DEAR DAD,

I know I didn't, but I feel I let you down.

If only I had headed up when I got the call on that Sunday evening.

But when I said I would come up the next day and visit on Tuesday the Nurse did not press any urgency.

And the Doctor and MacMillan nurse had said nothing was imminent. 

If only I had started my drive up to Lincoln later that evening as I had thought about doing, after all, it was a bit unusual for the hospital to call me.

If only....

If only I had headed up straight away, I would have been there, by your side when you finally got too tired and slipped away. If only I had headed up straight away, you would not have been alone. That date, 13th September 2021 forever ingrained in my mind, as is 2nd December 2011 when we lost Mum.

If only the stupid GP had not refused to see you earlier in the year when you were really having problems swallowing...... "oh, we don't do throat examinations... because of Covid...."

7 weeks in hospital is a long time and as each week went by, the hope that you would come home faded a bit more. The throat cancer was not in the forefront of my mind.... the medical team said there was no imminent cause for concern and the planned radiotherapy was expected to shrink the tumour and give you more time. Once they got your feeding tube sorted, the barrier I saw to your discharge was not medical, but physical..... weeks in a hospital bed had meant your already limited mobility was now non existent and the hospital team did nothing to get you up and out and walking around. I talked to the nurses a few times about this and they kept telling me they would put together a care plan when you were discharged, yet never seemed to understand that you needed to be able to move around in order to get discharged....... a catch 22. And you were so stubborn, you insisted you would be able to climb the stairs to sleep in your bedroom once you got home.

I only got to see you for one of those seven weeks. I wish we had had more time. Even then, my visits were capped at 1 hour. This was a time you actually appreciated technology for once, and I loved seeing your face light up when I video-called Angie on messenger and you got to see her. Even those brief calls were hard for you and you would often just conk out and sleep during the call! I bought you the newspaper so you could do your crossword....even though you did not wait until I had left before you got dug into it!!! And sometimes you would just close your eyes and sleep. It was enough for me just to be there beside you, we did not have to talk and it was OK for you to nod off. I liked it when you woke from your brief snoozes and realised I was there and seemed happy to see me.

If only Lincoln hadn't had the highest Covid infection rates for those few weeks in August, then the hospital would not have been closed to visitors and I would have been able to visit more. It still pains me that I never saw you for those last 4 weeks. When I couldn't visit, we chatted every day on the phone, but it was hard for you to speak, your throat was so bad, I could hardly understand what you said, especially if you called later in the day as your voice seemed to deteriorate as the day went on.

I wonder what went through your mind while you lay in your hospital bed during those weeks. Early on the senior nurse, Sophie told me that you were "down" and that you felt you were dying. You were so tired and could not get out of bed. Then on other days you were really bright and looking forward to going home.

But you had been saying for a long time "Oh Jacqueline, I'm tired” or, with a big sigh, “I'm weary Jacqueline". I never knew if you were trying to tell me you were tired of living or just tired. I was scared to ask in case it was the former as I knew I was not ready to lose you.

When you finally got the cancer diagnosis, the Doctor was a Twat with a capital T. He spoke about surgery and then when I asked when the surgery would be done, the MacMillan nurse had to intervene and tell me I had misunderstood. There would be no surgery. Your existing heart problems meant that you would not survive the operation. There was no misunderstanding on my part and I told them that. The doctor was trying to deliver bad news in a nice way but he had an atrocious bedside manner. He was just not capable of delivering bad news in a succinct way. I remember I shouted at him and got very angry, asking why he spent 5 minutes wasting all of our time talking about surgery knowing full well it was not an option. I was not interested in a “generic” approach - I needed to know what he was going to do for YOU. Essentially, he had delivered a death sentence and I needed to know what was going to happen and if I needed to get my sister on a plane from Singapore. Immediately the MacMillan Nurse told me that nothing was imminent. It could be months, or years...... a biopsy was booked in to investigate further.

That day you got the diagnosis was a horrible day. You were due to go for an x-ray and the porters arrived while the Doctor was with us. Once the Doctor had delivered his news, you were whisked away for your X-ray and I never got the chance to really talk to you about your diagnosis as my hour's visit time was well passed. I never got the chance to give you a hug and tell you things would be OK. The next day the hospital suspended all visitors and I only saw you once more after that day. 

I can only imagine what it must have been like, stuck in your hospital bed, knowing that the cancer was not curable. When I got my cancer diagnosis in 2003, I was in bits. I cried solidly for 2 days and had you and Mum and a few close friends to help me through it. You were alone, isolated. And that makes me feel so sad.

The day the doctor was going to tell you the result of the biopsy, I was allowed into the hospital as an "exception" to the ban on visiting. To be honest as the Doctor had already told us the cancer covered a large area of your throat I was expecting them to tell us that radiotherapy was not an option. However, that day we had hope....... the doctor said they would start you on radiotherapy. It would be a couple of week's wait as the oncologist was on holiday, but we had hope. Even you were positive…… “let’s give it a go” you said with a shrug. We had the expectation that once they got your feeding tube sorted, you would come home and start your radiotherapy as an outpatient.

The feeding tube was a complete debacle. Twice, the procedure got cancelled. First because a stupid nurse started the feed through your nose on the morning of the planned procedure which meant that you had something in your stomach so they could not do the new feeding tube, and the second time you got bumped by an emergency case. Third time lucky huh?

You should have been discharged around 48 hours after the feeding tube was finally sorted but you were weak and finding it hard to manage. Then a few days later you rang me to say “I’ve got pneumonia”. Hopes of discharge were dashed again.

I spoke with Dr Chu - she was really good and laid everything out in very simple language without any frills. She told it how it is and I respected that. She told me it was not pneumonia but aspiration because you could not swallow properly due to the tumour. You had been naughty and were taking bigger "sips" of milk than you were allowed and the liquid was not going into your stomach but into your lungs, causing the asperation. Hopefully a course of antibiotics would reduce this. You were also put onto oxygen although the Doctor told me you would not keep the oxygen mask on. You were always quite stubborn!!!

That last week was quite worrying. A few times you rang me late in the evening and were incoherent or confused. I thought it was due to the lack of oxygen and rang the nurses a couple of times to have them check on you. I tried to tell them this was not normal, it was not like you and something had to be wrong, but the nurse told me your vitals were within the parameters they were expecting. The next day you were always bright as a button and the disorientation was a thing of the past.

When a private number calls you and tries again when you don't answer, you kinda think someone is trying to get hold of you. That Sunday evening, a private number called me twice in succession and when I answered the second call, the staff nurse on the other end told me you were not well. The anti biotics were not having the desired effect on the aspiration, and they would start a course of different Anti B's  to try and control the fluid in your lungs and prescribe more water tablets. He never said anything that would have made me drop everything and rush up to see you. The hospital visiting had just opened up again and I was planning to drive up the next evening anyhow and see you on Tuesday. I told the nurse this and they were Ok with that. Nothing to suggest time was of the essence.

After thinking about it for a bit, I decided I would drive up later that evening and see you Monday lunchtime instead. Then I changed my mind and thought it would be better to get a good night's sleep and then leave early Monday morning when I was more refreshed. The earliest visiting time was 11am so driving up in the morning would be fine.....

When I was woken up with a call at 2.30am from the hospital, my heart was in my mouth. Being woken up with a start, my recollection of the call is hazy. I heard "very poorly" and decided there and then I was going to head up.

Within 3 hours, Brian and I were walking at a fast pace through the empty hospital corridors. We were buzzed into the ward and the nurse led us into the bay. The curtain was drawn around your bed and I went in and sat beside you. You were so peaceful. I thought you were sleeping but then realised that I could not hear you breathe and you are such a noisy sleeper. Brian went out to speak to the nurse and he was told you has passed away. I just crumbled then, knowing you had been on your own, How could the Nurse have led me in there without telling me???? How insensitive could they be?

I sat with you for a while. I cried. I held your hand. I brushed your hair. I kissed your forehead and your cheek to say goodbye. You were still warm. You really did look like you were sleeping and I am comforted to know that you slipped away peacefully. I think you were tired, that you gave up, knowing the coming months would have been really hard and you would not have had the quality of life you had before. It would have been such a lifestyle change and you would not accept that.

I love you Dad. I miss you so much. 

If only……