Apologies for not having given any updates people, but Colin has been very poorly this last month………
His decline seemed to kick in after the last game of the season, he was so pleased to have “made it”! Bootsy and the lads had taken him to Amsterdam which he enjoyed immensely but the schedule was gruelling. When he arrived home he took to his bed only to gather enough strength to attend the last game at Chelsea. He has been in bed pretty much all the time since, only to get out for the loo and the occasional cigarette. This was the case until last Thursday when my cabin fever had reached a crescendo and I insisted on a trip to Cambridge for a wander around the retail park. It was so nice, he was extremely relaxed as I wheeled him around in his chair and popped into Marks and Spencer for a browse. Just inside the entrance was a young man with a couple of trays of nibbles for the customers to try. He invited Colin and I to try some, at which point Colin grabbed a handful (very unlike him!) and proceeded to stuff them in his mouth. The man asked if we liked them, to which Colin replied , “Yeah, they’re OK”
“Oh, good” said the man, “they’re £5.99 for two trays.” Colin then emptied the contents of his mouth into his hands and threw the half chewed savouries right back at him shouting “I thought you said they were f****** free!!” The look of shock on his face was priceless! There was a quick embarrassed explanation from me and we made a sharp exit leaving only the smell of burning rubber from the wheels on the chair! So, there was another memory for me to cherish.
From that event Colin has been worsening on a daily basis, becoming increasingly confused and with a greater number of hallucinations. He has feelings of things moving and has felt liquid dripping on his head and has felt and seen his feet on fire.
On Wednesday 5th June at 2am he woke me up shouting that I had to keep calm but that our house was collapsing. I turned the light on and saw the look on his face, shock horror and fear. I had only seen that look on his face once before and that was the night he had to identify our son Daniel’s body on the night he was killed in a car crash. It really did frighten the knickers off me! I just couldn’t manage him or the situation so I called our eldest son, Jamie to come over. He then escorted Colin around the house, reassuring him of the building’s stability over and over again. My other son, Tommy, then took over after he had finished his night shift. The psychosis lasted for a three day period and the only time he slept was when he was sedated with Lorazipam which our GP had prescribed. The GP, District nurse and MacMillan nurse got in touch with the hospice and Colin was admitted. The first few nights he spent there were much the same, he had to have an infra-red sensor put by his bed to alert the nursing staff when he was moving. He was determined to come home and kept packing and re-packing his case. The nurses had to keep a vigil outside his room to ensure he came to no harm since his balance was so bad. The doctors have now prescribed Haloperidol which seems to be doing the trick. He is now much calmer and, although he still sees his bed moving, floors cracking, feels water running on his head and his feet on fire, he can now accept that this is all due to the tumour.
When I was asked to do this blog, I had every intention of keeping things very light and funny as indeed a lot of situations have been so. I then wanted to give you some insight into the much darker moments, so people will realise the havoc and devastating effects that Glioblastoma Multiform can have on people’s lives.
We are both so very grateful for the support and help we have had, it is truly humbling but my dearest wish is that a cure will be found for this cruel, cruel disease.
Many, many thanks, Helen.