In a casual morning conversation last week, my husband declared that if I was on a balance sheet I’d only be in the liability section. I obviously took great offence to this and started protesting that I did have some ‘assets’ that outweighed anything he was mentioning! Just as I thought I was winning, the post arrived and my son came running in with another unpaid parking ticket letter. I quickly tried to hide it, stopped trying to win, smiled sweetly, and conceded that I perhaps fit better on the ‘liability’ section after all.
It’s no wonder that me navigating my way through chemo had ‘liability’ written all over it!…..
After a referral from my surgeon, I, like many before, was nervous when I first went to the Marsden. It’s a wonderful place, but as you stand on the steps in front of the grand institution founded in 1851, you come to the realisation that many have walked here before in the same hope of a cure. It really dawns on you when you actually enter and are met with a memorial wall. You realise that everyone is there for the same reason (to try to stay alive!), and this in itself is pretty overwhelming. I remember listening to Steve Hewlett in his wonderful podcasts, saying that you never come skipping out of the Marsden – and I see why. Even if you are given good news, behind every door, in every corner, is the stark reality that cancer strikes at any age, any nationality and isn’t kind.
I nervously met my oncologist and his team, who wanted first to establish what he was dealing with by sending me for re-staging scans, and then to outline a plan of action and timetable for treatment. I’m a teacher and of course I got excited and reassured by the idea of a timetable!
The next day, as I waited with my sister for the re-staging PET scan, she remarked, surprised, ‘but everyone looks like us’ – they are young, it could be me. You sit in the waiting room wondering what cancer others have, wondering what stage, prognosis and hoping they, like you will be ok.
The 4 day wait for results, yet again sent me into a dark place that included Dr Google explaining lung resections to me. This time I realised I needed to start trusting my team and nothing I could research will change the outcome of what’s lurking in my body. I also realised this was going to be one of many scans and many tests I will wait for during the course of my life with cancer – And whilst it will never get easier I can’t put my life on hold waiting to see what’s round the corner.
My follow-up meeting brought with it what felt like the for first time, a tiny glimmer of at least momentarily good news. My lungs were ‘stable’ at this present time and that meant I could proceed with 12 rounds of first-line chemotherapy known as FOLFOX – the most widely used treatment for stage 3 Bowel cancer.
As desperate as I was to get the ‘poison’ pumped into my system straightaway to kill any lurking little buggers – my oncologists felt it was important I recovered first from the operation. A well needed week away with my husband in Dubai (without children – Whoop!!) Did just the trick and I came back with renewed energy to handle the chemo head on.
Now I realised like many people, I knew nothing about chemotherapy – I didn’t even understand what a ’round’ actually meant, so quickly with the help of my Macmillan nurses I began to learn what awaited me included all the nasty side effects that I had to look forward to!
As a starting point I had to have another small operation under general anaesthetic to implant a Portacath which is a way that chemotherapy is pumped into my body directly into a central vein in my chest – this stops my already very bruised arm veins from collapsing or burning under the toxicity of the treatment. I have a small bump where the plastic port sits underneath my skin and each time chemo is given they access it through a little needle. It can stay in me for years and I even need a special card to get through security at airports!
The following day after my Poracath was put in, it was time to start poisoning my body! My regime consists of three days of intravenous chemotherapy every other week for 12 cycles which will last over six months.
FOLFOX, my drug, is named after the initials of the drugs used for treatment. The drugs are:
* FOL – folinic acid (leucovorin)
* F – fluorouracil (also known as 5FU)
* OX – oxaliplatin (Eloxatin ®).
Folinic acid is not a chemotherapy drug. It is often given with 5FU, as it’s been shown to make it work better. Macmillan.
Every other Tuesday I attend the Marsden at nine with a lovely friend or relative of mine in tow! My port is accessed and lots of blood tests are taken to ensure that my body is fit enough to handle the the treatment. At this point whilst waiting for results, I make an escape (to my new local, the Ivy Chelsea Garden), to try to have an hour of normality whilst celeb spotting! Upon return, after a massive injection of steroids that make me feel as though I have had three gin and tonic’s, three shots of Sambuca and a few martinis without the need to dance like an idiot on stage, I start with a 2 hour infusion of ‘Oxy’ the first of my drugs that turn me into a ‘waking human cocktail’ as my friend aptly referred to me as! Throw in a bit of extra G&T straight down the line I say – I’m being poisoned enough already!
Oxaliplantin is a relatively new addition to adjuvant chemotherapy regime and is the booster in the cocktail! It comes with more side-effects than you can shake a stick at. Some almost comical, from my need to take anything out of the fridge using a pair of oven gloves due to the searing tingles and pain in my fingers, to my mouth deciding to move on it’s own accord in spasm, my cheeks going numb, having to sleep in ugg gloves in a hot bedroom to stop my hands turning into spasm claws and of course the total obliteration of any good cells in my body – leaving me on the whole sometimes wobbly, tearful and tired! But if it kills the little cancer buggars then all is good!
I’m then given a variety of different flushes and vitamins and a shot of 5FU, which is the other main part of my drug. I’m then sent home attached to a portable pump the size of a small water bottle, which I sleep with, eat with, carry around in a Louis Vuitton or Mulberry bag (any excuse for new handbags!) rather than the attractive recommended blue bumbag (too 1980’s), and often forget to pick up when I stand up, which continuously infuses more 5FU into me over a 48 hour period. I’m then visited at my house on a Thursday afternoon by a nurse who disconnects my pump and my needles until we do it all again!
The challenge is then navigating your way through the different side effects that happen at different points of the 14 days and just when you start to feel a little better on day 13 it starts all over again!
To counteract some effects, for the first 4 days of each cycle I take steroids and anti sickness medication which give you a little bit of energy but create their own problems too! (I started writing this at 3am for example!!)
Without a shadow of a doubt the steroids make me hyper. I thought that steroid rage only happened to 100kg bodybuilders – but it turns out it also happens to 50 kg bowel babes! My first round of steroids included a ‘through the night’ 4 day spring clean of my house which most of you know that cleaning and me don’t normally go together! I find myself almost feeling sorry for my husband, who if he only breathes in the wrong way will get the rath of the rage that by a kind account makes me want to poke his eyes out! 🙈. My children find that my tolerance of them being unable to put their shoes on in time is met with firework type screaming and tears, however my sister kindly pointed out this has nothing to do with the steroids and my tolerance of my own screaming children was never well met without a G&T! True.
I’ve also tried blaming my rising parking fines on the chemo and although the steroids might explain my half an hour rant at a parking attendant who I think actually considered calling back up last week, history will conclude I’m better off accepting that I fall, as my husband suggested, in the liability section of life – chemo or not! On a car note, I have however concluded that seeing as the first round resulted in a smashed wing mirror and second round a bump on my neighbours car whilst trying to park, that perhaps I need to avoid driving whilst on the steroids if nothing more than for the safety of the population of south west London!
‘What do you mean you won’t loose your hair?! Does that mean your chemo is weaker?!’
No it doesn’t! It was the first question I asked and I, possibly like you was surprised to find that not all chemo makes you go bald (unless I’m very unlucky or my regime changes). It doesn’t mean its weaker – but it does make me think as I look around at the 20 or so other patients being poisoned in the same room as me, that if you saw us all walking down the street, chemo pump away, you probably wouldn’t know what was going on. There is always 2 sides to every story, and I for one know that my chemo experience so far sums that up…
I try to make the most of the good days, and you will often see me posting pictures (wine in hand), smiling and showing that all is fine. I believe that’s the only way to navigate through – but what you don’t see is that crap, the bad and the ugly that goes on behind closed doors. You didn’t see the tears that came 5 minutes before at yesterday’s cycle 3 when I was told they need to reduce my dose of oxy – I immediately think – ‘but that reduces my chances of living’. Or the fact that on my first chemo cycle I had the crash team arrive as they thought I was having a reaction, and 3 attempts later realised it was a panic attack! You don’t see that on round 2, I was spent the 2nd day in A&E hooked up to a heart monitor due to fears over my heart reacting badly to the drugs. You don’t see me lying awake at 3am as I’m reading the story of another cancer blogger aged 35 who is reported to have died – whose story starts like mine (all upbeat, smiles, and quickly turns sour). You don’t see me shouting and crying at my nearest and dearest over the tiny things that get blown out of proportion because inside in the dark moments I’m thinking I might not be here and I just can’t get my head around that life will go on with it without me and I have no control over it!
What I do know is that the small ‘I’m thinking of you messages, little gifts or cards being dropped unexpectedly through my door, the friends and experiences that make me feel ‘normal’ are so important in every day life and are very much appreciated to help get through the ‘behind the scenes’ experiences of chemo.
The stark reality of an uncertain future and the constant reminder of this when undertaking chemo, makes you appreciate life for the current moments. People tell me to rest (and rightly so), but if life might be shorter than we need to grab every day with both hands and use whatever blessing of energy we have to make the most of it.
So as I’m about to be disconnected from round 3, and pray that I’m actually 1/4 of the way through my chemo, I’ve been up to some fun things to not only ‘grab life with 2 hands’ but also to raise awareness of Bowel cancer in young people.
In case you have missed my recent sun article do have a read here!
Made it to the front page online and top story until I was pipped by the couple who decided to have sex in dominos pizza! I did however get great pleasure from being more popular than trump and Katie price that day and can I just say a public thanks to the guy that shamelessly sent me an email saying ‘don’t die, you are fit, add me to your bucket list’. Totally inappropriate but made me laugh so much – which is always needed!
This aside, I was grateful and amazed by the hundreds of kind messages and outpouring of support from strangers who have had similar experiences and were thanking me for sharing my story. Watch this space for a follow up!
Next month in April is Bowel cancer awareness month and I really can’t stress enough the importance of raising knowledge of how preventable Bowel cancer is. I will talk more next blog about this and some of the amazing work Bowel Cancer uk in doing towards this. In the short term however can I give a shameless shout out to my just giving page where I aim to raise £10k (and counting!) before I finish chemo for this organisation. I urge you to get involved with fundraising events and let me know so I can link you into the Bowel babe team total and Bowel cancer UK!
So looking over my last few weeks of photos, to reflect on my good moments….aside from a craving for eating a lot of good food (No one told me this would be a side effect!), I managed to hit the gym – trying confidently to show off my scar for which I am proud – war wound and all, but forgot that whilst my outsides are healing nicely from the 38 stitches, my insides will take some time and cleverly pulled a stomach muscle trying to keep up with some core blitz class! 🙈
I accompanied by sister to have a colonoscopy to ensue she was ok and met with my original consultant Richard Pollock, who diagnosed me just before Christmas. It was lovely to see him and hold up his round by talking through the importance of early diagnosis and how much I’ve learnt about Bowel cancer!
I went to a fantastic Gin making class and made my own gin aptly named ‘Down the line’ at the Ginsitute in portobello road – well worth a trip if not only for the copious cocktails and knowledgeable history lesson on gin!
Amazingly, despite making it at midnight in a flurry of madness, my daughter won most creative costume for being an ‘Acute Angle’ on Maths day (well done Seb) – for which I feel my parenting for the year is now done, and then I cried when she brought home an Easter bonnet that needs making and asked if she could win that too! Eloise my darling the glue gun is all yours!…
Highlight however has to be watching the Carol king musical with my daughter one miserable Monday evening, when I, along with the rest of the audience and cast cried our way through a surprise visit from Carol herself when she took to the stage and started signing ‘You’ve Got A Friend’….most apt at this point in my life when I feel totally Blessed by the support around me. I’ll still blame the chemo for the tears though!
So on that note, cheers to chemo getting started, cheers to spring and the well needed sunshine, and cheers to making each day count – even if it’s puts you on the liability part of the balance sheet!
Ps. Let me just leave you with a little poem which I recall from my year book at 16, that often I share with classes I’ve taught in the past, that rings truer now than ever before:
To realise the value of one month, ask the mother, who gave birth to a premature baby
To realise the value of one week, ask the editor, of a weekly newspaper
To realise the value of one hour, ask the lovers, who are waiting to meet
To realise the value of one minute, ask the person, who missed the train
To realise the value of one second, ask the person, who just avoided an accident
To realise the value of one milli-second, ask the person, who won the Silver Medal at the Olympics
Treasure every moment that you have
And treasure it more, if you have shared it with someone special enough to share your time
Remember that TIME waits for no-one Yesterday is history… Tomorrow is mystery , Today is a gift – that is why it is called THE PRESENT