'Brave the shave', glosses over the loss.

This is a post I have started and not finished many times.  Either events have over taken the post or I can’t bear to transport myself back to the first dalliance with barbaric chemo. But on the cusp of making a decision about new treatment which will likely see me lose my hair again I feel I must revisit it and commit to paper.

I’m not going to write about all the side effects, suffice to say there were many and some still keep coming from that early treatment. It’s also impossible to unravel what was chemo related and what was menopause related. I went from not even being peri-menopausal to post menopausal overnight.

It was like throwing yourself of an oestrogen cliff.

Bone pain, mood swings, night sweats, hot flushes and all sorts of other intimate issues were thrown in the mix with cancer and its treatment. However, the mouth ulcers, bowel issues, blurred vision, chemo brain, neuropathy, hand and foot syndrome and nausea were all less psychologically complex than the hair loss. 

Nothing shouts cancer across a busy playground than a bald head.  It is the icon of cancer patients. It incites pity, cocked heads, patronising conversations, hackneyed platitudes like no other. 

Yet being bald wasn’t actually that bad.  

Going bald was a whole new ball game. All the publicity about ‘braving the shave’ for me  glosses over the loss. 

The cold cap

Rightly or wrongly I decided to try and keep my hair. I endured the cold cap on my first ever chemo back in June 2018. This in itself is an experience! You hair is sprayed all over with cold water, then imagine putting your head in thick rubber swimming hat filled with tubes like the pipes in the inside of your freezer. This is then secured in with a neoprene skull cap and attached to a generator and a water pump. The cap fills with freezing cold water which is then turned to ice on your head. The weight and constriction are intense and that’s before you add in the cold. Wowzers!

As my daughter said ‘Mummy, was it like a really bad ice cream headache?’ ‘kind of’ I managed to reply!

The wonderful nurses at my original hospital managed expectation brilliantly. They said when you think you can’t handle it any more, take a deep breath and wait another 10mins and it will be ok. I did this and it was. Because my head was so numb I stopped feeling anything except the weight of the cap. You have to have it on an hour before and an hour after so I had it on for about 4hrs. Apparently it freezes your hair follicles and stops the chemo getting to you. 

Like most series of chemo I had six three weekly cycles. i started with FEC-T. A cocktail of 4 drugs delivered individually via i/v, interspersed with the steroids, flushes and Piriton. So I only had to endure the cold cap another 5 times. I thought I’d give it a go.

Except my hair started falling out 10 days after my first cycle so it seemed a bit pointless. So a few weeks after I discovered I had cancer I had to deal with the very real reality that I was going to lose my hair. I had yet to tell all my friends and colleagues I had cancer, I hadn’t absorbed it myself. I was still fulfilling work commitments and had not told clients. 

The Gig

A few days later I had to deliver a lecture on Innovation and a facilitated workshop at the London Business School. My friends and family thought I was mad, but I’d worked on winning this piece of work for almost a year and I’d done the prep so I only had to stand up, smile and deliver. This seemed easier than uttering the words ‘I’ve just found out I have advanced breast cancer and I’m on chemotherapy’.

I’d been on chemo for 3 weeks and my blood counts were at their lowest. I was seriously immune compromised. I decided that the train and tube wasn’t going to cut it. It was bad enough being in a room with 80 people. I either cancelled (which I’ve never done) or got a taxi and got on with it. 

So the morning I had this lot in my hand I got in a cab and delivered. I had to make a last minute jacket change as the navy one exasperated the hair which was literally falling out as I moved. The session went well and I loved it. They thought I was a right diva when I left and jumped in my private car to take me home. If only they knew! 

The week before the LBS gig, I panicked that all my hair was going to be gone in days (based on the rate It was falling out and the amount I found on my pillow, in the plug hole and on the floor). 

The Wig

I needed to get a back up plan, I wasn’t ready to stand up bald in a room of 80 people. I needed to source a wig. And fast. This is not as easy as it sounds. In the NHS you need a referral, then an appointment and then they ordered something in. After a bit of phoning around I found a wonderful women about 45 mins away from me. She had no appointments, but put me on the cancellation list. She also asked me to send some photos of my hair via email. Within minutes of sending the email she called back and said she was pretty sure she had a wig in stock that would suit. Originally she’d talked about ordering 4/5 in and then me trying them and deciding. I was comfortable with this. However, she sounded very sure about the wig in stock. Sometimes you have to trust someone who specialises in something. I rang a good friend who I knew would be up for and not freaked out by the trip and would give an honest opinion.

Off we went and had an absolute ball!

It was honestly one of the most unexpectedly fun outings Cancer has gifted me. The wig was so perfect it was weird. It was my hair, but on a good day. The woman styled it and showed my how to brush it, wash and condition (I kid you not) and dry it. All things I had no clue about. Suddenly staying in to wash my hair would be a reality! 

My hair just before Chemo started
The wig (parting swapped sides, but nobody noticed!)

My wig was expensive, yet another hidden cost of cancer, but it was worth every penny. I didn’t need to wear it to the LBS, but the day I bought it I wore it for school pick up. It was a tight fit as I still had quite a lot of hair despite what had fallen out. Two mums were in on it, but apart from that no one knew. 95% of the playground didn’t know I had cancer. I got several breezy ‘nice hair cut’ ‘you look well’ comments and one Mum who has the same hairdresser said she loved the cut and had sarah done it? She touched it and said how well it sat at the back. I felt sick inside, dreading it coming off as she touched it, cringing as I lied about my cut! We laugh about this day now. The best thing about it was both my son and my daughter didn’t even notice. When I took it off a home they were gob smacked, but also my daughter was relieved as she was most worried about a ‘bald mummy’ picking her up from school. The thought of the hair loss bothered her a lot, she still goes on about it now. 

I am now on the cusp of having yet another change of treatment as my disease has progressed again.  Finally the scans and oncologists opinions agree with my own experience of the growing tumours in my axilla and the ever growing skin and chest wall metastasis that I have to look at in the mirror and deal with the chronic pain of. Despite what is in plain sight they don’t  show up on an ultra sound or CT scan. Finally I’ve been referred to stage 2 of the trial and am hoping I’ll pass eligibility and they’ll give me immunotherapy. I’ve been campaigning for it for over 12 months and have had the placebo/control in the last 2 trials so this has to be 3rd time lucky. Surely. 

The thing is immunotherapy might not even work but the good thing (I think) is I get it with another chemo agent called Eribulin. This will be my 8th chemo agent and my fourth series of chemo treatment. I remember when they first told me I had cancer and I’d have 18 weeks of chemo, nowadays I get worried when I’m not on it or it options are limited, which they are.

This chemo is likely to cause complete hair loss again. I’ve had hair thinning with the last two, but not complete loss. Yes I have a great wig, but I’m still not relishing the thought of the cold cap or losing all my hair again. That’s why I thought I’d finish this post.

People who ‘brave the shave’ for charity do not go through the almost mourning period of losing every hair on their body. They get the end result not the tough journey to get there. It’s not just the hair on your head either.  I never knew how much I liked and needed my eyebrows and lashes. Aside from the fact that they frame your face and eyes, they also stop sweat running in your eyes or flies sticking on you eyeballs. The hair up my nose also stops pollen going right up it and warms and filters the air we breath in. This combined with no mucus makes your nasal passages very uncomfortable. Never take body hair or lubrications for granted! 

Braving the Shave

Eventually at the end of August 2018 I could not deal with the patchy hair anymore.  I have worn a hat or head scarf for most of the summer (wig was just too hot for the summer of 2018) with little bits of hair coming out the bottom.  So it looked like I had hair.  The bald patch in the middle was hidden from view.  It was however always waiting for me when I got home, when I cleaned my teeth before bed and again in the morning.  Time to take charge, the hair had to go.  My husband shaved it off and it was massively liberating.  Should have done it earlier.  I still wore my wig for most of Autumn.  

Wig, bald, scarves & regrowth

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Look good, feel better

In the middle of Autumn I did a course with a small, but important charity called ‘Look good feel better’, they give you a bag of cosmetics and a 2-3hr session on painting on eyebrows, putting some colour in your cheeks and a bit of a spring in your step.  It was fab.  The BBC happened to be filming the day I had my session and most participants weren’t keen to be on film.  I said yes as I thought the charity was good and it might help funding. Plus once you’ve had a boob off and half the county gawping at and touching your chest, you get a bit blasé about these things.   A few others said yes too and they made the film below that was on the BBC news.  In fact it got slightly more coverage than I had anticipated.  I was unlucky enough to be the mug shot on the front of the clip, double chin and all.  As I have since discovered that it is all over twitter and all the staff at my local hospital had it on their newsletter so I thought i’d include it here too.

https://www.bbc.co.uk/news/av/uk-england-berkshire-45983972/cancer-treatment-patients-get-beauty-workshops

Click link above not film

A slightly longer post than anticipated, but hopefully you get a bit of perspective on the highs and lows of hair loss.

Let’s hope I keep my hair on for this next lot of treatment.

15th January 2020

The Joy of the Magic Doorstep

“Not all of us can do great things.  But we can all do small things with great love”

Mother Teresa

In my experience of an advance cancer diagnosis people don’t really know what to say. Questions to understand it seem insensitive and risky as you have to be prepared for the answers.  Words of reassurance are tricky.  A lot of people opt for the head cocked and pitiful smile when they see you or just plain avoidance.   However, there are a pretty large and surprising number of people who opt for action.  

As an action junkie I relate to this as it is what I have done in similar situations. When you feel devoid of words, action speak volumes. Sometimes you just have to do something.

Back in May 2018 I was astonished with the direct and decisive action people from all areas of my life took. The night I got home from receiving the diagnosis one of my sister’s just turned up despite being told I was fine and didn’t need her to come.  Obviously, I was about as far away from fine as you can be, but I had to pick the kids up, feed them and get them to bed without falling apart. We didn’t tell them straight away. We didn’t know what to say. We hadn’t even told immediate family. We couldn’t find the words. We were in a trance like state. In fact we had a prior appointment with a will writer to do our LPAs and update our wills. So that is what we did on the evening of the day I was diagnosed with invasive advanced breast cancer. 

You can’t make these things up. 

In a film that would seem ridiculous, but in fact it was what we did that evening. It turned out to be a very practical thing to do. Having one of my sister’s there was a blessing as we were able to have difficult conversations about guardianship. Our original wills were no longer practical given the very real possibility that at least one of us would be taken too soon. 

My sister also took on the unenviable task of telling the rest of the family. After that, the wheels were in motion, everyone went into action mode. 

Within days of diagnosis, my sister said, ‘You’re going to need a big freezer’ I replied ‘what for?’ She said ‘all the meals’.  

She had inside knowledge from friends with a cancer diagnosis. It was a matter of days before my Dad turned up with a freezer and my extended family brought home cooked freezable food.  

But that wasn’t what my sister meant. 

Nothing could prepare me for the deluge of home cooked meals that would turn up on my doorstep as word got around. I’ve joked before about the number of lasagnes, but not one went to waste. Every casserole, spag bol, curry, cake, soup, biscuit, flapjack, crumble  and many more dishes of love were gratefully received.  They nourished us through those early trance-like days.  The blur of appointments and scans with news getting worse by the day.  We put one foot in front of the other and one home cooked meal in the oven and we got through it until we could think again.

We are still lucky enough to receive meals today and they are all a gift of time. Time that we don’t have to think about preparing a meal. Time we can spend with each other or on tasks that seem to take so much longer now.  It is not something we expect or always need, but it always makes us feel cared for and loved. One person in particular has never stopped giving us meals. She’s a wonderful cook and even has a drawer named after her in our freezer. There’s always something good in that drawer. We call her our ‘Cancer Angel’ and she is a very special woman who I have got to know in a deeper way since being diagnosed. 

As an aside, my then 6 year old, found all the meals confusing. She asked me if we were poor, now I had cancer. I was perplexed.  Where had this come from?  But soon I understood when she elaborated “but Mummy you always say ‘you have to go to school, Mummy and Daddy have to go to work to earn money to put food on the table and a roof over our heads’ and you haven’t been to work as much and people are already bringing us food”.

It all made sense from a 6 year old’s perspective.

All sorts of kindness poured onto our doorstep and through our letterbox. People and gifts showed up in all sorts of guises from all corners of our life and the world.  I was and continue to be truly humbled by peoples’s kindness. Amongst other things, we have been lucky enough to receive flowers, beautiful, honestly written cards, poetry books, magazines, books, Chemo kits,  fruit and veg, solid gold engraved lego brick, jewellery, good luck charms, bracelets, Christmas decorations, charms for good health, ice pillows (for night sweats), shawls (when my arm was too big for a coat) and just last night aloe vera socks for my peeling bleeding feet.

We also got several tomato plants and a courgette plant. One lot even arrived with its own grow bag. I loved planting these and enjoying the fruits of my labour all summer long. Reminding me of the thoughtfulness and kindness around me.  Feeling a sense of satisfaction when picking the fruit and making soup.  The simplicity of nourishment.  Overall we felt the power of kindness and community that can easily be forgotten or taken for granted in our busy and overly digital world. The simple gifts of kindness, the offers of help, lifts to appointments, walking companions, sourcing of outfits for school plays and childcare are invaluable. They also made me feel alive and that I mattered to lots of people. The outpouring of love and the genuine, real conversations I have with people I’ve known for years and other strangers has been humbling and a joy. I was never one for small talk.  I favour real conversations.

I have been toying with writing this post for a while. A sort of wide scale thank you note to everyone who has held us in their thoughts, sent us messages of encouragement, made us laugh and smile and held our hands through this unplanned and daunting journey. 

I am a strong person and I still favour helping over being helped. I am delighted that so many people ignored this and just stepped in. For the last couple of years we have donated to charity rather than sending Christmas cards. I also commit to phoning people who live further afield and have a proper chat with them, reconnecting rather than sending a card year after year. This year I haven’t phoned very many people. It is not because I haven’t got the energy, but it’s because I am more connected with the people that matter than ever before. This is one of cancer’s blessings. It cuts out the crap and brings families and friends closer together. Or it certainly has in my case.

This time of the year seems like a good time to celebrate and think about the importance of community and kindness. I’ve alway been a fan of and contributor to both. It matters and it makes a difference. Merry Christmas and thank you.

“It’s not how much we you do, but how much love we put into what you do that counts”

Mother Teresa

I am not religious in the traditional way and yet despite Mother Teresa’s catholic origins her words resonate with my beliefs. Her desire to put common humanity above religious divisions is something we should all strive to do. I do believe in spirituality and the sense of connection to something bigger than ourselves. Sometimes that belief and way of being is the only thing that keeps me going. We all need to look beyond ourselves.

24th December 2019

“You look so well”

(For someone with terminal cancer)

Why do people constantly say this to you? Mostly I do look well. I make an effort with skincare and a bit of make up. I have a decent hair cut (as much as you can with post chemo curly regrowth). Despite my distorted and ever changing shape I try to wear clothes that make me feel good (balance of comfort, fit and style). For all intents and purposes I do look well. I am well.

Yet I have terminal breast cancer. I use that deliberately jarring word because unless I throw myself under a proverbial bus it is the advanced, secondary, stage 4, terminal, metastasised breast cancer cells that will kill me. (Although I have had a brief dalliance with a pulmonary embolism, but that’s a story for another day).

So, what does someone with stage 4 breast cancer look like? Even a year ago when I had stage 3 I didn’t think stage 4 would look and feel like this. This is why people sometimes write you off or feel pity for you when you have advanced cancer – they think you will look and act ill. I think it’s why they say [but] ‘you look so well’ in a surprised tone. They don’t fit the stereotype of someone with advanced cancer on their third series of chemotherapy and 7th chemo agent. It’s ignorance, maybe denial. Like me they think a stage 4er would be too ill to do most things.

Not me.

I’m still doing my upmost to grab life with both hands and be normal. I’m also on a quest to give people a perspective of what it is like to have to wake up every morning and face another day of tablets, treatment, appointments, fights to be heard and taken seriously.

The fight for your life every day.

The cancer is one thing, but the system is another. My daily fight is like this:

1) The system (disjointed, stretched past breaking point NHS system, drug company protocol, NICE guidelines, insurance company, the postcode lottery)
2) People’s ignorance, attitude and outdated stereotypical view of cancer
3) Treatment side effects (historic, cumulative and current)
4) My own demons and expectations about what I can do
5) The cancer
Once I’ve done that there’s the normal hectic life of a young family and that’s before the Christmas madness.

Despite this pile of things to battle I still want to enjoy my life and contribute to society. I crave normal, not extraordinary. I still want to help out on the school fireworks ‘glow store’ even though I couldn’t officially commit and just jumped on, on the night. I still want to do the garden, swim, cook, walk and work. Yes work.

I feel alive when I work. I feel like me. And that’s actually all you want to feel when you are fighting for your life. I was born to work. I love it. The week before last I did a piece of work designing all the facilitation sessions for a conference for 250 healthcare professionals. I trained the facilitators and made small talk through a sit down dinner. I smiled and offered paracetamol to the man with a cold and a headache. I did a good job. I contributed. I used my busy brain to help some other people and I earned some money. I was delighted to have the opportunity.

I checked out of the hotel the morning after and did battle with flooded rail lines. I got sent to Coventry (literally). I went around the problem (that’s what I do) and got home to dump my bags. I then turned around and got a train to London for yet another hospital appointment.

And you know what they said?

‘You look so well’

And I did. Yet, I was tired. My feet and hands were red and stinging from chemo induced side effects (apparently it’s the drug leeching out your capillaries) . I didn’t have enough oxygen from my low red blood count to climb stairs or walk far, my lymphoedema arm was enormous and heavy (32% bigger than my left arm). I could no longer get my coat on my arm. But I was still smiling and still keeping on keeping on.

It is a total paradox, on the one hand I want to be treated normally I am still me after all. On the other I am struggling mentally and physically to hold it together. I want and need to be able to park nearer or to have a seat on the tube, yet I look well and I don’t want special treatment. I am multi faceted and a contradiction.

I think I need to be kinder to myself. To give in to more help, so that I can get home from a whole day of hospital appointments in London and still have enough energy to help with the Roman project and read bedtime stories.

I suppose what I’m saying is I want people with cancer to not be marginalised by society because they don’t fit the mould of sick or well. Like me these people have much to contribute, but equally we need a hand with a few other things so we can keep doing so!

I want to be treated to live, not live to be treated.

Time for some cheer

I know the weekend’s post was a bit hard going. I lived it and reading it back was tough enough for me. So time for some cheer.

That’s the thing about cancer treatment; one minute you are crawling on your bathroom floor, the next you are whizzing around London having a fine time. Then you’re shattered again. ‘This too will pass’ has become regular self talk for me and many other cancer thrivers.

Today I made the trip for 10 vials of blood to be taken and tested to make sure all my organs are behaving themselves and have managed to process the 10 of the 14 days drugs I poisoned myself and hopefully the cancer with earlier this month.

Good news is, my liver and kidney function and my red, white and platelet cell factories seem in fighting spirit. And so too am I.

I’m still adjusting to the peaks and troughs of this new medication, but hopefully with a reduced dose and three lots of anti sickness drugs by my side I will navigate cycle 2 (and half term (!)) with a bit more grace.

I was lucky enough to get the prime viewing seat for my bloods today. The rain stayed away too.

Today involved, being weighed (1 min incl. lace up shoes) taking some bloods (10 mins), seeing an oncologist (which was less than 5 mins as I’ve been in and out with bad reactions so they are up to speed with my side effects), making an appointment for 3 weeks time (1 min), filing a prescription (2 mins) collecting two lots of drugs from two different places (5 mins) total to collect and walk between two places. So 24 active patient minutes. I left my house at 8.30 and got back to my town in time for a work meeting at 5pm. Granted the travel time is a big chunk of that, but I still spent over 5.5hrs waiting at various places or travelling between parts of the same building.

There has got to be some efficiencies to make there surely. I even transported my own bloods and handed them to a nurse to hand deliver to the lab, because the porter system can add another hour at least. No wonder we have a productivity problem in this country – all those people not working, but waiting, or waiting with someone who’s waiting.

They even have a poster to help manage your expectation

I’m an impatient patient. You may have picked that up! I hate inefficiency. If I can see a quicker, better, different path I like to take it or find it.

That said, Knowing that today would be a waiting day, I planned some jobs and some cheer. In between sorting my annual accounts, finishing a poem, drafting this and picking up some presents I managed a bit of cheer. I stumbled upon a cafe behind the hospital and decamped for some non-vending lunch. I then met Jimmy of ‘London Hearts’ fame for a coffee and to pick up my commission of our very own ‘Cosmic Heart’.

As I had expected he was a lovely bloke and very humble about his talents. I started to shake his hand, but that felt odd, so I gave him a big hug, which felt right. We chatted a while about his work, my blog, legacy, reaching out and connecting to your loved ones and inspiring communities of people to do the same. I am so glad I stumbled upon those hearts, pressed send on what seemed like a slightly unusual email and met the heart behind some of the world’s street art.

Despite the waiting, today was a good day. I feel good.

Sometimes that’s enough.

A Bitter Pill (or 10)

There is no doubt that mentally it’s tougher to physically swallow chemotherapy. Not least when you were hoping to avoid it and try immunotherapy.

Breakfast in bed never looked so appealing.

The last 3 weeks have been a blur. I’m hoping I’m through the worst. This post has been written a bit intermittently. 

Most of you know by now that I was on the placebo in the last clinical trial. After a bit of a scramble, I was lucky enough to get on another clinical trial. The last place globally, with a chance of getting Atezolizumab. 

Unfortunately I got the control, so as you know I’m not on immunotherapy I’m on chemo again. I’m so over chemo.

Passage produced the first weekend of the new chemo, Capecitabine:

I am now dictating this in the dark with my sunglasses on because I’ve been in bed since Saturday night, it’s now Monday morning and I have been pretty sick since Sat. This is my seventh type of chemo drug and my third block of chemo cycles. Naïvely I thought that this oral chemo would be convenient and fit around my life.

Oh how I was wrong.

I feel more unwell than when on any of the other chemos. When you sit and think about it, or lie in my case, the chemo pills are going down my throat and into my stomach and through my intestines, which is a lot of surface area for a cytotoxic drug to be in contact with. I can only assume that this is why I feel so ill.

It may also be the dosage which they may alter, but for now I am still trying to swallow 10 bitter chemo pills a day. I can just about handle swallowing them, but once they have melted or partially melted in my stomach, bringing them back up again is one of the most unpleasant things I have had to endure.

I cannot really put into words the feeling of that acidic liquid burning my throat on the way out.

I really thought the first lot of chemo I had back in June 2018 was the worst (which is why I have yet to write about it properly), but this seems to have really knocked me for six.

As truly revolting as the vomiting is, the headache which feels like my head is permanently in a vice and the photo sensitivity are debilitating. I’ve been lying in a dark room since Saturday night. Unable to read, watch TV or talk too much.

I am unsure whether my body‘s reaction to this is just a chemical one or if I am psychologically rejecting the control; the injustice and all-round bad luck in missing out on Atezolizumab again.

Dictated notes from the first lot of Capecitabine.

I am determined to blaze through this drug in the hope that it is doing to the cancer what it is doing to me. The week before last I ended up back in the hospital in London because the vomiting wouldn’t stop. After some monitoring and a lot of hanging around, I was sent home with additional anti-sickness drugs (or ‘Auntie Soonest’ as my dictation wrote the first time. I quite like that, she sounds like just the kind of person I need right now!).

It is slightly surreal waiting in this Cancer Assessment Unit looking through the pouring rain at the twinkling lights of the city. The streets below packed with the aftermath of ‘Extinction Rebellion’ and the state opening of parliament. Looking out at these two different fights and the enormity of their meaning make me and my plight feel insignificant. I like that. Big cities, vast skies and coastal vistas all make me feel small. They calm me.

After the first lot of sickness I was given 48 hour respite from the chemo to then begin again. 

Once I started up the chemo tablets again it didn’t seem quite as bad; then three days later it started. I had the headache, I was dizzy I couldn’t really talk I couldn’t read or watch TV. Once again I am dictating this into my phone in the dark.

Chemo is a bit like childbirth. No one really tells you what is is actually like and everyone’s experience is different anyway. Universally it’s pretty horrendous going through it, but the potential reward is worth it. Moreover the end result seems to wipe your memory of the enormity of the process of getting there. However, unlike the birth of both my children I was not rewarded at the end of the last two gruelling journeys.  That has certainly been my experience thus far. All that pain and horror for nothing.

Actually not nothing: disease progression.

I am left wondering if this particular chemo is so bad because unlike the others it’s really doing the job. That is all I can grip onto as I endeavour to endure another day.

Cancer is truly an evil bastard. Its treatment is something else. It is impossible to fathom the paradox of feeling relatively well when you are off treatment, with tumours growing everywhere, versus being on treatment and being debilitated.

Mummy I preferred it when you just had cancer, you were ok then, I think the chemotherapy is making you ill, can we go back to you just having cancer?

As my daughter said, right back at the beginning of the first lot of chemo. She was six then.

That’s how I feel right now.  This is why people stop treatment. At the moment I am wobbling my way along a tightrope between tolerable drug toxicity and drug efficacy.

My daughter is seven now. She has an amazing ability to cut through the crap and describe the heart of the situation. For example, when we finished chemotherapy the first time I went on to have three operations, each one hoping to get a clear margin around the cancer. Each one failing in its mission. As I got the last pathology report back in early December 2018, I was truly devastated to discover that there were still cancer cells in the margins. Teeny tiny bits of cancer in my blood and lymph vessels. I knew these where tributaries of two crucial fluid systems that move stuff around my body. This did not sound like a good place for cancer cells to hang out, however ‘microscopic’ they were. My surgeon told me I would probably have to have adjuvant chemo (after surgery) as well as the 18 weeks of neo adjuvant I had endured before surgery. 

This was the first moment I lost it in front of a consultant. My head crashed down on the other side of his enormous oak desk.

Bang!

“F**k!“ I screamed.

When we tried to explain this to the children, my daughter’s reaction was:

So mummy instead of being nearly at the end, we are actually right back at the beginning.

She nailed it then too.

It seems that killing cancer has to happen in a way that makes it feel like it’s killing you first.  Chemotherapy is what you call a systemic treatment. It is undiscriminating, attacking my whole body because the harsh reality is nobody knows where those microscopic cancer cells are hiding now.

So long story short, the same thing happened when I restarted the Cape (as it is known to its friends(!!)).This time I decided not to go to A&E. I took my pulse, temp and BP at home and they were all OK (that’s the first 2-3hrs of being in A&E covered). I didn’t have an infection. I was massively dehydrated and exhausted from vomiting. We phoned the hospital hotline again and said we were stopping the drugs in order to get some fluids back into me. We did and within a few hours I was improving. Once well enough (ish!) to travel to hospital, the oncologist came to the same conclusion as me. It was the tablets and nothing more sinister.

Whilst my reaction was a bit adverse it wasn’t unheard of.

I checked the dosing levels for my body surface area (my husband worked that calculation out) and we felt I was on a pretty high dose. Tipping into the criteria for 10 tablets by a fraction. Chemo sounds like a very precise treatment, but the truth is the dosing levels are quite a blunt tool. It’s unbelievably a bit of trial and error. Thing is, it’s me that is being experimented on. I have had to have my dose reduced on every other chemo drug due to toxicity and adverse reactions, so I guess this is where we are headed.

So after some good peer to peer discussion the oncologist and I agreed that I would give it another go at 80% of the original dose. So only 8 tablets a day now. I’d also have a break until the beginning of the next new cycle to let my body recover. This has given me a week or so to get back to myself, which aside from the cumulative cancer side effects I am now. Hence I thought I’d better get you lovely lot up to speed.

I want to give this chemo a good go because as I have said before the list of possible options for TNBC is very short. I’d be a fool to write one off at the first (few) hurdle(s).

New dose, new attitude, new drug administration regime with three lots of anti sickness tablets.

Let’s do this.

Again.

Street Art Update

Amidst all the trial and randomisation anxiety of last week, you may recall I promised you I’d get in contact with Jimmy C of ‘London Hearts’  and ‘Shakespeare’ portrait fame. 

I did this last Tuesday and both himself and the guy who commissioned the piece at Network Rail got in touch overnight.  A great example of how we should all reach out to others, especially if they have inspired us and even if we don’t know each other.  We are after all, all humans with an inate need to be connected, noticed and appreciated.  They were both pleased to hear the positive impact the work had had on me (and my family). I have agreed to credit the work where possible and of course I am not about to make or sell products that depict Jimmy’s or any other street artists work. So all good.  

While researching Jimmy’s art I also noticed that the Shakespeare piece has had an update (see below) since earlier in the summer. 

Latest image of Shakespeare at Bankside by James Cochran (AKAJimmyC)

Nothing stands still, it all evolves.  In the same way that the recent rain has bought its own iteration of the drip painting under the arches. 

On speaking to Jimmy I also learnt that the Shakespeare piece is available as a print for £60 from The Globe. He didn’t ask me to promote this, I just thought I would. 

I’ve also commissioned a canvas of the cosmic hearts to hang in our home and remind us all that love is the best response in dark times.

12th October 2019. 
(Posted 16th October after a brief respite from chemo induced vomiting etc.)

A dose of chemo reality check

Chemotherapy is barbaric. It is counter intuitive to everything we know and expect from medicine. It makes you feel poorly before it can make you feel better. Often it doesn’t make you better.  It just slowly eats away at your insides and messes with your head until your bodily functions and processes are effected. Then, in theory it starts to impact on your cancer’s ability to grow. 

That’s if you’re lucky, with Triple Negative this is often a short lived effect.  Sometimes it doesn’t work and the cancer just grows. After 18 weeks of four types of intravenous chemo last summer, mine grew. The main tumour was bigger than 96mm when it was removed. The last lot of 18 weeks chemo I had in spring/summer this year worked at first. My RECIST (Response Evaluation Criteria In Solid Tumors) was even described as ‘0mm, a complete response to treatment’. That was for about a month, until I felt it growing again. It was another couple of months before this showed up on a scan. My secondary tumour is now bigger than it was when I started the last clinical trial and it’s in other lymph nodes too, plus a local reoccurrence on my chest wall.  You can probably tell I don’t believe chemo is that effective.

You have to be dying, to want it.  Enough said.

Added to this I was always way too much of a control freak and sensible scare-dy cat to take drugs (aside from a few puffs on a spliff at Uni). Having worked for 25 years in marketing, advertising, branding and innovation consulting that’s quite an achievement and a very deliberate choice. So, it’s depressing to poison your body again and again. It is beyond comprehensibilty that the cancer continues to defy the chemo’s aggressive purpose.

It’s fair to say I’ve had a few interesting reactions to drugs in the past (pre cancer) and I’m even allergic to Red Bull. It gave me altered reality and makes me hallucinate. Even without Vodka.

So as you can imagine I’m not relishing starting my daily chemo.  

I put on my big girl pants (I think I will need them!) and I tucked into my seventh type of chemo drug last night. 

Two years ago I was ignorant about chemo. Chemo was chemo. It was a scary abstract concept that I’d seen depicted in films. It made you lose all your hair, vomit, your skin turned grey and it hollowed out your eyes. It looked grim. It wasn’t on my to do list. It definitely happened to other people. Not people I knew and not me.

And here we are. I am no chemo expert by any stretch and having looked into the ingredients and how they discovered some of them, you don’t always want to know. I’ve mentioned the mustard gas derived Cyclophosphamide before. That really messed with my eyes when it was surging my veins and my eyesight deteriorated. Others are platinum based, taxanes are derived from genus taxus which are yew trees, a tree we played under as children and were told in not uncertain terms not to touch the sticky yew berries (or glue berries as we called them). These are not ingredients you are salivating over putting in your body. That’s why for me intravenous is better. It’s a good way to detach.

This time around I’m on oral chemo. Who knew there was such a thing? It’s a tablet. Ten to be precise. Five in the morning and five at night. So ten times a day I am expected to knowingly swallow cytotoxic chemicals. So cytoxic (not that I think anything can be a little bit cytoxic) that I have to wear gloves to pop them out into a little sauce pot and then take them. I have to return the empty shells of the packet to the hospital, presumably to incinerate (or maybe because it’s a trial). Hopefully I won’t be an empty shell too, I’m not ready to be incinerated yet.

My homegrown tomatoes lovingly looked after this summer rather contrast my new daily ingredients

I thought tablets would be easier, more convenient. I’m only 10 tablets in and psychologically it’s a bit more invasive. 

Give it a week and it will be my new normal.  Or I’ll be distracted by the side effects.  

Onwards. 

11th October 2019