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.
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.
You don’t have to wear pink, To be aware of breast cancer, It’s become so big, people don’t think It will happen to them.
If you do one thing today, Make sure you know how to check, I know you don’t think you have cancer in your deck. In Britain 31 women will die of breast cancer everyday.
Real sisters, mothers, daughters, aunts, wives, Lose their lives. Everyday. Why not me? And why not you? Don’t be passive, there are things you can do; Real conversations, commit to checking. Because Real lives, cancer is wrecking.
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?
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.
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 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’.
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.
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).
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.
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.
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.
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.