Get Sooz the good drugs!

Hello, I’m Sooz,

I am 40 years old, lover of all things leopard print and married to Dan - my happy ever after I have 3 children, two from my previous marriage - Finley 17, Theo 15 and together we made Frankie, 8.

September 2021 saw our lives turned absolutely upside down. After a period of illness I was rushed to a&e, where, after several scans took place, bloods, biopsies etc I was told the devastating news (ON MY OWN thanks to covid!!!!!!) that I had cancer. Further investigations confirmed it was bowel cancer but that unfortunately they couldn’t operate. I was told it was treatable and so took the step into the club we don’t want to ever be apart of.

I had been incredibly poorly in the lead up to diagnosis. I also have MS (I know - lucky me eh?!) and in August of 2021 I had a very strong 3 day infusion, similar to chemo, to destroy part of the immune system that attacks the nervous system and causing the awful relapses that I had been suffering from. I’m very lucky that it has done it’s thing and has stopped the MS in its tracks. Due to this treatment being so harsh though I became very ill, after a few weeks of not getting any better and suffering with severe abdominal pain i went to my GP, this then led me to the a & e admission and so to the cancer diagnosis.

5 weeks after diagnosis I started chemo, it was only a 50% dose due to how weak I was, but it still absolutely knocked me for 6. Nothing can ever prepare you for going for chemo, especially with covid - I had to face it all alone. The side effects are debilitating.

Although, if you were lucky enough to have come across me while on the steroids, you’ll know that ‘steroid Sooz’ was a THING! After 3 rounds of this I had a re scan to see how things were going. Unfortunately, that chemo wasn’t being effective enough and it had grown slightly. I had done a lot of research at this point to try and get the best treatment I could. I discovered that bowel cancers (any cancer actually) can have specific mutations. These mutations dictate how the cancers move and grow. I had to push and push with my oncologist to get the results of these (I’ve since changed oncologist). Eventually I got them back, and having found out for myself I knew that there was a medication combination named The Beacon Doublet that targets the mutation I have and so I asked to be changed onto that. This is a combination of daily oral tablets and an infusion every two weeks. After two months I was rescanned and discovered I was, at this point, stable with some shrinkage, so the drugs were doing their thing! Thank god I did that research and asked to be changed over. I continue on that treatment at the moment. It is relatively kind as far as side effects are concerned and most importantly I have a quality of life back that I had lost and choose to LIVE with cancer as much as I can while I am able.

Due to the nature of my cancer though this treatment could also stop being effective. I will have regular scans to keep on top of this. So, as well as all of the appointments, treatment, managing side effects, being as present as a Mum and Wife as I can be while navigating this shit show, I still research hard behind the scenes. I have discovered that there are drugs that can be added to my NHS funded treatments that, unfortunately, are not funded by the NHS and have to be paid for privately. The care from the doctors that administer these drugs is also private and just an initial consultation is £450. It’s a minefield and a world you do not want to be immersed in but once you are, fighting and advocating for yourself is a must. Sometimes it is utterly exhausting but there is no choice but to keep putting one foot in front of the other and to carry on even in the hardest of days.

If I had just sat back and not fought to get that mutation information I could be in a much worse situation now. I feel the same applies with accessing these drugs privately too.

So, this is where I ask all of you to come in and help. The long and short of it is, I need to try those drugs to help me stay alive, to get me to a point that means I can hopefully have an operation. Unfortunately, Due to my MS diagnosis I couldn’t get life insurance that included critical illness cover and so trying to pay for opportunities like this feels out of reach.

We didn’t think too much about it at the time as you always believe it won’t happen to you. But it did and it does.

I am a young otherwise healthy mother of 3 children, I need to be able to keep my quality of life for memory making and living as hard and as well as I can. I have too many things to yet share with my wonderful family - cancer will not win.

The support that we have been shown by our family and friends so far has been mind blowingly amazing. They shouldn’t have to face this either and I will fight to protect them as much as me the whole way through this and beyond.

So please - if you can donate just a small amount to help me access these drugs myself and my family will be forever grateful. There already aren’t enough thank yous.

I have found that even on the darkest and hardest of days, to find hope. It is always there to be seen if you look hard enough. These drugs give me options and with options we have hope

Thank you so much for reading and baring with me through my story.

With much love always

Sooz x