This is a short post just to say a massive THANKYOU to everyone who contributed to my fundraiser. With off-line contributions from family and friends I now have enough money for ‘THE TEST’. There is a little piece of Kath stored in a lab somewhere, which will be sent to the lab in the next week or so.
I’ve recently started a new chemotherapy regime (Capecitabine) and this is making me feel pretty vile. My new best friend is the toilet, I have a mouth full of ulcers, blisters all over my feet and I was admitted to A & E on Monday with suspected neutropenic sepsis (thankfully I didn’t). Today is the final day of my first drug cycle (day 14) before a much needed week’s break.
One of the reasons my consultant put me on this drug was because it’s not so hard on your white blood cells so there is less risk of neutropenia. I’ve escaped neutropenia, however the other side effects have been horrific. I’m on a really high dose so they should lower it for the next cycle.
One of the advantages of this drug is that I take it orally, so there are no horrible injections. This is easier in some ways but psychologically it’s really difficult taking a drug which you know is going to make you feel so ill, especially when there’s no guarantee that it will work. This is why the Tumour Profiling is so important. It will establish whether the Capecitabine is doing it’s job. If it’s not working, it will tell us what drugs are compatible.
I don’t like feeling ill (does anyone?) and I really struggle when I’m not able to physically function. Walking is my meditation so it’s been especially hard this week not being able to go out for my daily stomp. According to my OT mate Sally, I’ve got Occupational Deprivation – I can’t do the things I normally do. I love how they have a label for everything, it makes my misery seem somehow more justifiable.
The schmaltzy ‘Think of 3 positive things for 7 days’, doing the rounds on Facebook, has been a real test for me this week. But even I have found things to be positive about. Discovering Udderly Smooth cream (for those on Capecitabine this is a lifesaver) was a big highlight of my week however the fundraiser really kept me buoyed up. It’s been quite life-affirming and nice to know that so many people care.
What started as a little campaign to pay for ‘The Test’, has now taken on a life of it’s own and I’m handing over the reigns to the ‘PROPer Naked Selfie’ team. My lovely Aussie sister-in-law came up with the idea of ‘PROPer Naked Selfies’. I’ve nearly reached my target and I’m looking a bit peaky for selfies, so I’ve asked that any donations from this new campaign go directly to Maggie’s.
For those of you not familiar with Maggie’s. This is a charity started in Scotland by Maggie Jencks. The first Maggie’s Caring Centre was opened in Edinburgh in 1996 and they now have branches all over Scotland as well as a few south of the border. Maggie’s Manchester is opening in 2016!
The Maggie’s centres offer free practical, emotional and social support to anyone affected by cancer. I attended the Dundee centre where not only did I make lots of new friends, I did classes in Tai Chi & Yoga; joined a writing group; did practical courses on coping with cancer; and had countless free massages. More than anything they provide a warm safe space for people with cancer to relax, away from the harsh sterile environment of hospitals. A friend of mine described the Dundee centre as “a cuddle”.
I know the extroverts among you can’t wait to do a ‘PROPer Naked Selfie’ for Maggie’s. Just get your kit off, find a prop and take a selfie: Text ‘NKED50 £2’ to 70070 to donate £2 to Maggie’s OR donate here at JustGiving.
Tips of the week (for those on Capecitabine) to relieve symptoms of Hand and Foot syndrome:
Udderly Smooth extra care cream – they do an Oncology range for Hand & Foot syndrome. £9 for a huge tub on Amazon
Vitamin B6 – 100mg a day is said to reduce severity of Hand & Foot
Omega 3 – I’ve been taking about 5000mg a day which I think has helped reduce the inflammation
Silk gloves – these let your skin breathe and are said to calm irritated skin
Not sure which one has been most effective but all a combination of all above definitely helped reduce the severity of my symptoms.