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

Is it distasteful to talk publicly about Toby's' Illness ?

First off I can no longer make daily reports and have changed it to regular updates. I was putting too much pressure on myself by doing so. I was also not in the right 'space' to add anything. It is very emotionally draining travelling into west London which is so busy and crowded and something I am not used to, but I am adjusting.

I have been told that some people have found the blog and associated fund for Toby  distasteful whilst my son is so ill. This has left me in a spin and is another reason why I have been absent from the keyboard for a while.

I started this blog and appeal when I was in a highly emotional and distressed  state and under a lot of duress. I am sorry. maybe I should of waited till I calmed down somewhat but I have done what I have done. If you have an opinion on this then please comment on either this post or on FaceBook when I link to this post.

Now should I delete this blog I would be doing those that have followed it and given freely to the fund a disservice.

Distasteful ? Doesn't that say more about the person rather than the truth I am relaying. Is this something that is so British that we should not mention anything to anyone outside of the family. Is it wrong to appeal for help in the form of funds when crowdfunding is so accepted as part of the internet and social networking? Isn't this a very positive side to it where it's power can be used for good?

Much of this criticism has left me low and had me questioning my motives but then I just have an image of Toby and i wonder why he has to go through this. It should be me! But life deals us what it does and we have to accept it as painful as it is. Am I the victim here? Maybe so but I have not known how to handle much of this if I am honest.

Anyway now onto Toby

He has been moved to a room to isolate him from other patients as he has a diarrhea infection which is being monitored. He will not be going anywhere for a while as the antibiotic treatment will continue for some time. This is not good for his morale or his physio that  must move forward. He looked down and had a bit of a resigned attitude toward his lot. We , Kam and I had to remind him to be patient and resist being rude to the nurses although I can understand his frustration. It has been 9 weeks since he first entered that hospital.
I have to actually go now to visit with him again but one last thing. I have invited my son Ben to post on the blog. He seems to be a very good writer so he can help me out here.

Thanks for reading
love and peace to you all xx

Here is the link to the fund for Toby

Today's visit to be with Toby Cox and my latest report on his progress

Glad to say Toby appeared to be happier and have more energy than yesterday. I think it is because he slept better. I also think he is eating reasonably well which is good of course. He is low on potassium and he is being given a drink that contains it but he complains that it is vial .

He has also been given a shave and looks better now and it is more comfortable for him. He likes to come out with some funny quips at times so he retains his sense of humour to some extent although he looked quite down on our leaving him today. It is 9 weeks since he has been admitted to hospital and we can only imagine how lonely and at times boring that can be. He has had a lot of setbacks which have brought him back to Charing Cross repeatedly to fix the infections and the air pocket I told you about in a previous post.

Kam and Toby working on a word puzzle earlier today

Before writing this post I was thinking about what Toby could do when he is eventually back home. I don't know how mobile he will be although we have been told that help will be available . I want to see him have some quality in his life before it is time for him to leave and that may not be that long.

This is why I set up the fundraiser and If you are reading this please help if you can. It does't matter how small a donation you make it will make a difference. Go to it now  It has slowed a little let's kick start it again!

I think day trips or mini breaks would be lovely for him. He could do something really exciting like a tandem parachute jump  out of an aircraft if possible. He might like a ship cruise to the Canary Islands.But it would be really great to hold a party for him and have his family and friends there.

Thank you so much for reading this through I am so grateful to the generosity of you all and your kind messages of support . Love and Peace Greg Cox

This where you can leave a donation to the fund. Thank you

Toby Cox | News and Information from the Hospital

I didn't manage to get a post out yesterday as it was taken up with travel from Somerset to London and also I was seeing him today so I thought I would leave it till now.

The first thing to mention here is the latest operation was about having a pockit of air removed from somewhere inside his head to allow the anti biotics his is on to work better. I am sorry but I am probably not explaining it that well. The air pockit was blocking the antibiotics to get through.

After speaking to the surgeons assistant and a head nurse with 30 years of experience of brain tumours . We were aked if we had any questions. These are some of the notes we took afterwards.

We they happy with the operation?
They are happy to report that he is making progress.

Are the antibiotics working?
He is responding but they are closely monitoring daily.Although they are high strength they do have other alternative strengths available.if it becomes necessary to do so.

What about his low mood?
Antidepressants could be a good idea because as often in cancer patients they help to keep them emotionally and mentally stronger.

Is there help with his mental state?
There is a very good psychologist on site who does wonders in helping to build up mental strength.
When he is released from hospital and goes to Clayponds which is a special physio clinic he will also have it available.

Is Clayponds the right place as he has been returned to hospital twice already? Is it clinically sound ?
Yes he needs to be active again as it will go hand in hand with his recovery. It is a balancing act between the post op healing and the physio to start and Toby will not be moved until the time is ok. It is very sound because of the liaison with the hospital.

When will they start the chemo?
They said that another appointment will be made in 2 weeks to discuss the start date,the form and the supporting drugs that will be required.

Should he have more visitors?
Yes interaction with people is proven to help and it is important that he sees as many friends and family as possible.

What about the piece of bone that was removed?
At some time they will put it back or a titanium plate but not in the near future.

Thanks for reading this update. I am delighted to tell you that Toby has given his approval for this blog and for the funding page. He has suggested that he could say something on it himself so I am hoping this will happen soon.

Thank you all
Greg Cox

Another update and further info on Toby's condition

This is the latest news written on FaceBook by my eldest son Ben

Hi All - I wanted to give you all an update on Toby. You may be aware that he has been battling a severe infection inside his skull. At the weekend he was rushed in to Charring Cross with a temperature spike of 39.5. After various tests including a CT scan today it was discovered that he has a pocket of trapped air inside his skull which has most likely been hampering the progress of the super strength antibiotics he has been getting. He is about to undergo another emergency operation tonight which will be his third in just under 8 weeks. This will be tough on him as he is already very weak , but as he acknowledges he has no choice as to not have the procedure could result in the infection over whelming him. I've attached this to my fathers earlier post today because I have to be honest that when I first saw it I was a little shocked. My first reaction was that we shouldn't be presenting Toby to the world through the internet and through social media as it felt a little undignified and Toby being a very proud man may have objected to it. However on reflection and after my eldest daughter Jazzmin reminded us, we all know some one who has or had cancer in some degree (our particular family have suffered more than most), and that to heighten awareness of cancer and to ask for help should not be something we should be ashamed of. I ask you all to say a prayer for Toby even if like myself you would declare yourself a non believer as that would mean an awful lot to him. thank you for all your support and get well wishes

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