Cancer Support Pack
Here is a great pack containing all kinds of help and assistance. Contact the South African Cancer Association for their Cancer Coping Kit.
Week 4
The 4th weeks treatment took off where week 3 left off, two long blasts to the sides of the face and one from above.
Radiation burns show clearly after four weeks of constant bombardment.
Tuesday 22nd
Another meeting with the consultant had him explaining that in week 5 Viv would probably lose his saliva altogether, and would have to use a special ‘actimizer’ (looking not unlike an asthma pump) to dispense artificial saliva into his mouth. He also explained that the previous two weeks treatments were extremely intensive and very destructive, and that the next three weeks would be different. The intensity of the radiation would be slowly reduced, and targeting different areas.
The 5th weeks treatment would specifically target the base of Viv’s tongue. He warned that Viv would experience a lot of pain in his mouth, gums and lower lip. Eating and drinking would become even more difficult, meals and drinks might have to be ingested using a straw. He also indicated Viv would start to lose his voice, something which had already started happening. He said not to be too concerned if he lost his voice altogether.
He also stressed the importance of eating and drinking, as eventually Viv would get to a stage where he wouldn’t want to eat at all, but he would have to stay strong.
Some pluses Viv took from the meeting, was that the specialist was impressed Viv still had use of his taste-buds at this stage in the treatment, but best of all was the fact that the tumour in Viv’s neck had shrunk to half the size it was at the beginning of the treatment! It was a very good sign, usually this kind of shrinkage would only occur in latter stages of the fifth week, something Viv took great encouragement from.
Thursday 24th
A power-cut in the hospital resulted in Viv’s appointment being shifted to the evening, no major thing. Once again we were all impressed at the hospital staff, who after running around like blue-arsed flies for most of the day, still found time to be pleasant and efficient. Apart from this the week was unfolding as normal.
Friday 25th
Today Viv was taken to another machine for the mask to be re-fitted, to target new areas, and to cope with the swelling around Viv\s mouth and his weight loss. All these changes attributes to the accuracy and precision to which the machines have to operate to administer the radiotherapy.
Eating difficulties mean a lunch of soup every day.
The week ended with Viv on a high, and apart from the ulcers, the great difficulties in eating, and that Viv was now getting very tired in the evenings, he was feeling ok.
It was Avril’s birthday today, and Viv arranged a surprise meal with a half-dozen friends at Avril’s favourite restaurant. Everyone had a fabulous time as they supped Viv’s favourite Portuguese wine Quinta Do Carmo, torture for Viv to have to sit and watch! The restaurant manager knew Viv, and of his condition, so had the chef prepare a special meal – a great soup, liquidized vegetables served in a hollowed out loaf of bread, with two raw eggs on top. Viv said it was delicious, and it was good to know that even at the end of the fourth week Viv could still taste his food.
The evening went on until late, and Viv was completely exhausted by the end of the night. Viv and Avril made a sharp exit to go home, so he could get some sleep. A word of warning from Viv: “Even if you’re feeling ok, you’re not. It’s better to rest.”
Saturday 26th
Still exhausted from the night before, Viv was sorry for not getting an earlier night. He took it easy all day, watched the Springboks get a mauling from the Kiwi’s (nothing new there!) embarrassing, but at least he can claim to be Welsh!
Glenn, Viv’s brother went home the next day, so the rest of the weekend was continued rest.
Viv had also noticed that the lump on the side of his neck had almost disappeared altogether! If that was not an incentive in itself to see through this worst stage of the treatment, then nothing was. “Roll on week 5!” Fifteen sessions left.
Week 3
Monday 14th
Viv pictured left with his concoction of medicine – ready for the day. This particular Monday, the start of the third week of treatment, was a continuation of his weekend. Getting up this morning was a very unpleasant experience. He began his usual morning preparation but it would prove very difficult, in this morning of the third week.
He woke with a mouthful of mucus as “thick as granddads chewing tobacco. To shift it almost had me spewing in the loo” he says. He could also hardly swallow because of his painful throat. “It felt like some South African voortrekker had driven his ox wagon through my throat.” Secondly the medical toothpaste burned like hell. Mixed with the mucus it just turned to cement. Next…breakfast. Avril had decided to give Viv grapes as a change – a disaster. After two grapes he was almost vomiting, the bitterness was burning his throat and the skins stuck in his mouth. An emergency mango was found which was much better. The yogurt also turned to cement and had to be washed down with water. But the worst, was the prescribed mouthwash. He says it was like Avril had given him rocket fuel! It was unbearable. The syrup for his mouth was the only soothing thing, which he took as usual on his drive to work.
Around midday the clinic called Viv and informed him of some ‘emergency services’ which had to be made to the machines. His therapy was postponed until 23:20 that night! Amazing how the staff are prepared to work until midnight to ensure he got the treatment, and as usual they were their usual happy selves. If only Viv’s staff were as dedicated as this(!!!) Viv returned home around midnight.
Tuesday 15th
Second day of the 3rd week was a Portuguese holiday, althought not for the medical team who would be there for Viv’s treatment that afternoon! A long lie in was the order of the day and proved essential, especially as the discomfort of the mucus build-up in his mouth was running Viv down, but the rest helped Viv re-collect his thoughts and his determination to beat this thing.
Waking up was again very unpleasant. His first bottle of water was almost impossible to drink and his mouth was so sore he couldn’t use the toothbrush, and had to use his finger to coat his teeth with the medical-paste, but keeping the toothpaste in his mouth afterwards burned like hell. Breakfast was ok, mango seemed to be a good fruit to eat at this stage, and went down relatively easily. But the mouthwash was still excruciating, and this particular morning it took Viv some time to get through the excruciating burning sensation.
Viv talked today how important it was to have people around him at this point during the therapy. Here he is pictured with long time colleague and friend, Lazlo. The support of his family, friends, and partner Avril was keeping him strong, and he was convinced that it would be impossible to cope alone. Without even having passed the half-way mark, he had reached some low points, it was going to be tough, but sheer determination, his strength, and the strength and support of those around him would be invaluable.
This particular day was a low point for Viv, but laying in bed contemplating, he thought about all the phone calls and emails he’d received of support and encouragement. It gave him a tremendous feeling of strength.
Avril went to buy a liquidizer today, so all of Viv’s food from here on in would be like baby-food. Not something he was thrilled about.
Wednesday 16th
Treatment was continuing as normal, no pain, and off home with his trusty bottle of water. The surprise of the day was smoked salmon for dinner that evening, which he says proved to be delicious. It was oily enough to eat comfortably and tasted great. In Viv’s audio journal he seems mentally strong today, and prepared for what’s ahead. He speaks realistically, and says apart from a very sore mouth and throat he “really can’t complain.”
But it was becoming more difficult and more uncomfortable to talk at length. It seemed quiet around the office without Viv’s booming voice and colourful expressions(!), but his spirits were good. He came in the next morning and declared “I’m feeling good this morning so no one f%&# with me!” It was a relief to see Viv back to his old self.
Sunday 19th
Weekend, 2 days break and end of the third week. This week all the therapy was the same, 3 long blasts, one from each side and one overhead. The specialist had prescribed a different mouthwash because all the ulcers forming in Viv’s mouth. Viv is convinced that this mouthwash is actually jet-fuel used to power NASA rockets, but this new one had improved the state of his mouth considerably. At least now he can comfortably open his mouth and chew. However his throat is still extremely sore, something which he was told by the doctors was perfectly normal. Eating and drinking were becoming increasingly difficult, it took twenty minutes to get though half a mashed avocado today, and each meal is a test of will power, food and water had to be ingested in very small amounts, it was exhausting.
“Knowing what to expect is half the battle, the thought of having to face this for another 6-8 weeks is depressing, but you have to think positively, and the constant support of those around me and the thought of a glass of wine at the end of all this is getting me through.”
Optimistic as usual, Viv thinks about how healthy his liver and kidneys are going to be after 3 months off the vino!
By the end of the third week of tratment Viv had lost around 4 kilos, (having been 10 kilo’s overweight for the last 10 years). “Another 6 and I’ll be in good shape!” The radiation has also made the area around his face, throat and mouth “very tanned.” His beard growth has slowed and almost stopped, and the hair growth in the ears and nose had ceased completely. So no shaving or plucking, great!!!
“And what about the nookie I hear you asking! Well let’s just say it still works, and if you can muster up the strength in between the treatment and medication to get a little action, then you must have a pretty good chance to see you through until the end!”
Another plus Viv mentions is that Avril now prepares all his meals and controls his diet. Viv has been the sole cook in the kitchen for the last twenty-five years of their marriage, although he loves to cook and finds it very therapeutical, this new experience of being waited on hand and foot was very enjoyable!
At the end of this week Viv seemed to be losing his voice even more, and his mouth was so swollen it was like he’d been secretly eating his home-grown chilli’s out back to relieve the chilli-withdrawal symptoms!
His brother Glenn visited from South Africa and his company did Viv a world of good. A weekend cussing S.A sport and a prawn BBQ on Sunday were great, but unfortunately no luck for Viv with the prawns, he could not chew or swallow even just a small piece. So it was baby-food and water, while his bro enjoyed King prawns and vino-verde. The bastard! Avril would have a deserved break next week with Glenn making the daily trips to the hospital with Viv for the treatment. The ulcers were beginning to get better, and Viv was now preparing for his fourth week.
Viv’s Daily Intake
- 2 x mugs of Ginseng tea – apparently helps immune system
- 3 x 200ml of water with oxygen cell food drops
- 3 x litres of water to help flush his system
- 3 x glasses of 100% fresh carrot juice prepared by Avril
- Vitamin B and C pills
- Herbal ‘triple immune’ tablets
- 1/2 tea-spoon of sea salt mixed with water
With the exception of the 3litres of water and carrot juice which are considered essential by the medical team, everything else is out of Viv and Avril’s choice. As Viv says, “let’s face it, they can’t do any harm. “He also feels that taking these things does help deal with the onset of the side effects. Who knows?
He was also taking zinc tablets which are meant to help with mouth ulcers, but according to the specialist zinc has a bad reaction with the radiation, so they were stopped.
With all these bloody requirements Viv complains that as his medication intake escalates he hopes he can find the time to go to the bog during the day!
Preparing Each Morning
Each morning Viv goes through the following routine:
- 200ml of water with 10 drops of oxygen cell food.
- Brush teeth with special toothpaste to protect teeth from radiation (has to be done 2 x a day) After brushing the paste has to stay in your mouth for 10 mins (Viv cleverly coincides this with “sitting on the bog, showering and shaving.”)
- After this the area damaged by the radiation has to be carefully cleaned – for Viv it’s the sides of his face, his neck (front and back), his chest, shoulders and ears.
- After breakfast more mouthwash has to be used (this is done 4 x a day or after eating)
- Afterwards, Avril’s prepared breakfast of chopped fruit, soft boiled eggs, yoghurt, or porridge (after 10 years of boarding school Viv hates breakfast, especially porridge!) But watching the sun rise each morning had become very enjoyable.
This process takes Viv about 1 hour 30 mins.
- Finally, on the journey to work Viv has to keep a special syrup in his mouth for as long as possible, gargling it and swallowing it once he’s completed the ten minute drive to the office.
Week 2
Tuesday 8th
This was the first consultation with the radiotherapy specialist since the start of the treatment. He sat Viv down and asked if he was feeling any discomfort. Viv explained that he was fine, except a slight dryness in his mouth, and confessed his guilt at the only thing really bothering him was not being able to crack open a bottle of wine in the evening; but there would plenty of time for that after the treatment.
A gel for Viv’s gums was prescribed to help stimulate his saliva glands. The specialist explained that 6-8 weeks after the therapy Viv’s taste-buds would return, but his saliva cells would be permanently damaged, only ever partially returning. Viv would have to carry an artificial spray for the rest of his life, and keep a bottle of water handy at all times. A small price to pay in return for his life.
During the treatment, Wednesday is the worst day of the week. The mid-week session is very long, about 30 minutes as the radiation zaps him from different angles. But still…the only real discomfort during these sessions is from the mask.
Thursday 10th
Viv woke with a painful ulcer in his lower lip and gum. It was the first real sign of the treatment beginning to take effect. Although Viv is suspicious it might have something to do with the way him and Avril are diluting the mouthwash which has been prescribed, having not used enough water the mixture was too strong, perhaps it was burning his mouth?
Saturday 12th August
By the weekend, Viv’s mouth had become swollen, very tender, and very sore, making swallowing difficult. It wasn’t too bad, but after the first two weeks, it was another sign of the treatment taking effect.
The 35-minute drive to the hospital still wasn’t a problem for Viv, and apart from the daily therapy sessions he was still working almost a full day. At this point all his meals had to be cold or luke-warm, and hot sauce was still a big no-no, the lack of chilli too was perhaps causing it’s own side effects! Lot’s of water was needed with each meal to help Viv swallow, and eating was becoming a test of will power – difficult, but his ever increasing desire for a glass of wine with food was driving him on. At least he still had his taste-buds at this point.
Anyone who wants to know any further info on the side effects should check out this section:
Evening of Sunday 13th.
The honeymoon of week 1 and 2 was over. Things had been easy up to this point, Viv couldn’t understand what all the fuss was about. No wine for 3 weeks because of this?! He was pissed off. But he’d been lulled into a sense of false security. It was the calm before the storm. This weekend had been a nightmare. His mouth had now become one big ulcer, and his throat was extremely sore. His physical condition had changed as sudden as the flick of a light switch.
First week of treatment
Viv entered into his first week of treatment. This was one of the early weeks that are supposed to cause no problems. It is only after the first two weeks that one will start to lose the ability to produce saliva and the taste buds will be buggered. Certainly not something to look forward to but hopefully the first few weeks can help build one’s resilience and faith which is so important in these situations.
The very first session began on the 31st of July at 2:30pm. Viv describes the room he was taken to as a “military underground bunker”. It was heavily protected with lead shields, the entry was about 6-inch thick lead door and nobody is allowed to enter when the machines are operating. Inside is a huge computerized machine, which will apply the treatments to Viv. The mask, which had been shaped to his face, was waiting by the machine. Viv had to lie down on the treatment table, to which his head was firmly strapped, using the mask as a clamp. Feeling extremely nervous, he was told to relax, “everything will be fine”.
After ten minutes and a few whirring sounds, staff returned to inform Viv it was all over. He hadn’t felt a thing, no discomfort or pain whatsoever. In fact, the only thing he felt was embarrassment from the scenario. A feeling that there was a lot of fuss and concern for something, which was no distress at all.
This was the situation for the first week. Everyday Viv arrived for treatment, everyday he left without feeling a thing. Just waiting for the harder weeks to arrive.
Saturday 5th
By the end of the week, Viv was still feeling fine. Apart from experiencing occasional dryness of the mouth and that his saliva had become a bit thick there was no significant change. He was eating normally and could taste his food. He was following the specialist’s heart breaking instructions for surviving the treatment, which include not drinking alcohol and staying out of the sun.
On Sunday 6th Viv decided to torture himself slightly by having a barbecue with some members of staff.
As the guys ate their piri-piri prawns, Viv chows on his non-spicy prawns. As the guys sip another ice-cold beer Viv drinks his water. And as everyone splashes around in the pool catching the rays, Viv is sat in the pool under an umbrella and wearing a hat – protecting the radiation burns, which were slowly developing on his neck.
But generally, one would never know. Sunday was a great day, lots of fun. The weekend had been a well-appreciated break and left Viv feeling very relaxed going into the second week of treatment. Life was normal. Although according to all information, from now that was about to change as the side effects from treatment would begin to kick in.
Viv setting off for work
Viv is taking well to his treatment and is still going in to work every day, albeit with a cute little lunch box that Avril managed to buy. At work no one is allowed to snigger at this important item of equipment 
It’s great to see Viv doing so well in his fourth week of treatment.
Emails of support
Thanks for your last email I thought the web site was a really good idea. It was an inspired idea. You are a remarkable bloke Vivo; to be thinking of how you can use your experience to help other people is typical of you, and why it is a real honour to be your friend.
Emails of support
Hi Viv, I received your emails and I just read your whole web site. I’d like to thank you for including me in your communications. I think it’s very admirable that you take the time and energy during this difficult ordeal to try and help another fellow cancer patient. I believe that esteemable acts create positive karma, and that positive attitudes attract positive results. You seem to be doing both. I’m going to forward your web site to my brother who went through throat cancer. He had a squamous tumor that was treated with radiation therapy. I remember that one of the big side effects was that he lost his taste and appetite, which both returned after a few months. He is cancer free today, and back to his normal weight. he had some skin discoloration on his neck which also disappeared. I will talk to him and get all the details and pass them on to you if you’d like. Give my regards Avril and the crew, and keep up your positive attitude. Again, if I can be of any help or assistance to you in any way, don’t hesitate to ask. You have a friend in America.