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A day in the life of patient @soozibags

by | Feb 2, 2021 | Personal Stories - Blogs

Sue Rouke @soozibagsThis is a direct lift  of a thread posted on twitter from kidney cancer patient, @soozibags but known in every day life as Sue Rourke.

Sue has very kindly allowed us to share this with the wider world. We feel this is a journey that has relevance to many of the 13,056 people diagnosed every day and one the wider public should be aware of.

Thank you to Sue @soozibags for allowing us to document this and not leaving it to drift past in the noise of twitter.

This what was posted on twitter, Monday 1st February 2021:

Post 1: It’s the first day of Kidney Cancer Awareness Week #KCAW202 and for day 1 I thought I’d share an insight into a typical day for me living with this disease.

Post 2: After getting up the first thing I do is take medication. This morning that’s 2 chemotherapy tablets and 3 tablets to manage side effects (of which there are many… more on that another day!)
@soozibags Pic 2
Post 3: This is my current drug stash. #Narcos On the left are the drugs keeping my cancer from growing. On the right are drugs to manage the side effects.
@soozibags Pic 3a     @soozibags Pic 3b
Post 4: I then have to wait half an hour before I can have breakfast and a cup of tea. I also check my blood pressure* for the first time today (its slightly raised, but not too bad).
*raised blood pressure is one of the treatment side effects.
@soozibags Pic 4a@soozibags Pic 4b
Post 5: Off to the office next, which for the past 46 weeks has been the spare bedroom. Because my treatment affects my immune response I’m extremely vulnerable to Covid-19 and have been shielding since March.
Thank goodness for stable WiFi and Google Meet ❤
@soozibags Pic 5a           @soozibags Pic 5b
Post 6: Oh, hello random unexplained bruise on my knuckles! This is a probably a sign that my platelet count is low. It may mean I need a treatment break and/or a dose reduction. I’ll find out at my 6 weekly check up next week. #myelosuppression
@soozibags Pic 6
Post 7: Lunchtime means another blood pressure check and completing the daily covid-19 survey. Answering this question is interesting seeing as I haven’t felt physically normal since 2018…

@soozibags Pic 7
Post 8: Finished work for the day and I’d LOVE to just have a nap on the sofa. But I know how important it is to keep active, so its time for a resistance training session.
TAKE THAT CANCER RELATED FATIGUE


@soozibags Pic 8
Post 9: Now all that’s left is dinner, more tablets, another blood pressure check, some trashy TV and then bed (probably by 9pm!) before doing it all again tomorrow.  Thanks for joining me and let me know if there’s anything you’d like me to talk about tomorrow!

 

<a href="https://www.kcuk.org.uk/author/mp/" target="_self">Malcolm Packer</a>

Malcolm Packer

Malcolm is Chief Executive Officer at Kidney Cancer UK and Kidney Cancer Scotland and has worked with the charity in various capacities for over 15 years.