Following on from my last post, a LOT has happened and I’m not sure where to start with it all, but I wanted to put together a post to share the latest in this crazy journey I’m on.
So just under 2 weeks after the operation, I had the follow up appointment with the consultant to find out what the lab reports on what they had removed showed. Basically they found it had spread to one of 20 lymph nodes removed which basically means I’ll need chemotherapy to do a ‘mop up job’ whilst the surgery has taken out all visible signs of the bad cells (Trevor the Tumour) they think there is a chance that there could be microscopic remnants floating around because of this escape into a nearby Lymph node.
I have to resort to Love Island Wisdom in these moments and make a bit of a joke to help cope with it – ‘it is what it is’… ‘you know what, I always wanted to try chemotherapy’ …
It is a bit of a blow, yet also I had found myself thinking it also would have been strange not to have anything else done after all that’s happened. I could refuse the chemotherapy given it will obviously have other side effects, but I want to make sure I do all I possibly can to ensure it doesn’t come back in any shape or form. So I’m also doing all I can with supplements and diet which I’ll share in another post. It really is about tackling this from all angles – the surgery and chemo is just one element.
One of the potential side effects of this chemo is the chance that it could affect my fertility, so to take precautions, I have decided to get some of my eggs harvested so that hopefully embryos can be created and frozen in case we need them in the future. Because this is due to chemo, this is done through the NHS which I am incredibly grateful for – the team I met at Kingston ACU (assisted fertility unit) were so lovely and supportive of my decision. So at the moment I’m waiting for day 1 of my next cycle to begin when I’ll start the hormone injections, and about 2 weeks later, eggs will be collected.
I first thought I’d need to have 6 months worth of treatment, but recent research shows that 3 months is just as effective with less side effects, so I’ll be doing 4 cycles which are each 3 weeks long over 3 months.
Day one is the infusion, then 2 weeks of tablets twice a day, then a week to let the body recover. The next cycle then begins as long as the blood count shows good enough stats. If required, the next cycle could be delayed if they aren’t happy with the results, but I’m going to do all I can to help me body get through this as efficiently as possible
So if all goes well, the chemo could be finished around Christmas time. I have heard a range of accounts of the effect CapOx has on people so I will just have to see. Some people have said they are bed bound for a few days after the infusion. Others seem to manage with minimal side effects.
Through Instagram and networks I’m part of, I’ve been put in touch with women who have gone through this and come out the other side and I’m so grateful to them for sharing their experiences and advice with me. One lady even had exactly the same doctors at the same hospital I will be at. It’s really reassuring to see they have come through it and are now living a normal life (well as normal as you can be after this!)
One thing I will be trying out is wearing cold mitts and socks to cool down my hands and feet as this helps minimise the side effects of the chemo- it can cause you to lose feeling and be hyper-sensitive to the cold (just as we are going into winter!)
So basically for half an hour beforehand and during the treatment, I’ll be wearing these- so beforehand I’m going to make sure I’ve got some really good audios lined up to listen to since I won’t be using my hands!
My main reason for sharing my story is to raise awareness- I know that unfortunately there will be other younger women like me who end up having this disease- it’s really treatable if we catch it early. If you’re in the UK, you can buy a test with this 25% off discount code here – use code:
It can be symptomless for a while, or you may notice some of the symptoms below. Overall for me, it was consistent tiredness and just feeling that something wasn’t quite right. When I went for a run, I’d get a weird pain in one particular spot and that didn’t feel right.
Note- you can get a positive test and not have bowel cancer but then you should be referred to a colorectal specialist who can further support and advise on next steps.
If you’re able to contribute to my fund to help cover the extra costs and the fact I’m not able to work, I so appreciate any amount you can offer.