It’s been a long time coming but this is the latest update on Toby

 There has been a pause with the updates to this blog for good reason

 I have held off talking about Toby and his healing journey and his progress through this blog. I have been positive in the past and Toby himself still is because he believes the doctor’s prognosis is wrong. Which is that he only has six months to live.  He has access to this blog himself. So there has been a deliberate pause whilst this information has been processed.

This has been difficult for the family to hear and everyone has to go through their own way of processing, dealing with the information and the inner turmoil that it brings.  Some will arrive at a point of acceptance before others. But the medical professionals have spoken clearly to us all about their disappointment in his recovery and this is why he is not going to get any chemotherapy or physio because in their view he is just too weak to cope with it. This is why Toby is now in a care home where he has access to 24x7 help and care and is made to feel comfortable with his own room that has TV and radio, a toilet and washroom.

How he is feeling

Toby has his good days and others where he is feeling low and frustrated with the boredom, not surprising for a 45 year old man who remembers how active he once was.  The mind says yes but his body is weak. This is one of the hardest things to see in him, but he still has his sense of humour and has me smiling at times.

He does get confused though. I was recently with him and he forgot that his brother Ben was not there that day. He texted me thinking it was Ben questioning it. Sometimes his text messages are clear and legible and sometimes not, but his memory is often faulty. Having said that he had two friends visiting that knew him from early teenager days and he remembered lots of details from their past experiences. 

He also has a pretty good appetite although I saw some of the meals he had in Charing Cross hospital and they varied from good to appalling. He has been eating healthier food that has been brought in by the family.

 Care Home

At this point I would like to thank all of his family and friends that are visiting him since he is now in the care home.

Please remember that he can only really handle so many visitors in one day but he is happy to see you if you are connected, either a friend or family member. In fact it is very good for him and we are encouraging you. Remember that Toby himself is hopeful that he will defy the doctor’s prognosis so please be upbeat when you see him.

Torn between what Toby believes and what the doctors have told us

This blog was started when as its title says ‘hopeful recovery’ was just that . The medical professionals have told us that it is not realistic to think beyond 6 months and we can only hope that Toby is right but we have to prepare for his leaving us and being strong in facing it. As his father it is something one never wants to have to deal with. I have asked the question ‘why him? I am the elder it should be me. But life isn’t like that is it. I am grateful for the love he has received and given on his journey through life. I have never had to worry about his behaviour like some parents have had it. He had a strong moral compass and a faith in a creator that loves all of us.  The faith that kept him alive after his recovery from his first brain operation five years ago.  Like his mother Lesley Joy did before him  he has fought all the way and still is fighting for life.

A word about the fund.

The fund was set up to give Toby and immediate family a helping hand with some quality time like day visits, mini breaks and other pursuits to keep him happy. I don’t know if this will happen and I would not like to deceive anyone into thinking that it will but if it is possible then will make it happen for sure. I have kept the fund going because this is the wish of the family. It is my assurance to you that the donations made and those to be made will be used in the name of Toby. Perhaps he should have his say on how it should be used. I will keep all benefactors informed of the allocation of funds in due course.

          Please go 

 << here to donate >>.

Love and Peace to you all

Greg Cox