What does ‘awareness’ really mean?

On the last day of blood cancer awareness month and the eve of breast cancer awareness month, I am wondering what awareness looks and feels like?

Less than two years ago I didn’t know what Acute Myeloid Leukaemia was, never mind its symptoms. I first became aware of it when our good friend Gemma Thomas was diagnosed with it. I received the call out of the blue to say she’d been diagnosed and was going to have chemotherapy.  For those of you following the story in the media you will know that 3 days later we received the tragic news that she had died. We were still in shock about the diagnosis, we couldn’t catch up with ourselves at the news of her passing.  She was a happy, healthy and compassionate women with a rye sense of humour. We still miss her massive smile and rolling eyes.

Simon, Gemma’s husband has just finished a whole month of challenges to raise blood cancer awareness for @Bloodwise. Judging by social media and the rise in google searches on the subject he’s done a great job. 

A few months after Gemma’s death, I found out my cousin Trudi has AML.  My heart was in my mouth, I could not comprehend that a disease I was not really aware of had taken someone in my life and could take another. I am pleased to say despite being put well and truly through the wringer on chemo, isolation units and stem cell transplants she is doing brilliantly.  Like me Trudi is passionate about raising awareness of her form of cancer and what it is like to endure the treatment for cancer.  I’m super proud that she made a film for Leukaemia Care to bring to life both the difficulty in spotting the signs (and she is a nurse with bags of medical knowledge and understanding of the system) and the mental and physical harshness of cancer treatment. 

Trudi Archer – Acute Myeloid Leukaemia (AML) – Spot Leukaemia

https://www.leukaemiacare.org.uk/support-and-information/latest-from-leukaemia-care/inspirational-stories/trudi-archer/

It is only in becoming aware of the symptoms of different cancers and their impact on individuals living through treatment, that we can begin to catch cancer earlier, and help people feel part of their community and society when they endure treatment or live with their disease. 

“Awareness, for me, is about ‘not fearing cancer’, but being alert for its signs and empathetic and authentic with people who are in treatment or living with cancer.” 

Two months after Trudi’s diagnosis I found my lump.  As you know I was diagnosed with Grade 3, Stage 3, Triple Negative Breast Cancer. This has now metastasised to other parts of my body as well as a local reoccurrence. So I am now stage 4 and have an incurable and inoperable cancer. There are no known targeted therapies or treatments for Mtnbc.  I’m trying to experiment with immunotherapy, but every three weeks someone keeps giving me the placebo. I’m hoping to get onto another immunotherapy trial soon. This and/or chemo hopes to extend my life expectancy. Sounds grim, right? 

But I feel and look really well.  Honestly.

Not at all like I thought someone with stage 4 cancer would look like. Even last year, with stage 3 cancer, I didn’t think stage 4 would be like this. I was pretty ignorant. So don’t feel bad if you are.

This is another reason why I write this blog, to raise awareness of living with cancer.  To help us all work out how we accommodate cancer into our everyday lives, because like it or not, cancer is here to stay. Much better to be aware and face into it rather than to ignore it or the people who have it. 

I think listening to these stories, and those of the millions of other cancer patients out there, are what cancer awareness is all about.  Not the pink ribbons and decorated bras which will no doubt be marching out from tomorrow and the start of breast cancer awareness month. 

Don’t feel you need to wear a pink ribbon or buy something for breast cancer awareness, but do go home and give your boobs or moobs (because boys aren’t exempt) a good check over!

I’m serious. 

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.

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.

Time for Palliative Care?

Feeling pretty low today. A full day of appointments and scans in various hospitals. I think I’ve been triggered into a bit of a pensive mood by the text that came through about my psychologists appointment. It’s in the main hospital in palliative care not the main cancer centre.

Not dying to go through these doors – no pun intended!

The word ‘palliative’ has slightly freaked me out.

Intellectually I know that palliative care can happen at any time in your cancer journey, but it’s typically associated with end of life. It doesn’t help that when you google the definition. The other material or searches are about things like ‘the death rattle’; ‘do people’s eyes close when they die?’; ‘Does death smell?’ (Yes it does I have been up close and personal to that with my beloved Nan) and ‘end of life care options’.

Turns out google or their previous searchers aren’t up to speed with the broader definition of palliative either. It’s not just me then.

Reflecting on all of this, I’m wondering aren’t we all trying to ‘live as well as we can until we die’? If you’re not, don’t wait for stage 4 cancer to do it!

Back to my mood. I’m also feeling concerned. This is the closest succession of PET-CT scans I’ve ever had. My scans are so historically unreliable we want to do some additional ones to see if the picture is clearer and if I am on or off the trial and treatment programme.

So after my psychologists session, I’m waiting in line for yet another radioactive injection for my PET-CT, then to talk about family counselling and then for a CT scan. All in 4 different locations and 3 sites.

There is no way on earth that CT scan is not going to show disease progression. I can feel the secondary tumour under my arm, it’s making carrying my bag hard, there is also a suspected local reoccurrence near my mastectomy scar. This latter one I can feel and see and yet it hasn’t shown on any of the scans. Even the sonographer saw it and felt it with her finger, but nothing on the scan. Not big enough.

I’ve been bringing it up at every appointment. I know my body. I massage those massive scars across my chest every night and every morning so the muscle and skin doesn’t lock up further. All the layers of fascia that separate muscle from organs and bones are melted together by radiotherapy. This was once described to me as putting several layers of cling film on top of each other and then popping them in the microwave.

You get the picture.

Anyway back to the little lump. I know what my chest feels like and I know what is new. It was new in June and it’s still there. Just a bit bigger. It might be scar tissue or fat necrosis (think this means dead cells from fatty tissue). But I would bet a lot, perhaps even my life, that it is not.

I hope I’m wrong.

‘Have surgery, cut it/them out’ I hear you cry. It’s just not that bloody simple. I wish it was.

If I’m taken off this trial there is still no targeted treatment (or cure, that’s long gone) for Triple Negative Breast Cancer. The only way to get anything that MIGHT slow the spread is to find another clinical trial. Those of you that know me will not be surprised to know I have one in mind. BUT here’s the tricky bit: in order to get on a clinical trial you need a big enough piece of measurable disease. If we do surgery I won’t have this, but I won’t have the cancer lumps either. If it has spread elsewhere, we need something systemic (whole body), like more chemo. If we do surgery, this will delay more chemo. It will also be another big op. to recover from which will eat into quality of life in the short to medium term (which might be all we have).

It’s such a conundrum!

All my years in innovation, problem solving, insight and consulting are being stretched to their limit. I wish I was working on someone else’s problem not mine.

My gut feel says surgery. They are also talking about and recommending (until the latest growth) radiotherapy in the contralateral (left) side.

My gut still says surgery. I want us to get a good look at what is actually there, not what it looks like is there. I’m a reality girl. I just hope either surgery or rads are still on the cards.

I can’t bear the thought of just waiting for cancer to pop up and say ‘hi guys, I’m over here now, you can’t catch me!’.

I’m the meantime while contemplating all this I am rammed in my eighth carriage of the day and wishing I’d worn my ‘cancer on board badge’. Although wearing that feels like admitting defeat and I look and feel physically good and well today. I just have a scrabbled head and a growing sadness in my core.

Time to grab life with both hands again and get distracted for a few days…

Tears (Poem 14)

Some weeks there are no words, no tears –
It’s not my life, I detach to keep going.
Other weeks they just keep coming –
tears, tears, words and more tears
I sob and howl at the likely lost years,
The futileness of it all,
I curl up in a warm cosy ball,
I hide under the blankets –
I try to block out you all,
I give in to the mets’
I go to ground and hide,
Sometimes I need to prorogue this ride.

10th September 2019

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

Honour and Accept (Poem 13)

Aching from deep within. My outer shell maimed,
Cancer popping up here and there, treatment effects becoming evident inside,
Emotional and physiological damage emerging as short term side effects subside,
Honouring my body’s journey rather than the future cancer has claimed.


Internal chemical warfare, breast amputation and nuclear burning,
Uncovering bad news and medical options is a skill I’m learning,
Despite the collateral damage, my body’s response is worth respecting,
But in order to move forward my mind needs to be accepting.

17th August 2019