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!

Immunotherapy

I had my first round of immunotherapy a week ago and so far the only side effects have been tiredness and nausea/sickness. I can’t complain though because these side effects are pretty mild compared to what I’ve experienced in the past. Also, for the last two weeks my haemoglobin has been high enough for me not to need a blood transfusion. I’m not sure why, as nothing has changed other than starting the immunotherapy, which has low haemoglobin listed as a side effect.

I have, in the last couple of weeks, found that I am feeling much weaker. My fingers are tingling and sometimes numb and the numbness in my feet is worse, meaning I’m finding walking quite difficult at the moment. I have bought a three wheeled walker which has helped a lot, enabling me to get about without needing to resort to the wheelchair as much. It does make me feel a bit like an old granny when I’m using it though. I’m hoping it’ll keep me a bit more active so that my muscles don’t degenerate as quickly.

My hair is growing back quite rapidly, but darker and and with a bit of a curl which I didn’t have before. I don’t like it, but maybe it’ll be better once it gets a bit longer.

A Year On...

It is exactly a year ago today that I received the diagnosis of bowel cancer. Wow! What a year it’s been. After three lines of failed chemo treatment, sepsis, multiple stays in hospital, I didn’t think I’d still be here. But, I am, and I am very grateful for that. I have so much to be thankful for with my wonderful friends, family, nurses and doctors. I’m just taking each day as it comes and ‘what will be, will be’.

I also had some news at the weekend from my consultant. He had, with little hope, written to a drug company which produces an immunotherapy drug that is unavailable on the NHS, asking them about the possibility of supplying it exclusively for me to try on a named patient basis. He was expecting a, “No,” but they have said, “Yes”. A course of treatment is really expensive (in the hundreds of thousands), but apparently they will supply it free of charge! There is little evidence of any effectiveness of this drug on bowel cancer, but it’s a door of hope when we had accepted that there was nothing else left to try. I’m not sure when the treatment will begin, but hopefully soon. I hope that the side effects are minimal as I’ve been feeling a lot better this last week or two.

Retired

So, the day has arrived for my official retirement. Thanks to everyone who has sent flowers, cards and well wishes. I really appreciate it. It’s been quite an emotional day. 

I am so lucky to have met and worked with so many fabulous people in education and consider myself privileged to have had the opportunities I have had in my career. It’s so sad that it had to end but I’m grateful for the time I did have to devote to a job I absolutely loved.

There’s nothing more to say.

Third Line Chemo

I have a new consultant who started me on the third type of chemo just over a week ago. Since starting on this, I have been vomiting a lot and feeling sick, as well as having severe cramping type pain in my abdomen. On Thursday I saw the consultant again as my tummy had become distended and the symptoms were not subsiding. The consultant decided to take me off the chemo as it was making me so ill. He rightly said that at my stage of cancer, it’s a case of drawing a line between the benefits of treatment and quality of life. We know that any treatment given now will not cure me and the best it can do is prolong life.

It turns out the distended abdomen was a blocked bowel and this has now release itself, though there is still pain in that area. The consultant prescribed some different anti sickness tablets and also some steroids so we’ll see if they help alleviate some of the symptoms. 

My neuropathy in my feet has worsened to the point that there is permanent numbness from the toes to the bridge of the foot. It’s a strange feeling, like when you’ve been walking in the snow for a long time and your feet feel numb. The doctors have said that it is permanent nerve damage from the previous chemo. It makes walking any distance quite difficult, so the wheelchair will be used increasingly I should imagine.

My retirement due to ill health is now confirmed, so I will officially cease employment on 14th February. It has been very emotional dealing with this and the fact I can’t ever go back to work, but hopefully this will now bring closure to the work side of things.

Lastly, I just want to thank everyone who has visited, messaged and read my blog. I’m absorbing all of the love and it really does help me along when I’m feeling low.

Bad News

I have received a telephone call from the Royal Marsden saying that I have not been successful in getting onto the immunotherapy trials due to my low levels of haemoglobin. They said it wasn’t fair to go through another screening process which is time consuming with little prospect of success without multiple blood transfusions which the trials don’t allow without a three week post-transfusion gap.

So I am waiting to speak to my oncologist to get started on Lonsurf (what I believe to be the last type of chemo treatment available to me).

Physically I haven’t been too bad. I’m struggling with dizziness and in the last couple of days my feet have become puffy and they hurt. I’m still getting nausea in the morning and when I get too hot. 

Also, I am still being plagued by night sweats, which Andy is great with helping me change the bedsheets in the middle of the night!

On the plus side we had a lovely Christmas with my children and the baby.