Dear friends, Toby passed away on Saturday 13th May 2017 at 17.43pm. Rest in Peace son.
 You will forever have a special place in my heart. Goodbye XXX

The renewal of the vows and more

A Service of Blessing for Toby and Kam Cox

On Saturday 21st January Toby and Kam renewed their wedding vows. The ceremony had  been hastily arranged but I was able to make it.
A day room was set aside for the purpose. It was just big enough for the number of guests that attended which was 20 or near about. And what a lovely ceremony it was. There was love, laughter and song. Some wine and food but also a specially made cake.

Toby and Kam .

cutting of the cake

The pastor who agreed to lead the vow renewal proceedings was from the food bank that Toby was part of. Toby's faith is something he found comforting after he had his first tumour operation 5 years ago.His friends that I met there from both the church and outside of it were very nice. Another blessing was that it was a lovely sunny day and the room was lit up with light.
Chris the pastor did a great job of keeping the ceremony just right,not too long but with bible reading,prayers the vows , The Lords Prayer, hymn and closing blessing. I am glad for them and happy I was there.
One of the things that Toby used to volunteer for was to help out at a food bank for needy people. He thought of others before himself and I am really proud about that. He loved playing drums at the church each week , it was a source of great happiness for him.
Kam has been  there for Toby to help him go through this and one can only imagine the stress of it, but what a lovely gesture to co create this special day.

How is Toby ?

Toby sitting up in a wheelchair

Toby has been seeing many visitors and I thank all those that have been to see him and those that will see him before he slips away from us. I mentioned it before, but he gets very confused and has very little short term memory.  We think he has dreams about situations and believes that they have happened. He told us that he had been out with a visitor friend of his and went to a farm that had rare animal breeds.
This is all part of his deterioration which we were told would happen. Maybe not quite like that though. Ben and I allow him to believe some of the things he thinks are going on but we have had some difficult conversations with him.
He is fighting to get back to a state where he can walk again and to be at home and of course that is good but he cannot understand why there is so little help from the staff and carers to achieve that. On the other hand we know that his time is limited and realistically he will never do what he wants. Its hard to admire his fight but also be honest with him regarding his prospects. This is what pulls me apart inside .

Ben

I mentioned my son Ben earlier and I want to tell you all that he has been an absolute rock through all of this. He has remained level headed and kept his banter with Toby lighthearted and amusing whenever he visits him. He has been very supportive of me and is a real loving component to this journey we are on He has me very proud and feel much closer to him now. He is in his power and that is a great thing to see.

My Hope Did Not Want To Believe His Tumour Would Return

Five years ago Toby had an operation for his tumour. He recovered after I thought I would lose him. I thought of it as a miracle that he had survived it and I refused to believe it would ever return. He was having scans every 6 months and all was good. 

Looking back I was hopeful but in denial of the facts. He had a very aggressive tumour and  the doctors back then said he could live for maybe another 5 years. I guess I hoped it would be more but in the meantime I forgot all of that. 

Now I wish that we would have done more and been more aware of the importance of nutrition,alternative cancer killing foods and holistic medicines. Some sufferers claim they have staved off cancer with some of those ,one of which is CBD oil from the hemp plant.

I am not criticizing conventional medical practices here but I think there is a good chance that we could have staved  off the return, if not completely eliminated it.

Please donate now ---->>visit the fund <<<----

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