A week ago, Friday November 18th , I came home from school at lunchtime in order for Jeremy and I to go away. Kind friends gave us vouchers to use at a local Retreat Centre when Jeremy retired. As I walked into the kitchen with my school bags, Jeremy could be heard coming down the stairs. What then played out had all of us feeling quite concerned.
Jeremy could barely walk into the kitchen or stand up.
I managed to get packed up, fill the car and we set off just after 3pm. On arrival, it was difficult for Jeremy to walk any distance. We finally got ensconced in the lovely cosy lodge, once I had emptied the car. Jeremy managed to sit in a chair and watch some TV that evening but that was his limit. He appeared weak, slightly confused and very vulnerable.
To cut a long story short by Saturday I had group messaged the boys and told them we had reached a very serious stage. Dad was unable to get out of bed, get in the shower or walk by himself. I called Tom home and made plans with Joshua to return home asap on the following Friday. We were unable to leave the lodge at all on Saturday and Jeremy needed constant watching even when sleeping or washing. On Sunday Jeremy managed a short shower with supervision and we went for a walk but 20 minutes was all he could manage. We arrived back home that evening and all could see the rapid deterioration that had taken place.
It has been a tough week. We have been visited by a Hospice Nurse and an OT to try and make changes to the bed to aid getting in and out and work out a way to make showering possible. We have been at the hospital many times; had blood tests, an ECG, talked with the Registrar and the Consultant. Jeremy has lots of drugs to take which have now been dispensed into a pill organiser to ensure he has the right ones at the right time. His parents have made the tough decision to return to NZ and we have moved down to the spare room on the middle floor. We hope this will make living easier for Jeremy and conserve some energy. We also hope that having the spare room near a bathroom and the living room we can differentiate much more, daytime and nighttime. A double bed is the only sacrifice; 27 years of a king size makes this much smaller bed a tricky option.
We have cried, laughed, hugged, made tough decisions and generally tried to support each other so that we don’t lose perspective but do face things realistically. Jeremy has spent most of the time in bed, a great deal of it sleeping. He has needed a stick to aid his walking and have showers supervised. I have bought him a lovely new towelling dressing gown like the one I bought him two years ago to keep him comfortable and cope with sweats when they occur. If clothes are no longer the best option, a choice of comfortable dressing gown is a must.
Treatment was ceased on Thursday but as long as all tests come back positively, on Tuesday he will resume taking the tablets he was on in February until April but this time combined with another. The symptoms seen over this week are the result of swelling to the brain. Steroids have been increased in an attempt to combat this. If the swelling is a result of the radiotherapy then we should see some improvement very quickly. If disease caused then we might not see such an improvement. We have been told there is increased disease activity but not in any of the major organs, other than of course, the brain.
We remain as a family resting on the arms of the Lord. We sit in the palms of his hands but we walk a very realistic and daunting path. We have whispered to each other “I am not sure we will get to Christmas”. We face the celebrations at the end of the year cautiously. We enjoy visits from family and a few friends but with me being off school for the time being we have definitely entered a new phase.
We value your prayers and thoughts and many acts of kindness. For me to know that you are all out there helps me enormously.