Chemotherapy: my ‘waste’ is so toxic I have to flush the loo twice

Belinda Bennett’s breast cancer journey is now under way with chemotherapy. This is a personal account of her first round of chemo, which started yesterday and concluded today (Tuesday, February 18). She has five further rounds to complete at 21-day intervals before she can have the breast removed.

chemotherapy

All systems go.

I never thought I would find myself hovering over a loo handle waiting for the toilet cistern to fill enough to allow for a second flush. That was until today!

But, then again, I never thought I’d have to bare my private bits to a parade of complete strangers, have small parts hacked off and sent for sampling to places I thought were far-flung – not to mention reserved for the great, good and exceptionally rich. But, of course, I never thought I’d get a breast cancer that is inoperable before chemotherapy. And I most certainly never envisaged giving my hair a two-second pixie crop ahead of inevitable baldness within around two weeks!

I have never, ever wanted the world and his wife to know that I have… head warts.

Unfortunately, I also have HER2+ inflammatory breast cancer which necessitates no less than six rounds of TCHP chemotherapy, then a total mastectomy with, I believe, full node clearance, radiotherapy and a year of targeted therapy which will include a continuation of Herceptin – heart function permitting. I don’t want to recall possibly hearing my oncologist mention yet more chemotherapy somewhere in that mix.

I was diagnosed on January 23. This week has seen me abandon all control over my body. The toxins are in – now I am just waiting to discover what they are going to do to me. It’s like half pulling a pin on a hand grenade and wondering if it’s going to blow. In my case, all will be revealed when the steroids run out.

I am told the two types of anti-sickness tablets I have been given are exceptionally good – so I can try to put the memories of my dad’s chemo experiences to the back of my mind. However, just in case, I have wangled two emergency pre-filled syringes (with full paperwork), which are in my fridge – but I have to call a special number to get a professional medical person to come and administer them. Let’s hope it doesn’t come to that. In all honesty, while brutal, many people on the same chemo regime I am on report more a feeling of nausea than actually throwing up.

The district nurses are set to come for seven days from Saturday to administer injections to my tummy – to stimulate my white cell growth. The jabs are also in my fridge. I had the option to self-administer but, sorry to further burden the NHS, I am too much of a wuss. A funding request has been submitted to allow me to have a single shot, rather than seven every 21 days. The grounds were originally over my ‘anxious state’ – until I pointed out I should qualify on the account of my COPD!

For the next 48 hours, all my washing has to be machined separately. The lid has to be down on the loo before the now customary two flushes and a thermometer is my new best friend. Over a golden reading and it’s straight to casualty.

In between all of this, I have to be OCD when it comes to handwashing, overall personal hygiene and keeping devices, door handles, toilet flushes(!) and other surfaces spotlessly clean.

You will note I haven’t mentioned the actual chemotherapy infusion process. This is because it is exceptionally boring, long-winded and punctuated only with the fear that each new bag attached to the drip leading to my vein will cause a horrific reaction. The plus points: free sandwiches at lunchtime, fantastic clinical foot reflexology (better than a chill pill any day) and outstanding nursing staff.

I can look forward to any or a combination of the following side effects:

  • Sore/dry mouth and/or throat
  • Oral blisters
  • Sore bits ‘down below’
  • Tummy upsets, including constipation or the runs – or both, sometimes simultaneously
  • Flu-like symptoms, including headaches
  • Joint pain (fear not, I’m ready for this one because it can keep you awake for days. You don’t think someone like me would be happy to be fobbed off with paracetamol when those in the know describe the pains as like electric shocks?)
  • Nausea (hopefully covered)
  • Nose bleeds
  • Extreme fatigue (nothing I can do about this, but there are plenty of box sets I can try and watch if my eyes can stay open long enough)
  • Increased risk of infection, including sepsis (this is the scariest one of all)
  • Baldness – everywhere

Immediate plan of action:

chemo

My ‘action pack’

  • Remove the Hippo bag in my loo that has saved me mega bucks in sewerage costs over the years. Standing around to perform the second flush is taking too damned long and I am wobbly on my feet, not to mention tired
  • Get out for a short walk – even if it is just around the corner – every day. Neighbours, please be alert for a crumpled heap on the pavement
  • Drink 2 litres of water a day – if everything fails, present myself to the chemo unit for another IV bag
  • Eat anything my mouth will allow (preferably smooth, mashed or through a straw to avoid irritating any soreness)
  • Try to see beyond my situation to appreciate the health problems others face, especially those with no options
  • Praise the Lord for Herceptin – even if the loading dose requires a six-hour observation period afterwards and, while extending my life, could significantly damage my heart. After all those fags prior to giving up two years ago, I am amazed it’s in good nick. Must be all the walking I do
  • Think ahead and plan a fundraiser to ensure the chemo centre I am using is equipped with modern side-effect reducing gadgets – including safe, high-tech alternatives to ice chips, which can sometimes reduce mouth problems, and boots and mittens that can lower the chances of peripheral neuropathy
  • Ensure everyone knows, I do not want visitors and cannot accept gifts of pot plants or flowers (something to do with germs and fungus!). Safe care products for a balding head welcome!

Chemotherapy in 2020

I am assured that chemotherapy in 2020 is much kinder than it was 30 years ago – mostly due to advancing treatments, including complementary targeted therapies, and better medicines to control unpleasant side effects. Many patients are also benefiting from immunotherapy locally. My cancer treatment has been designed to suit my specific needs.

My dad suffered from leukaemia and he really went through the mill with chemo. He was an avid pigeon racer and my sister remembers him tending his flock with a sick bucket in one hand. My mum, who had breast cancer, helped to pioneer the body-worn continuous chemo pump during research trials at the Royal Devon and Exeter Hospital. She was also a founding supporter of FORCE. In fact, a representative of FORCE gave the speech at her funeral in 1990.

Over the next day or two, my energy levels and wellbeing will take a dip. The hope is, I come out the other side in just a few days and enjoy an almost ‘normal’ week before I subject myself to a second round of chemo.

I am not brave. I am not a fighter. I am just someone doing what I think is best for my family. In all honesty, the cancer has made me so tired, if this gruelling effort to live another few years doesn’t work, I won’t be putting myself through it again.

I’ve cried to my doctor and I have cried to myself. The most upsetting thing I’ve shed tears over is finding a heart-rending post written by my own daughter in a thread about inflammatory breast cancer on the Cancer Research UK website. That is why I am doing chemo.

Tackling cancer isn’t a battle. It’s just a hard slog; something we have to do to give ourselves a little bit more time – and the double flush is just one minor inconvenience in the grand scale of the overall chemo experience.

Further reading:

Dr Liz O’Riordan – the breast surgeon with breast cancer

Cancer Research UK

FORCE

Hospiscare

Fortuneswell Chemotherapy Unit

The one cancer story I didn’t want to write

 

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