour. How amazing is that?

As for my 25km (amateur) tour, I’m proud to stay I stayed in the lead group and finished in just under an hour. It was fantastic. Cycling the 8 miles home afterwards was not so great…..

There was lots of support from fellow cyclists, huge crowds and the sun shone on us. One cyclist gave me a high five when she learnt I was having chemo. Like the Race For Life, the cycle ride wiped me out and left my legs very sore, but it was worth it. Amazing memories, a sense of achievement, and a reminder of the huge support there is out there.

Life’s for living

After the Race For Life, I walked over the beautiful Albert Bridge to catch a bus. It occurred to me that being on London bridges now has a new sense of danger about it. But then having cancer is pretty dangerous too, and that isn’t stopping me.

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Hair still hanging in there

I’ve been really lucky so far with my hair. Spiteful as the cold cap is, it’s prevented me going bald. The rate of hair loss seems to have slowed down, so I am hoping it doesn’t get much worse. I’m still resisting the wig!

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I’ve lost half my eye lashes and eyebrows, as well as most other body hair. Thank goodness for eye make up, I can look like I have some facial features when I go out. Although mascara is a no-no as my eyes water so much more with fewer eyelashes. I know I can look rough, but Alice Cooper is never a good look. And I don’t recommend eating a curry in polite company when you’ve lost most of your nasal hair, you spend half the meal catching the nasal drips. Nice.

Saint Nora

The lovely St Nora has been generous yet again. Thank you, thank you.

The treacle thickens

There’s an irony to cancer treatment. When you are diagnosed with cancer your first thoughts are “is it terminal? how long do I have?”. Fortunately my cancer was caught early, but my diagnosis caused me to face my own mortality, and wonder how much time I will have on this glorious planet. Then, when I am going through the worst days of treatment, I find myself wishing my life away because I feel so wretched that I just want the days to be over until I feel vaguely like Alison again.

Thank goodness last week’s treacle is behind me. I’m now almost euphoric to be feeling good again, so I will savour these 12 days of feeling ok before diving in to a new flavour of treacle on 30th May. I want to hug trees and sing to the moon.

Chemotherapy #3 of 6

The chemo infusion itself went well. The nurse gave me a bowl of warm water to pump up my veins in my arm, and she did an excellent job of getting a vein first time (on the top of my wrist, ouch!). I took a flask, wore a roll neck wool jumper, used a headband under the cold cap, wrapped myself in a blanket, and visualised myself in the warmth of the Caribbean sea in St Lucia with the sun’s rays kissing my skin. This all stopped me getting chilled to my core.

St Lucia

One of my absolute most favourite places in the world, St Lucia

The side effects in the week after the infusion were just the same as after #2. Sadly I didn’t like any drinks at all this time as my mouth felt so weird. For someone who has always been an advocate of drinking plenty of water, it’s very strange to find I’m forcing myself to drink fluids.

The vein in my left arm is now a tender, raised, hard cord so I am massaging it in the hope of hastening its recovery. My hair is still falling out, my eyebrows and eyelashes are thinning, but I think I’ve been really lucky so far and haven’t needed to collect my wig yet. Never thought at the age of 47 I’d be perfecting my comb over technique.

But physically, I am bouncing back quickly. In the week before my last chemo infusion I was at spin classes, I even went for a run. Most days (after treacle week) I manage 10,000 steps. I’m sure all this is helping me respond well and it definitely lifts my mood. Haven’t yet found a way to alleviate chemo brain, don’t think there is much I can do about that one.

Black molasses

The tougher part of this third round was the mental and emotional impact. The treacle felt thicker and the depression darker. I had been advised that the effects of chemotherapy are cumulative. Whilst I’ve been really lucky on the physical side, the mental side has worsened. I was now in black molasses territory. Also, it was my brother’s birthday and it angers me that treatment is disrupting our usual celebrations. None of us want any of this.

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I’m starting to get frightened of my next three chemotherapy sessions as they change to a different drug with different side effects (muscle and joint pain, peeling skin on feet and hands, lose of finger and toe nails, skin discolouration, peripheral neuropathy).  It’ll be another type of treacle.

I do not want to live with anger, fear and anxiety so I’m taking action. I’m using the Headspace mindfulness app which has a 30 day cancer series, and this is definitely helping. It’s so important to be in the moment. Worrying about the days, weeks and months to come just robs me of today’s potential.

Two days ago, feeling the full effects of chemo brain and with a very low mood, I dragged myself to a workshop on emotional freedom technique (also called tapping) at The Haven. It had been recommended to me by a few friends. I was really impressed by its simplicity and the logic of its approach. But most of all it is something I can do to manage my emotional responses. The course leaders said they work with many cancer patients and consistently see it help with anxiety and chemotherapy side effects. I’ll let you know how I get on.

The Haven

The Haven is a fabulous charity offering emotional, physical and practical support to anyone affected by breast cancer across the UK. The charity was set up to fill the huge gap in treatment for breast cancer. The NHS does a marvellous job of trying to fix us physically, but does not address everything else in our lives that is impacted by cancer diagnosis and treatment.

A few weeks ago I attended an introductory day at The Haven’s Fulham centre, which is in a converted church, an oasis of calm and support. We were introduced to Chi Gong, had a meditation session, and were given the best explanation of a healthy diet I have ever heard.

This is followed up by an individual one to one where your needs are assessed and you are then offered ten sessions as appropriate. This may be from a range of support such as nutritional advice, counselling, aromatherapy or reflexology.

All of this is free.

So I was absolutely delighted when a friend put me in touch with the fundraising team at The Haven about an upcoming event at the Chelsea Physic Garden on 13th June. They have asked me to speak at the event, to share with the 500 or so attendees what The Haven means to someone like me, someone facing breast cancer. I am so honoured and so excited to be able to support this amazing charity (after I got over the instant panic of “will I be bald by then? what will I wear?”).

I have a number of tickets at the early bird price, so please do let me know if you’d like to buy one. I’d love to see you there and to have your support for this wonderful charity. There will be entertainment, the gardens are delightful and, most important of all, there’s champagne.

Chelsea Physic Garden

Chelsea Physic Garden

Saint Dora

Since my diagnosis, it has felt like Christmas so often as I have been showered with cards, gifts and love. Now, Christmas has Saint Nick, a fourth century Greek bishop, better known as Santa Claus and the giver of gifts. So I feel there is a need to create a new saint, who bestows gifts on those going through pesky cancer treatment. Dora means gift in Greek, so that’s our woman, Saint Dora.

Saint Dora made many trips in the last couple of weeks. Thank you x x

Saint Dora excelled herself with this gift, from one of my dearest friends who knew that I would welcome a really good belly laugh. It is the ultimate solution to a bad hair and bad face day.

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Treacle

Reasons to be cheerful

  1. Chemo session #2 complete – I’m a third of the way through chemotherapy
  2. I still have hair
  3. Cadbury is relaunching a chocolate bar and it looks scrummy.

It’s nearly two weeks since the last chemo, and the session itself went well. I wore my Wonder Woman boots and took my super powers with me. However, I had forgotten to pack the super power of staying warm.  The cold cap was so much colder without a thick mane of hair at the back of my neck and I got chilled to the bone. My head didn’t feel any colder this time (I think it just goes numb after 10 minutes at -5 degrees), but that evening at home I felt very cold, and my friend who visited me said I looked white as a sheet. So, for round #3 I will take some muslin for the nurse to put on the back of my neck under the cold cap, and a flask of tea so I can sip hot tea for the three hour endurance test.

My nurse had to use a different vein in my hand this time, as the previous one used wasn’t playing ball. I’m hoping I don’t run out of good veins and have to have a permanent port, called a picc line, put in my arm. As I’ve had surgery to my right armpit, my right arm can not be used for injections or IV, so my left arm is taking a bit of a beating. My vein is also sore all the way up my arm, which apparently is a common side effect. Makes sense really, as our veins aren’t really designed to have a litre of various toxic fluids pumped in to them.

Some other interesting new side effects to report. I don’t think I mentioned that one of the chemo drugs, epirubicin, gives you bright red wee straight away – it comes out the same colour as it goes in, just like the Tiny Tears dolls of my childhood. The chemo suite has a patient only toilet, and I imagine it’s because we are all urinating such toxic stuff. I was also advised to flush twice if I use a public loo whilst I’m peeing the red stuff. This is a selfie from said toilet after my chemo.

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And you know that thing where your wee smells after you’ve eaten asparagus? Well, chemo does that too except it’s quite a bit more pungent.

Finding the positive, no PMT to deal with at the moment as chemotherapy has stopped my periods. And in all likelihood they won’t come back, I have a medically induced menopause to look forward to. More on that another time.

This is the view from the Whittington after my chemo session:

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Despite all the above, I have bounced back more quickly this time than after chemo #1. I now realise that some of the side effects I had experienced first time were actually the start of shingles. Also, this time I had acupuncture the day before chemo, and I think this has helped. Fingers crossed for #3.

Hair

One of the ways I am managing this whole dastardly affair is by facing the tough stuff when I feel ready. For a week after the chemo I knew my hair was dirty and falling out but I did not have the emotional strength to deal with it, so I wore a buff or a beanie day and night and avoided looking at my hair in the mirror.  Then, day 7 after chemo I knew I had the strength to face reality. I washed my hair, and it fell out in clumps.  What would the mirror reveal? Hooray, I’m not bald! Definitely perfecting the comb over technique, but still presentable. I am enjoying my hair whilst it lasts.

 

“Sink”

Have you seen the film Get Out? I’d highly recommend it. On one level it’s a stonkingly good thriller story, and on another it has a lot to say about middle class racism. My reason for mentioning it is that there is a scene where the protagonist is hypnotised. He is instructed to “sink”. And we see him sinking in to his armchair and being sucked in to a black abyss. That’s what the days after chemo feel like. It is like being sucked physically, emotionally and mentally in to treacle. Everything feels much harder and slower. And nothing feels the same. But I know it will pass. Day 6 and 7 I can feel myself emerging from the treacle. So, now matter how thick the treacle gets, I tell myself tomorrow is another day and it will get better. And it does.

The Treacle Cafe

Your taste buds change completely in the days after chemo. This time I didn’t even like sparkling water. But I could tolerate Waitrose sugar free cloudy lemonade and was drinking cans of it a day. Not exactly healthy, but it’s more important to stay hydrated. And in terms of food, the menu at the Treacle Cafe (ie what I could face eating) is basically a kids’ menu:

  • Baked beans
  • Fish fingers
  • Jacket potato
  • Peas
  • Tuna sweetcorn
  • Lemonade
  • Vanilla ice cream

Put anything else green in front of me (salad, broccoli, spinach) whilst I’m in the Treacle Cafe and I will fold my arms and push out my bottom lip until it’s taken away. Definitely a kids’ cafe.

London Marathon

I have often gone along to watch the London Marathon and cheer on all the amazing runners. It is one of the most uplifting experiences, to witness the pursuit of human endeavour and the huge support from the crowds. When the depressing state of the world which the media portrays to us gets too much, go to a mass participation event, cheer from the sidelines, and revel in the good in humanity. All those thousands of runners who are running to make their lives better, and to improve the lives of others, it makes me feel good about the world again.

This year I watched from the treacle sofa, and found myself crying quite often (which I do anyway, I cry when I complete half marathons and cycle 100 mile sportives too). The commentators said that since its inauguration in 1981, nearly £1billion has been raised for charity. Astonishing. Over the years I have donated to charities, as well as raising funds through sponorship by running numerous half marathons, cycling sportives and even cycling London to Paris in 2010 (an amazing experience, I highly recommend it). This is something I have always done with huge pride, but always felt a little awkward asking for donations. Well, I won’t feel awkward in the future. Having cancer has meant that I have become reliant, not just on the NHS, but also charity.  Already I have received direct support and benefit from a number of charities: Macmillan, Penny Brohn, Cherry Lodge Cancer Care, The Haven and Breast Cancer Care. There are also a number of charities whose websites have been hugely helpful to me. And if it wasn’t for thousands of strangers willing to put themselves through the hell of training to run 26.2 miles, and thousands of strangers willing to donate their hard earned cash, then my experience of cancer treatment, and my prognosis, would be very different.

Thank You

I will keep saying thank you to all of you for your words of support, your company, your gifts, your good wishes, your time. It’s a long haul getting through treatment and beyond, and I’m forever grateful to have you there by my side.

Hair

Since my last post, the rate of hair loss has increased. Over three days last week a carrier bag of hair fell out. On Thursday morning, I woke up feeling emboldened and largely recovered from shingles. The scabs had dried over, so before I had a chance to procrastinate I called the hairdresser and booked in for a hair cut that lunchtime. Over the telephone I explained I was having chemotherapy and hence my need for a very short cut, and wanted to book with a hairdresser that would be ok with that. She booked me in on the first available appointment. 

Never have I felt so nervous going to a hair appointment, I had butterflies in my stomach and a lump in my throat. When I arrived, as always happens, one of the juniors came over to take my jacket, put a salon robe on me, and then take me to the basins to wash my hair. 

“Oh no, my hair’s falling out, I don’t want it washed, thank you.” The poor young woman looked at me a little startled and went off to get me a cup of tea instead. 

On Pinterest I’d created a board of great looking pixie cuts. I had high expectations from the examples set by Natalie Portman and Anne Hathaway. I showed the pictures to me hairdresser. 

“Oh, you mean really short!” 

I had wondered if I’d be ok to watch the cut. It was fine. The hairdresser had lots of experience with customers dealing with chemotherapy or alopecia, so we chatted about hair loss, amongst other things. I also asked her if she’d shave the whole lot off if that day came, and she said she’d be happy to.

My hair tumbled down my shoulders in great clumps and fell to the floor as a new look me was emerging. Goodness, what a huge pile of hair to be swept up. 

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I didn’t hate what emerged, she’d done a great cut, at least I don’t look like a boy, but I did think I look like me when I was about five years old (with a few added wrinkles).

On the way home I went in to a cafe to have lunch. Nobody fainted with shock on seeing me. Nobody gasped in horror. My new normal was not extraordinary. Phew.

I went home, and was utterly spent, useless for the rest of the day. It was almost as exhausting as hearing I have cancer. 

Over the coming days my hair has continued to shed and my scalp is sore as the hair follicles give up. My pillow is covered with hair in the morning and my handheld Dyson has never had so much use as I leave a trail of hair wherever I go. I joked with my niece and nephew about not standing in the wind in case it blew my hair away.

Thank you to everyone who has complimented my new look, it really helps.

This may all read as terribly vain. But look around at the media, what is considered feminine, youthful and desirable now? Long, full hair. Women’s hair is a multi million pound, heavily marketed business. Women have extensions woven and clipped in, to achieve this look. Gail Porter was seen as brave for being bald in public, and Britney Spears labelled crazy when she shaved her head. I’m never been a girly woman, but I’ve always taken pride in my appearance and this change is one I did not choose. I’ve chosen to own this change, but that doesn’t mean it doesn’t hurt. 

And more than that, losing my hair is a constant and highly visible reminder that, try as much as I might, I am not totally in control of what is happening to my body. This is what cancer, and its treatment, do to you. 

Preparing for chemotherapy session 2

Whoever thought I’d be glad to be having chemotherapy? I was so frustrated last week to have my chemo delayed, as the sooner I start, the sooner it’s over. But it gave me the chance to enjoy Easter (chocolate!) and I even got out on the bike, which made me super happy. 

First thing this morning I was at the hospital for my blood test. Unlike the Imaging Department and their pizza bleepers, for a blood test you take a delicatessen ticket and await your turn.

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Then off to Cherry Lodge Cancer Care centre for an acupuncture session. Apparently, it can really help with the nausea, so worth a try. Needles in my feet, legs, tummy and hand. Felt like a pin cushion after the blood test too.

This afternoon I went to Raoul’s in Paddington to choose a wig, accompanied by one of my friends, and we had a great laugh. The NHS fund a certain amount towards a wig (for the Whittington it’s £120, apparently it varies by  hospital) but you can top this up. Every customer has a private room, and your wig fitter brings a selection to try on. Some of them looked truly awful and were obviously wigs. Interestingly, the long ones look more fake. In the end, my friend and I agreed that a short wig, like my new cut, was the most flattering and least obvious. Not sure how much I’ll wear it, but I’m glad I have it should I lose a lot more hair.

I’ll persevere with the cold cap tomorrow, although it might hurt more with so much less hair to protect my scalp. And I’ll remember to pack a thin lunch.

Chemotherapy delayed. Thanks shingles!

A quick update to confirm that my oncologist has delayed chemo until Wednesday 19th. She wants to be confident that the virus is under control before my body gets blasted with drugs again, especially as the poxy virus (proper name herpes zoster ophthalmicus) getting in to my optic nerve could be quite nasty. All a bit frustrating, but I was warned than all treatment plans are subject to change. On the positive side, my taste buds are fully recovered and will appreciate Easter eggs.

And  I came home with an actual bag full of drugs. I’ll be staying on the anti virals all through chemotherapy and for six weeks afterwards.

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Inspired by Victoria Derbyshire I thought I’d do a video about hair loss. If I suddenly plunge in to depression about the whole thing, I may not do another one!

 

And this came in the post today, it’s a personalised medical alert bracelet, which I’ll wear when I’d doing anything a bit risky, like hurling down hills on my bike at 40mph…… I bought it from Etsy for £11.30. Great idea for anyone with medical conditions.

 

Bring on chemo session #2, I’m ready for you!

Well, it’s all been happening here at Project Lumpy in the couple of weeks since my last post. As my second week after chemo progressed I got stronger by the day, and the side effects lessened. This glorious weather has meant I’ve been out and about for walks, the odd cuppa and cinema trip. I measured my progress by the fact that I wanted to drink tea again. Delicious it is too. Some lovely visits from family and friends, and some amazing gifts (thank you!). Then in to the third week, all going swimmingly, and I even made it to a spin class  – although I didn’t push as hard as I usually would, but it felt really good.

It is quite odd waking up everyday thinking “I wonder how I feel today, what side effects might surprise me?” So far: nausea, constipation, change to taste, fatigue, no energy, low mood, hair loss, achy legs, headache, dizziness, acid reflux, burping, itchy scalp, painful glands and chemo brain. Fortunately I haven’t a day with all of these delights at once.

Chemo Brain

Chemo brain is real. For example, I realised about ten days after my chemotherapy session that I had no idea where I’d parked my car. Fortunately, a wander around the side streets and I found it. As anyone who has spoken to me in the last couple of weeks will attest, my conversational skills became a little stilted – it’s like Ethel from Eastenders has taken up residence in my brain. But if I start asking “has anyone seen my Willy” then we know I’m really in trouble….

I’m learning to pace myself (not easy when I’m used to a pretty full life), and take breaks when I need them, but also to get out and do things that will make me smile. I also seem to be taking an inordinate number of pictures of the cat…

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Hair

Thank you to all of you who alerted me to Victoria Derbyshire’s brave unveiling of her new hair under her wig. Her new hair looks fabulous and it’s the sort of positive story I relish. I’m really glad she was honest about just how tough losing hair is for some people. A couple of weeks ago I met a woman who had lost all her hair, including eyebrows and eyelashes, through chemotherapy. And she totally owned it. She took her hat off with confidence and looked amazing. Such an inspiration. If I go bald, or my hair goes very patchy and I choose to just shave the lot off, I want to own it too.

The NHS offers a wig referral, and I will get a wig, but not sure how I’ll feel about it. Wigs now are really very good, although the thought of a human hair wig is a bit repellant to me so I’d chose a synthetic one. Will I want a new look? Will I want to wear the wig?

Last week I discovered the joys of dry shampoo and using a wide tooth comb. It puts minimal stress on hair roots and means I can wash my hair just once a week. In the last couple of days my scalp, especially the crown, has become very itchy. And you know that painful feeling  in your hair follicles after you’ve had your hair in a ponytail or up-do, and then take it down? That’s how it feels all the time. My hair is falling out more than usual, but not noticeable to anyone else. The grey ones seem to be staying put though!

Infection

Chemotherapy is indiscriminate in that it just wipes out lots of cells. So, not only does it wipe out the cancer cells (yes please, kill off the little buggers!), it also kills some white blood cells, which means the immune system is compromised. Consequently, anyone undergoing chemotherapy is under strict instructions to watch out for signs of infection. Those self administered injections I have are to build up the white blood cells. The advice is also to avoid anyone with germs, and busy public places, between days 7 and 10 after chemotherapy.

I take my temperature every morning now. This is part of the letter which I have to give to the London Ambulance Service should I call them:

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I never want to find out what is meant by profound diarrhoea.

So, having taken sensible precautions, imagine my surprise when I infected myself! I learnt yesterday that the chicken pox virus (I had it when I was 5) lies dormant in our bodies, just waiting for a compromised immune system to offer it the opportunity to come back as shingles. Yes, I have shingles.

Earlier in the week, I’d had raised glands in the right side of my neck, and an itchy spot on my hairline. I showed the breast care nurse. She was not unduly concerned and advised me to keep an eye on it. I had no temperature, so was not worried either. I had a headache at times, and an itchy head, but these are side effects of the chemo. But my forehead got spottier and itchier. And my right eye became very puffy at night time. So, I didn’t follow my own advice, and I goggled my symptoms. Mmmmmm, looks like shingles to me. Off to A&E I trot with my overnight bag (just in case).

One of the plus sides of having chemotherapy is you get fast tracked through A&E and given an isolated room. A doctor took one look at my forehead and confirmed it is shingles. Fist pump for me, I got it right!

I’m now on another drug, Aciclovir, for five days. The blisters are infectious (keep away if you’ve never had chicken pox) so I must try not to touch them, but also keep the area clean. They’re quite painful and itchy. Fortunately I still have a fringe to cover them up and the sun is out so I can wear my sunnies to cover my swollen eye.

Today I’d planned to get out on the bike. That idea’s on ice for now.

What’s really annoying is it may delay my chemotherapy on Tuesday. Grrrrrrh. I feel well and ready to go again, but my oncologist may not want my system assaulted with lots of drugs whilst my body is dealing with the poxy pox. I see my oncologist tomorrow, so we’ll see what she says.

And do you know how hard it is to not scratch when you have an itch?

 

 

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.