Worrying times

A few weeks ago the doctors decided to cut my treatment down to a once a month maintenance dose of Nivulomab. Their reasoning behind this was that I have been on the drug for two years now and it is expected that after this amount of time the body should have learnt to deal with the cancer by itself. Naturally, thie idea of reducing treatment still concerned me, but you have to go with what the doctors say.

I had my first CT scan since reducing the frequency of treatment a couple of weeks ago. At my follow up appointment the results of the scan were not yet available, so the consultant called me with the results whilst I was shopping in Tesco. So, standing alone in Tesco, I was told that a tumour on my liver had increased in size from 8mm to 12mm and that they need to do an MRI scan to further investigate this change. Following the scan, the doctors will meet to discuss the way forward… That was all I was told.

I have no idea what will happen, but I know that I’ve previously been told that any sign of disease progression will mean they stop my treatment and that there are no alternative treatments left to try. I was also told, back in 2018 that they will not open me up to do surgery ever again. So basically I’ve spent the last couple of weeks contemplating going through the awful process of dying once again. 😢

I’ve been quite angry this past couple of weeks as, although we’ve  really been living in limbo for the past two and a half years, we’ve managed to develop a new kind of normal, where we put the idea of the treatment stopping working to the back of our minds and started planning things a little bit further ahead. We started talking about what we’ll grow in the garden next year, what rooms in the house we’ll decorate next, where to go on holiday etc. Even converting another van. All of a sudden, we are starkly reminded that this may well not happen. 

I then became angry at all the things I should’ve done with this extra time I’d been given, but haven’t done them. Silly things like clearing out all of my old clothes and stuff in the loft that’s either too small or I don’t use anymore. So I’ve started a major clear out this past week or so and been told off by my daughter because it make it look like I’m getting ready to leave (which I suppose I am in my own way 😩).

Anyway my MRI scan is today and I’m unsure when I’ll find out the results. I’ll let you know…

Two Years on Immunotherapy

I’ve just had the results back from last week’s scan. I have been experiencing an increase in abdominal pain so had convinced myself that the immunotherapy was no longer working and that the tumours had grown. As soon as this happens they will cease the immunotherapy... and there nothing else to try, so it’s a huge thing. 

However, the consultant assured me yesterday that there has been no change in my tumours when compared to the previous scan so everything still seems stable. She couldn’t really explain the increase in abdominal pain apart from the scar tissue causing me problems. So I’ve just got to take more morphine when it’s bad... a small price for the overall knowledge that I’m still ok for the next few months at least. It’s very strange going through life in four-monthly intervals, each time winding yourself up with worry that this time might be the one where the treatment is no longer effective.

I’ve been on the Nivolumab treatment for two years now... two years I wouldn’t have otherwise been here! This month is the point where the trial would have ended and funding for my treatment stopped. But in a weird twist of fortune, the COVID-19 pandemic has ensured my treatment can continue indefinitely 😊

I had my first COVID-19 jab yesterday so that makes me feel a bit safer about leaving the house too. Lockdown is really hard for everyone, but especially for the people who have to shield and their family. I can’t believe I haven’t seen my parents or grandparents for over a year now 😳

The van conversion is almost finished, though I feel a project like that is never truly finished. Check out the photos on Flickr: 

https://www.flickr.com/gp/142701651@N08/0EJnnE

Ive started to make a king size patchwork quilt for the bed in the van... I didn’t realised quite how much work this would entail. I’ve cut out 144 squares of fabric and I’m sewing them together in rows of 12 squares- accuracy is key- this could take some time!

Stay safe everyone x