A line in the sand

Since I wrote nearly two weeks ago, several things have happened. The first is that yesterday December 8^th we met with Jeremy’s oncologist and he agreed with us that our best course of action is to cease treatment for his cancer. We have drawn “a line in the sand” and for very good reason.

I wrote on the 26^th November that if all tests came back as satisfactory then he would start on the tablets debrafinib. The tests did come back normal, so on Tuesday November 29^th he started taking 2 tablets in the evening. On Wednesday 30^th he continued with this treatment. It was meant to be my last day at home before returning to school. That evening Jeremy had a very confusing spell trying to work out how “Watchdog” on the TV related to the chicken meal that he was eating as he watched. It took some calming down and convincing to persuade him there was no relationship between the two.

On Thursday morning I got up early to go to school and Jeremy became extremely agitated and seemed to be confused and disorientated. I felt awful leaving him and going to school but handed duties over to Lydia and then she to Joshua. I rang at lunchtime and the very kind person sitting with him said he had had a good day. I had a fabulous day back at school but got home early as a good friend was dropping in on her way home from work. She and I sorted out a prescription that he needed and she left. As the evening progressed he began to vomit, despite being on anti-sickness pills for a while now.

Next morning not only was he very agitated but he also kept vomiting. I left Lydia trying to feed him and give him his medication but she rang me at school in tears and in tears I had to contact the hospice team from school. They were amazing and sent a nurse out to Jeremy within the hour. When I got home at 11am she was sorting an injection to stop the vomiting. It was a very difficult and tense day and despite nearly being admitted to the Hospice as we just could not get on top of his symptoms, he eventually stopped throwing up, he then was able to take medication to ease the pain and slept peacefully. We kept him off the cancer fighting drugs in case these were the culprits.

4am on Saturday morning I turned over in bed. Boy do I wish I had not! Jeremy was bolt upright in bed and was being decidedly weird. He informed me he had been downstairs and made a cup of tea. I was horrified. He is not safe on the stairs and as for boiling the kettle; well! I calmed him down then heard a small voice “Mum can you get me a sick bowl and a glass of water?” Lydia was feeling sick. A few minutes later and heavy footsteps were heard and a deep male voice. On inquiry Joshua answered that he too had been sick. So it seems one had a reaction to his meds, another had a sick bug she had picked up from placement and the third had food poisoning. How random and what are the chances?

Saturday was an odd day with everyone lying around. Jeremy needed lots of care and was very forgetful. He needed loads of reassuring and as a result a Marie Curie nurse was offered to sit with him as he slept through the night. We all had an amazing sleep. Tom visited for 4 hours on Sunday and remarked how slow Jeremy was. We have kept the house as clam and peaceful as we can. We have had marvellous support from the Hospice Team. We have been visited by the District Nurse and the GP and by Monday Jeremy was in a much better space. I felt we actually connected. Tuesday was a fabulous day and he was able to chat on the phone to two separate people. He and I definitely connected as adults and we felt more like a couple. Jeremy was able to thank me for the way I was caring for him and it was a very positive day. Wednesday and yesterday have not been quite so good as he has been very sleepy but so much better than last week. It is our 27^th wedding Anniversary today and we plan to go away for a couple of nights now that he is more stable.

And so it was we went to the hospital to see the oncologist. We had decided, having seen Jeremy on Tuesday in so much of a better space, that that is how we want him to be. Not the confused and agitated figure we had seen a few days before. I come full circle to the start of this post. He is on a lot of medication to manage the symptoms, has an even worse memory than he had before, needs lots of sleep but we feel peaceful. We have made the right decision and so we now wait. We look forward to being together for Christmas. We know New Year will be tough but as we enter what must be the last few weeks (as many as make months?) of having this wonderful man Jeremy in our lives, we are so grateful for the role he has played and we feel truly privileged to call him “husband” and “father”. We love you Jeremy James Clark and will always, always hold you close in our hearts. You have inspired many, walked the road confidently and we know that it won’t be long before you stand before your/our Heavenly Father and hear the words “good and faithful servant”. We rejoice that because Jesus has defeated death on the cross and made a way back to the Father you will be reunited with Ben and together you will be in His presence, singing praises to the Lord God, the Creator of the universe. How Amazing!