The last few weeks I have had a number of people ask me if I am going to keep this site going, now the treatment is completed. Well the answer is a definite yes! My treatment may be finished but that is not the end of things, and if this site is to help people who are going through similar experiences to me then it is essential that I carry things on for a while yet.
December for me has been a roller-coaster ride, with some extreme highs, and also some lows. Although the highs completely outweigh the lows.
On Monday 4th December I had to go for comprehensive scans to my throat and neck area. My appointment for the results of the final analysis was scheduled for Monday 11th. It was then I would know where I stood. This wait would be a painful wait.
However, on the Thursday before the 11th, Dr. Travino phoned me to say he had been given the results by the radiologist. He could hardly contain himself when he tried to tell me that they had checked and rechecked the scans – even comparing them to the old scans – and that he could find no trace of the tumours! According to these scans, the cancer had been eliminated in these areas.
The feeling of elation is very difficult to describe.
There is nothing I could ever compare it to. I felt like my chest was about to burst. We were all having lunch in the office at the time, and after putting the phone down and sitting at the table I just burst into tears. The cancer has played havoc with my emotions, I was never very good at hiding my feelings anyway, but the last few months I was getting very emotional, blubbering very easily!
Anyway, I still had to see the main man, Dr. Caba, the ear nose and throat specialist on the following Monday. I would also have a cat-scan on this day.
With the scans and the report (which we couldn’t read as it was in Portuguese) in hand off we went to see Dr. Caba, who greeted us with a smile. I clearly remember thinking ‘I hope he smiles like that again in a few minutes time.’
The first thing he did was put a camera down my nostrils, him and a college took turns in looking with lots of discussion, all in Portuguese. There was a lot of nodding of heads, a few smiles, I just wish I could have had a camera there filming at the time, it would have been interesting to see my lost reactions as I tried to read their body language. My face must have been a picture of confusion.
Next they studied the scans and they seemed to spend an eternity studying the bloody things. To the naked eye these scans look meaningless, they tired to show us and help us understand the various areas that had been affected and cleared, but all Avril and I could do was nod enthusiastically.
The end result was, that I was declared clear of the cancer.
It was gone. Obviously we could not contain our joy, and I hugged Dr. Caba like there was no tomorrow, he seemed a bit uncomfortable with that. After wiping away the tears Caba explained that there was no need to have the cat-scan anymore, which he said was good, because I had already been subjected to enough radiation, it could have been dangerous. He also explained through an interpreter that the next three years was vital, that he see me once every three months, plus I was to have a new scan on my throat and neck every six months. He was so emphatic that he made my next appointment there and then for February 2007. Dr. Caba also said that after the first three years, he would still need to see me every six months for another two years. This would be a total of 5 years that they would have to keep a close eye on me.
He explained that while there was no sign of the cancer what-so-ever, I had to be aware of the real danger that it can come back. It was extremely important that I treated my body with respect. Alcohol had to be taken within reason, it was also imperative that I eat regular meals and maintain a decent diet. Our GP, Dr. Travino is also a firm believer in natural remedies, and the correct intake of vitamins. He also supports my decision to undergo the Bowens Therapy.
Without exception, they have all stated that I must stay away from people smoking, and smoking environments. Both Travino and Caba are convinced that I will prevent any further reoccurrence of the Big C if I adhere to their advice.
How are things personally for me now?
Well it is amazing how quickly you forget how bad things were during the treatment. The mouth ulcers, the severe burns on my neck, the swollen tongue, my throat, my inability to eat or swallow anything, the list goes on.
Right now I have very tender gums which still predetermines what I can and can not eat. They were becoming so sore I had to visit the dentist this week, and he could only tell me that my gums had become very thin due to the radiotherapy, and that I had to be careful and patient. In fact, everyone tells me…”you have to be patient.”
My skin is still very tender, and extremely sensitive. I scratch a lot and still can not use normal deodorants. The scratching at times does seriously piss me off.
I seem to have stopped losing weight and I’m around 72Kg, which means I lost a total of 15 kilos.
I can still produce saliva, but I’m drinking around 3 litres of water each day, which does help. However at night it is a nightmare, my tongue dries up so much my tongue sticks to the roof of my mouth. Sometimes it gets so bad I can’t breath. However a swig of water does relieve it, but I’m up every hour and a half with a mouth like a dried out old army boot. It is painful. I have tried artificial salvias but none of them seem to help. As I’m continuously told, everyone is different and there are different ways to overcome these problems. For me the only thing, which seems to help is water.
My biggest bleat
My biggest bleat is that I still have a very sore throat and my voice is very croaky, but it is nowhere near as sore as it was two months ago, when I could not even swallow. So in reality things are fine, and I’m getting around more comfortably. I have more energy, and I’ve even booked some golf lessons for next January.
I can eat much more than just soups, but some things are still out – pastry, sandwiches or thick meats like steaks, even chicken and chips is impossible. Stews and rice dishes are top of the menu. It is great to be able to have the occasional beer, although wine still tastes horrible. Vanilla ice cream after meals is also a treat and I eat tubs of the stuff!
The last thing I really have a problem doing comfortably is brushing my teeth twice a day. The toothpaste burns so much it brings tears to my eyes, and because there is so little saliva to thin the paste out in my mouth it makes me bring up phlegm every time, which doesn’t help my throat. Every now and then I sit on the end of the bed feeling sorry for myself, and I tell Avril I don’t know how much longer I can take it. But just the other day she reminded me what it was like a couple of months ago, and just how short my memory was.
I have to admit I hate feeling sick all the time. Six months is a long time. But then one does have to consider the alternative, a wooden box is not that inviting.
If we have managed to prove one thing, it’s that there is definitely “life after cancer!”
The 6th weekend was great for Viv. He slept a lot, getting some decent rest, and the Springboks won again! Who would have thought it! Feeling very refreshed, Viv started the 7th week on a high. Although his throat was extremely sore, and he says it’s like swallowing razor blades every time he takes a drink, so at this stage painkillers are essential. The minute he feels the pain coming on he has to take another dose.
Monday’s treatment was the same as the previous week. His left shoulder was clamped down and he was given a 40 second blast of radiation into the left back of his neck. This area is now very painful and he can no longer wear shirts with a collar. Very bad burn blisters are appearing on this left side of his neck. Even showering and soaping the skin is very difficult. Luckily the new cream which has been prescribed to apply, cools these badly burned areas.
In the evenings he also sits with an icepack on the area to try and relieve the irritation.
At around 4am Viv woke to this excruciating pain in his throat. He couldn’t breath, and he said it felt like he had broken glass stuck in his throat. He was violently sick, vomiting both blood and phlegm. “To hell with cancer, I thought this was going to kill me” he says. A triple dose of painkillers were taken to calm the pain.
Unsure of why this had happened so late on in the treatment, Avril soon realized it was because that night Viv had accidentally left the nebulisor in the office, so was not able to lubricate his throat before bed that evening.
“So this is a warning, always make sure the nebulisor is on hand at all times. I’m sure I could have avoided this terrible experience.”
Tuesday’s treatment was exactly the same, except when the mask came off a young, female radiologist was at Viv’s side. She explained in perfect English that this session was the last time Viv’s shoulder would be clamped down and that area of his neck targeted. She told him the last 5 treatments would be very short and easy – 2 blasts of radiation at 5 seconds each. This was very good news indeed.
On Wednesday, Thursday and Fridays treatments the radiation was greatly reduced, one single blast to each side of Viv’s face. On Friday it was down to 15 seconds on each side. With the exception of a very sore throat and very bad blistering on the left back side of his neck he was looking forward to a relaxing, easy weekend before the last two sessions.
Monday 18th and Tuesday 19th would see the end of the radiotherapy treatment. But unfortunately a few incidents on Saturday and Sunday hindered the ‘relaxing, easy’ weekend.
The radiation blistering on the side of Viv’s neck began to burst, becoming painful, open wounds. The local pharmacy – who are now fully aware of Viv’s condition – suggested a special lint-dressing used for serious burns called “Rayonfur.” The dressings would protect the area from infection and help heal the open wounds. It was applied on Saturday night before Viv went to bed. He said it seemed to help keep the burns moist and at first felt quite soothing. But Viv would not even describe the pain come Sunday morning when Avril took the dressing off. Needless to say he refused to have another one applied.
Viv went around to the Pharmacy to show them the burns on his neck and explain the problem with the dressings and the pain he was experiencing. They gave him an antiseptic cleanser and a cream, which he was to apply tonight and Monday morning. The area still had to be protected with ‘Sativa’ the cream which was originally prescribed. These burns had literally become a pain in the neck.
The second thing that went wrong on the weekend was that Viv developed a cough, and by the evening it had become so bad he was coughing up blood with the phlegm he was bringing up.
Anything he tries to eat or drink now burns him beyond explanation, so much so he now takes triple the prescribed dose of painkillers and is under constant sedation. He says there is absolutely nothing which can alleviate the pain from his throat, which is now probably as raw as a French mans fillet steak.
The reason for these severe burns and excruciating sore throat is the extended amounts of intense radiation which has been administered to his neck, to target the base of his tongue for the last two weeks. This intensive blast has lasted around 40 seconds in each session, and whilst it doesn’t sound a lot, compared to the usual blasts which are between 5 – 10 seconds it really is an acute amount. If you look at the mess Viv’s neck is in you can not even begin to imagine what the inside of his throat looks like.
The good news for the weekend is that Avril’s buddy arrived from South Africa. So Viv has spend most of the weekend sleeping, dosed up on painkillers and under constant sedation. Avril has had a well earned break, showing her friend Lynne some of the local sites and fantastic restaurants, and of course shopping, shopping and more shopping. Viv is under instructions that he must drive himself to the hospital for the penultimate radiotherapy session, as they have a serious day of shopping planned for Monday! But Avril deserves the break and Viv has no objections in one of the guys from the office going with him.
So….TWO SESSIONS LEFT!
Monday 4th September
The start of week 6 has seen the effects of the radiation kicking in completely. Viv says he is feeling “very shitty” and “generally bloody lousy.” His saliva has dried up completely, and on the doctors advice he is using the nebuliser twice a day, which lubricates Viv’s throat and mouth, helping him breath easier and clear the phlegm and mucus which is now building up to the extent that it is very difficult for him to eat or swallow.
The treatment has now changed, coming in from different angles to specifically target the base of Viv’s tongue and throat. The clamp which was being used has also been changed to a rod which bears down on his arm, allowing the radiation to penetrate areas difficult to target. The treatment times have also been slightly reduced.
Even at this late stage he still does not feel a thing during the treatments, and is still driving himself to and from the clinic.
Tuesday 5th September
Viv had to go to Faro hospital at 7:30am to meet with the hospital administrators to arrange the finance for all the various treatments.
He had to see the original specialist who diagnosed the cancer to fill in various forms relating to the financing of the treatment. While Viv was in the consulting rooms – on the off chance – the specialist asked to see how the treatment was effecting the tumors. He wanted to take a look into Viv’s throat. He put his scope into Viv’s mouth and had a look around.
Well…he broke out into a huge smile and announced that it was incredible. The tumor, which was originally the size of a ping-pong ball, was now the size of his little finger nail! It had been reduced significantly. The specialist told Viv that he sees no reason whatsoever that by the time the treatment is finished why it wouldn’t be gone altogether. He was convinced that within the next six months Viv would be completely cured, and would not even need the surgery.
It was news that gave Viv an unbelievable boost in confidence and strength.
He went out into the corridor of the hospital with Avril, and the two of them stood there, holding each other and crying in joy.
Nine more sessions to go!
Wednesday 6th September
After Tuesday’s news Viv was feeling stronger than ever, and combined with the changes and decreased doses in therapy things were getting better mid week through week 6. The swelling in his lower lip had reduced considerably – along with the pain. He also said his gums weren’t quite so sore anymore. The radiation burns to his chest, shoulders and neck have also reduced and lost their vicious red colour. Although the nasty skin rash is still there and driving him nuts.
Now that the radiation is targeting new areas, the left side of Viv’ neck and the area just below his chin are being affected. It’s actually so bad in that area he says you could peel of the skin and use it for a designer leather handbag.
This morning Viv’s tongue had swollen very badly and he complained that his throat was excruciatingly painful. His voice had also completely gone. For the first time during the therapy, Viv had to take painkillers.
They call it “pain management control,” although he says the only thing he knows about it is when to take the next one, as the pain gets so bad even breathing through his mouth is unbearable, so using the nebulizer is imperative.
Sleeping at night is also very difficult. His throat is so swollen he snores worse than his sharpei dog, Fred. Often waking himself up during the night! He now has to take sleeping pills to try and get a full nights rest.
Viv still has an appetite, and can still tell what the food is meant to taste like. He can still smell the food, which is probably what makes him feel hungry. 87kg at the start of the treatment, he is now 78kg, and maintaining that weight, (2-300g give or take). Still having his appetite at this point helps.
The combination of the therapy and the pain he is experiencing makes him very tired and saps the energy out of him. But he’s still going into work everyday, taking a short nap each afternoon to sensibly rest himself.
Monday the 11th will be the start of the final week of treatment. 7 sessions to go. Tuesday the 19th will be the last day of the radiotherapy treatment, and Viv says that for him the time has flown by. It only seems like last week since this whole thing began.