Tears and night sweats on my pillow, but far fewer hairs

Just over three weeks since my last chemotherapy, and I’m pleased to report my hair has nearly stopped falling out. After four months of vacuuming hairs off my bed daily, the hair loss seems to have abated considerably.  I’ve made a couple of videos to show progress. I’ve tried to join them together, but I can’t work it out (I would use chemo brain as an excuse, but I’m actually just not good at tech stuff). Here’s the hair progress.

Brave The Shave – please don’t

At the moment, Macmillan are advertising their Brave The Shave campaign. Now, I love Macmillan, they are an amazing charity, and I have benefited from them hugely. But this campaign really gets my goat. I know people want to fundraise, which is hugely admirable. But choosing to shave your head hair off, by choice, is nothing compared to the trauma of losing all of your hair, day by day, because you have a life threatening illness. I feel it belittles the experience of those going through chemotherapy.

You see your identity, your femininity, your confidence, disappear down the plughole everyday, not knowing if, or when, it will grow back. Having very few eyelashes means constantly watering eyes, grit becomes a real problem. Sparse eyebrows make your face look bald. Loss of body hair makes you look pre pubescent. And you have to cope with this when you are emotionally and physically spent from everything else that chemotherapy does to your mind and body. And none of this is brave, you just have to get through it as best you know how. I’ve come to dread catching sight of my reflection when I haven’t done the “full works” of hair and make-up.

By all means, if you have long hair, have it cut short and donate it to a charity like The Little Princess Trust. But I think there are much better ways to fundraise, show solidarity, and support for those dealing with cancer than having a head shave.

Treacle

Fortunately, the treacle days are over. After emerging from the last round of chemo treacle, I had a couple of tearful days. I felt low and totally wrung out – I think it was the relief of chemo being over, and me processing what I’ve been through.

The legacy from my chemotherapy is a continued aversion to tea (it’s been months since I had a cuppa) and fatigue. I pace myself as the fatigue is now constant. If I have a busy day or two, then the next day I will need lots of sofa rest. On the plus side, I’m doing better at boxsets. For instance, I watched all of season two of Top Of The Lake in one day (totally ridiculous plot, but great television and good to see a strong female cast, including the wonderful Elisabeth Moss. What am I supposed to do on a Sunday evening now that The Handmaid’s Tale is finished?).

So, it’s more like intermittent syrup than full on treacle.

My overnight bag

Since the start of chemotherpay, I have had a standby overnight bag packed, at the ready, in case I needed suddenly to be admitted to hospital. It was a great piece of advice to do this.

I was delighted to unpack the bag this week, another milestone.

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Tamoxifen

This is the longest phase of Project Lumpy. My oncologist saw me on Monday, was happy with my progress, so prescribed Tamoxifen straightway.

Tamoxifen is a hormone therapy which works by blocking the effects of oestrogen on the cancer cells’ receptors. My cancer is oestrogen positive, meaning that the hormone oestrogen stimulates the growth of the breast cancer cells.

It’s a simple daily tablet, and I will take if for five years. During this time, my natural menopause should happen. After five years of tamoxifen, I will move to an aromatase inhibitor, which stops the production of oestrogen in post menopausal women.

Tamoxifen is not without its own risks. It increases the risk of womb cancer and deep vein thrombosis, so I need to be vigilant for symptoms of both. There are also the delights of hot flushes, night sweats, loss of libido and mood changes. Some women also report weight gain and facial hair – blimey, I’m thinking Life And Loves Of A She Devil.

St Nora

St Nora has brought gifts again (thank you), including the re introduction of some long lost friends in to my life. Through the wonders of social media, I have met up with some old school friends in recent weeks, and it has been so heart warming to reconnect.

Radiotherapy

The next phase, radiotherapy, starts on Monday. I feel positive about it. I’ll be having it at the Royal Free, which is a lovely walk across Hampstead Heath from where I live.

There’s a chink of light at the end of the tunnel.

Chemotherapy finished!

Two days ago I had my sixth, and final (ever, I hope) chemotherapy infusion.  Both of the last two infusions have gone really well. The nurses have to find new veins each time, which they are superb at doing, as the veins used are now about a third of their normal size. Apparently, they’ll take about a year to regrow. One of my veins is also discoloured. Shows just how bad ass those chemo drugs are.

The cold cap hasn’t been too bad, it’s certainly much more tolerable in the warmer weather. It’s also amazing how much easier it all seems when the end is in sight. And wearing Wonder Woman pants gave me added super powers.

After my last infusion this week, I had big hugs and thanks for all three of the chemo nurses on the chemo suite. Their bedside manner, care and patience have been exemplary. 

Treacle – a preferable variety

In terms of side effects, #5 was the easiest so far, so I have high hopes for the next couple of weeks as I recover from #6. I’m pretty much housebound for 6 days once the steroids wear off and the nausea, fatigue and leg pains start. I also have the joy of hot sweats, which in our heatwave of 35 degrees was not much fun! So, it’s very hot and sweaty treacle, but not as thick as the previous variety. 

The fatigue is cumulative, but I’ve just learned to pace myself and get lots of rest. One of the most long lasting side effect seems to be how weird my mouth feels. It feels slimy. One of my favourite drinks in the hot weather is an iced coffee, so I treated myself to one in the heatwave.  Yuck! I nearly spat it straight out – what a waste of £3. Apparently my taste buds should return to normal after a month or so. I can not wait to enjoy a cup of tea again. How you come to appreciate the joy of simple pleasures once you’ve lost them. 

And so far, my finger and toe nails have been ok. I’m wearing dark nail varnish to protect them, and wearing Marigolds for all household chores. Fingers crossed that don’t start to lift off in the coming weeks.

Being normal(ish)

After #5, my good week was great – I’ve seen lots of friends and work colleagues, it’s been so lovely. I feel very lucky. Been to a couple of birthday parties too, which has all felt like normal life. It takes me quite a bit of courage to do some of the things that used to be normal. I’m not much of a mingler at the best of times, and without Dutch courage, parties and events can be especially daunting. Can I talk about anything else but cancer? Will others be bored of me? Is my cancer the most interesting thing about me? Will they all notice my thinning hair? 

But I am determined that cancer will not stop me doing what I want to do. It’s about finding ways through. For instance, I feel very self conscious in my wig, so I’m wearing head scarves instead. It feels more me and works for me. My hair’s not too bad, the torture of the cold cap has paid off. But I don’t want a sunburnt scalp and I have a definite bald patch.

 

I’m continuing to exercise, including spin classes, on my best days. Exercise helps me hugely, mentally and physically. 

Radiotherapy

No hanging about with Project Lumpy, we’re on to planning the next phase. Yesterday I was at the Royal Free where I will be having my radiotherapy. Lots to learn, but all seems much more straightforward than chemotherapy. 

The hospital team were great, very welcoming and informative. I met my consultant oncologist, Dr Stewart, and the team of specialist nurses and radiographers who will plan and administer my treatment.

Radiotherapy starts Monday August 7th, and I go to the hospital every week day for four and a half weeks, so 23 days of treatment.

Whereas chemotherapy treats the whole body, radiotherapy is a targeted treatment. High energy x-ray beams are used to target any remaining cancer cells. As the radiation can also affect healthy cells, and brings with it its own cancer risk, the medical team plan the radiotherapy to target it to an exact site in the body. Consequently, yesterday I had my first ever CT scan (not scary at all compared to MRI) and learned how to lie still and flat with my upraised arms in rests and lasers angled on to my torso.

The CT scan produces internal images of my body so that the  radio waves can be targeted to the tumour site and lymph nodes, whilst trying to avoid my lungs. Fortunately, as my tumour is on the right side, my heart will be well clear. To position all of this accurately every time, yesterday I had my first ever tattoos! Three little dark blue dots, one on either side of my rib cage, and one in my cleavage.

Possible Side Effects

During radiotherapy, I am likely to get tired, especially towards the end of treatment as my body will have had its full dosage of radio waves. I’ve been warned that the fatigue is usually at its worst two weeks after radiotherapy finishes, but then wears off. So, that’s looking like mid September. The skin also gets burnt, so I will be liberally applying E45 cream to the site and wearing soft bras and cotton clothing. I’ve been advised to keep the site covered from the sun for a year after treatment, as it will be new “baby” skin, and quite fragile. 

Lymphodema risk increases, and my ribs are more likely to break than bruise. Better be careful on my bike then! It may scar my right lung, but this won’t affect my breathing.

The longer term side effects can be 20 years from now, and are potential lung and heart damage. However, as Dr Stewart explained, much of this is based on old data, when radiotherapy was less technically advanced. One of the radiotherapists told me that the big radiotherapy machine costs about £2m, and the level of technology involved is astounding. Quite amazing.

But despite all the possible complications and side effects, the consultant told me that radiotherapy reduces the risk, on average, of cancer returning from 15%/20% to less than 5%. Worth doing then.

Tamoxifen

Another phase of Project Lumpy is taking the hormone therapy drug, Tamoxifen. I’ll be starting this as the same time as radiotherapy. Really pleased these will be happening in parallel. Whilst this may add to the side effects I have to manage for a few weeks and months, it all hastens the time when I can start to define my new normal.

Saint Nora

More beautiful gifts. Thank you x

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.