Latest scan

I just go the results back from the CT scan I had at the start of the month and  it shows that there has been a slight reduction in the size of some of my diseased lymph nodes. The rest of my tumours remain unchanged. So we can now breathe again for another four months.

Not much else has been happening really. I managed to come off of the Fentanyl in September but I’ve had to go back on it recently as the pain in my abdomen when I wake up in the morning was becoming unmanageable with paracetamol and Oramorph.

In other news, we bought a van at the start of September and have begun converting it into a camper van. This is proving a tricky, but enjoyable challenge. We’ve tried to document the transformation with a photo diary, which can be viewed here: 

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

I had my flu jab a couple of weeks ago and we’re now just staying at home as much as possible to avoid the dreaded COVID-19.

Stay safe

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.

Discovering type 1 diabetes through DKA

I was taken to hospital by ambulance on Wednesday morning in terrible pain and continuously vomiting; I couldn’t keep anything down! I had been having issues with my blood glucose levels, which I had been monitoring for almost a week to report back to my GP during a phone appointment scheduled for Thursday. The readings had been fairly high all week and the doctor thought it may be my steroids, that I take daily, causing the problem.

 

By Tuesday, I had lost my appetite and I knew things weren’t right. I had an awful, sleepless night on Tuesday night so 111 sent me an ambulance on Wednesday morning. After blood tests at hospital, they diagnosed Diabetic Ketoacidodis (DKA), basically a very dangerous build up of acid in your body. It was then I was told that I was the equivalent of a ‘Type 1 Diabetic’ and would need to have insulin for the rest of my days. They have put the cause down to one of three things: the steroids (as suggested by my GP), the fact I had part of my pancreas removed during my initial cancer surgery in 2018, or the Nivolumab (the immunotherapy I am currently on). They won’t really be able to say at the moment as I currently need to stay on the two medicines if I can. 

It is now Saturday and I’m still in hospital while they try to get my insulin levels more stable.

It’s another big thing to get my head around, but to be honest I’m more worried about them stopping my cancer treatment or catching this horrible Coronavirus in the hospital (I’m really meant to be self isolating at home as I’m on the list of “shielded” people who have to stay inside for twelve weeks, so hospital is not a good place for me to be).

I’m hoping I’ll be able to go home tomorrow and look forward to a major change in my diet! 😱 (not!)

By the way, Facebook sent me an email apologising for blocking my BBC news story. 😊

Stay safe and stay at home everyone. X

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.

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!).

A New Project

The scan results are back... and it’s positive news. My tumours have remained stable at the same size once again. This is a huge relief as I’ve been having a lot of abdominal pains lately and had convinced myself that the cancer had started to grow again. My treatment continues fortnightly. I’m still waiting for my port to be fitted (typical NHS waiting lists!). I’ve reduced my Fentanyl dose down to 25micrograms, but can’t go any further than this or the pain is too much. My issue now is that I’ve been on this immunotherapy drug for almost a year now and the drug company only said they would fund it for two years or until the cancer progressed, whichever is sooner. My consultant has suggested I begin looking for funding support sooner rather than later, as there is no sign of this drug being approved by NICE for use in treatment of bowel cancer on the NHS. It’s really frustrating because the drug is licensed for some other cancers such as lung cancer and renal cancer, it’s just that it hasn’t had as good a success rate with bowel cancer so they don’t seem to want to push for licensing. I intend on spending the next few weeks writing to charities and rich people to see if they can help me out as my treatment will cost over £5000 a month once the two years are up. I am also going to write to the drug company to plead with them for an extension to the free treatment and to push for licensing Nivolumab for treatment of bowel cancer on the NHS. I’ve set up a GoFundMe page to start some crowdfunding aiming to raise enough for another two years of treatment. The link is: http://gofundme.com/charlenes-immunotherapy-lifeline

In other news, we had a lovely Christmas at my mum’s and then a second Christmas with my children and granddaughter. We’ve finally finished decorating the lounge-diner and it looks great.

I’ve designed and had a tattoo to mark my strong friendship with my two best friends (we all had matching ones done):

The puppy is growing lots and has been attending training once a week. She makes sure I get out for a walk every day: