Mr Jones (Poem 17)

You drew cartoon boobs when we first met,
You marked me up with Sharpie,
You were to the point and all set,
I joked about stories for a dinner party
,

Nipple callipers and sample silicon hidden in your case,
Rolling back and forth between the private and NHS side,
Driven by clinical need, patient outcomes and pace,
Your work ethic and commitment cannot be denied.

I wish you’d had a magic wand not a scalpel,
The scans seemed certain, but they lied,
Meticulous precision could not conquer the way these cancer cells rule,
We’re still keeping on; it’s one hell of a ride.

Months later I’m back, punch biopsy of my scar inside,
Pathology confirmed what I always knew,
I didn’t need the scientific view,
No time for more surgery, more systematic treatment; more time to bide.

Started June 2019 when I found a tiny lump the size of a pin head in my mastectomy scar.  I was reflecting on surgery. 

People thought I was paranoid.  They said It was scar tissue.  I know my own body. 

Finished in October 2019 when I returned to my original surgeon for his opinion; which confirmed mine. 

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.

Here we go again (Poem 15)

Here we go again

I have paused.
I feel calm for a moment.
The train is taking me,
I am not driving it.
Momentum is someone else’s

En route to do one final test,
Timely hoop jumping will surely bring eligibility?
The adrenalin and cortisol are slowing for a rest,
They are exhausting friends of mine who fuel my agility.

Looking out across the fields, pondering the probability,
Only days before the open label I will see and know,
Recalling the last manic journey to only get placebo,
Some feel deceived;
I felt relieved,
A reason for disease progression,
A known price for future science to learn the lesson.

Whilst mostly strong, I’m aware of my growing fragility,
The cancer has had time to take hold.
I’m tired, aching and a little uncomfortable; affecting my ability,
The cumulative chemo effects, I’m told.

Once again I feel like I’m in a race,
Obstacles to go around, this time for the last space,
When I reach the finish line, it will once again begin,
New hospital, new journey, new side effects within.

I want to be hopeful, but can’t escape the reality of Triple Negative morbidity
Is giving over my body and life for a bigger cause the ultimate act of humility?

2nd October 2019

The meaning of a logo

Have you ever noticed that when a news item becomes a bit more serious or drawn out it gets a logo on the BBC? The global economic downturn had one, the US Elections, the referendum etc. Brexit has had several, a made up name and it even got a dictionary entry!  I’m clearly not that newsworthy, but as I am now about to enter into my 18th month of cancer treatment I thought it was time The Cancer Gap got a logo.  So here it is.

The beady eyed of you will have noticed it at the top of the search bar or on social media.

I could have asked or paid one of my design colleagues or contacts to do this, but I thought I’d ask my friend who is teaching herself design.  She loved working on something real.  Or so she told me.  She explored a few options and together we came up with this.  She even dragged her IT husband into the task.  This is just one of many examples I have of people in my community going above and beyond to help and to contribute somehow.

I thought I’d do this update now as its pretty slow getting all the eligibility scans in place for the trial protocol.  It is only when I’m through this that they can confirm that I will be put on the trial.  

Distinct marque

For those of your following previous posts, the tiny maggot sized and coloured piece of me that was extracted with a punch biopsy a week or so ago turned out to be malignant.  So that distinct shape, wasn’t scar tissue, fat necrosis or my paranoia, it was a mass of cancer cells that have grown from some microscopic cancer being left behind. This is why you always want clear margins, the bigger the better.  Mine weren’t clear. Ever. So this is not a surprise. 

I first felt the lump as a pin head (that’s when they thought I was a bit hyper vigilant or even paranoid) and now its the size of a sweetcorn kernel and is a adenocarcinoma (a cancer tumour made of glandular cells).  They’ve sliced this little tiny maggot up into slithers like a cucumber into tiny rounds and put it on slides.  They have tested it for hormone receptors.  It has none.  No targets for treatment.  So as well as being a grade 3 tumour, it has 2 out of the 3 markers it needs to be classed as ‘triple negative’.  The HER2 status (the third marker) takes another week or so and I’m sure it will be negative again.  So it is the same Triple Negative Breast Cancer.  This cancer can sometimes mutate to be HER2 positive, so we have to go through this motion.  Once my tumour has finished its little trip around the labs of the south west of the UK, it (or another piece from one of the other tumours) will be put in some formalin and flown to the US or Switzerland.  Whilst my body is pretty much grounded, little chopped off bits of me are able to travel passport and insurance free.

Invasive breast cancer is tricky.  It starts small and undetectable and then eventually the cells join up to cause a lump you can actually feel.  A lot of breast cancers are ‘ductal carcinomas in situ’ or DCIS and never become invasive.  These are more like a boiled egg still in its shell, easier to cut around and remove. Whereas invasive cancer is more like scrambled or powdered war time egg or a Jackson Pollock painting. 

A pathology slide showing different types of breast cancer
(Image from Memorial Sloan Kettering Cancer Centre)

One of those little microscopic bits has grown into something that is still not traceable on a ultrasound. I even sharpie-ed up the spot beforehand.  The sonographer felt it with her hand, but the scan didn’t show it.  The PET-CT and CT scans didn’t show it either as there is so much other activity going on around this place from the surgery, scar tissue and radioactivity damage.  My surgeon said he always prefers physical examination for this kind of local reoccurrence.  

‘Once again, the grope test wins over tech then, but I guess you can’t say that’. 

My response to the surgeon.

Well, that got a little side tracked from talking about logos, but at least you are up to speed.

Tune into your intuition

If I could sign off with one thing it is this: don’t delay if you have symptoms or lumps you are not sure of.  Don’t be paranoid, but get to know your body.  You are so often the best judge of any changes or suspicious activity.  Tune into your intuition. 

I already have the mastectomy scars branding me a ‘breast cancer victim’.  However, a little lump, like a logo could be a recognisable symbol of early cancer or re-occurrence.  Its distinctive design, this time of cells, the malignant or benign deciding factor.  

Either way, for me, it is always better to know and to act.

Unequivocal disease progression. Placebo.

I can’t really dress that up in a fancy headline. Before this week ends I’m going to attempt to capture 48hrs in the life of a mTNBC patient fighting the system for treatment and their life. I wasn’t going to write this post at all. Firstly I’m in it up to my neck and it’s hard to get enough perspective or space to write coherently. Secondly the situation is shifting all the time. However I think if I don’t try and capture some of these recent events I won’t even believe it happened and I’m living it. 

If you read this to the end I hope it helps you understand why sometimes people with cancer and serious disease just smile and say ‘I’m good thanks’. 

Tuesday PM

On Tuesday this week the facts came at me:

– ‘We now have unequivocal evidence that your disease has progressed and is functionally active’.  
– ‘You are no longer on the trial’
– ‘We’ve applied to unblind you and you were on the placebo’
– ‘We don’t have any immediate options at this hospital’
– ‘We will refer you to another hospital who might have something for you, but we don’t know what’

Bang. Bang. Bang. Bang. Bang. The news kept coming. 

Despite knowing in my heart that my disease had progressed, hearing it finally confirmed was brutal. Not a surprise, but a shock none the less. I felt like I was being ejected off my plastic hospital seat into the ether. Abandoned by the system and the lack of treatment for TNBC again. Left to come up with my own plan (or at least that’s what it felt like). 

But this is what I do best. It’s my calling. I make stuff happen. I go around problems. I try to look ahead as much as I can, to scenario plan my next move. I often have a strategy. I breathed, I had one here too. 

However, I was upset. Not angry, but mourning my future. Grieving the reality. Trying to accept the injustice and bad luck of not getting the drug I researched so heavily back in March. The trial that so many people helped me get on within 3 weeks of my secondary diagnosis. The hope ebbed away. I felt hollowed out. Not done, but desperate to catch a break in this relentless, once hopeful, now seemingly futile journey. 

Saying goodbye

I looked around at the wonderful NHS hospital that has held me close for 6 months. I smiled at yet another person I knew by name, knew about her children, where she trained.  I must know about 30 people by first name in this hospital. It felt intimidating back in March when I knew no-one and now I felt sad to leave the building and the people who has enveloped me for this part of the fight. I was sad. I was letting go in a way that I haven’t normally done when the bad news comes. The work on myself and even this blog meant I was feeling it deeply, not disassociating. This is good and bad. 

I walked to the train with my husband, we were in a bit of a trance. Then a switch flicked.  I literally got back on the train metaphorically and physically. I had to make a decision to detach again. To pretend this was work. A mammoth project to direct. A big problem to solve, move forward and take control of. People to mobilise and mindsets to shift. Starting with mine. I could not let this happen to me.  I had to get back in the driving seat. Fast. 

What did I know?
Who did I Know?
How long would it take my current hospital to send a referral letter?
What were my options?
Who else might have a perspective on those options?

I was manic, but straight away I remembered a kind and determined woman I had been exchanging posts with on an invaluable forum I belong to. She was on a clinical trial at the hospital they were talking about referring me to.  If it was anything like the hospital I was leaving she would have a direct line number into the trials team. I private messaged her. She astounded me with her speed and quality of response. She is a kindred sprit. She sent a screen grab of names, direct lines, mobiles and emails within a minute or so. I was getting intermittent WiFi and reception. She messaged that she thought the trial might be closed. It sounded ambiguous though – ‘thought’.  My mind was racing.  While I was in a tunnel, on her own initiative, she called the trials team.  Out the tunnel – another message. ‘There’s one place left, you’ll have to move fast’. I felt sick, but excited.

There has got to be more relaxing ways to die.

WhatsApp to my family

Whilst on the train, I used my mobile, genius-scan and dropbox to scan all the recent scans and letters I had. I copied the bold ‘diagnosis title’ at the top of the paper. I frantically tapped my recent medical history, NHS number etc. into my phone. The file I carry around and the data in my head was coming into its own. Not to mention the digital revolution. Once off the train I finished the scanning in the waiting room (If that isn’t a metaphor for how I feel I don’t know what is).

Send. Phew!

No one could say I’d missed an opportunity, by not acting fast enough. This is the exact opposite of an appropriate epitaph for me! 

I spoke to the fab forum woman (you know who you are) on the phone. It was the first time I’d ever heard her voice aurally. We have never spoken or met face to face, yet I knew her and this week she did for me what I try to do for others. She got me back into action mode fast. Thank you.

I followed up my email to the hospital with a friendly call.  They hadn’t seen my email yet, they’d just come out of a busy clinic, they hadn’t seen an email from my hospital either.  I briefly explained the situation, mindful that she probably looks after many trials and patients.  She was effable and kind, but sadly updated me: ‘That place has now gone’. ‘The trial is closed’. ‘Sorry’. 

My heart fell inside again. I slumped on the worktop. I knew it was the only 2nd line trial (second lot of treatment for a secondary cancer) in Europe that I had a chance of being eligible for. The only way to get Atezolizumab.  I’d used up my 1st line life on the previous trial and got the placebo. I felt sick and exhausted.  I was still on the phone though, chatting about trial recruitment and safety reviews. The work part of me conversed with the hospital trial manager I’d never met to understand the process and the system. I asked her to keep my details and if possible start a wait list for a place in the unlikely event that someone pulled out or wasn’t eligible. A total long shot, but I want my husband and children to know I did everything in my power to be here for them for as long as possible. 

I went for a swim. 20 lengths. A change of tempo and location. The water on my skin. I felt alive. I had reasons to be alive (to coin Matt Haig). I just had to find a way to keep alive. 

Wednesday PM

Late afternoon the next day, I had a pre-scheduled appointment with my original surgeon at my local hospital. I had planned to discuss the surgery or radiotherapy options.  Except these were no longer options. Off the table. 

It was still worth seeing him though because I wanted to understand more about the lymph glands and the small lump I suspected was a reoccurrence.  He and the breast care nurse were first class and continued the action mode.  I ended up having a mammogram. I had to laugh when the radiographer said ‘Are we just doing the left side?’. She had looked up at my naked torso before I had a chance to answer, so my response was redundant.

The purpose of the mammogram was to rule out any spread of disease in the left breast. I’ve been banging on about having both boobs off since the day I was diagnosed so it was mildly disappointing that the mammogram was clear. Whilst my breast was mangled in the machine, I could see a persistent ‘no caller ID’ call coming up on my apple watch. I’m all for answering on the go, but this seemed extreme, even comical. It might be after school club as I’d just received a text from another parent, it could be my mum…or it could be a hospital. I wriggled free and tried to answer it. Missed it. I got dressed and waited to see the surgeon again. The phone rang again just before I was called back in for a core biopsy (undressing (3rd time) local anaesthetic, shot of adrenalin (like I needed it), scalpel, core punched, tweezers, stitches, dressing) on the right side (I kid you not).

It was 5.12pm on the Wednesday. A two minute call. There was a place on the trial. If I could read the c20 pages of consent form tonight, and be at the hospital for 9.15am the next day, it was mine. I was ecstatic. 18 months ago I could not have imagined using that adjective to describe entering my body into a lottery to get either my third lot of chemotherapy or two experimental drugs (one of which is Atezolizumab). If this was fiction it would seem far fetched, but this is my life and subject to eligibility scans next week, I’m going to be able to get some treatment. It still hasn’t really sunk in.

‘Welcome back to the arena! The fight ain’t over! Buckle up we’re off!’

My youngest sister’s message to the family WhatsApp

I was awake at 5am. I got up at 6am and travelled to the clinic. I met the new oncologist, signed the tome of consent paperwork and as of lunchtime we might have a treatment plan. Just a few more scans, blood tests, ECG’s and biopsies and we should be done. So that’s next week covered.

Telling the kids

We updated the kids this morning as they have antennae for a change of mood. 

‘Mummy’s cancer lumps aren’t shrinking anymore and it turns out that I wasn’t getting the proper medicine, but the good news is we found another doctor and he’s going to try and give me a different medicine’. 

That’s what you call the distilled version. 

‘Why didn’t they give you the proper one the first time?’ As an adult it’s pretty hard to accept the way clinical trials work and when you say it in lay terms to a child it seems absurd. Especially when you are talking about how long their mummy will live.  What’s worse for children is if I get the right drug it will probably make me tired and ill before it even starts to make a dent in a tumour. 

Cancer and its treatment are impossible to explain to children, but we have to try, we can’t shut them out.  Anyway, that’s a post for another time, I’m off to watch Fleabag at the National Theatre Live. 

Friday 20th September 2019

Isn’t it all a distraction until we die?

I have been distracting myself quite nicely this week by filling my time with productive ‘busy-ness’. I often do this when I don’t want to think about big things. It drives my husband crazy.  Watching telly and reading books are tricky as my mind wanders easily and there also seems to be someone dying of cancer or being diagnosed with it on every channel or page.  I guess that’s representative as 1 in 2 of us will get cancer and 1 in 7 women will be diagnosed with breast cancer.  It’s still annoying when you are trying to get away from cancer for a bit.

I can’t wait for next month and breast cancer awareness! It’s always annoyed me even before I had breast cancer – all those pink ribbons and decorated bras. Granted the awareness job cannot be denied – 5,000 people will be diagnosed next month. However, that pale pink ribbon seems a bit pathetic when it’s the second most common cause of cancer death in UK women.  That accounts for about 11,500 deaths a year.  So roughly 31 women died of breast cancer yesterday, today, tomorrow and the next day. 

When you spend time with women or being a woman on chemo for life, fighting the spread of breast cancer, dealing with lymphoedema, mastectomy nerve damage, one or no boobs, skin mets bursting out of their chest, a dainty pink ribbon seems a bit trite. It has become a ‘thing’ in its own right and I wonder whether people see beyond knowing what it stands for?

God, there’s two weeks to go and it’s already winding me up. I’ve also got to get through the Macmillan Coffee mornings. Last year I was invited to several and most people didn’t know I had cancer. At least this year I’m out and proud, maybe I’ll go in sequins and represent cancer pride? I’m clearly not proud to have cancer, but I am proud that I am still here smiling (mostly). I am not going to hide my cancer (diagnosis) in any closet. I am also proud of my friends and family for all their support and ability to hold themselves together (around me at least). 

So apart from turning out cupboards and tidying sheds (can’t blame the steroids anymore) I’ve also been doing some ‘nice’ things. 

I’ve always had a bit of a creative side. I like painting, design and making things. I’ve resisted getting back into painting for fear of what might end up on the canvas.  I thought the anger (which is only recently making an appearance) might spill out through the end of my paint brushes creating a disturbing legacy of my inner mind. Stuff obviously needed to come out though, which is why I think the poems turned up in my life at the beginning of this year. 

Last month I signed up for a last minute art course at our local art place.  I saw it on social media late one evening and thought ‘I fancy doing that’.  Often this would be accompanied by ‘one day’, but I’m more of a ‘now’ person than ever before (for obvious reasons).  It’s very liberating.

If there is something you love doing or think you’d like to have a go at, do it. Don’t wait. 

The course was in geli plate printing. You use a silicone plate a bit like a giant slice of posh grown up jelly dessert or quince jelly on the side of a cheese board. You use this instead of a press or a screen to make a monotype print. I have never done this before, but I did textile design and screen printing at school and I absolutely loved it. I still have my work in the loft somewhere (that’s next for the turn out). I assumed the course was for a couple of hours. It was actually for a day. Husband was very accommodating, so all worked out brilliantly.

The course was absorbing, fun and very therapeutic as no one on the course knew me or that I had advanced cancer. The technique was also very conducive to my state of mind as it allowed me to be totally captive to something else with little room for the busy mind to race.  The teacher taught us a 3/3/3 principle which was the number of seconds you have to put the paint on, arrange your relief material (leaves in this case) and print. Then peel off and print again. Then more paint and go again. It was fast. Fast process, fast results. The total opposite of treating cancer. No time to think. Perfect for my anxious cancer obsessed mind. 

So since the day I spent covered in paint and immersed in creating prints at high speed, I have bought my own press and had a go at home.  Aside from the resulting prints (which are of mixed quality and success) the actual process was so engaging and cathartic that I’ll be trying it again. 

It got me thinking much more deeply about art and creativity. 

We tend to judge art on the end result and not the enjoyment of the process. The thing, not the experience. I genuinely like experiencing and trying new things. I get a thrill from learning to do something different, from the learning itself. It’s a cliche, but I guess we could all learn to enjoy the ride and not focus solely on the destination. After all, we are all going to end up in the same place.  The ride differentiates us. 

Statistic from Breast Cancer Care and Cancer Research websites.

A magic cure for cancer

(Image borrowed from the article below and credited above)

1 in 2 of us will get cancer.  

Cancer effects communities, not just individuals.  It is my family, friends and wider community who have held me upright or put me back upright.  

It is a harrowing and relentless journey, so I need this support group. In their bid to help some of these ‘cures’ have been offered by my community and in my own sometimes desperate search to stop the spread I have looked into lots of these ‘cures’ myself.  

Social media, tabloid media and forums are continually peddling these conspiracy theories and magic bullets. As a cancer patient it is exhausting and disconcerting to constantly have to fend these suggestions off, research them or question your own traditional yet barbaric medical choices.  

In the end we don’t know what will or won’t work because there is so much unknown about cancer and it is a catch all phrase for so many different types of cancer. 

What I do know is that I am donating my body and life to helping pharmaceutical companies, the medical profession and top teaching hospitals search for a cure or at least something that elongates the life of people with Triple Negative Breast Cancer. It might not help me, but it will help others. This is not how they research whether turmeric or kale (and those are sane suggestions of things I like) cures cancer. 

Only 15% of breast cancers are Triple Negative. Even this is a catch all bucket for aggressive, invasive breast cancers they don’t understand or can’t easily predict. We do not have any targeted therapies for this kind of breast cancer. The prognosis is grim. We are not the same as your Mum’s neighbour’s best friend who had breast cancer and a magic potion bought on line will not save my life. 

There is a place for complementary therapies in self and palliative care (another post I’m sure) but not in curing cancer.  

I know you don’t know what to say or do, but a good place to start would be checking out or reading around a claim before you pass it on to someone as the answer to every cancer. Something you read on Facebook or in The Daily Mail is unlikely to be something that the oncologists and pharmaceutical companies have missed. 

This article from earlier in the summer articulates this beautifully. This was shared in one of the forums I belong to. They have moderators who give their time free to keep the forum clear from people pretending to have cancer and then peddling hope for profit. Seriously.

https://www.theguardian.com/science/2019/jul/14/cancer-fake-news-clinics-suppressing-disease-cure