Wednesday, March 18, 2020

Finally!

Yesterday I finally had my operation to fit my portacath. I think it was just in time too, as it seems from today they are cancelling what they call non-urgent operations due to the Covid 19 outbreak.
I’m not sure how much longer my PICC line would’ve lasted to be honest as it had been in for about six months longer than normally recommended and had started to slowly work its way out. 

The operation was under a local anaesthetic so I thought it would be fairly straightforward and harmless, but it was not... It was horrendous! 

It took about 45 minutes, laying down with my head covered in surgical sheeting which was stuck to my face and hair with sticky tape. They cut two holes, one in the neck to put the line down towards my heart and one in my chest, where they cut a ‘pocket’ to place the port. During this, there were several occasions where I had to yell out in pain as I could feel them cutting me as the anaesthetic hadn’t been effective in those areas. They just injected more anaesthetic and carried on. They then had to force the line between the two incisions to join it to the port; it felt as though they were tearing my skin apart! 

Anyway, too much detail! 

I’m really sore and swollen today so taking extra pain relief. Hopefully it’ll heal quickly. 






Andy’s petition has really taken off; it now has over 120000 signatures! https://www.change.org/p/uk-parliament-stop-the-unfair-cancer-treatment-lottery Hopefully it might make a difference.

The BBC have written a news story about me: https://www.bbc.co.uk/news/uk-england-suffolk-51852060
Although, Facebook, for some reason, blocked the story from being published on my Facebook page as it ‘goes against community standards’. I’ve complained to them. Apparently, the story was also mentioned on BBC Radio Suffolk, though I didn’t know about it, so missed out on hearing it.

Due to the Coronavirus, we are staying at home now as we are both in the ‘vulnerable groups’ category (me with cancer and Andy with diabetes). Let’s hope this passes sooner rather than later.

Friday, March 6, 2020

Pushed from Pillar to Post

I have emailed several charities and organisations to explain my situation and ask for their support. Many have not even replied, but those who have have basically said they cannot help me and then pointed me in the direction of another organisation who has already told me they can’t help me. They are literally recommending each other! On the plus side, Andy has started an online petition on Change.org. To try to persuade NICE, the government and the NHS to look at the funding and licensing of this drug for bowel cancer again. It already has over 1000 signatures in just 1 day. The link for the petition is here: https://www.change.org/p/uk-parliament-stop-the-unfair-cancer-treatment-lottery Please sign it. We are now in the process of trying to obtain contact details to promote publicity for my cause in the media. It’s an area we know very little about so we are feeling our way.

In other news, I finally have a date for my portacath to be fitted: 17th March. After that we should be able to book a proper holiday (a bit apprehensive about doing so with this coronavirus stuff going on though!).