“On 13th January 2006 I wrote in my blog
“In the evening, Mum rang to say that Dad’s illness has been diagnosed – he has a duodenal ulcer. Hopefully now we know what is causing all the pain, they can start some treatments. It’s a relief to know that it isn’t anything even worse than that. Mum is a cancer survivor and I guess we’d all feared the worse, so I thank God that it is something that hopefully is manageable.”
My Dad had been suffering from increasing stomach pains since the end of the summer of 2005. He’s seen the GP, and then a gastroenterologist and had finally been for a biopsy which resulted in the news that he had an ulcer. Tragically, what they didn’t tell us at the time was that the biopsy had also revealed the fact that he had coeliac disease.
(Extract from Coeliac UK website) Coeliac disease (pronounced see-liac) is an autoimmune disease. Gluten, which is found in wheat, barley and rye triggers an immune reaction in people with coeliac disease. This means that eating gluten damages the lining of the small intestine. Other parts of the body may be affected.
On 28th February 2006 I wrote:
“In the evening, I heard from my parents – Dad has been diagnosed as having coeliac disease. As I have spent the past few months looking into gluten free diets, for the boys, as I was able to help my Mum understand what this meant. I rang up the main supermaket chains and asked them to post her a list of their gf products, and tomorrow I will drive up to take her shopping – plus take her some bits that I have here.
It’s a shock, but at least now we understand why the treatment for the ulcer wasn’t working, and why he has been so ill. The good news is that this is something we can fight/deal with. However, my Dad is someone rather set in his ways over food and the sort of changes he now needs to make will be tough. In his late sixties, to start having to be so very strict, careful, reading labels etc on everything, will not come easily.”
This information only came to us because Dad had gone for blood tests which had shown he had severe malnutrition and he was called into hospital in the middle of the evening. That was when it was fairly casually mentioned – as if we already knew – that he had coeliac disease. In the preceding weeks Dad had been on a diet suitable for someone with an ulcer, and had tragically been eating foods almost exclusively containing gluten – making him sicker by the day.
Having hospitalised him, the doctors ran a series of tests and on 3rd March we were told that his CT scan results showed the possibility that he may have lymphoma. The results were “inconclusive” so they were going to run further tests. You would think that being in hospital, he was being well catered for. Think again. My entry for 7th March 2006:
“What I have found unbelievable though, is the hospital food. We told them upon admission that Dad had (literally hours previously) been diagnosed as having coeliac disease. Bear in mind this was a man suffering severe dehydration, malnourishment, chronic pain from having been eating gluten, plus a duodenal ulcer, and mouth ulcers. First off he was on a drip, so it didn’t matter. However, once he went on solids they were sending up the most appalling food. Ok, here in the UK hospital food is notoriously bad (despite very public policy changes, new ideas, new charters…). But according to the hospital kitchen Dad was the only one in the hospital with coeliac disease. They had to order in a special diet. In the meantime, he was offered jacket potato with beans two days running, no veg, no fruit, no complex carbohydrates.
Now, apparently, he is on this “special menu”. Last night he was offered chicken curry. Ok, so they claim it is guaranteed gf. But curry? For an ulcer? For someone with a severely damaged gut and possible intestinal cancer?! You don’t have to be a nutritionist to realise that sucks. For pudding he was offered rice pudding – which Dad hates, and anyway is milk based which he needs to avoid as a recovering coeliac. The food manager claimed Dad would be given a choice – but I don’t think you can choose between one option. There was jelly on the list but he was told he couldn’t have it. This is the same jelly they’ve given him 2 days running.. We’ve complained, been “reassured”, again and again but nothing seems to be improving. I’m talking about going to the local press but Roarke says he’ll give the food manager one more chance to explain this.
On top of that, Dad (understandably getting his head around the change of diet, health and the news about the cancer) took a biscuit off the drink trolley in the morning. The poor guy was soon in agony again. I think it is the responsibility of the hospital to ensure all staff bringing him food/drink are properly trained. There is a huge sign taped over his bed saying gluten free, and a copy of the restaurant card I did for him, explaining what that means. No one should have offered, or allowed him the biscuit in my opinion.”
More tests followed over the next few days, but things didn’t get any better on the food front. 12th March:
“Midday, we went up to Mum’s again for lunch, then we took the boys in to see their Grandad. Sadly, he was in pain again today. He still hasn’t seen the dietitian, and he is still not receiving proper GF meals. With no guidance from either doctors nor the kitchen staff, the nurses and him are deciding on a case by case basis if something is “safe” for him. Judging by the pain he was in, I think their judgement is (understandably) off. Once again, we complained. The nursing staff are fabulous and are also distressed at their inability to help him. We provided them with “ammunition” to hit the doctors/kitchens with, courtesy of Coeliac UK.
Dad has lost more weight since being in hospital which is causing us all concern. It is so very upsetting to see how thin he is – I can circle his thigh with my hands. The nurses have offered Mum open visiting (rather than 2pm to 8pm) and access to their staff microwave, so that she can bring in meals for him. Whilst we all agree that this shouldn’t be necessary, the priority is to feed him – the recriminations and arguments are secondary. But believe me, I am not going to let this go without a fight. Fortunately, Dad managed to stay reasonably bright so that the boys weren’t distressed, which was sweet of him.”
On 14th March my Dad was discharged, as the hospital basically admitted that, whilst he awaited his test results, he was better off at home where Mum and I could ensure he had a gluten free diet. He went back for his results 9 days later, to be told they still weren’t sure whether or not he had cancer and he would need yet another biopsy, which he had on 27th March.
Three days later, at home, his bowel burst and he had an emergency operation which removed 75% of his bowel.
It was, however, another week before they finally told us that during the operation they had been able to confirm that he definitely did have lymphoma. It was a huge shock, after a roller-coaster few months. We were totally dazed and` very scared as to what would come next. Dad was so malnourished from having gone so long with undiagnosed coeliac disease, and having just had a major operation, and the doctors were unsure whether or not he would be able to stand any treatment for the cancer which they feared may have spread beyond his bowel – but he was also in no state for them to do further tests or examinations to see if indeed it had spread.
Eight days later, on 16th April 2006, I was called into the hospital and told that they were switching Dad to palliative care as they couldn’t do anything more for him. Mum and I spent a week by his bed – including my birthday – holding his hand and waiting. On Saturday 22nd April 2006:
“Dad finally found peace and wholeness at 9.25am on Friday 21st April. My Mum and I were there, holding his hand. The doctors had given him less than 24hrs to live, on Sunday – but he carried on fighting. I spent between 8 and 9 hours every day at his bedside, not being able to tear myself away. He had little awareness, but I held his hand and spoke to him quietly, and I am sure he felt me there.
At 4.30am on Friday the hospital rang us and said to come quickly – it was still another 5 hours before the battle became too much for him. In all honesty, those 5 hours were hell and about the most appalling experience I could imagine – it was not a “pretty” death.
But he is at peace now, resting in the Lord, whole and healthy.
My pain is huge – he was such a good man, such a good father, that he has left a big hole. But I’d rather have the pain of millions of memories than have had a father who didn’t impact upon my life in such a positive way. “
Everything I bake, everything I do at Annie’s, is all in his memory.”