It really is good to talk

Thinking about what to write in this blog post, and it occurred to me that the last few months have been lots of talking, and how wonderful it is to talk and share.  I’ve talked and written about my personal experience of cancer ever since diagnosis, and it constantly amazes and delights me how this sharing opens up conversations with others.  Complete strangers will tell me their private stories of cancer, loss and hope, and there is an immediate connection and sense of mutual support. It feels such a privilege when people expose their vulnerability, and we have to handle each other’s vulnerabilities with care. It also deepens the relationships with those we hold most dear.

Mental Health

As I mentioned in my last post, I signed up to a course on mindfulness based stress reduction (MBSR). I completed the course in September, and have since been practising mindfulness most days, even if it’s only ten minutes. It’s amazing the difference it makes, and I’d highly recommend it to everyone. There’s great comfort in knowing that I can centre myself and be in the moment. It doesn’t stop life being stressful, or feelings of sadness, anxiety, fear and anger from arising, but it does help to limit how overwhelming these moments can be.

In September I also had my last counselling session. My Macmillan funded counsellor was excellent – we had a great rapport, which is so important. It’s now two years since I went to see my GP with stabbing pains in my boob, and the start of my life with cancer. It certainly feels much less raw than a year ago, and counselling has helped me process this and look after my mental health.

Feeling more like me, looking more like me.

In the past few weeks, I’ve had a number of people say to me that I’m looking good, looking like me again. Can’t tell you how great that feels. There’s been a progression from being told I look well, to being told I look good – a subtle but important difference.

Such comments also cause me to reflect on just how much cancer treatment assaults us physically. I’ve had a couple of holidays and it felt great to be in my bikini on the beach and feel joyous that my body is strong, healthy and hopefully cancer free again. And whilst I do have cellulite, a pot belly and freckles rather than a tan, I’m no longer struggling with hair loss and afraid in my own skin.

Tamoxifen – not a barrel of laughs

Having said all that, I’m also accepting that how I am now is my new normal. Frequent hot flushes, low mood, brain fog and occasional crushing fatigue are all side effects of tamoxifen. I had hoped these symptoms were the overhang of treatment, but I think this is how the next few years will be. There was an article about this in the Daily Mail recently. Most days I’m ok with this, but sometimes it really gets to me. For example, last week I was due to go to a gig at O2 with some friends, and I had to cancel as I was just too fatigued and knew I could not make a late night (believe me, 11:00pm is now a late night!)

Sadness

Hearing of deaths from cancer, especially breast cancer, impacts me much more than it used to. There’s a feeling of huge empathy for the individual and their loved ones. There’s also a natural reaction of “that could be me”.

Recently I learned of a young colleague at work who died from breast cancer. Taken far too young. And in September, Rachel Bland died from breast cancer at the age of 40. Rachel was one of the driving forces behind You, Me and The Big C, a truly ground breaking podcast talking about all things cancer, including her own death. It is an honest, uplifting, powerful listen – I love it. It’s helped me so much. So her death really hit me, as I felt such a strong affinity. Through my blog I was contacted by a BBC journalist, and was humbled to share my thoughts on the considerable impact of Rachel’s podcast.

We need to change the conversation around cancer and death – the more we talk about these things, the more we dispel their mystique and the fear they engender.

Show me the stage!

In February I spoke about the patient experience at my hospital’s annual cancer conference. Afterwards, I was approached by a Case Studies Officer from Macmillan asking if I’d like to be one of their case studies. I happily agreed and this led to me being filmed at home for a Macmillan staff training video. It’s a good film (you can watch it here), the cat even makes an appearance

This film led to me being asked to be a speaker at the annual Macmillan Christmas concert. The readers included Dame Diana Rigg, Celia Imrie, James Dreyfus and Sir Matryn Lewis. Eek! I agreed without hesitation.

The concert was superb. My brother and sister in law accompanied me, it was so special to have them there.

The case study video was played (the cat got a bigger reaction than I did) then I was invited on to the stage to be interviewed by Zeb Soanes. My brother recorded it, here it is:

How privileged to talk to 500 people and support Macmillan’s fundraising. The most hair raising moment was to look out to the audience and see Celia Imrie watching me. Gulp.

At the reception afterwards, I was given a beautiful bouquet and a number of people approached me to share their appreciation, and in a few cases, their personal stories of cancer. It was a fabulous experience, both humbling and overwhelming. I have found such a passion for improving our lives through sharing and talking, and this concert epitomised the power of human connection.

 

Cancerfit

My cycling holiday earlier this year led me to meet Liz O’Riordan and Tanja Slater, two amazing women. They’ve created a new website, Cancerfit, to support anyone facing cancer and champion the benefits of getting and staying fit. I was chuffed that they published a couple of my blog posts.

Liz has also just published a great book about breast cancer, which I would highly recommend.

 

Breast cancer awareness month

October was breast cancer awareness month, and I took the opportunity to do a couple of talks at work. Hopefully it’s encouraged more women, and men, to check themselves, know their bodies and go to the GP with any concerns.

Happy Christmas

Another year nearly over, and what a year it’s been. Wishing you all a superbly sparkly, love filled Christmas, and a peaceful, happy and healthy year in 2019.

Advertisement

Getting to a new normal

Life is becoming less and less about my breast cancer. Each waking moment is no longer overshadowed by it, but I am changed by it, and the process of recovery, adaption and acceptance continues.

A year ago I was just about to start radiotherapy and had a bald spot which made me look like monk. This year I have thick, curly hair and have just cycled 120 miles in a day. Both those things are related to my cancer, and are joyous. But recovery is not all plain sailing.

Symptoms receding, recovery progressing

My hair regrowing gives me so much pleasure, even if it does now look like I have a bad 80’s perm as the chemo curls grow out. The day it was long enough to put in a (very short) ponytail was a very happy one.

My fatigue is definitely improving, helped by making adjustments such as going to bed at 9:00pm most days and working from home one day a week. It does mean that Monday to Friday are now basically just work and sleep, and my social life now is very different – but I’m trying to accept and adapt to this rather than fight or ignore it.

The hot flushes (thanks to Tamoxifen which puts me in menopause, but should keep any cancer at bay) in this heatwave are simply horrendous. On the tube the other day, the sweat was already running down my face, scalp and back when a hot flush decided it was a good time to call. The flushes always bring with them a delightful wave of nausea, and I felt terribly claustrophobic; a new experience. I left the tube at the next stop to calm (and cool) down. It’s good that menopause is becoming less taboo, but we still need to talk about it more than we do.

My bag now always contains a hot flush emergency kit: bottle of water, a fan and a pack of tissues.

I had been wearing these badges, which work well – provided fellow passengers looked up, I would always get offered a seat. But, I’d then get pitying looks, and I’d find the kindness of strangers made me want to cry every time, so I stopped wearing them.

MBSR

When I reflect on this year, I’ve undoubtedly made progress. But at times, it feels like two steps forward, one step back. My confidence is still rebuilding, and I’m acutely aware that my brain is not as sharp as it was. At times this really affects me at work, and I find that the usual stresses of work become much harder to cope with – my resilience is not what it was. And I didn’t get through cancer treatment to then be consumed by stress and anxiety. So, after discussing with my counsellor, I signed up for an eight week course in mindfulness based stress reduction. I’m two weeks in. It’s a considerable commitment, at least half an hour a day on mindfulness for eight weeks, but it’s brain training and creating a new way of being. Learning to be in the moment. I can feel its benefits already.

Sharing my experience

Based on the talk I gave at the Whittington Cancer conference, I was really chuffed to be asked by my oncologist to talk about the patient experience at the annual breast cancer education day in July. The audience was 150 oncologists, consultants, breast care nurses and others involved in treating breast cancer patients from north and east London. Not intimidating at all, then. But it went well – I hope doing such talks will improve the patient experience for those who come after me.

Ride London

I am still floating on a cloud of euphoria having completed Ride London last Sunday. Not only that I cycled 100 miles in the foulest of weather, but that I did it in my fastest time ever (6 hours 36 minutes). Oh, and I actually cycled 120 miles as I cycled to the start at the Olympic Park, and then home from Green Park afterwards.

The event was simply amazing. The evening before, I met up with a holiday/Facebook chum who was also signed up for the madness, for a serious carb loading dinner. Then on the day, the rain started as my wave of cyclists crossed the start line (to Bat Out Of Hell). The rain didn’t stop for the next six hours. My padded shorts were soaked through by mile 20. Don’t talk to me about chaffing.

At Hampton Court, a work chum was one of the brave and drenched spectators, and we shouted joyously at each other. In Kingston and Dorking, there were fabulous live bands – I got goosebumps and found myself crying tears of elation. But the ride was tough. As I was battling up Newlands Corner (the first of three big Surrey hills), with squalling winds, horizontal rain pricking my face and debris blowing from the trees, I thought “this is the toughest thing I’ve ever done” then I remembered the toughest thing I’ve ever done is have chemotherapy. And the reason I was riding was to raise funds and awareness for Breast Cancer Now so that fewer women have to endure cancer treatment in the future. I’d pimped my jersey with the names of all the wonderful women I now know with breast cancer, and I thought of them as my thighs burned, my bum hurt and my lungs gasped.

The ride finishes on the mall, in the shadow of Buckingham Palace. It’s a truly life affirming experience. As I cycled under Admiralty Arch, I heard “Go Alison!” “Go Alison!”, and there were my brother and his family cheering me on. Wow, what a moment.

After collecting my medal, I then bumped in to another old friend who’d just completed the ride, and a new friend from my Lanzarote cycling holiday who was also cycling for Breast Cancer Now. Here we are.

Thank you to everyone who has sponsored me. For anyone who’d like to here’s the link. I chose to cycle for Breast Cancer Now as their research is so important – their ambition is that by 2050, everyone diagnosed with breast cancer survives the disease. I want to help make that a reality.

This amazing body

I write this post with a sense of achievement, euphoria and rather sore thighs and glutes. Last week I was on a women’s cycle training camp in Lanzarote, and it was a fabulous experience.

With my cycling group, I’m second from the left.

Keeping fit and active through out treatment was important to me, and I’m sure has supported my recovery both psychologically and physiologically. However, I know I’ve lost fitness, strength and stamina and I want to return to my fitness levels pre cancer. Especially important as I’m cycling Ride 100 this summer. Early last year I found Liz O’Riordan’s blog, a breast surgeon with breast cancer. Her story chimed with my own experience, it’s a great blog. She wrote about Tanja Slater’s training camp, and I was intrigued. I bookmarked the link, but felt I’d lost too much fitness to go.

With Liz O’Riordan after our final ride of the week.

Then in the last few weeks, I’ve kicked myself up the proverbial, and got back on my bike. One week I cycled 80 miles. This amazing body could still do it. All those spin classes have paid off, and I felt I had (just) enough confidence to jet off to Lanzarote, with hope in my heart and my bicycle in the hold.

42mph down that road. Whoa!!!

What an amazing week. The scenery is stunning, quite surreal in its volcanic splendour. The roads have no potholes and the drivers don’t seem to have a vendetta against cyclists. We were thirty female cyclists, mixed ability, being trained by five coaches, some of them ex-Olympians. Me, being coached by an Olympian?! The incredible places cancer has taken me. The coaches and other cyclists were hugely supportive. And sadly there were a few of us there who have had cancer. But, it proved once again, that getting cancer is not the end of your life.

 

 

I’m feeling rather chuffed at what I achieved last week:

• Cycled 6 days in a row (my bum is not impressed, especially after a bikini wax to get pool ready. Ouch!)
• My first ever time trial (I was one of the slowest, but a great benchmark to improve on)
• Cycled 230 miles
• New top speed on my bike – 42mph. The descent was exhilarating, and I thought “life is bloody wonderful” as tears of joy rolled down my cheeks.
• Took my bike, first time ever I’ve dismantled my bike and packed it. Thank goodness for YouTube videos as I’m pretty clueless.
• Learnt how to cycle in terrifying cross winds.
• Made some great new friends.
• Only ate chips once!

It’s caused me to reflect how amazing the human body can be, especially if we look after it (chips notwithstanding). What my treatment put my body through last year was, at times, brutal. A year ago, I was half way through chemotherapy and recovering from a bout of shingles. This year my body is rebuilding itself and taking me to places I hadn’t imagined. In this era of body shaming it’s easy to focus on the bits of our bodies we hate. I hate that my body got cancer, I don’t much like my thickening waist and potbelly (thanks Tamoxifen), and my hair is growing but not what it was. But, I love the life affirming places this amazing body can take me, and for that I’m hugely grateful.

Looking after mind and soul

Also helping me hugely is the counselling I am having at the Whittington (funded by Macmillan – where would we be without our amazing charities?) As time passes from diagnosis and treatment, it is easier to process what has happened, to see it more clearly and understand it. A process of acceptance and adaption.

I’ve been at work full time since January. It’s motivating to feel a sense of purpose and achievement again, but the fatigue sometimes comes crashing in and can really knock my confidence. But I’m learning how to rest, saying no and listening to what my body and mind need. Being kind to myself, and to others, is one of the greatest lessons that cancer has reinforced for me.

The All Clear

Last week I had the great news that my MRI and mammogram scans showed no evidence of cancer. There had been over three weeks between the scans and my oncology appointment, so I’d assumed it was good news as I imagine they’d have called me back sooner if they’d seen anything untoward. But it was still a wonderful relief to have the confirmation.

I’ll now be seen at the breast clinic every three months for two years, with an annual MRI and mammogram for five years. And of course, the most important thing is self surveillance – I check my boobs every two weeks. This great app from Breast Cancer Now reminds me if I forget, and I urge everyone to download it and use it.

Whittington Cancer Care Conference

My hospital holds an annual Cancer Care Conference, set up by the Macmillan Information Manager and one of the breast care nurses. They asked me if I would be a speaker this year, talking about the patient’s story, and sharing how important the complementary services have been in helping me through treatment and recovery. I jumped at the chance. I really enjoy public speaking (I would have been on the stage if I’d been talented enough) and it’s important to me that something good comes from my cancer. This quote sums it up beautifully;

Tell the story of the mountain you climbed. Your words could become a page in someone else’s survival guide.     Morgan Harper Nichols

So, on 2nd February I gave my half hour talk to the 150 assembled cancer patients, carers and medical staff.  In the audience were my oncologist, psychologist, breast care nurse and a number of new friends I’ve made through cancer. I had a wonderful sense of community (a rare commodity in London) and support. And to think, 13 months ago, we did not know each other. That community support is in itself an important part of recovery and resilience.

My talk was accompanied by photos and pictures from the past year – who needs death by powerpoint when you’ve already got cancer to contend with? I was very mindful that there would be others in the room with a worse prognosis than mine, so getting the pitch right was really important. So, it was honest, funny, sad, but hopeful.

The feedback afterwards was quite overwhelming. My oncologist said my talk was fearless. And a number of people approached me during the day to share their thanks, with comments such as “it was like you were telling my story” and “you’ve really helped my daughter”. It was humbling, and I’m so grateful that I am able to articulate my experience. And I’ve been asked to talk at two other events.

How To Cure Cancer

The How To Academy offers talks on a variety of subjects, and recently I attended the Cure Cancer evening. It was in a lecture theatre, 7 speakers (one being my consultant), all terribly intelligent and highly qualified. Would my O-level biology be enough?

It was fascinating, if a little too long. For instance;

Tobacco kills 120,000 each year in the UK, whereas breast cancer is a tenth of this.

Artificial intelligence offers exciting opportunities to speed up the research and development of drugs.

There are great advances in immunotherapy, such as the herpes type 1 virus is now a treatment for melanoma.

Where should we be spending our health budgets? Do we spend enough on prevention and early diagnosis? On London Underground’s Jubilee line, as you travel west to east, there’s a year’s decrease in life expectancy for every stop from Westminster to Canning Town.

As I’m now a member of the UCLH Cancer Collaborative Patient Experience and User Involvement Steering Group, I’m endeavouring to learn more about cancer diagnosis and treatment, not just breast cancer. It is staggering just how complex the world of cancer is. It’s understandable when people want a simple cure for cancer, but there’s so much more to it. And I’m especially interested in preventing cancer in the first place – I never want anyone I care about to have to go through treatment for cancer.

Sorting my head out

Macmillan fund psychologists at my hospital, and I’ve been seeing one of them, Dr Allen, for a couple of months now. The sessions are helping me hugely. There’s much to process – loss, anger, grief, fear- and as my chemo brain recedes I’m in a good place to tackle this.

I’ve also just completed the Macmillan Hope Course. It’s a six week course, one afternoon a week. There is lots of good information, but it’s also a safe, supportive space to talk with others who just “get it”. By happy coincidence, on my course we had all had breast cancer. And I’ve made some wonderful new friends.

What strikes me though, is how few people access all these amazing services. It’s part of the reason for my talk at the conference, and being on the UCLH steering group, to encourage others to help themselves as they reshape their lives after cancer, and process what has happened. I fear that many people just bury it all deep inside and carry on.

I’m still bloody tired

I now wear these when travelling on the tube in rush hour, as I find it quite intolerable, especially when a hot flush waves over me. The cancer on board badge can be ordered here, and TFL offer the blue badge, available to order here.

Unfortunately, no one sitting down seems to look up, so not been successful so far. Friends tell me it’s the same with the Baby On Board badges, and they have a huge pregnancy bump for people to notice!

Hair

It’s growing back with gusto. I can’t do a thing with it, but at least it’s come back thick and not any greyer than before. I recently bumped in to someone I haven’t seen for a couple of years, who didn’t know I’d had cancer. She didn’t recognise me and was visibly shocked “You’ve had your hair cut short!”. Not “oh wow, I love your new hairstyle, it really suits you”. Moments like that are crushing.

Ride 100

What have I done? I’ve signed up to cycle London Ride 100 for Breast Cancer Now (yes, I will be asking for sponsorship). I’ve cycled it three times before, so know what to expect. Which makes it even more baffling that I’ve signed up for it. But, it’s a great goal to have to encourage me to regain my fitness.

Saint Nora

Lovely flowers from my lovely Mum and Dad x

Squashed boobs, dangling boobs and the waiting game

Today I had my first routine mammogram and MRI following treatment. This will happen every year for five years. It was interesting to reflect how a year ago all these procedures were unknown and a little daunting to me, but now I feel like an old pro. That’s not to say there aren’t still surprises and amusement to be had…..

Mammogram

This was first. I checked in to the imaging department, got my pizza bleeper, and waited my turn.

The radiographer saw me promptly. I felt the need to apologise for my clamminess as a hot flush chose to heat me up as I entered the room. I was grateful that I got to take half my clothes off and cool down.

The mammogram itself is uncomfortable rather than painful. Each breast is squashed between two clear plates, and two images taken of each. I had to resist the temptation to look down to see what my squashed boobs looked like.

The radiographer showed me the images of my breasts on her screen and showed me how my right one is now denser because of the radiotherapy. She said I may be called back for an ultrasound if they see anything they want to investigate. Mmmmm, no news is good news then….

MRI

I am having MRI’s because my tumour did not show up on my mammogram last year. Whilst they are unpleasant, I’m reassured that I have MRI’s too.

There’s a small reception area where all patients wait their turn. In the background, the banging and clicking magnets of the MRI scanners can be heard, and we all sit with expressions a little like lambs on the way to the abattoir. Your name is called, and you’re given two gowns, and an NHS plastic bag for your clothes (oh, the glamour of it all!), and instructions on how to wear the two robes. One chap, sporting his two NHS gowns, socks and trainers,  popped out of the changing cubicle, and asked the receptionist in an unintentionally audible whisper, if he could keep his pants on. Yes, he could.

The MRI takes about half an hour, and half way through a dye is released in to the bloodstream so the radiologists can identify any potential cancerous cells more easily in my dangling boobs. It took two technicians and two attempts to get a vein in my hand for the injection, my poor collapsed veins.

During today’s MRI, musical distraction was provided over the headphones by Magic.  No Lionel Ritchie this time, but there was an advert for Cancer Research UK. Blooming marvellous, there I was, successfully zoning myself out to a relaxed headspace, when I’m reminded why I’m there!

The face down lying position is quite uncomfortable, and the head rest certainly left its mark.

So, now I wait. My appointment with my oncologist is 20th February, when I’ll hear the results. Not feeling too anxious at the moment – let’s hope that continues.

Happy New Year!

New year is a funny old time. Every year, it seems to be the same conversations about not going out, because it’s all a great big rip-off, so let’s stay in and have a quiet one. Then all the conversations about resolutions, dry January, weight loss, gym attendance, not smoking, less stress etc etc, most of which are soon broken.

Generally, I don’t make resolutions, although last year I had decided 2017 would be a dry year (I’d made the decision before my cancer diagnosis). And I’m really proud that I haven’t drunk alcohol since. I feel so much better for it. It is one of the factors that cause breast cancer (amongst many other cancers), and that’s a risk I don’t want to take anymore. I figured I’ve had 30 years of enjoying booze, and now’s the time to stop. It also helps that I can’t stay awake past 9.00pm these days, so I’m not going out much anyway…..

I spent this new year in Devon and Cornwall. There’s something truly healing and energising about the open countryside and wild beaches. My friend and I elected to have an early night (I slept through midnight), and instead celebrate the new year by having a wonderful day on January 1st. I had felt ambivalent about saying goodbye to 2017, which seemed rather odd given it was such a tough year. Then I realised why – it’s because the events of last year aren’t over.  I can’t just say goodbye to cancer and everything it brought with it. The impact and change will live on forever, for me, my family and my friends.

Widemouth Bay

Anniversaries

It’s a couple of months since my last blog post, and life is feeling more normal. Which in a weird way brings in to sharper focus what an unbelievable year it has been. As I get physically stronger day by day, week by week (although not as quickly as I’d like), I think my brain realises “hey, now’s the time to process all the crap this year has thrown at you!”. Also, it’ll be a year ago next week that I went to see my GP about my boob feeling weird, in blissful ignorance of the tumour inside me.

There are moments when I will get lost in something, and completely forget that I have had cancer. Then I remember, and it all feels surreal all over again. I need to pinch myself. Did this really all happen? I imagine it must be what bereavement feels like, and it’s all part of the process of change and acceptance.

Then there’s dealing with the fear of recurrence. 70% of breast cancers never return. But, in the dark moments, my brain takes me to a place where I’m in the 30%. That’s something I have to learn to live with. I don’t feel fearful, but I know I think about the future in a very different way to how I did before cancer. And I do not want fear to orchestrate my life and my decisions.

My view of my future has changed, and this is challenging to deal with. For instance, during chemotherapy, a letter arrived from my building society offering me new mortgage deals as my current deal was due to end. There is another 18 years on my mortgage, which until I was diagnosed with cancer I naively assumed I’d be around for. Opening that letter was a punch in the chest. I can no longer assume I’ll be around to pay off that mortgage. Now, I know none of us knows how long our lives will be, but a cancer diagnosis puts your mortality right in front of you and you can’t ignore it. Some days it’s right in your face and you can’t see around it. Other days it recedes and glimmers of hope and future plans come in to view.

I really want to get my MRI and mammogram in January done and dusted. That’s the next big milestone. Once they’re done, and hopefully everything is all clear, then I can start to think about 2018.

The wonderful Macmillan team at the Whittington have referred me to their clinical psychologist for counselling, something I know will be really helpful.

Blimey, think I’d better lighten this up a bit….

 

Add Aspirin trial

Having had a successful 8 week test of taking aspirin, I am now in the trial proper. I saw my oncologist a couple of weeks ago, and all was ok to go ahead. I’ve been given a card to carry with the trial details, so if I need medical care for something like a heart attack (oh, how I’d laugh!), the medics can find out if I’m on aspirin or the placebo.

A blood test was needed. So, off I go to get my deli counter ticket. The phlebotomist called me in, and I explained that my veins are quite hard to find because of chemo damage. She gave me one of those  patronising “You don’t know what you’re talking about” looks. So, she puts a tourniquet around your arm, slaps my veins, looks at them and says “oh dear”.

She ended up taking the blood from a vein over my knuckle. That was comfortable.

Keep Glowing

My hot flushes have lessened with a combination of acupuncture, and me learning how to manage them. But they’re still pretty unpleasant and tiring, especially the accompanying nausea.

I’ve bought a rechargeable fan which I use at home. Only a tenner, and worth every penny.

Hair, back with a vengeance

My eyelashes are long enough (just) for mascara. Hallelujah!

My head hair is coming back thick, curly and rather deranged. But I’m not bald anymore, so that’s ok.

Crop circle anyone?

After washing my hair, I’ve always piled it on my head and wrapped it in a towel whilst it dries. For years, I’ve flicked my head back when I take the towel off, to flick back my long hair. Out of habit, I still flick my head back. Nothing happens now, my hair is too short to flick.  And sometimes that gives me a flashback to the trauma of my hair loss. I never know when these painful reminders will come.

All my other body hair is growing at the rate of knots. I now realise just how much time us women spend plucking, shaving and waxing, having not done it for 8 months. At least it’s black opaque tight season….

I have a permanently half bald armpit. The radiotherapy killed off the hair follicles. Hopefully it did the same for any lingering cancer cells.

Armpit now half bald. And that’s the scar from lymph node removal.

Work

It really feels like I am getting back in to the groove now. I’m hugely frustrated by my fatigue, but chemo brain is diminishing. Last week I presented to 150 people, so can’t be bad.

I’ve bumped in to a number of work acquaintances who I haven’t seen since I’ve been off work, and it’s genuinely touching that they are so pleased to see me and to know I’m ok. At least once a day I find my eyes pricking with tears (in a good way).

However, this young lady is not happy that I am back at work, and not at home for constant cuddles….

Hi ho, hi ho, it’s off to work I go!

I’m in the second week of my phased return to work. The plan is to gradually build up the hours and days, until, hopefully, I am back to full time working in January. I am working for about 5 hours a day, which means I can miss rush hour travel too.

It is great to be back at work for a couple of reasons. Firstly, just being around my team and colleagues is energising and motivating, and it’s lovely to catch up on everyone’s news. Secondly, it will be great to feel a sense of achievement again. This may take some time as at the moment I feel about as useful as a chocolate teapot. I definitely still have chemobrain, but I’m hoping at some point I’ll return to being able to perform as I once did. I can see already I’m going to get frustrated when fatigue and chemobrain stop me doing what I want to. I do need to manage my energy levels. After my first four hour day, I came home and slept for two hours solid on the sofa, then managed another nine hours sleep that night. Which leads me on to….

Sleep

This is my new pastime, it seems I need about nine hours a night. I used to be one of those annoying people that bounces out of bed at 6am full of beans and ready to go. Now it’s more like 8am and it’s a squinting, slow shuffle out of bed rather than anything bouncy.

It is odd, and frustrating, to have to plan my days based on what my energy levels will allow. Never before has that been a consideration. I had some great advice in terms of combating fatigue. If you feel like it’s going to be a good day, do 50% less than you think you can, and on a bad day, do 25% more. In that way, your energy levels and resilience gradually increase.

Holiday

Before returning to work, I took a week’s holiday to my personal paradise, St Lucia. It’s been a year since I had a holiday, and I desperately needed a change of scene, and to be by the sea and in the sunshine.

I know that seems like a long way to go for someone with fatigue, but I’ve been there a number of times, so I knew exactly what to expect, which made the holiday stress free. Everyday I had a treatment, such as massage, and I practised yoga, meditation and some exercise classes. It was exactly what I needed. Plus wonderful, fresh, healthy food.

I also slept. A lot. Every night I was tucked up and asleep by 9pm. What a party animal I am these days! I’m not drinking alcohol now, so staying in the bar is a bit pointless, and I just couldn’t stay awake.

As I’ve just finished treatment, my skin is more sensitive than normal, so I was under strict instructions to keep covered up in the sun. Also, the area of skin treated with radiotherapy needs to be protected with SPF30 for the rest of my life. So, I stayed a very pale hue all week. Combined with my very short hair, and lack of eyelashes, I’ve never felt so unattractive on a beach holiday. On the plus side, it’s the first holiday I haven’t needed a waxing appointment for.

There was a crucial turning point in my recovery whilst I was on holiday. It wasn’t a conscious decision, but with the exception of the therapists who needed to know I’ve had breast cancer, I did not tell anyone I met that I’ve had cancer. In the past nine months I have met so many amazing people, such as doctors, nurses, charity workers, therapists, who have helped me through treatment. I’ve also been reunited with so many friends from years and decades gone by, which has been truly wonderful. But in every instance, these encounters have come about because I have cancer. I was in danger of being defined by my cancer. My experience of cancer is now a huge part of me, and is changing me in ways I am still understanding. But I’m still Alison. And on holiday, that’s who I was. Alison. Not “the woman who’s just finished her treatment for breast cancer”.

Moving Forward

So, some big achievements with getting back to work and going on holiday. I’m half way through a fantastic course provided by Breast Cancer Care, Moving Forward. They are run all over the country, and are totally free of charge.

I also read this book, and I can’t recommend it highly enough. It is full of practical advice and exercises to complete which help you with managing issues such as grief, anger and depression.

My mood, overall, is much better than it was through treatment. But I know I need to actively manage my emotional wellbeing to ensure I rebuild my resilience. Part of this is acknowledging, and processing, all the dreadful emotions and experiences that a cancer diagnosis throws at you. It’s great to be positive, but not at the expense of being honest with how you feel. So, that’s what I’m working on now, and charities such as The Haven, Macmillan and Breast Cancer Care all really help with this.

If you want to know more about the aftermath, this is a great article:

After The Treatment Finishes by Dr Peter Harvey

Add Aspirin Trial

My oncologist asked me if I wanted to participate in a clinical trial, Add Aspirin.  There is evidence that a regular dose of aspirin can delay, or stop, cancer from recurring, which this trial aims to test. It lasts five years, and I am very happy to do my bit for medical research. I also think you get a bit more attention from the medical profession if you participate in a trial, so it’s not all altruism on my part.

How can I help?

I really don’t know how I will be involved with the cancer community in the future, or how much I will want to be involved. But I do want to participate where I feel I can add some value. The Whittington Hospital holds an annual Cancer Care Conference for their patients. I’m delighted that I’ve been asked to be a guest speaker at the next one, in February 2018. Talking about cancer, and its treatment, is something I enjoy, so this is right up my street.

I’ve also applied to be involved in the Patient and Carers’ Network working with UCLH Cancer Collaborative. The objective of the network is to improve the patient experience, something I feel passionately about.

Saint Nora

And still the gifts come! Thank you x

 

Writing this blog

I still feel like I have quite a bit to write about, so I’ll continue to write this blog on a pretty ad hoc basis. Please do let me know if it becomes boring and/or self indulgent.

The next big medical step will be my mammogram and MRI in January 2018, one year from diagnosis, which I will of course provide an update on.

 

Thought I’d share this card with you, sent to me by one of my great chums. We sometimes think happiness is all about the great big stuff in life, but often it’s the simplest pleasures.

Now, go check your boobs!

Radiotherapy

My radiotherapy has gone really well, and is now nearly over. I’ve had 15 sessions that target the whole breast, and I am now half way through the 8 sessions which are a boost to the tumour site. So, my last visit to the hospital for active treatment will be this Thursday, 7th September.

Radiotherapy itself is really straightforward. On arrival at the radiotherapy unit at the Royal Free, all patients scan in their barcode on their appointment card and then sit in reception half watching Homes Under The Hammer/Bargain Hunt/Escape To The Country on the TV in the corner. I was intrigued to see that the radiotherapy unit is next door to the heart attack centre, so I was expecting some kind of  “24 hours in A&E” action to be played out as we waited (especially as the sign is in red) but nothing so far.

Once called for your treatment, you trot off to one of the cubicles to disrobe the part of you being treated and put a gown on. In my case, that’s top and bra off then a scratchy NHS hospital gown on backwards. Most patients seem to be very relaxed about this and don’t fasten the gowns at the back, so there are flashes of bare flesh on display. With my hot flushes, a bit of a breeze is always quite welcome anyway.

In the radiotherapy room itself, I lie on an adjustable bench, pull my gown down, rest my head in a padded doughnut cushion, and have arms overhead on padded rests.  The radiotherapists ask that you relax and don’t move, and they actually move you. It’s rather strange lying there half naked, being gently pushed in to the correct position as they call out a variety of measurements to each other, and say things like “11.7” and “good coverage”. There are also green laser lines across my body to ensure I’m in exactly the right position for the treatment.

The radiotherapists are a wonderful team. They explain everything they are doing, and patiently answer all my questions. At one session, one of them apologised for her very cold hands and rubbed them together in a bid to warm them before touching me. They also cover up my left boob (the one not being treated) with the gown once they have me aligned under the machine. I was so touched by this small kindness.

Once positioned, they say they are leaving the room. At this point I always feel I should say “Okay, thank you, see you in minute, bye!” but I’m so keen to not move even a millimetre that I just produce a little incoherent squeak.

At this point a loud alarm goes off, and then the machine starts to move around the bench. It settles in two places, so my body gets blasted from both sides by the special cancer killer rays. The machine makes of lots of impressive clicking and whirring noises. It’s all completely painless and there’s nothing to see. The total breast treatment took 4 minutes – it takes longer for the radiotherapists to expertly align me than the actually radiotherapy takes.

The boost sessions are even quicker. For this, the radiotherapists attach a kind of lens to the machine (it puts me in mind of a dalek’s eye) which points directly at the tumour site. A gel cover is put over my breast, and then we’re off again. I incoherently squeak, the alarm goes off, the machine clicks and sixty seconds later it’s done.

There are two computer screens in the room, and on it are the exact measurements the radiotherapists are to follow, plus a picture of my insides.  I was fascinated by this. During surgery, clips were left in my breast at the tumour site so that the technicians could see from the CT scan exactly where to target the cancer killing rays. The clips are harmless. One of my questions to the radiotherapist:

“Will the clips set off the machine at the airport?”

The answer is no. We then laughed that our underwire bras usually set off the machine anyway.

One day I noticed that the screen saver on these screens is a kind of mission statement for the hospital. It’s the values with which the staff intend to interact with each other and their patients. It was surprising to see something so corporate in a healthcare setting.

Hampstead Heath

I’ve been lucky to have my treatment through the summer months. I often walk across Hampstead Heath to get to the hospital, it’s a five mile round walk, and quite hilly, so good exercise. I’ve also cycled to the hospital, if I can carry what I need in my pockets, as wearing a rucksack is a little uncomfortable now. Then some days I’m just too pooped, and drive.

Side Effects

Once a week a nurse sees me to inspect my skin. All ok so far. The skin is red where it’s being treated, especially in the crease under my boob, and the armpit where clothing rubs. So when at home, I do a Charlie Dimmock and go bra-less. And suncream is now obligatory as the skin is super sensitive to burning for at least a year.

Fatigue is still my companion. I struggle to stay awake beyond 9pm, and sleep for about 10 hours a night. But my sleep is now punctuated by hot flushes which wake me up at regular intervals. The bed covers get thrown off, the cat gets a strop and I lie there like a star fish until I cool down.

Hot flushes are from taking tamoxifen, and I think they add to the fatigue. I’m having about twelve a day, so I’ll be having acupuncture at Maggies at the Royal Free as this can provide relief. I shouldn’t be using deodorant because of the radiotherapy, so what a great combination: summer heat, hot flushes and no deodorant.

Hair

Hair, seven weeks after chemo

Look, no bald patch! Fair enough, there are quite a few white hairs, but I’d rather look like a version of Cruella Deville than have bald patches. This is seven weeks after my last chemotherapy, and I’m so relieved to see my hair regrow. Eyebrows and eyelashes haven’t got the memo yet about returning, but apparently this is normal.

I’ve continued to go to spin classes at the gym. They wipe me out, but it’s so good to get an endorphin rush and rebuild my fitness. It’s always saddened me to see the young women at the gym who feel the need to wear make up when working out. Well, I must confess that I will not now leave the house without painting on my eyebrows, including going to the gym. The other day, I was sweating profusely in spin class – the class is sweat inducing enough as it is, let alone with hot flushes. So, I rubbed my dripping face with my towel,

“oh shit, did I just wipe my eyebrows off?”

Chemotherapy effects

My sense of taste has fully returned. Hooray! I have now resumed my tea habit, and wonderful it is too.

Also, I no longer need to take Aciclovir, as my risk of getting shingles should have receded as my immune system will have rebuilt itself.

My finger and toe nails are hanging on, and I keep them painted with dark varnish to protect them. I do have Beau’s lines on my toenails, a side effect of docetaxol chemotherapy, but these will grow out.

Beau’s lines on toe nails

Goals

I set myself a new goal of cycling a sportive at the end of August. I signed up for The Hertfordshire 100. In previous years I’ve cycled the 100 mile and 100 km routes, but this year it was just the short, 32 mile, for me.

It was a beautiful day, the sun was warm but not hot, and it felt unspeakably good to be out in the fresh air, cycling on country lanes, with lots of great camaraderie from fellow cyclists. I stopped just once, at the well stocked feed station. Whilst the hills hurt a little more than usual, I was delighted to complete the sportive. What a feeling.

It left me exhausted for a few days afterwards, but it was worth it.

I’ve also had a piece published on Shine’s website about getting through chemo. It’s good to feel my experiences may be of use to others.

Shine Cancer Support Blog

Oh, and I’ve entered the ballot for next year’s Ride London 100.

Return to work – the next goal

 

Throughout my treatment, I have stayed in touch with work colleagues, and they have been hugely supportive. Last week I popped in to say hello to my team, and it was great to see everyone again. My plan is to return to work in October on a phased basis, gradually building up days and hours. It’s difficult to know how much the fatigue will impact me, especially as I will need to play catch up for a while. I’m looking forward to getting back to work, but also quite apprehensive. I haven’t had a break from work since I started working full time in 1991, so this is all new to me.

This will also coincide with not going to hospital on a regular basis. I see my oncologist at the end of September, but will then not have any appointments until January 2018, when I will have an MRI and mammogram. Strange as it may seem, there is a comfort in going to the hospital so frequently, and in being able to be so focussed on my treatment and recovery. Many cancer patients say the hardest time (psychologically) is once treatment ends. So, I’m doing what I can to prepare for this.

Gratuitous photo of the cat. Well, why not?

 

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.

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