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.

Back on it

Following a couple of weeks of upset, I was able to have immunotherapy treatment this week. All of those extra medicines seem to have done something to put me back on track. Being back on the steroids has made my appetite return, which is good because the meal replacement drinks are not very nice! I am still a few kilos lighter than I was before so I’m working on putting this weight back on. The only side effect I’m still suffering with at the moment is the occasional sweats.

Other than that there’s nothing much to report. I’m trying to get out and about when I feel able, going for walks in the countryside. My consultant is happy with me and doesn’t want to see me for four weeks, so can’t be bad. Fingers crossed it continues.

No treatment this week

Since receiving the positive results three weeks ago I’ve been experiencing several, frustrating side effects. I’m finding that I’m getting very stiff, particularly in my legs and my back when I have been sat for any length of time, but also in my fingers and my neck. I keep feeling drowsy and nodding off in front of the TV. I’ve also been having cold sweats and shivers, mainly in the evenings which hasn’t been nice at all.

But the biggest problem I’ve had is with eating. My appetite has completely disappeared! I’ve lost at least half a stone in the last two weeks. I literally just never feel hungry and don’t even fancy the snacks and comfort food I would normally manage at any time. All I’ve been able to have is yogurt, strawberries and Complan shakes. I’ve been trying a few mouthfuls of whatever Andy has cooked for dinner, but sometimes just the smell puts me off eating it. I’ve also been vomiting a bit.

My nurse referred me to the dietitian at the hospital who has prescribed me some meals replacement drinks, similar to the ones I had to have post-op last year. This time I have to have three of the drinks a day. Hopefully, if nothing else, it will maintain the nutrients I need and stop me losing weight.

On Wednesday I was due to have treatment, but received a call from one of the nurses to say I wasn’t allowed to because my platelets and haemoglobin were too low. While I had her on the phone, I reported all of the symptoms I’d been having (plus the fact that my temperature has been fluctuating over the last two days), she spoke to my consultant, who asked to see me the following day. He has put me back on the low dose of steroids (he took me off them three weeks ago), prescribed me a course of antibiotics and a course of antifungal tablets. He is going to see me again in two weeks. Hopefully things will have returned to normal in time for my next scheduled treatment on 10th July.