I have long been a lover of nature. The contrast of the seasons has been one of the many reasons I never took or sought out roles or career moves that had me in sunnier more consistent climes. That and what I like to call the depth of our soul, the history and quality of our architecture the richness and comforting nature of our communities and traditions. Since turning down a job in Sydney in my 20s, I knew I was a home girl. I like being near my family and my many and varied friends, I like Blighty and I love the four seasons. None more than Spring.
Spring is always a relief. I’m begging it to arrive as soon as the first snowdrop is up in January.
That white dab of light in a dark long winter. I then look forward to the daffodils and the hyacinths in everyone’s gardens and the glorious lines of hopeful yellow bursts that flank the sides of my road. Daffodils I helped plant nearly 15 years ago, that keep on coming. Making us all smile because we know the light nights and longer days are on their way.
Spring is my favourite month. I think it always has been. My depression is definitely worse in winter. Daylight and the feel of sun gently warming my skin certainly warms my soul and makes me believe that more is possible and I can cope. I have to make less effort to hide my inner loneliness and black dread. I’m always a smiler, but spring makes my heart sing. I smile inside and out.
A few days ago I went on a short walk around the block. I was having a rare moment of being physically alone, alone in good way. Alone in suburban nature. I was listening to the bees in the blossom and the birds, who’s song seems happier now that they don’t have to fight with aircraft and traffic. I always try and tune in to my surroundings. Whilst often being focused on my end goals or ‘to do-list’ I always try and notice the details of the periphery. I am also blessed (I think it’s a blessing) with an incredible memory. If I experience things in a multi-sensory way, I remember them. So I play attention to my senses.
On this walk I notice the smells of spring too. That fresh smell that comes from new shoots and blooms previously hidden deep in a dusty looking bulb. Of starting afresh.
In my garden my husband and I (makes me sound like the Queen!, but I’m trying to avoid naming people) have planted a few little beauties which pop up every year, sometimes taking us by surprise. The peony is another favourite, it’s petals so tightly and neatly snuggled up to each other that they create a near perfect sphere, before bursting to life.
Surrounded by all this new growth and life I wonder if the cancer cells I harbour are shooting new blooms and tendrils or dying back like an internal winter.
I briefly contemplate how many more springs I will enjoy, but for now I want to drink in this one. To meditate in its rich, bright and hopeful palette. To forget about cancer and to leave the screaming children at home while I wander quietly around the block.
Sadly, the welcomed early warm weather will dry up all the beauty of spring petals, stealing their scent and wrecking their form. Some years I feel I wait so long for spring it’s a shame to rush through it.
Much as I love the warmness of the sun on my skin I want to linger in spring and all its gifts a little longer. ..
One of the many things I have learned about life and myself over the last two years is that accepting the facts, frees you to be back in the driving seat. Those of you who read my blogs regularly will say, ‘but you never give in or give up or accept a situation’. Well actually that is not true. Giving up and giving in are different from acceptance. In order to accept I need to push the boundaries – its in my DNA and my upbringing. I do not accept things on face value, I interrogate the situation to challenge and then find out the facts, the parameters, what are the restrictions that we have to work within. I accept those real facts (quickly), I then make a plan to go around them or find a different route to the same or similar outcome.
Being angry, frustrated or taking the role of the victim does not help you or anyone around you. Never has the phrase ‘we are where we are’ been truer.
Yes I am going to be beyond devastated if they cancel my treatment or travel to London or if they have no staff in the hospitals. I finally have a treatment that is working – once again Covid-19 in this situation would be plot line that lacked believability – but here we are. I will do everything in my power to get treatment on Friday and then two out of every three weeks for the foreseeable future or this cancer will get me and that really will be that.
I did not accept – ‘wait until next week for treatment to see if your bloods come back up’. I asked what my neutrophils had to be to treat me, and how we got them there in the fastest time. I asked what else we can do and if we can have treatment earlier than a week’s delay. The team appreciate (most of the time) my can do/will do attitude and my challenges to the limits. They also are very clear with me about the facts. I know when I have got to the real facts. I then accept and move on to make a new plan.
If I had had chemo yesterday I would not have been able to use the time to plan for the inevitable home schooling. If Johnson hadn’t called it yesterday we probably would have had to. In May 2018 when I was hit by the blow of an advanced cancer diagnosis I thought I’d be taking 6-9 months out my life and then back to normal. It became viserally apparent that was not going to be the case. I would be lucky to see my kids out of primary school and cancer was my new normal, here forever, treatable, but not curable. I accept this situation because I know cancer will rob me and my loved ones of so much future, I refuse to let then rob me of the now. I’m not giving it that power. And Covid-19 can do one too.
So one minute I’m worrying about seeing my kids through primary school and now I am planning to run one in my kitchen. I accepted that I was going to have to fit home schooling in around chemo/immuno and recovery earlier this week. It was inevitable. Yes, like the rest of the nation we could all do without this. Our lives have been turned upside down.
Perversely, I’m looking forward to it. When Corona-19 hit I thought – well at least I don’t have to worry about catching a common cold and ending up in an ambulance in the middle of the night. Finally the nation is washing its hands. My chances of being febrile neutropenic are smaller and neutropenic sepsis more unlikely too. That said Covid-19 would give my body and its defences a run for its money so I’m not licking the tube yet. Especially now I’m neutropenic.
I think the other reason I feel strangely calm (aside from the fact that I haven’t yet had to home school and spend 24hrs straight with my kids (and my husband) indefinitely), is I feel like the rest of the nation have stepped into the same crazy, uncertain world I’ve been navigating for two years and its great to have the company.
Come on in – it ain’t so bad.
It’s also great to have some intellectual purpose for my days – even if at 47 I am going to have to finally learn my times tables and how to spell. However, cursive handwriting might be a push too far (sorry Mum – it will continue to disappoint and annoy you).
So I say don’t give up and say you’ll be crap at home schooling, at cooking like you are on an episode of ‘Ready Steady Cook’, at giving your kids what they need.
Accept that this is happening.
The surreal just got real.
Take a breath, get on board, learn something about your kids and yourself, get the wider family involved and have some fun. This really is an opportunity of a lifetime. A challenge we never thought we’d have to deal with, but we are. A carved out space to create memories you would never have had the energy, time or commitment to do.
Oh, and accept that sometimes you are going to F**k up too.
It’s fair to say I have been struggling to keep up with day to day life, never mind writing this blog. Physically and mentally hauling my body out of bed has been a mission. My movement has been restricted by the increased swelling in my arm from lymphoedema (I keep saying I’m going to write a post on that, but a bit like the hair loss one, it is difficult to dwell on). This swelling has also been in my chest and shoulder. The weight of my arm has meant that I am wearing a sling to support its weight and try and relieve my shoulder. This is in addition to the compression glove and compression sleeve I wear on this arm. My right arm. Writing and typing are both painful.
In case we didn’t know that cancer is a systemic disease, the inter-related nature of all my symptoms is daily evidence of this. The swelling and the increase in disease is also pushing on my nerves and my blood vessels. The latter could also be a DVT, so I’m on daily injections to keep the blood thin. My belly a bruised pin cushion. The pressure on my nerves causes the weirdest pains, odd electric throbs and flashes of mini lightning under my skin (paracetamol and ibruprofen don’t even touch this pain). I have had to go on nerve drugs and a low dose of morphine. Neither of which I wanted to do, but the chronic pain meant I had to give in to this.
Giving in is not my thing.
I am now finally beginning to get on top of this pain and the breakthrough is managed with top ups. With the drugs comes a little more sleep and a slightly improved patience level (my family would argue that this is negligible, but they don’t know how many times I don’t lose my temper, but bite my tongue instead). It’s fair to say that 21 months dealing with cancer and the medical system takes is toll on one’s tolerance as does chronic pain. And that’s without throwing a young family and daily life in the mix.
As you know I have been fighting to get on an immunotherapy trial and I did not want to jeopardise this or lose focus by banging on about how awful I felt. I donned lipstick and a smile and got myself onto the trial.
But, eventually I had to admit that breathing was a struggle. It’s something you do quite a lot in any given hour and not even I could put a brave face on for that . My breathing was shallow and noisy and it was not going to win any efficiency awards for gathering oxygen either. That combined with red blood cells depleted by chemo makes for an interesting time obtaining oxygen. My normal pace of life was impossible, even my new post cancer pace of life was unachievable. It was harder and harder to get out and about. Finally, one day I had to sit down and watch TV in the day(!), for those of you who know me you will know this was not a good sign.
All in a week off
This week is my week off from chemo/immuo and blood tests, so we managed to squeeze in yet another trip to London. This time to have my lung drained. When the oncologist mentioned this I didn’t like the sound of it and I had to get my head around new treatment, the cold cap etc, so I put it to one side. I was so exhausted and relieved after having my first lot of immuno that the thought of googling and looking up draining pleural effusions was just too much. This time, very uncharacteristically I decided that ignorance was bliss and I would not research the life out of the procedure I was signed up for. It involved a pretty long needle and an accurate piercing between the lung and its lining. That was enough to remind me of having an epidural and the legal paperwork you sign while having contractions about the implications of needles slipping or going in the wrong place. I’d not enjoyed that experience at all. My brain was full with info and terminology and I wasn’t brimming with energy to look up lung draining.
The trouble is I like being informed. Being uninformed made me anxious about what was going to happen. Before I knew it I was changing into a hospital gown and my pants and signing lots of paperwork. This was clearly not a quick nurse led procedure. If anyone else asks me if I have had the risks explained to me I might scream. I love the euphemisms too – like ‘potential damage to underlying structures’ (piercing the needle through one or more of your vital organs!). I consider goggling the procedure from behind the cubicle curtain and then think better of it.
Apparently CT scans are unreliable at predicting the amount of liquid (most scans seem to be unreliable!), which means the respiratory consultant is unsure whether there will be that much fluid or if they can safely remove it. I let her know that I can definitely hear the fluid, although it does seem to be marginally better in the last week. Once again I am in the paradoxical situation of hoping there is not too much fluid, but enough. She explains to me that there is one procedure where they use a needle and do an aspiration (suck the liquid out with a syringe). Assuming its safe she thinks this is the likely option. If there is a lot of fluid they will put a small tube in and attached it to a drain to clear the liquid out. We talk about the complications of both. I am trying to listen, but just want her to get on with it.
I am wheeled into a small room the cross between a scan room and an operating theatre. The consultant has two nurses, lots of equipment, a fridge containing pots of dubious looking fluid – kombucha or pleural edema – difficult to say.
I dangle my legs over the bed and put my feet in a sort of side table, that resembles a short lunch tray trolley with no dirty lunch trays in. I lean over a pillow and the consultant takes a look on the ultrasound. I can’t resist a peek, she picks upon my interest (obsessive nature) and points out my liver, diaphragm, lung etc. I resists the temptation to say ‘oh the underlying structures you’re hoping to miss with the needle’. She finds the pleural effusion and seems pleased. It is big enough to drain. I am pleased too. Funny what you wish for. She then uses the ultra sound and what I can only assume was some kind of sharpie to mark the spot to put the needle in. I am keeping silent and completely still (I know, a rare moment). She asks me to breath exactly as I am doing. Not any more or any less. I have no idea how I was breathing. This makes me anxious – normal compensating reaction for anxiety is to deep breathe. Except I can’t.
The needle is in.
She says ‘well done you can relax now’ and to my surprise I do. The moment I’ve been dreading for 2.5 weeks is happening. I feel able to ask: ‘Can you see the needle in the fluid on the screen’, the consultant replies that she turns the screen off after she puts an x on as she prefers two hands on the job to insert the needle (rather than the scanner in one). I stopped asking questions.
As I’m still alive and breathing I assume my lung hasn’t been punctured or worse.
She syringes of c100mls of liquid. I ask to see it (the exit site is in my back). It looks like urine and it looks like a lot. She then let’s me and the two nurses know that they are going to switch procedures to a thoracentesis as there is more fluid than expected. They insert a tube into my back and the liquid flows out into a drainage bag. It is actual quite satisfying. It’s a very odd sensation, but it feels good. The team shout measurements and numbers at each other. It keeps coming. They show me the bag (I didn’t ask, by this time they know they have a control freak on the trolley). It now looks like chicken stock and I reckon it would make a enough gravy even for our family roasts. It keeps coming.
She asks me if I’m in any pain. Pain is so subjective. I’m uncomfortable, it feels weird, but is it painful? No, not really. They keep going. She asks me my height. I feel some tightness in the top of my trachea and wonder if I will imminently start to choke and splatter like the end of bleeding a radiator. It dissipates. She asks me if I am ok if they try for a litre!
‘Jesus’, I shout out. I apologise for blaspheming. They show me the bag and say we are at about 750ml. I blasphem repeatedly and apologise. ‘OK go for it’ I say. I am imagining a giant measure-o-meter from a 1970s Blue Peter appeal. My chest feels a bit tighter. We are nearly there. ‘Stop’ she says. The flow is interrupted.
Claire – a litre is about what we go for in someone your height and we’ve got 1.1litres.
It is still flowing, but we don’t want to risk lung collapse. Obviously, I’m fine with this – they’ve clearly got way more experience than me and if I’ve managed to carry this lot around a few extra 100ml’s probably isn’t going to notice.
I feel instantly better (who wouldn’t having let go of that lot). My chest is sore. I am tired, but I am relieved it is out. I wanted to run outside and breath in the February air. I took it easy though.
I woke up the next day (today) literally feeling like a new woman. When I went for a wee in the night it was strangely eerie in the house without the familiar rattle of my chest. In the morning, I left something upstairs and casually went back up to fetch it, rather than thinking – ‘I’ll make do without it’. I ran a few errands and went for an appointment, I picked the kids up from school. I was out and about, being me, living my life, relishing in the winter sun and the mundane. I was literally gulping in the oxygen. Don’t ever underestimate the importance of that stuff.
I’m definitely better out than in and the same goes for the yellow/brown gloop.
I want to write a long post about this and maybe later I will or maybe this will turn into one. After all it took a bloody long time to get here. Twenty-one months of fighting cancer and 13 months fighting the medical system for the one immunotherapy drug in trial that ‘may’ have some hope for metastatic triple negative breast cancer.
Breast cancer is still one of the leading causes of death in women (despite it being and I quote an acquaintance ‘one of the best cancers to get’!!!) and despite many more people surviving breast cancer, there are still too many lives taken. Just this week another young mum in my support forum was taken too soon. Leaving 3 young children (below 5) and a husband in the wake and destruction of TNBC. A disease with no cure or targeted therapy to control it.
Due to this lack of treatment, finding a cure or even a treatment to control spread could be big bucks for big pharma. Only 15% of breast cancers are triple negative, but it’s still a decent segment for big pharma to make money from. As a result of this there are lots of different clinical trials for triple negative patients. On the surface this is good, but the reality is finding them, working out how to get on them and passing the eligibility criteria are complex tasks even for the most tenacious and energetic terminal cancer patients. Almost an oxymoron in itself. It’s a wonder anyone meets the trial equivalent of an algorithm. All this searching and hoop jumping just to be a lab rat for future triple negative patients and possibly buy yourself a few more months in the process.
The first trial I found was perfect and gave me immunotherapy as a given as it was the combo they were trialing. Partnerships were with old chemos or additional triple negative targeted therapies. Everyone got immunotherapy, Atezolizumab. An attempt to find Atezo’s killer combo (or survivor’s combo). Unfortunately this immunotherapy trial wasn’t available to me as my reoccurrence/secondary cancer had been discovered in less than 12 months after my primary diagnosis. In short my proactive nature which had insisted on the scan that found the tumour was 4 months too early to be eligible.
Other trials I found I wasn’t eligible for because my tumour wasn’t big enough yet! Frustrating doesn’t even cover it. Eventually I found a trial that I was eligible for by 1mm of tumour measurement. This trial involved months of travelling to the research hospital only to get disease progression and find out I was on the placebo.
The second clinical trial was another mission to get on. Loyal followers of this blog will remember that. This trial yielded another 4hr round journey to get the standard or care drug I could have got on my doorstep. A journey worth it for the chance of getting Atezolizumab. A money can’t buy drug. Those of you playing attention know that that time I was rewarded with the control. Atezolizumab missed again. I was the last person to get on this trial globally. There was a part 2 to this drug and if I met certain eligibility criteria the second part could be open to me. It was beginning to sound like the bonus schemes most of the consultancies I’ve worked for offered. Unlike those, stage 2 finally paid out. All the hard work, hoop jumping and waiting had delivered.
Today I am proud and frankly astounded to report that I have Atezolizumab running through my veins. Hopefully playing with it’s wingman chemo Eribulin to finally have some impact on this aggressive and relentless cancer. Let’s hope it buys me some more time and doesn’t make my quality of life too grim with the toxicity.
Who thought I’d be celebrating getting my 8th chemo agent and an off label drug. Funny where life takes you.
Bit like this journey, the post didn’t end up being short either. However, did beat Brexit to a different post.
This is a post I have started and not finished many times. Either events have over taken the post or I can’t bear to transport myself back to the first dalliance with barbaric chemo.But on the cusp of making a decision about new treatment which will likely see me lose my hair again I feel I must revisit it and commit to paper.
I’m not going to write about all the side effects, suffice to say there were many and some still keep coming from that early treatment. It’s also impossible to unravel what was chemo related and what was menopause related. I went from not even being peri-menopausal to post menopausal overnight.
It was like throwing yourself of an oestrogen cliff.
Bone pain, mood swings, night sweats, hot flushes and all sorts of other intimate issues were thrown in the mix with cancer and its treatment. However, the mouth ulcers, bowel issues, blurred vision, chemo brain, neuropathy, hand and foot syndrome and nausea were all less psychologically complex than the hair loss.
Nothing shouts cancer across a busy playground than a bald head. It is the icon of cancer patients. It incites pity, cocked heads, patronising conversations, hackneyed platitudes like no other.
Yet being bald wasn’t actually that bad.
Going bald was a whole new ball game. All the publicity about ‘braving the shave’ for me glosses over the loss.
The cold cap
Rightly or wrongly I decided to try and keep my hair. I endured the cold cap on my first ever chemo back in June 2018. This in itself is an experience! You hair is sprayed all over with cold water, then imagine putting your head in thick rubber swimming hat filled with tubes like the pipes in the inside of your freezer. This is then secured in with a neoprene skull cap and attached to a generator and a water pump. The cap fills with freezing cold water which is then turned to ice on your head. The weight and constriction are intense and that’s before you add in the cold. Wowzers!
As my daughter said ‘Mummy, was it like a really bad ice cream headache?’ – ‘kind of’ I managed to reply!
The wonderful nurses at my original hospital managed expectation brilliantly. They said when you think you can’t handle it any more, take a deep breath and wait another 10mins and it will be ok. I did this and it was. Because my head was so numb I stopped feeling anything except the weight of the cap. You have to have it on an hour before and an hour after so I had it on for about 4hrs. Apparently it freezes your hair follicles and stops the chemo getting to you.
Like most series of chemo I had six three weekly cycles. i started with FEC-T. A cocktail of 4 drugs delivered individually via i/v, interspersed with the steroids, flushes and Piriton. So I only had to endure the cold cap another 5 times. I thought I’d give it a go.
Except my hair started falling out 10 days after my first cycle so it seemed a bit pointless. So a few weeks after I discovered I had cancer I had to deal with the very real reality that I was going to lose my hair. I had yet to tell all my friends and colleagues I had cancer, I hadn’t absorbed it myself. I was still fulfilling work commitments and had not told clients.
A few days later I had to deliver a lecture on Innovation and a facilitated workshop at the London Business School. My friends and family thought I was mad, but I’d worked on winning this piece of work for almost a year and I’d done the prep so I only had to stand up, smile and deliver. This seemed easier than uttering the words ‘I’ve just found out I have advanced breast cancer and I’m on chemotherapy’.
I’d been on chemo for 3 weeks and my blood counts were at their lowest. I was seriously immune compromised. I decided that the train and tube wasn’t going to cut it. It was bad enough being in a room with 80 people. I either cancelled (which I’ve never done) or got a taxi and got on with it.
So the morning I had this lot in my hand I got in a cab and delivered. I had to make a last minute jacket change as the navy one exasperated the hair which was literally falling out as I moved. The session went well and I loved it. They thought I was a right diva when I left and jumped in my private car to take me home. If only they knew!
The week before the LBS gig, I panicked that all my hair was going to be gone in days (based on the rate It was falling out and the amount I found on my pillow, in the plug hole and on the floor).
I needed to get a back up plan, I wasn’t ready to stand up bald in a room of 80 people. I needed to source a wig. And fast. This is not as easy as it sounds. In the NHS you need a referral, then an appointment and then they ordered something in. After a bit of phoning around I found a wonderful women about 45 mins away from me. She had no appointments, but put me on the cancellation list. She also asked me to send some photos of my hair via email. Within minutes of sending the email she called back and said she was pretty sure she had a wig in stock that would suit. Originally she’d talked about ordering 4/5 in and then me trying them and deciding. I was comfortable with this. However, she sounded very sure about the wig in stock. Sometimes you have to trust someone who specialises in something. I rang a good friend who I knew would be up for and not freaked out by the trip and would give an honest opinion.
Off we went and had an absolute ball!
It was honestly one of the most unexpectedly fun outings Cancer has gifted me. The wig was so perfect it was weird. It was my hair, but on a good day. The woman styled it and showed my how to brush it, wash and condition (I kid you not) and dry it. All things I had no clue about. Suddenly staying in to wash my hair would be a reality!
My wig was expensive, yet another hidden cost of cancer, but it was worth every penny. I didn’t need to wear it to the LBS, but the day I bought it I wore it for school pick up. It was a tight fit as I still had quite a lot of hair despite what had fallen out. Two mums were in on it, but apart from that no one knew. 95% of the playground didn’t know I had cancer. I got several breezy ‘nice hair cut’ ‘you look well’ comments and one Mum who has the same hairdresser said she loved the cut and had sarah done it? She touched it and said how well it sat at the back. I felt sick inside, dreading it coming off as she touched it, cringing as I lied about my cut! We laugh about this day now. The best thing about it was both my son and my daughter didn’t even notice. When I took it off a home they were gob smacked, but also my daughter was relieved as she was most worried about a ‘bald mummy’ picking her up from school. The thought of the hair loss bothered her a lot, she still goes on about it now.
I am now on the cusp of having yet another change of treatment as my disease has progressed again. Finally the scans and oncologists opinions agree with my own experience of the growing tumours in my axilla and the ever growing skin and chest wall metastasis that I have to look at in the mirror and deal with the chronic pain of. Despite what is in plain sight they don’t show up on an ultra sound or CT scan. Finally I’ve been referred to stage 2 of the trial and am hoping I’ll pass eligibility and they’ll give me immunotherapy. I’ve been campaigning for it for over 12 months and have had the placebo/control in the last 2 trials so this has to be 3rd time lucky. Surely.
The thing is immunotherapy might not even work but the good thing (I think) is I get it with another chemo agent called Eribulin. This will be my 8th chemo agent and my fourth series of chemo treatment. I remember when they first told me I had cancer and I’d have 18 weeks of chemo, nowadays I get worried when I’m not on it or it options are limited, which they are.
This chemo is likely to cause complete hair loss again. I’ve had hair thinning with the last two, but not complete loss. Yes I have a great wig, but I’m still not relishing the thought of the cold cap or losing all my hair again. That’s why I thought I’d finish this post.
People who ‘brave the shave’ for charity do not go through the almost mourning period of losing every hair on their body. They get the end result not the tough journey to get there. It’s not just the hair on your head either. I never knew how much I liked and needed my eyebrows and lashes. Aside from the fact that they frame your face and eyes, they also stop sweat running in your eyes or flies sticking on you eyeballs. The hair up my nose also stops pollen going right up it and warms and filters the air we breath in. This combined with no mucus makes your nasal passages very uncomfortable. Never take body hair or lubrications for granted!
Braving the Shave
Eventually at the end of August 2018 I could not deal with the patchy hair anymore. I have worn a hat or head scarf for most of the summer (wig was just too hot for the summer of 2018) with little bits of hair coming out the bottom. So it looked like I had hair. The bald patch in the middle was hidden from view. It was however always waiting for me when I got home, when I cleaned my teeth before bed and again in the morning. Time to take charge, the hair had to go. My husband shaved it off and it was massively liberating. Should have done it earlier. I still wore my wig for most of Autumn.
Wig, bald, scarves & regrowth
Look good, feel better
In the middle of Autumn I did a course with a small, but important charity called ‘Look good feel better’, they give you a bag of cosmetics and a 2-3hr session on painting on eyebrows, putting some colour in your cheeks and a bit of a spring in your step. It was fab. The BBC happened to be filming the day I had my session and most participants weren’t keen to be on film. I said yes as I thought the charity was good and it might help funding. Plus once you’ve had a boob off and half the county gawping at and touching your chest, you get a bit blasé about these things. A few others said yes too and they made the film below that was on the BBC news. In fact it got slightly more coverage than I had anticipated. I was unlucky enough to be the mug shot on the front of the clip, double chin and all. As I have since discovered that it is all over twitter and all the staff at my local hospital had it on their newsletter so I thought i’d include it here too.
“Not all of us can do great things. But we can all do small things with great love”
In my experience of an advance cancer diagnosis people don’t really know what to say. Questions to understand it seem insensitive and risky as you have to be prepared for the answers. Words of reassurance are tricky. A lot of people opt for the head cocked and pitiful smile when they see you or just plain avoidance. However, there are a pretty large and surprising number of people who opt for action.
As an action junkie I relate to this as it is what I have done in similar situations. When you feel devoid of words, action speak volumes. Sometimes you just have to do something.
Back in May 2018 I was astonished with the direct and decisive action people from all areas of my life took. The night I got home from receiving the diagnosis one of my sister’s just turned up despite being told I was fine and didn’t need her to come. Obviously, I was about as far away from fine as you can be, but I had to pick the kids up, feed them and get them to bed without falling apart. We didn’t tell them straight away. We didn’t know what to say. We hadn’t even told immediate family. We couldn’t find the words. We were in a trance like state. In fact we had a prior appointment with a will writer to do our LPAs and update our wills. So that is what we did on the evening of the day I was diagnosed with invasive advanced breast cancer.
You can’t make these things up.
In a film that would seem ridiculous, but in fact it was what we did that evening. It turned out to be a very practical thing to do. Having one of my sister’s there was a blessing as we were able to have difficult conversations about guardianship. Our original wills were no longer practical given the very real possibility that at least one of us would be taken too soon.
My sister also took on the unenviable task of telling the rest of the family. After that, the wheels were in motion, everyone went into action mode.
Within days of diagnosis, my sister said, ‘You’re going to need a big freezer’ I replied ‘what for?’ She said ‘all the meals’.
She had inside knowledge from friends with a cancer diagnosis. It was a matter of days before my Dad turned up with a freezer and my extended family brought home cooked freezable food.
But that wasn’t what my sister meant.
Nothing could prepare me for the deluge of home cooked meals that would turn up on my doorstep as word got around. I’ve joked before about the number of lasagnes, but not one went to waste. Every casserole, spag bol, curry, cake, soup, biscuit, flapjack, crumble and many more dishes of love were gratefully received. They nourished us through those early trance-like days. The blur of appointments and scans with news getting worse by the day. We put one foot in front of the other and one home cooked meal in the oven and we got through it until we could think again.
We are still lucky enough to receive meals today and they are all a gift of time. Time that we don’t have to think about preparing a meal. Time we can spend with each other or on tasks that seem to take so much longer now. It is not something we expect or always need, but it always makes us feel cared for and loved. One person in particular has never stopped giving us meals. She’s a wonderful cook and even has a drawer named after her in our freezer. There’s always something good in that drawer. We call her our ‘Cancer Angel’ and she is a very special woman who I have got to know in a deeper way since being diagnosed.
As an aside, my then 6 year old, found all the meals confusing. She asked me if we were poor, now I had cancer. I was perplexed. Where had this come from? But soon I understood when she elaborated “but Mummy you always say ‘you have to go to school, Mummy and Daddy have to go to work to earn money to put food on the table and a roof over our heads’ and you haven’t been to work as much and people are already bringing us food”.
It all made sense from a 6 year old’s perspective.
All sorts of kindness poured onto our doorstep and through our letterbox. People and gifts showed up in all sorts of guises from all corners of our life and the world. I was and continue to be truly humbled by peoples’s kindness. Amongst other things, we have been lucky enough to receive flowers, beautiful, honestly written cards, poetry books, magazines, books, Chemo kits, fruit and veg, solid gold engraved lego brick, jewellery, good luck charms, bracelets, Christmas decorations, charms for good health, ice pillows (for night sweats), shawls (when my arm was too big for a coat) and just last night aloe vera socks for my peeling bleeding feet.
We also got several tomato plants and a courgette plant. One lot even arrived with its own grow bag. I loved planting these and enjoying the fruits of my labour all summer long. Reminding me of the thoughtfulness and kindness around me. Feeling a sense of satisfaction when picking the fruit and making soup. The simplicity of nourishment. Overall we felt the power of kindness and community that can easily be forgotten or taken for granted in our busy and overly digital world. The simple gifts of kindness, the offers of help, lifts to appointments, walking companions, sourcing of outfits for school plays and childcare are invaluable. They also made me feel alive and that I mattered to lots of people. The outpouring of love and the genuine, real conversations I have with people I’ve known for years and other strangers has been humbling and a joy. I was never one for small talk. I favour real conversations.
I have been toying with writing this post for a while. A sort of wide scale thank you note to everyone who has held us in their thoughts, sent us messages of encouragement, made us laugh and smile and held our hands through this unplanned and daunting journey.
I am a strong person and I still favour helping over being helped. I am delighted that so many people ignored this and just stepped in. For the last couple of years we have donated to charity rather than sending Christmas cards. I also commit to phoning people who live further afield and have a proper chat with them, reconnecting rather than sending a card year after year. This year I haven’t phoned very many people. It is not because I haven’t got the energy, but it’s because I am more connected with the people that matter than ever before. This is one of cancer’s blessings. It cuts out the crap and brings families and friends closer together. Or it certainly has in my case.
This time of the year seems like a good time to celebrate and think about the importance of community and kindness. I’ve alway been a fan of and contributor to both. It matters and it makes a difference. Merry Christmas and thank you.
“It’s not how much we you do, but how much love we put into what you do that counts”
I am not religious in the traditional way and yet despite Mother Teresa’s catholic origins her words resonate with my beliefs. Her desire to put common humanity above religious divisions is something we should all strive to do. I do believe in spirituality and the sense of connection to something bigger than ourselves. Sometimes that belief and way of being is the only thing that keeps me going. We all need to look beyond ourselves.
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.