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