‘We planned a wedding knowing I only had months to live’– Jo’s Story

August 13, 2019
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Jo was just six months into a new relationship when she was told she had six months to live. She shares her experience of dealing with her diagnosis, treatment and searching for a matching stem cell donor, while not letting cancer stop her living her life with her partner, Pete.

My diagnosis

I was 22 when I was diagnosed with blood cancer, which is 11 years ago now. It all started with a lump in my neck. I wasn’t too concerned, but when that lump was taken out, the doctors discovered that it was Hodgkin’s lymphoma.

I started treatment straight away, and that went on for five years. Hodgkin’s lymphoma is a blood cancer that’s usually quite treatable. Often people have one round of treatment [chemotherapy] and are completely cured, but unfortunately for me the disease was stubborn.

I didn’t have any other symptoms of the cancer, I wasn’t ill. When we found out it was a malignant tumour, it was scary. I had lots of questions about the future, and whether I was going to be okay.

The beginning of a relationship

I met Pete just after I’d gone into remission for the first time. From the beginning, I knew that he was the one for me. We always had a really open and honest relationship. We’d talk about me being ill and being treated for cancer.

It was really difficult trying to date someone during that time, and have a proper relationship, and work – all those normal things in life. We just tried to push on and do things, and go places, and have dates. It was just about balancing things and Pete was really good with that.

Facing a terminal diagnosis

The day we found out I was terminally ill, we weren’t really expecting that news. The treatment I was on at the time seemed to be working. I’d had a scan and it turned out the results were much worse that we’d expected.

We sat down, and they told us that the treatment had tailed off and the cancer was coming back with a force. It had already spread to my bones and my lungs, and it was continuing to spread. It was very serious.

My doctor said all they could do was put me on quality of life treatment and I actually asked how long I had left. I needed to know. He said, ‘I don’t think you’ll make it past Christmas.’

We were just in shock - the tears came later. I know that we also felt that we needed to carry on and keep having fun for as long as we could. Pete was my best mate and I was just so happy to have met him. So, we just carried on. We booked a trip to Hong Kong actually! It was a hazy time. It’s all very surreal to think that that happened, when I’m still here now.

Pete’s proposal

About a week after we heard the news, Pete told me that he didn’t want me to leave this world not as his wife. I thought he was joking.

We talked about it and a couple of months later, he got down on one knee with a ring and proposed. He did at his parent’s house after a family BBQ, which took me by surprise. When he got down on

one knee, I think my only thoughts were, ‘Oh my god it’s happening now!’ and I think I just cried. But then of course I said yes.

I was still on palliative treatment, which is basically just something to give you quality of life as you’re nearing the end. I was in hospital a lot, and I was quite happy to just stay engaged really. I didn’t know if we had it in us to actually plan a wedding, but we’d go and look at wedding venues. And then suddenly we’d booked somewhere, and we were actually going ahead with it.

Six weeks later we were tying the knot. When we booked the wedding for early November, we were getting married, knowing that a month later it was likely that I would be gone.

Then suddenly, there was hope

Three days before the wedding, we got a call from the doctor to tell us that there was a new drug I could try on a compassionate basis. I would be the first person to try it outside of trials, but I jumped at the chance. Getting this news just before the wedding made the day feel like much more of a celebration.

After our wedding, I came off palliative treatment for a month, during which time I got very ill and honestly felt like I was near the end, then I started this new drug.

Ultimately it didn’t cure me, but it put a massive dent it my illness and extended my life long enough that another new trial drug was available. So, I had that treatment and ended up trying two more after that, before I was eventually able to have a stem cell transplant.

Finding a match

When they first talked about a stem cell transplant, there weren’t any available matches for me. Then there was this unexpected remission – the doctors didn’t think it would hold, but I now had a window to have a stem cell transplant.

Because I’d not had matches in the past, we weren’t too hopeful that there would be someone, but there was – one single match. It wasn’t perfect – I think it was 9/10 – but it was good enough to go ahead. We were elated, but obviously nervous that something might happen, and it wouldn’t go ahead.

That was when thinking about the future suddenly became more real. I knew the transplant wouldn’t be easy, and the risks are huge, but we went in thinking, ‘Just jump in, with two feet, and give it a go.’ Because what else are you going to do?

My transplant

Luckily, from that point, the process was seamless. Anthony Nolan found the donor for me and facilitated the transplant. All I know is he’s a German man who was 23 at the time. I’ve written to him once to say thank you. It was a very emotional letter. I didn’t hear back and that’s okay, I just hope he was able to read the letter and know how grateful I was.

Without him, I wouldn’t be here. I wouldn’t. That would have been the end. That transplant was the only option. I quite simply wouldn’t be here without it.

I was in hospital in isolation for a month, which was hard but it’s a lot less than some people. You feel very, very ill. You’ve got no energy. You’re literally starting from scratch. The best way I can describe it is, you’re pushed to the point of near death, and then you’re brought back again.

I had to learn how to do things again – I couldn’t write, I couldn’t drive – but slowly those things come back. The critical point for me was after 100 days – when I’d kind of know whether the transplant had worked at that point and I was really lucky that my blood test showed that I was ‘99% donor’. Waiting, it doesn’t feel like 100 days, it felt like 100,000.

Our future, together

I have been given a second chance at life, definitely, and I’m trying to make the most of that. I just wouldn’t be here without the donor, I wouldn’t be here without Anthony Nolan. I have a lot of people to thank.

I’ve now been cancer free for six years and this year, our daughter Phoebe came into our world. It’s the most special thing. We can’t believe that we get to do this, that we get to have a family. Everybody is just so, so happy for us. I have been given a second chance at life, definitely, and I’m trying to make the most of that.

If you or someone you know is going through a transplant, the Anthony Nolan Patient Services team is here to support you, including information and advice on dealing with relationships. Find out more at anthonynolan.org/patients

And, if you’ve been inspired by Jo’s story and want to help give more people a second chance of life, find out how you can get involved with our work at anthonynolan.org/8-ways