Kick Cancer In The Canucks!

Hi, my name is Claire and I'm fundraising because cancer sucks.

Wednesday 2nd February 2022 changed our lives forever.

But first, some back story:

I married my Canadian husband, James, back in August 2019, in an intimate ceremony with just my parents in attendance. We decided to defer booking our honeymoon until the following year, to the Spring of 2020.

Well, we all know how that went.

Not to worry - we had a lifetime ahead of us. Or so we thought.

James is a teacher. In December 2020, he caught Covid-19 and brought it home to me. We both were hospitalised over Christmas with James nearly dying. Thanks to some amazing work by the wonderful staff at Chesterfield Royal Hospital, not only did he pull through, but he also came home on the same day as me.

The long road to recovery was ahead. However, we haven't recovered.

James initially did show some improvement. By the end of the Spring term in 2021, however, he was really suffering with increased pain and extreme fatigue. The Summer break didn't improve things - if anything, it got worse. Everything was being attributed to Long Covid.

The Christmas holidays arrived and James didn't feel rested at all by the time they were over. In fact, he had started suffering from night sweats, increased pain and fatigue and had also identified some lumps in his neck.

The return to School in January 2022 was short lived. James very quickly became seriously ill. His pain levels were getting exponentially worse, the night sweats extended into the day and all he wanted to do was sleep. Worse was that there were more lumps appearing, with his spleen so swollen and visible. I'm not going to lie, he was that ill that I honestly thought I might lose him before they finally diagnosed him.

Our GP was excellent. Chased down the hospital. Got all the tests organised.

On Wednesday 2nd February 2022, James was called to the hospital at short notice to receive his diagnosis: Follicular Non-Hodgkins Lymphoma (FNHL).

FNHL is a blood cancer affecting the lymphatic system. There is no cure. Treatment is aimed at making the cancer dormant and maximising time between treatments.

Our world crumbled.

Very quickly we were into the practicalities of treatment and rearranging our lives. James was signed off long-term sick and we were advised to isolate as James' immune system was seriously compromised. We also had to cancel our much anticipated belated honeymoon to the Dominican Republic that we'd booked for Easter 2022.

Less than a week after diagnosis, James started his first course of Chemotherapy: O-CHOP. This completed in June 2022 and was followed up with a CT scan. At the appointment in August, the news was good - time to move to maintenance treatment. However, by the beginning of September, James' symptoms were back and lumps were starting to grow on the back of his head.

James got sick in the Autumn, which delayed treatment until January of this year (2023), when he started a course of R-ESHAP chemotherapy with the target being an autologous stem cell transplant at the end of it.

R-ESHAP is hard. It involves 6 days in hospital with round the clock infusions. But James did it and got through it - all 3 times.

The first attempt to harvest stem cells was unsuccessful. Not only that, the PET scan showed that the lymphoma had only had a partial response and was still active. So active, that before the next treatment started, the lumps began to grow again.

The next treatment was a course of BR chemotherapy, again with the autologous stem cell transplant as the ultimate goal.

The second attempt to harvest stem cells was again unsuccessful and the most recent PET scan is still lighting up with active lymphoma, but it appeared stable. In fact, there hadn't been much change at all from the previous two scans.

Where does that leave us?

James' specialist has told us to go and have a break and scheduled him for a review early in November. The last 18 months have involved a total of 17 doses of chemotherapy and have ravaged James, physically and mentally. A break from treatment, to give his body chance to recover was needed. We were hoping that the lymphoma would remain stable at least until November, if not beyond.

It hasn't.

Barely a month after the last dose of chemotherapy, the lumps have began to grow again.

The next treatment option is to enrol in a clinical trial for immunotherapy. This is a 12 month treatment plan that has very uncertain outcomes.

In fact, our whole future is uncertain. The dreams we had of growing old together are, sadly, unlikely.

Which is why we want to have a holiday in the sun. Why we want our honeymoon at long last, whilst we know we have the chance. To quote James:

"I want to sit in the sun somewhere for a few days before I commit to

another year of treatment. I want to avoid the post chemo feeling crap for a little while and try and enjoy some of the things that I took for granted for far too long."

We weren't going to put up this fundraiser. We don’t like the idea of asking for money. So many people are struggling day to day right now to feed their families and heat their homes. We feel so guilty for wanting a holiday in the face of all the problems people are up against.

We've started trying to raise the money ourselves, selling everything from clothes no longer worn to comic collections read and now gathering dust. We worry that we will be looked upon unfavourably if we don't offer a fair exchange. However, so many of our friends have requested us to do this, that we have. You will never know just how much your love and support means to us.

How we'll spend funds raised:

Firstly will be a holiday in the sun, along with any related costs. We're going to need some accessibility adaptations too as well as needing to factor in cattery costs.

Remaining funds will go towards making our home more comfortable. We need new sofas and also a new mattress.

After that, we're going to donate monies to Chesterfield Royal Hospital's NGS Macmillan Unit. That is where James has had most of his treatment and the team there have been exemplary.

Memo: About Me

(even though it's not really about me)

In 2019 I was diagnosed with fibromyalgia, a chronic pain and fatigue condition. Long covid has exacerbated my symptoms and now I'm on a pathway for a diagnosis of myalgic encephalomyelitis (ME). This and caring for James has cost me my career. Being a carer and disabled is hard. It takes a toll.

Thank you again from the bottom of our hearts for all of your support in all its forms.

Claire & James

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