Charles story starts while he was at University in Newcastle, summer 2009. He had started going
to the doctor in Newcastle as he had a skin complaint on his back. They said it was Psoriasis and
that he should start using sun beds as a treatment. He had a mole and, at that time, it was just
the ordinary mole that we all have and think is safe.
In the next year this mole started to grow. He often went to the doctor in London and every time
they said that it was fine. They said that they would put him on the waiting list (NHS). The mole started to bleed and again and again they said it was fine. Sometimes they gave him antibiotics and eventually he ended up wearing a dressing on it as wearing T-shirts aggravated it as they rubbed. Charles was working at the time, lifting heavy equipment and never saying that anything was wrong. If things were very heavy there was a slight pain in the back but that was expected considering the things he lifted.
Finally the appointment came through and I flew into London to go with him to have it removed. It was at St George’s Hospital, Tooting; a very depressing place. We waited and waited, finally we were seen. They looked at the mole and said come back on Friday. We said that we thought it was coming off today – no time – the reply came and then Charles explained that he was flying to France the next day to recover for two weeks. So we waited and they took a photo of it and sliced it off. It was not really done with any expertise as I was in the room and, usual thing, it would be sent off for a biopsy and that if he heard nothing that’s fine. What amazed me at the time was they didn’t even dig the root out.
Charles spent the next two weeks in France enjoying the rest and sunshine.
Then he got a text saying could he go back to St Georges Hospital which he did, where Charles was told that he had Skin Cancer. A few days later he had liquid taken from a lymph node to be examined. We were told then that the cancer he had was Melanoma. Then a MRI scan. This meeting was a very strange meeting, they told us that he had Melanoma stage 4. It was me that had to ask where and how many tumours he had. It was in his liver, 50 spots of which over half were measured at 2.5 cm – and on his spine, no 2 and 7 vertebrae, at the point of collapsing. Well then they said – lets get in touch with the Macmillan Nurses. I said that would not be necessary and had they done a blood test? The answer was no and they then thought it might be beneficial so a blood test was organised and we went and queued with 70 people in front of us. At any point during Charles’ visits to the doctors, if he had had a blood test, the test would have shown that something was wrong with his liver so yet another mistake, usually because of lack of funds.
The Doctor at St Georges’, Tooting was going to remove all his lymph nodes under his arm and he would then be in hospital until the body could redistribute the fluid that the lymph nodes deal with. Also there was a waiting list and the earliest that this could happen was in the new year, 2012
At that point I phoned The Royal Marsden and got a referral from the G.P. and we had a visit just before Christmas where the root of his mole was taken out and it was sent to Germany to see if he was B-RAF POSITIVE as, if he was, they would like to put him forward for a trial drug called Vemurafenib.
We got the news early January that he was eligible for this new drug so, on returning to England, he went and had another blood test at the Marsden and his bloods in every category had improved, despite no treatment thus far. But as usual a slight hitch; before giving him the drug they had to do another CT Scan of him – problem was he had to wait as there were 32 people on the list before him. During this time he started to decline again the STRESS OF WAITING (it was so sad as when he returned to London he even skipped down the stairs in the flat, a remarkable difference to 3 weeks before when he needed help to move). The scan was done and another blood test to find that by now most of his blood levels that were important had doubled. MORE STRESS – to be told that in one column (of the blood test results) the level was too high for him to start the trial drug and they could not give it to him. Charles was told to go and drink plenty of water and come back in the afternoon for another test. Well Charles by now was in such a state, so STRESSED, that I cannot find the words to describe it. Anyway the water worked and he was one point under the guide lines for the drug to be given.
We picked up a months supply and left to go back to our flat by which time Charles walked lop sided, had dreadful back ache, felt sick, temperature all out of stress and he didn’t want to eat anything. Finally at 11 pm I didn’t know whether to call an ambulance or give him these pills. He had to take them 12 hours apart so 11 pm he had his first dose; he just took them closed his eyes and I left his room feeling lost. What has happened? Within one month of being told he had Stage 4 Metastatic Melanoma he had deteriorated so much. One month, it was incredible! There are lots of stories of people who looked perfectly fine people and they are told they have cancer and some are dead within weeks.
Within a week of taking these pills he started to stand up straight again, have a bit of colour to his face and start eating again. During the month that I have described he went from being 110 kilos to 84. My daughter was engaged and was getting married in June; I said if you wanted to have Charles at your wedding looking ok you better do it sooner than later. So one month later she was married and Charles read the lesson for the service (the same lesson was also read at his Memorial Service) and Charles made all the toasts. So it was a great day and we have some lovely memories.
Back at the hospital when I found out that Charles had many tumours in his liver, I asked the Nurse/advisor what should he do regarding diet or drink so as not to stress his liver – I was told to carry on as normal. What about drinking alcohol? (something known to effect the liver) but I was told yes he can have a few beers. It was then that I realised that there is a big hole in the medicine world (something as you read on that you will understand). Also, at a later date, when his disease had progressed further and Charles was answering some questions for a new treatment, the nurse asked – How many units of alcohol do you drink a week? – Charles answered with none, to which the nurse laughed and said why not? Simple answer…because of the cancer in the liver!
The Vemurafenib that Charles was on got a lot of publicity and Charles was on the news, (see videos). The Vemurafenib did what it was supposed to do; give somebody 6 months more of life or longer in a few cases. For Charles the first two months were wonderful we saw results with little side effect. By the time we got to June and July he was stable but no more reductions of tumours. Side effects started to appear, his hair changed and he could no longer go out in the sun. He had to wear sunblock even on cloudy English days otherwise his skin would get sunburnt. In October half-term he took me aside, while shopping for a present for his little sister, and told me that the cancer was back and that it was growing.
With that he came off Vemurafenib (with a terrible reaction, fever and violently sick) and started another drug called Ipilimumab (Ippi). This was an infusion every 3 weeks with the last infusion being the 30th January 2013. There were 4 infusions to be had and he was told that things might get worse before getting better. This treatment began in the last week of November. Shortly before beginning this treatment, Charles began to get headaches and the right hand side of his tongue swelled up, affecting his speech and ability to chew food. After another scan it was revealed that the cancer had now spread to his brain with 3 small tumours. At first there was due to be no change to his treatment, as Ippi was used to treat this too. Before Christmas the doctors advised Charles to have radiotherapy on his neck and lower brain. This was to take place in the New Year. Despite the tongue swelling and headaches going away during the Christmas holidays and he was symptom free in the New Year, the doctors said that Charles should have radiotherapy ‘just in case’ and so he did.
Charles never complained about anything, still had the most fantastic social life and friends and spent so much time helping others and making others laugh. A very rare thing by someone so ill. He never moaned about himself.
In January 2013 I knew things were getting worse. In the Marsden, while Charles chatting to nurses, his consultant came over; he saw I was there. Charles shook his hand and did the normal small talk and the consultant didn’t speak to me or look me in the eye, a visit I will never forget. It was a few weeks later that we were told that Ippi was not working and that we could try 2 of the earliest chemotherapy treatments combined together, but with some potentially serious side effects.
Monday 4th March we had a family Skype call to discuss what options Charles had. The hospital had offered chemotherapy and radiotherapy. Nothing was really decided that night but it was all taken out of our hands as that night Charles woke up being sick and then collapsed and lost the use of the right side of his body. It was as though he had had a stroke. Charles could not use his arm or leg. So he was taken into the Marsden and had another scan to find out that he now had ten tumours in his brain, new growth in his lung and liver as well as his spine. I was taken to one side and told, very directly, that he had only 3 weeks to live. There are no words to describe the lack of oxygen that I felt and that my knees wanted to give way. They wanted to give him a full head of radiotherapy which I found out later on the form was called Palliative Radiotherapy. So it was not meant as any kind of treatment but simply to stave off the symptoms to make the last few weeks as comfortable as possible. They told me that in one place, the brain would have been done twice, most likely resulting in brain necrosis (although they did not expect him to live long enough to experience this) and they pushed and pushed until he gave in. He was 24 years old and he had to call the shots and, although his right side had gone, his brain, to the outside world still functioned for decisions.
We were told also that they could not get all the tumours and they would regrow (at best the radiotherapy would last 4 weeks). After a week and 5 doses of radiotherapy we got to take him out of the hospital and take him home with the help of a wheel chair and various supports and slings to stop his shoulder flopping and ankle turning. While in hospital we brought in all our own organic food and family members were with him 24 hours per day. But I had to do more. I phoned the Gerson therapy clinic as they had a place in a weeks time, I read all the books and research that had been done. I thought it could work but I was too late as they won’t take any one with cancer in the brain as there is not room for swelling (part of the healing process as the tumours disintegrate). They said we could do a modified version at home. I could give him 3 juices a day and nothing but organic food which I did.
On returning to the flat we had another awful experience with a Macmillan Nurse who turned up and it felt as if they were there to bury him. A questionnaire on religion, race etc; the nurse told us she didn’t know what to bring so she brought a box of rubber gloves as we would need these and two files, blue and yellow, as these told you want would happen towards the end. I very firmly told her that she must go and she was probably wanted somewhere else but not here. We would do everything ourselves. The nurse departed and then the palliative care team turned up. Again this time I didn’t let them in (Charles had no interest in seeing them) told them that they should look at their bed side manner as it was not good. They left me their card and said get in touch when he starts being sick.
After 3 tough weeks in London, Charles got to France on the 28th March; arriving by car with all his stuff. He started living a normal life, insisted on going upstairs without help every night and for many weeks he was pain free. He did get distressed when his hair started falling out so it was shaved off. I found it very distressing to see that and with all the radiotherapy his face changed. It got longer and his eyes got wider but he still had his smile. We had a brain scan in mid-May which showed us that 70% of his brain tumours had gone leaving only 3 small tumours. Charles was planning to return to England in June to see all his friends.
His death took us all by surprise and only on the 19th June at 6.30pm did it even cross my mind. I really thought he was going to make it. He was in my arms, talking to all his brothers and sisters and counting to the very end. Suddenly it went quiet and he departed, one minute he was here and the next he was gone. He did not go alone as the days before and that night he mentioned how he had seen a beautiful woman and I presume that it was she that took him.
He lived 3 months, 2 weeks and 2 days from the day they told me that he would only live 3 weeks.
So this is why the SLBG’s have formed this foundation in honour of Charles. We feel that he did not have to die, especially in the way he did. He was a sports man, fit and healthy. Looking back, Charles had always been given the wrong guide lines from the medical profession. I do understand about cuts, being over worked, long lists etc, but there is a little bit of nobody owning the situation and also the untrained eye.
Hence THE FOUNDATION wants to start a Dermatology Clinic and hopes to employ a trained ‘eye’ from Australia where Melanoma is high and they are used to seeing it.
Please see the Foundation page for further details.