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.

Long Awaited CT Scan Results

After three months of immunotherapy treatment, last week was time for my CT scan. Since Easter I have been feeling better and better. My energy has come back and I’ve been able to do more and more. Andy and I have been going out a lot more and I’ve climbed the stairs of Layer Marney Tower (eight storeys!) and walked around the Suffolk Show (more than 10,000 steps!). My consultant has been very happy with my response to the treatment in terms of how well I have been feeling and the lack of side effects (which he says can be horrendous and even fatal). My tumour markers in my blood tests have gone down and my haemoglobin remains stable.

Up until this point, my treatment has consisted of Nivolumab and Ipilimumab, but will, from now on, only be the Nivolumab as what they call maintenance treatment.

Last week I had my CT scan (I haven’t had one for six months); We had to wait until this week to get the results. I didn’t get my hopes up as all previous meetings about scan results have delivered devastating news. So, bracing ourselves for more bad news, we went into the consultation room. But this time it was good!

My tumours have all shrunk! Some, according to my consultant are a third of the size they were! The consultant then went on to try to explain, in layman’s terms with diagrams, how the drugs work and how a multitude of characteristics of the cancer must fit certain criteria for the drugs to be effective. Due to the fact that the drugs only seem to work on certain types of cancer (fitting the criteria) and that the side effects are often so awful that treatment has to be stopped, I am blessed because the treatment has been so effective for me. I owe a huge amount of gratitude to Bristol Myers Sqibb for allowing me to have this treatment for free. Also, they have offered to fund my treatment for the next two years or until the disease progresses further, whichever happens sooner. 

So, overall, things are looking up right now and it’s good to feel more positive about life.

Feeling Good

I haven’t written for a while, mainly because nothing much has happened. I have now had three rounds of immunotherapy and feel absolutely fine. I would actually go as far as saying I feel better than I have for months. The only side effect from treatment has been vomiting, which I am just coping with. I have been getting out and about more and more, which has increased my strength so much that I no longer need my walker to support me. Stairs are still really hard, but I can get up them now, when before I couldn’t. We spent the Easter weekend in a cottage down in Somerset and visited Bath and Longleat. Going away was something I never thought I’d be able to do again. 

My haemoglobin has remained high enough (90,95 and 120!) so I haven’t had to have blood transfusions. This means less time spent in hospital and more time to get out and do other things.

So, overall I’m feeling good and long may it continue!