Jessica Goudkuil tells the story of her Dad before he lost his brave battle with scleroderma.  Her honest account highlights the frustrations and hard decisions that all the family went through. 

"My father was diagnosed with Non-Hodgkin lymphoma around five years ago. He was treated with chemotherapy and was given the all clear 4 years ago. However, the chemotherapy had left his immune system compromised, and he went on to develop the condition we now know was scleroderma. This principally effected his legs and hands and caused him a great deal of pain. In an attempt to treat and minimise the effects of scleroderma, he was treated with high dose steroids. Unfortunately this further suppressed he already weakened immune system.

When he was infected with enterovirus shortly after this, his body was unable to rid itself of this infection. He developed liver failure from enterovirus hepatitis and subsequently lost his hearing. Thankfully, and against all odds, he managed to survive this illness. But it left him with painful worsening scleroderma. Given his compromised immune system the options available to treat this were sadly very few.

My fathers’ legs caused him considerable daily pain, and he struggled to sleep at night as a consequence. Despite involvement with the Pain clinic, he was never pain free again. Eventually it was decided that he may benefit from a form of light treatment called PUVA that was offered at Guys hospital. So in early 2020, just as the Pandemic struck, he began regular treatments at Guy’s and St Thomas Hospital in London.

This was challenging to say the least. My brother and I, would take it in turns to collect him from Diss and travel by train down to London for his 3 day treatment stints. Whilst this was exhausting, this gave us individual time to spend with our father, for which I will be forever grateful. We enjoyed the Pandemic version of London, which was quiet and peaceful and we took in the sights and experiences that London has to offer.

Unfortunately the treatments were not successful and my Fathers condition remained unchanged. The treatments ended in November 2020. From that time until his passing, he was in constant pain and distress.

In June of this year (2021), Dad became really unwell. He was admitted to Norfolk and Norwich Hospital with severe chest pain. He was diagnosed with aspiration pneumonia. Given the Covid restrictions in place, he was only allowed one visitor for an hour a day. No other family members could visit. 

I would travel one and half hours each day to sit with him. Trying, (or so it seemed at times), in vain to speak to the doctors and find out what was going on. I could see the pressures the NHS staff were under, but my Dad was my focus and I got frustrated at times that answers were not forthcoming.

The consultants concentrated on treating his pneumonia which was thought to be due to worsening aspiration. Within a few days, he was no longer able to swallow at all. There didn’t appear to be an explanation for this. More tests, more days, more waiting. Eventually I was informed that his oesophagus had thickened due to the scleroderma and this would never recover. He wouldn’t be able to eat his favourite food of custard again. Even liquids were impossible. By this time my father was very frail.  He had no quality of life and had been robbed of the things he had once readily enjoyed. After much soul searching and discussion with my father and the rest of our family, we made the decision to move him for palliative care at St Nicholas Hospice in Bury St Edmunds. He didn’t much enjoy the hour journey there and described it as torture, but got to see the rest of the family and his lifelong friends who he had been missing;

Dad died a week later."