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Archive for January, 2022

Lights on and door closing

Christmas looming and husbands birthday. Strangely I wasn’t feeling terribly festive approaching Christmas 2020. My close relationship with my family had been erased due to lock-downs and bubbles and my husband had been diagnosed with non-hodgkins lymphoma and had just started chemo.

Sometimes I think I may have manic tendencies. Having said that we wouldn’t be having a Christmas tree or decorations I decided we would amalgamate husband’s birthday and the Yuletide spirit, only I wouldn’t tell husband of my plan. Basically on his birthday the family and a couple of friends would be invited round, to stand in the front garden, and we would switch the decorative lights on and celebrate his birthday.

I ordered lights, stationary and flashing, coloured and white. Strings and shapes, 3-reindeer pulling a sledge. Not content with that I purchased a waterproof, bluetooth speaker and copied all our Christmas tunes to i-pod. I couldn’t help husband knowing I was putting up a miniature Blackpool illuminations but I kept the music, friends and family a secret. I did warn the neighbours though. Everything was on timers, at 7pm husband stepped through the front door, all the family, plus friends were standing waiting, if this was his last birthday it would be one for us to remember. The lights went on, the music played, we toasted Christmas, Birthday and Chemo.

Goodbye Dad

No photo description available.
My Dad

Two days after celebrating my husbands life, my 99 year old Father died. He had suffered a stroke 2 weeks before, gone to hospital, developed Covid-19, and been started on the end of life pathway. There is so much I could say, so much turmoil, distress, sorrow, regret.

On his final journey only one person could be with him, and that couldn’t, wouldn’t be me. Due to Covid-19 and a CEV husband who had started chemo I was advised I shouldn’t be there. I have a much younger sister. We had always supported each other, she had to face this alone. I could be at the other end of a phone, but not be with her. My relationship with my Father was dysfunctional. There were questions I had which he had never answered, now I would never know the answers. I could never say goodbye. The door would be firmly closed but the story not have a satisfactory ending. The worst thing though. Not being with my sister. His final hours were marked with my sister and I talking on the phone, her describing to me what he looked like, what his breathing was like. Then, he died. I had no idea what to think, what to do. I stood looking out of the window at a clear night sky. Suddenly a star moved across the sky. The logical part of my brain knew it was co-incidence, the emotional part believes it was a sign. It was my Dad leaving this world but allowing me to witness his final flourish. Goodbye Dad.

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R-Benda

Should he enter the trial, should he just go on the traditional route? He read, we read. Hmm. The big thing, for both of us, was that traditionally, once in remission (more on that later) patients go on maintenance therapy. The research wants to decide if maintenance and or PET scans is the best way forward and to assist with this you go into a blind study. Basically this means that you may be given the maintenance, rituximab, or sterile water, you don’t know which, and then they see how many remain in remission and how many have a recurrance. The PETReA study was at a hospital 40 miles away. Husband decided that 1) He wanted to know he was having maintenance 2) The journey for his treatment would be easy. It was now November and he was worried about adverse weather affecting travel.

He opted out of the study.

Gosh. Haematology, oncology don’t hang about. He was given 2 days the following week when he would be starting chemo. The chemotherapy he would be on would be rituximab and bendamustine. Laiden down with information we walked out of the consultant’s office.

Would that life in 2020 were that simple. Coronavirus, COVID-19 was there. Lurking, ready to strike at anyone but especially if you were a grown-up, with pre-existing medical conditions and even more so if you are immuno-compromised. Husband looked to be the viruses favoured target.

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