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Something to live for

Posted by
09 Aug 2018

Twenty years ago my husband was diagnosed with non-Hodgkin lymphoma. At the time we had two children who were eight and five. The promise he made our daughter kept him going.

In 1998, we seemed to have a happy future ahead of us. My husband Simon and I had just moved to a larger family house with our two children, a daughter of 8 and a son of 5. Within a week of moving in, I noticed a small lump on his neck, and insisted he went to a doctor (against his wishes, he knew it was nothing).

After a few months of dithering the doctor finally sent him for a biopsy, and non- hodgkin lymphoma was diagnosed. We had no history of cancer in our family and had no idea what this was, whether we should be frightened. At the time it was really hard to find information.

Our daughter was old enough to realise something was wrong, so we tried to explain what we knew to her. She looked her daddy in the eye, as only a child can do, and asked if he was going to die? He looked back at her and promised he would be there to walk her down the aisle when she grew up.

We were lucky that the NHL was low grade, and for the next nine years he was on a watch and wait with no treatment (we had been told to hope for three years like this) during which time we all just got on with our lives, working and being a family. We treasured every minute because we realised how easily it could be taken away.

In 2008 however, he started to get sicker, and needed to start chemo, at first just orally. Through it all Simon kept working and just getting on. Then blood tests revealed the NHL had become CLL, and things sped up. He started full chemotherapy- to make it harder we live on the Isle of Wight and had to travel to the mainland to Southampton for this, so every month we went over for two days of chemo, then a day of rest, before he went back to work as if nothing was happening.

Sadly, this didn't work, and in December 2009 we had the news that without a bone marrow transplant he would only survive at most three years. We travelled home on the boat, and as we did it started to snow. We made it home, but then the roads were blocked, giving us a day off work to talk about what to do.

Our daughter was now 19 and at a music school in London, our son just 16 and doing his GCSEs. They were both at home for Christmas so we all talked together. Simon was not ready to leave them. Again he got lucky- there was no family match, and no donor from the UK, but he was found a match from a lovely lady in Germany, who had watched a TV programme on donation and felt God tell her to do this. Just at the time we needed her! We are not religious, but this was very special.

Simon had to wait until September 2010 to actually have his transplant, again in Southampton in his isolation room. Because of the boat journey none of our friends could just pop over to visit, so he stayed in his room with only a few family members to see for nine weeks. The transplant was not easy, he had severe reactions, and once I had to call our daughter home from college telling her he may not survive the next 24 hours.

Again we got lucky, and eventually he was well enough to come home. It was a slow road to health, but he was determined to survive. And he did. Life still has complications- due to the reduced immune system he contracted viral encephalitis, again near death and on life support we had to call our daughter back, but again he pulled through.

He now has brain scarring and epilepsy as a result, and has finally had to give up work, but he remains as determined as ever. And on July 21st 2018, nearly 20 years after making that promise, he walked our daughter down the aisle to her wedding. A beautiful, emotional day. In his speech he said how that promise kept him going through the hardest times. There wasn't a dry eye but still so many smiles!!



Hello Claire, thank you so much for telling such a moving story! I cannot even imagine how tough it was for you and your family during this time. It is lovely that your husband was able to walk your daughter down the aisle and keeping a promise for 20 years. Very emotional and such a powerful story. Thank you for writing Claire.