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:

Update

Since I last wrote, my granddaughter has turned one! I baked and decorated her birthday cake, the first cake I’ve done in a few years, but it came out well.

Nothing much has happened with my cancer or treatment since the last post. I’m still waiting on the port to be fitted and treatment is still fortnightly. I’ve been trying to reduce the amount of pain relief I am taking and I have successfully reduced the strength of my Fentanyl patches from 87 micrograms down to 50 micrograms. This has been a gradual process over a number of weeks as the withdrawal symptoms are not nice. My muscles and bones have been aching really badly. I’m sticking at 50 micrograms for now until the aching settles down as it’s getting a bit much.

My children lost their grandma (on their dad’s side) to bowel cancer last week. This has been a bit strange for me as it was around this time last year that I was told there was nothing else they could do for me and I was sent home to die. I feel very lucky that the immunotherapy treatment has given me this extra time with my family and friends.

We have got a new puppy, a female border collie named Luna. She is now 10 weeks old, keeping us on our toes and giving us a reason to go out walking every day. I can’t believe that this time last year I could hardly walk and was using a wheelchair!

My next scan is not due until the end of December, so unless there are any other developments, I’ll probably update everyone then.

Latest Scan

I have celebrated my 41st birthday since I last wrote my blog - another milestone I never thought I’d see. I was certainly able to enjoy it much more than last year. It ended up being a series of celebrations lasting more than a week: two meals out with friends and family, a visit to the Ipswich Escape rooms and a glass blowing course. I also had a surprise visit from my youngest brother, which was very nice.

Yesterday I finally got my scan results, a week later than was originally planned, as for some reason the reports from CT scans are taking ages at the moment. The results showed that there has been no further disease progression. So basically that means the tumours have remained the same size. I felt a bit flat when I was told; I think I was really hoping for more shrinkage like last time. But the consultant assured me that it is good news as it’s what we want the drugs to do (either slow or stop disease progression). He also tried to convince me not to worry in the build up to each three month scan because if there were any disease progression, he is sure I would notice it in myself as I would begin to feel poorly again. He reminded me that the effects of this immunotherapy treatment have been really successful as, in his words, I have “stood up and walked out of the coffin!”

Finally, I have been referred to have a port fitted. This is to replace my PICC line and is an access point embedded under the skin in the chest. The advantage of this is that it will only need to be serviced once a month rather than once a week with the PICC. This will make going away a lot easier as we won’t be restricted as much by dates and having to get back to Ipswich for weekly PICC line care.

Anniversary

It was a year ago today that I married my best friend and my absolute rock. It was a bit touch and go that I would actually make it to the wedding let alone the fact that I’m still here today celebrating our first anniversary. I’m so grateful for this and every day.