Ever since being diagnosed with triple negative breast cancer my friends and family have said I should write a blog or a journal. Trouble is I didn’t feel like writing. Updating everyone, answering and writing texts and WhatsApps was writing enough. Especially on the first lots of chemo that made my eyes go blurry and meant I had to wear dark glasses (even inside). Turns out one of the chemotherapy drugs I had in my first 18 weeks of treatment (Cyclophosphamide) is derived from mustard gas, so I guess that’s why.
I’m back on chemo again, but its more manageable this time. Throughout this experience I’ve been scribbling down odd thoughts in notebooks, scraps of paper and WhatsApps. The wonderful and growing number of people who are supporting me and my family are keen to hear how I am doing, so with some encouragement and an experimental attitude I thought I’d give this blogging lark a go.
I hope it makes you stop for a minute and embrace your life right now. I’d love you to have real conversations with the people who matter about the stuff that matters to them and you. Maybe you’ll look at the wonder of the natural world or be compelled to do what you’ve always wanted to do.
Maybe it won’t be for you, that’s fine too. If you don’t enjoy reading a piece move on to another or come back another day, don’t endure it. If you do get something from it I’d love your feedback. Feel free to follow and share the the blog and/or my twitter and instagram pages.
Click on the links for more information about why ‘The Cancer Gap”? or how I started writing poetry or my poems. Alternatively, just scroll down to the beginning of the blog or look in the menu on the top left of the screen. Have a nosey around, you’ll work it out.
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 of 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.
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.
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…
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.
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.
It is astonishing how quickly 3 weeks goes and here I am back in the purple chair. Despite the smile (and the Simon Le Bon roots), this time it is with some sadness as this was likely my last day on this trial.
Yesterday was a day of mixed results. The bone scans and MRI’s were good, normal wear and tear (felt like scraping through my bone MOT), but all clear from any potential tumours. Sigmoidoscopy all good too – so just a free enema and a bit more dignity lost. Sadly though the ultrasound confirmed what my instincts and prodding had suspected. This increase in secondary tumour size plus the lump on my mascetomy scar will almost certainly count as disease progression.
There are 3 main reasons you come of a trial 1) disease progression 2) unacceptability toxicity 3) patient says ‘enough’. When they told me back in my consenting appointment I said ‘or number 4 you cark it’. My lovely oncologist, who was not entirely used to my directness or sense of humour (then) rather dryly said – ‘that’s included in number 1’.
So the next couple of weeks are going to be a bit hairy. I will need more scans (PET-CT & CT). Oh goodie! They will then have a big old chat about what to do next. The decision tree looks something like this scrappy sketch I did (yes Mum, I know the hand writing is horrendous, but as I keep telling you I have other qualities):
So this is why today was tinged with a bit of sadness. If the scans prove ‘too much’ disease progression we will apply to be unblinded from the trial. If I am getting the immuno drug and the disease has still progressed then I guess it is back to chemo only. Although I’m hoping I will be able to have surgery and/or radiotherapy to my contralateral (‘other’ to you and me) side as there is something more physical and real about these treatments even if the cells are hiding from the scanners elsewhere.
If I am getting a bag of water every three weeks, I hope to still be able to try immunotherapy via another trial. I can feel the all nighters on clinical trial databases coming on again (see Magpie scientist) and visits to other hospitals.
Whilst all this is going on I plan to distract myself with some creative projects, a VAT Return (that will be factual), some consulting work and a good house sort out. I will also continue to catch up on all the half written posts and poems I have lurking in books from the early days of the last 16 months. Expect some flashbacks to those days whilst I wrestle mentally and physically with what the next couple of weeks mean.
I haven’t really felt like writing on here much the last few weeks. Although I have been tinkering around with the site (all a learning curve), a logo (more later) and social media.
Two main reasons for not writing.
Firstly, we’ve been enjoying the summer holidays and trying to forget about the joys of dealing with cancer. Pretty impossible. Secondly, my PET-CT scan revealed quite a few hot spots and since then I have been having various scans and procedures to understand what they might be.
These have ranged from a sigmoidoscopy to pelvis and spine MRI’s and ultrasounds. I also slotted that bone density scan in too – which was super efficient and straight forward and now my favourite scan above a CT. I’ve got another CT scan and a PET Scan to come later this month too.
We are awaiting results for all of these scans (bar the always polite, but pretty searching questions I ask the lovely people at the hospital when they scan me). Whilst these conversations can give hope (I opted for gas and air rather than sedation at the sigmoidoscopy, so was able to see a lovely clean (!) and clear bowel on the screen. I also asked lots of questions and made bad bowel jokes (I’ll spare you those) and laughed a lot (that stuff was great man!)), they (the conversations) can also be terrifying. I saw the ultrasound screen and the shape and size of the lymph nodes, it didn’t look great, nor did her face.
It’s a pretty weird situation we are in as my CT scan from the end of July (like the end of May) reads like a call for a party (and in fact we had one) ‘remains a complete response to treatment’; ‘Target lesions – resolved 0mm’; ‘non-target lesions: none’ – happy days whoo hoo! Except I have always been able to feel the lump under my arm and having got smaller it has recently been getting bigger. I tell everyone that examines or scans me this. I also draw attention to the growing lump on my mastectomy scar. I want both out with surgery. I dream about scalpel-ing them out myself (I kid you not). This surgery has been discussed. In order to help us decide between surgery or radiotherapy on this opposite side (or something else) – we had the PET-CT in the middle or August.
You know this if you are a regular reader.
Here in lies the issue, as the PET-CT tells a different story to the CT – with less requirement for a party (unless you count one where people tend to wear black). There are hot spots (‘possible carcinomas’ – yikes) in my bowel as well as hot areas in my pelvis, spine, lymph glands etc. There is the big lymph gland on my left plus 4-5 other small ones (this does not look good) and a rouge hot right side lymph gland on the site I had a full axillary node clearance (or at least 23 were removed). This has worried me no end as I’ve already had surgery and rads here so that makes me think more chemo will be my only options. But I’m not an oncologist.
You can see why I haven’t written for a while and have been trying to enjoy the summer.
Anyway tomorrow is a big day as I finally get a whole pile of scan results and possibly a treatment plan. I think a plan might be unlikely as they want to do another PET-CT scan to see if these hot spots have got worse or better 6 weeks later. I am still on the clinical trial so i/v immunotherapy also awaits my busy veins on Wednesday. Until the next CT Scan officially shows ‘disease progression’, we continue as we are. This is so tough as my gut says the cancer is very much on the move again and growing elsewhere.
I think we need something more radical. And fast. I hate waiting for action – it just isn’t who I am.
I hadn’t planned to write such a boring factual piece, (well done for staying this far, hope the comedy pant shot helped), but I feel a need to do it to keep you up to speed and give some context.
I have lots of half written material – poems and prose – which jumps back and forth and all around this journey, so don’t expect there to be a neat chronology. If you can bear with the combo of current situation and flash backs to previous experiences you might get a bit of any idea of what a jumble my brain is in somedays.
In the meantime, I’m sorting new school shoes and PE kits, CAMHs referrals plus a suspected fractured collarbone in one child (end of last week) and two missing front teeth (today, don’t ask) with the other. No time to feel sorry for myself, too much to do and deal with…
People say ‘I don’t know how you deal with advanced cancer and two young children’, I say ‘thank goodness for the distraction and the very real reasons to live another day’. We all need others and displacement activity (I’ve got a few posts of that soon too) to pull us out of, or stop us dropping back into our dark places. How do you stay out of yours?
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.