Update... with good news

I’m aware that I haven’t updated my blog for a long while but things have been fairly uneventful in lockdown. My treatment has continued throughout the lockdown, which I’m grateful for as I know other cancer patient have had to stop. Ipswich hospital moved the cancer day unit to the private Nuffield hospital up the road for a few weeks but they’re back in the Woolverstone wing again now. We’re not allowed to take anyone in with us when we go for appointments though, so that has been strange and slightly lonely, as Andy has always attended with me.

My regular scan was delayed due to the Covid backlog but I finally had it a couple of weeks ago. It showed no further growth in my tumours and a slight reduction in the size of one tumour near my aorta so this is good news.

I’ve managed to reduce my pain patches again, down to 12 micrograms but I do have days where I wake up with pain and have to top up my pain relief, so I think I’m going to leave it as it is for now.

My diabetes is more or less under control now and the diabetes consultant is happy with where things are. I’m injecting insulin four times a day. It’s taken a lot of getting used to and it’s quite amazing the foods that make a difference to your blood sugar levels.

The best news of all though is that my immunotherapy drug has been temporarily funded by the NHS due to Covid. The initial document from NICE stated that it was to only be funded for first line treatment (newly diagnosed patient who haven’t received any other treatment yet). This was intended to minimise the number of patients on immunosuppressive chemotherapy drugs and reduce their risk of death from Covid. However, a few days ago, when Andy was doing his usual weekly checks on the legislative status of my treatment, he noticed that they have changed the wording to include all people on Nivolumab and that once funded treatment has started, decisions about the continuation or cessation of treatment is at the consultant’s discretion. It imply that, although the licensing guidance is temporary, once you have been prescribed the drug on the NHS, you can remain on it for as long as your consultant sees fit. This hopefully now means that I no longer need to worry about the funding of my treatment once the initial two year trial expires in February 2021. I’m not sure if our petition or Andy’s conversations with our local MP, who said he was going to bring up my situation in parliament, had any influence on the changes, but I am hugely grateful nevertheless.