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

                                        --------------------------------------------

Please support us by going to  https://www.youcaring.com/helpingtoby2recover

Just heard they are going to operate tonight

This is going to be a short post as it won't take long to tell you about the latest news. Kam phoned me to tell me that the surgeons at Charing Cross hospital are operating on Toby again. She was of course very distraught  but I will be with her tomorrow to help.
Sadly it seems that there are so many complications to his recovery. I will light a candle tonight and hope he will be alright.It's difficult to say anymore right now because I can't

Toby has a temperature and he has been moved back to Charing Cross Hospital

29th November 2016

Yet again Toby has been moved back to Charing Cross Hospital because he has leaking fluid from his head and it is infected,

I feel so heartbroken for him because he is in a cycle of 1 step forward and then 1 back again. We are all getting hopeful and then those feelings are dashed again. I fear that his body is weakened by the operations and the drugs he is on. I will be going to London to stay with Kam and I will be much closer to the hospital (by about 130 miles). I worry about leaving my wife Gwyneth back in Wells on her own because she is dealing with a lot of stuff as well as trying to make a living. I always help her with her websites, video and anything which is needed. This is why I have created the fund raiser because we really need the loving support from others as well as a fund to help Toby recover and have a better future. You can access the fundraiser from here  Please help - however small your contribution it will be so appreciated.

One of the very sad things is before the first operation I can remember his very positive outlook and how he would be fine. Now his faith is gone and his mood low. Unable to do the things we all take for granted is very frustrating for him. He has fallen several times whilst trying to visit the toilet on his own and ended up with bruising himself.

The background to my son's illness

My name is Gregory Cox and I have started this blog to tell the story of my son's illness brought on by a brain tumour that first appeared 5 years ago and cruelly has returned again.

I am Greg Cox - Toby's dad

This was taken in early September before just weeks before the seizure

Five years ago he had a seizure and in a brain tumour was detected. It was a type 4 tumour which is the most serious. He was admitted to Charing Cross Hospital. I remember the fear I felt when his bed fellows in the ward were dying all around him. I saw what looked like healthy people one day gone the next. But then a miracle happened and he recovered enough to go home. For the last few years he has had a restricted but reasonably good life

Another Seizure

Then in September of this year 2016 I received a call from my eldest son Ben who told me he had had a seizure whilst he was on holiday in South Devon could I help out because I was the closest to him being just over an hours drive away. 
I dropped everything and a couple of hours later my wife Gwyneth and I were on our way to Exeter Hospital. We had to retrieve Tobys car from a car park on the coast then tidy and collect all the belongings from the holiday apartment that Toby, Kam (his wife) and Jamie (my grandson) were staying which was about 15 miles away. We, Jamie and I returned to the hospital in the morning. The doctors did some tests and a scan of his head and then released him after a long wait.

The Hell Ride To London
Then we had a 3 hour drive back to London which was awful. Toby was being constantly sick all the way back. It was one of the worst journeys I have ever had to do, but a harder time was yet to come. When we got to London we contacted the ambulance service to take Kam and I to Charing Cross hospital. They obliged . We thought they would see to us quickly because of it, but we were in a queue and had to be with him all night until finally he was admitted. He complained about a loss of feeling on his left side and a terrible headache. Kam and I went home.  

Then we got the news his tumour had returned.They needed to operate. This was not what we wanted to hear. Toby himself told me he would be ok because his faith would see him through but we all knew we were going to be tested. Everything we went through 5 years earlier was happening again, coming back to haunt us once more. But unfortunately this time his recovery has had setbacks and it has broken my heart to see my Toby fight so hard again to beat this horrible condition.
Since the operation in September he has had a very slow recovery with the first setback being an infection taking place. They operated to clean and remove it.
What I forgot to mention is he had been moved to another facility to help him with the physio necessary to get him to use his left leg and arm again. 

Loss of Faith
He has been in a very low mood since the start of his treatment and has 'lost his faith'. 
Cruelly after a return to the physio facility and a more positive outlook, yet again the infection has returned. We all feel devastated that he has to go through this again. It is heartbreaking that this has happened and as I write this he is returning today 28th Nov 2016 to Charing Cross.

My Appeal To You

I appeal to you to help out our family. We are vulnerable, I am 66 years old and have high blood pressure and my anxiety does not help.The stress is so great.
Toby could not work after his first operation five years ago and so times have been tough for Kam and my grand-kids since then. Now we have Christmas upon us and we are not looking forward to it.
I have to believe Toby will survive this and we can make his life better by having the funds to help.
Thank you for taking the time to read this sad story. I live with hope in my heart and I will update you all on the state of thing in the future.
My sincere thoughts
Love
Greg Cox