The History – Wayne found a lump on his neck in April 2014, he visited his GP 3 times and was given a course of antibiotics until eventually they did a biopsy and he was diagnosed with cancer of the right tonsil in May 2014. He had his tonsil taken out but unfortunately scans displayed that the cancer had moved to his lymph node and he was to undertake 6 weeks of aggressive radiotherapy and chemotherapy. Through various miscommunications within the hospital the treatment didn’t start until September 2014. Wayne had been fitted with a PEG feeding tube in case he was unable to eat during and after treatment.
At the beginning of November 2014 the treatment ended and an immense healing process was to begin. Wayne’s mouth was so sore he was unable to eat and he had dressings over his radiotherapy wounds and painful swollen face, but the Macmillan Nurse monitored the healing and said everything was going to plan. He was given a healing high fluoride toothpaste to help his mouth, again high fluoride is something quite new to me that can cause cancer – why do they prescribe it? Wayne had pain in his right shoulder from before the treatment and was assured orthopaedics would see him but this never materialised. Throughout this Wayne continued to work as a children’s clown and ventriloquist!
In April, Wayne’s pain was getting worse and his eating seemed to be going backwards, he was still managing the gym and work but it was taking its toll. We continued to see a range of locum consultants and GP’s who said there was nothing wrong, it was just healing, the number of professionals who said this and the occasions when it was said is a bit of a blur. Despite having come off all his medication in March he had to start taking prescribed pain relief medication against his wishes. In May, Wayne was performing a ventriloquist act when he noticed his breathing was strange and he was really struggling. We saw a GP and again were given pain relief and reassured everything was fine. In June Wayne was forced to give up his ventriloquism and take that out the routine. His breathing and swallowing had become difficult and still the professionals said there was nothing wrong and that it was just recovery.
In July 2015 the right side of Wayne’s face went numb. We called 111 and Wayne was taken to A&E in an ambulance in case it was a stroke. In A&E we waited for hours to see an ENT doctor and our Macmillan Nurse. Finally the doctor said they had taken blood and to go home, they would call if there was a problem and if no problem we wouldn’t hear from them. They said it was Bell’s Palsy and there was no treatment, it would just go away in 6 weeks. Wayne’s face has remained paralysed ever since. Wayne was completely unable to speak and relied on myself and Jake to continue working. In September the consultant explained that his right vocal chord was paralysed but that this was all part of recovery – there was no cancer. He was referred to maxi facial because of the pain in the right side of his face and the pressure in his right ear he now complained of. He was advised not to clench his teeth. He was losing lots of weight and I spent my time feeding him through the tube with full fat milk, meal replacements and vegetable smoothies. I wish I realised then the crap that was in those meal replacements and the damaging effect of dairy on inflammation.
In October having seen numerous GPs we were referred to the consultant again. One GP, when I said ‘Please help, the consultants are doing nothing,’ said,
‘What do you mean they are doing nothing?’
I replied, ‘They say there is no cancer and nothing is wrong.’
The GP said ‘Then they are doing something – they have said there is nothing wrong.’ He made us feel quite ashamed that we had the audacity to question what the consultants were saying. By now Wayne could not eat, was constantly in pain and throwing up through severe dizziness and on some days he could not get out of bed. The consultant we saw this time, we had not seen before (they tended to be different every time). This new consultant was shocked and amazed that nothing had been done previously to investigate Wayne’s symptoms, he referred him for an emergency MRI scan to take place within a week. This did not happen. I chased the MRI scan and was informed that the machine had broken. I explained there were other hospitals, this was an emergency and we could go anywhere. Eventually a scan was booked for the 2nd of November; 8 months after the symptoms had started.
Whilst Wayne had his scan I sought out the Macmillan nurse. I begged her to help us as Wayne was so poorly. She agreed to look at him. Previously on the phone when trying to book the scan the Macmillan nurse had assured me it was just recovery. Whilst I was with her she explained that they would discuss Wayne in their meeting on the 4th November, 2 days after the scan, and that we would have results on 5th November. I asked her if she could give me a ring after the meeting on the 4th. She explained the meetings were long and she wouldn’t be able to ring on the 4th as she would want to get to the pub!
As soon as she got to the MRI department she was taken away by a man in a suit. When she came back, she had a bed for Wayne to be admitted to hospital. He had further scans and was monitored. On Wednesday 4th, 6 professionals walked to his bedside and closed the curtain. They explained that the cancer had come back and was in his right salivary gland. They said they had missed it.
An appointment with the oncologist on the 6th November explained further that it was in the right salivary gland, back of the skull and around the brain stem so it could cause problems anywhere in the body if it affected the brain stem. They said they could make the symptoms better with radiotherapy but that there was a huge risk of overlapping from the radiotherapy before and this would be fatal. Wayne was given a matter of months to live.
They discharged him from hospital with a list of medication, including 2 tablets that are deadly if taken together – it’s a good job I am aware of this because he continues to be given the deadly combination despite my plea that he can’t take them together and not to prescribe them. He was also prescribed 7 meal replacements a day full of chemicals and sugar.
He was due a consultant appointment on the 9th December but again as has happened many times before it has been cancelled and moved.
Our GP caught up with me on one of my appointments and said she knew there was something wrong but she didn’t want to say anything!!!! Is it just me or is this outrageous?
Now – We have realised now that following medical advice is not always best for us. Wayne knows his body better than anyone and I know his care better than anyone. The hospital say there is nothing that can be done – but in fact what they mean is there is nothing they can do. NHS staff seem to think sympathy faces and viewing holistic approaches as cute are enough to make up for their mistakes – they are not. I genuinely believe that many people die because they are told they are going to – I find it horrendous that in this country you are left to find the hope and the answer alone.
Wayne is currently meditating every day and doing a lot of emotional work with EFT, forgiveness (including forgiving himself) and affirmations. He has weekly Reiki and daily Chinese herbs. His diet is strictly no sugar (apart from in fruit) no wheat and no dairy. Feeding through a tube makes it difficult and he is still very thin and I can only hope he is getting all the nutrition he needs. He also has an array of supplements that are getting bigger everyday with new information. We are attempting exercise but Wayne’s fatigue holds him back. Wayne is still working but has been unable to have the busy December he would usually have. He has, however, made more progress in the last month than he had over the last 9 months since the symptoms began.
Wayne’s recovery program has been designed by me but I would like to have a more personalised program made for him by a more experienced person but consultations alone are in the of region of £275. His supplements are expensive and with us not being able to work very much and despite very very generous help from my parents we are running out of money. I would like to look into Intravenous vitamin C injections and possible other alternative treatments which may become very expensive so I am looking into fund raising and asking for help.
Wayne aka Mr Mudge is very important, it is not his time and this is not how the story ends. I only met Wayne 2 months before the original diagnosis – I was 35 before I finally found my soulmate and I can’t lose him now, less than 2 years into our relationship. He is my hero, my best friend and the love of my life. But I am not the only person who believes he really is an angel that we need to keep on earth.
A Letter from Santa:
Hi Mr Mudge,
I want to share with you a truly fantastic story. I have seen you entertain the pre-school children at Muddyboots Christmas party for more years than I care to remember. I play Santa at the party.
Well today I was playing Santa at the Walgrave Primary school bazaar.
I had a little girl come in to see me.
She had been told by her mummy that you was feeling poorly, which is why you wasn’t talking but using your whistle.
She asked me if I knew Mr Mudge? I said of course I did, Santa knows everybody. The little girl turned to her Mummy and said “see Mummy I told you Santa would know Mr Mudge”
The little girl then handed me two pieces of paper and told me she had written Mr Mudge a letter. She asked if I could give these to you.
I said of course I will. I then
asked her what she would like for Christmas, she just said
”I want Mr Mudge to get better”
Today I saw the true beauty of love shining through that little girl. I have never felt so humble and so inspired by such kindness.
Good luck to you Mr Mudge, I know one little girl out there who thinks you’re the best.
Other messages:
Wayne hope you get better very soon so you can continue to bring as much happiness to other children as you have to my two children over the years. Sending positive thoughts. Xxxx
Hey Mr Mudge, it’s a true honour to have this wonder that you give and have given, at least you know how much joy you pass through, you are a lovely human xx
Wayne has been sent cards from nurseries and pre-schools he has worked for; he is loved by so many children and does so much for charity. He is also a keen singer, guitarist and song writer; he hates not being able to sing. Wayne and Vicki are focussing on getting this talented man back to full health.
We wish them both all the best.