Friday, December 17, 2010

Clear signs so far

John reported that his latest MRI scans show no signs of cancer so this is good news. His sense of taste is still out of whack however – sometimes too intense and sometimes not enough intensity. Unfortunately, even when it is too intense – after the first few bites it turns into bland mouth, so the joy of eating is still equivocal. He has still had trouble putting on more weight.

John has also found it disappointing that the dentist has found 4 cavities in spite of his frequent brushing, flossing, and mouthwash. Since before the therapy John had almost no cavities, this is a major change in his dental health. Apparently saliva is an important cavity-fighting mechanism and since his saliva glands are not yet back to normal he has lost their benefit.

His energy is slowly returning, but not as fast as he would like, apparently. He is back into his old routine, however: visiting Dorothy on a regular basis, making the paper runs to Gibson’s, and visiting Bill’s place on Bowen Island. It’s like the old days – but we know that all has changed.

Tuesday, November 2, 2010

Strange flavours

It's been a while since I added a blog entry - but this has been good news. John reports that he is gradually regaining his strength: he is once again making his paper runs to Gibson's, visiting Dorothy twice a week, and keeping up with his gardening.

He has also been coping with the strange effects of regaining taste. The first signs of taste returning was a high sensitivity to only certain flavours - like green pepper and garlic. Eating Italian food tasted like a blast of garlic, John reported - and all it needed was a small mount of green pepper to overwhelm all the other flavours. In his latest phone call he now reports that there is too much cinnamon in his cinnamon bun. Food textures are also a challenge. At times chewing is just too uncomfortable.

His saliva is not yet back to normal, his lower 'beard' is still peach fuzz, and his skin has a post-sunburn smoothness - leaving him with a 'distinguished' look according to the Purolater clerk. I expect that his slimmer look also helps.

John will be visiting the doctor on Monday and will be having a PET scan at the end of the month. He has had a number of blood tests along the way, with 'no news is good news' results. The PET scan is a more thorough test. I'll keep you posted.

Friday, September 17, 2010


John reports that he is doing well, but he remains tired most of the time. His voice is back (but not his beard and taste) but he is getting around more. Aaron sent me some photos that will give you an idea of the new John.

The first is one of John in the mesh mask that they used to hold his head still for the radiation treatment.

This one is a look at the results of his weight loss routine. All that butter and cream doesn’t seem to have had a major effect!

Here’s a closeup of his radiation-imposed beard style.

Monday, September 6, 2010

On the Mend

It was great to HEAR John on the phone this evening. His voice is returning and he reports that he can speak without pain. He sounded like a long-time smoker, however, and complained of not having much energy, but is no longer on medication and found that the nausea disappeared about a week ago. Even his bowel movements are getting more regular.

Now he’s waiting for his taste to return. He can still smell the lovely flavours of Patty’s special soups, he says, but the eating is flavourless. “I’m full of envy and jealousy now!” he reports, “All this lovely food – even the fresh blueberry crumble didn’t taste like anything!”

The crumble was served up at his visit to Gibson’s on Sunday. He had enough energy for that trip – and was even able to take the 2-hr wait for the ferry in his stride. He was not up to a Cindy Lauper concert on Friday, however, so headed off to visit his Mum instead.

He has appointments for blood work on September 26th and October 6th – and the dentist has already given him the assurance that his teeth look good.

So now it’s only recuperation on the menu. He still has 250 ml of “swish and swallow” to keep the thrush at bay, but beyond that it is up to his body to mend. He figures that just about the time he starts to get his beard back, he will begin tasting food again. Until that time, it’s eating by the clock rather than the flavour.

Monday, August 30, 2010

The Silent Man

John sent an e-mail explaining that he is now the Silent Man. His nausea is gone, but he is dealing with a very sore throat. He can only whisper - and that even hurts him so we won't be phoning him for a while. He lives on tylenol and won-ton soup - along with laxatives to counteract the constipation from the drugs. He wrote that he is living in the "happy crappy" phase.

Patty is taking good care of him now that Wilma and Gary have gone. She keeps the stock of soup plentiful and provides the sign language translation where necessary.

Friday, August 27, 2010

End Game

Bobby Fischer always argued that the game of chess was determined by the “end game” – all the early and middle moves are designed to get in a strategic position for those final ones. Now that the chemo is completed and John had his last radiation treatment we are all hoping that his end game will be a piece of cake! From here, it is a process of ensuring the best conditions for recuperation, and waiting for the tests to come in about 6 weeks or so.

Wilma reported that John’s throat is rather raw – we could hear it on the phone. He sounded like he had a bad case of laryngitis. He still feels nauseous and is very tired but now has enough saliva to spit. Who would imagine that this is a good sign? The dentist was one, since it means that John’s saliva will once again start to work its wonder against tooth decay. In addition, the dentist reported that his teeth are in good shape – another positive note!

John has lost a lot of weight over the last several weeks so will need to work at putting it back on through a rather sore throat. Wilma says he eats like an anorexic person – insisting that he is eating, but just picking at his food. I expect that will change as his throat clears up.

Patty came home this morning. Wilma and Gary will be heading off on Sunday (with a stop in to see friends in Hope on the way). We are all hoping for a short period of mending!

Tuesday, August 24, 2010

"Blisters the size of coffee coasters"

Aaron reported that the blisters from John’s radiation treatments are now the size of coffee coasters. This means that they are taking up much of the attention as he recovers from his last chemo.

John reported that they are not particularly painful, however – just something that needs a lot of attention to avoid infection. He has been given a ‘kit’ of material from the hospital along with some elaborate instructions. It includes boiling water, giving the area a saltwater bath, soaking it in gauze, and covering it with a special bandage. Apparently a garter belt does the best job of holding it all in place. He says the blisters are not getting worse, so that’s a good sign.

The blistering is only on one side – below his shoulder, near his collarbone. The other side hasn’t blistered – it’s just “scabby and lumpy”. He doesn’t even have blisters in his throat so is thankful about that – and very upbeat about the ordeal being almost over.

As usual, yesterday and today are worse than the weekend (from the chemo). He has been able to eat his 2 eggs and porridge, however, along with some vegetable soup that Patty made for him before she left. He also discovered the joy of freshly made won ton soup from a local restaurant so he will be taking advantage of that over the next few days.

Wilma and Gary are with him and when I called yesterday Aaron had joined them for the evening. They were all engrossed watching Tremé episodes.

Saturday, August 21, 2010

Cleaned, Creamed, and Covered

John is resting at home after his last round of chemo – doped up on steroids, painkillers, and anti-nausea medication. Wilma and Gary are staying with him and last night when we called, Aaron had joined the three of them as well.

Now the big challenge is hydration – lots of liquid to keep his system flushed. Wilma reported that it is not an easy task since soup has no taste and each spoonful is a burden. John did chow down 2 eggs and plenty of butter, however.

The doctor was somewhat concerned with the blistering on his clavicle so gave him some cream and bandages to keep it clean and covered. Given John’s reduced capacity to fight infection, the objective is to minimize the chance of it by being extra careful that the bugs don’t get in.

Only 4 more radiation treatments to go!

Thursday, August 19, 2010

Last Chemo

Today is John’s last chemotherapy session. If the last 2 are any indication he will be in bad shape for a few days before bouncing back. Since Patty is off at a wedding in the east, Wilma and Gary will be taking over as the support team until her return.

John is also counting down on the radiation treatments – only 6 more left. He was surprised by the appearance of blisters near his collar bone but figures that he had missed taking care of this spot with the aloe cream treatment since he didn’t expect that the radiation would have hit this area. He is now struggling to keep ahead of the burns with the cream but finds it an irritating addition to his repertoire.

Aaron has passed on a few more photos for us.

Here is one of Shaver's anti-shaving treatment.

"Look Ma, no beard!"

Here are a few from John's trip to Bowen Island. He was enjoying the sunshine (remaining well-protected) while wandering in the garden.

Monday, August 16, 2010

Bringing in the Barley

The worst part of the post-chemo agony seems to be over. So much so that John was up to a “regular workday” on Saturday. He took a trip out to Bowen Island to help with the farm chores. There was much heavy lifting since Aaron and the others were busy moving sandbags for a retaining wall. I expect John was not up to that much effort, however, so went off to check the barley that had grown up in the cast-off mulch from previous cleanups.

Refusing to give up, the stalks had taken advantage of the rich soil and pushed themselves up into patches of nicely ripened barley. John said that he cut off much of the “harvest” and piled the sheaves into stooks much as peasant farmers have done for centuries. Some of the grains were already dry enough to fall into his hands and he discovered how a little hand-rubbing could break off the husk. The wind was not strong enough to blow off the chaff in an efficient manner but he was certainly pleased with the opportunity to re-enact this time honoured tradition. “There is too much bran in the grain to make barley soup” he added.

Wilma and Gary are back in Vancouver again. They will be around for John’s final chemotherapy treatment on Thursday and will fill in for Patty when she heads off to attend a family wedding in the east. I expect he will miss her soups, ointments, experiments, comfort, and support.

Tuesday, August 10, 2010

Swish and Swallow

"Swish and swallow." Those were the instructions John received with the medicine to keep the thrush at bay. "Just do it 4 times a day."

The instructions should have been "Swish, gag, and hurl." according to John - they would have been more in line with his experience! It seems that his aloe vera elixir does not mix well with the thrush medicine so he has to time them to avoid any cross-contamination.

Today, however, he reported that things are much better - he can actually swish and swallow without the gagging. Maybe it was the Chinese herbs that Patty has introduced to his diet, or the gravol and ginger she found, or just the care and attention, but something seems to be working.

He said he even has enough energy to make a trip to Gibsons after his morning radiation treatment tomorrow. It turned out that his mailbox over there needs some attention so he will make the trip with his cooler stuffed with medicine, soup, and calorie drinks by his side.

"If only it didn't all taste like sand!" he added. Even french toast with lots of butter and maple syrup has lost its flavour. He reported that there is little joy in mixing up a fresh nectarine milkshake with gobs of ice cream since the taste is only a memory.

Shaving has also become a thing of the past as the radiation takes its toll. He said that the "damage" is right up to his top lip so he only has a bit of a moustache left. Once again aloe vera saves the day - this time as a face cream. I'm sorry I don't have any photos - yet.

Sunday, August 8, 2010

Fighting Candida

John suffered a bout of “thrush” in his mouth this last week. It is a yeast infection of the mucus membranes due to his depressed immune system. Mouthwash and meds seem to be controlling it, however, and he reported that once he worked out the timing of mouthwash, gargle, and eating, the relief was almost immediate.

He also reported that Friday was the first day after the second round of chemo that he went without the heavy nausea meds – and he felt pretty good. He has lost almost all of the weight he gained, though, so is now supplementing his food with calorie-boosting drinks. He is back down to 94 kg.

The good news is that food actually tastes like food. Patty made him a tasty lentil and coconut soup and he found that pork tenderloin can be cut up into small enough pieces and, when added to beef broth, makes a nice stew. “I can even taste the lovely pork fat flavour.” he told me.

After getting 21 of his 35 radiation treatments he is still without blisters and manages the fitful nights with his aloe vera mixture. Much of his time includes plenty of napping since he still feels exhausted.

Wilma has gone back home but she and Gary will be returning next week. This means that they will be around for his third and final chemo treatment.

Tuesday, August 3, 2010

Eating and Sleeping

John reports that his regime over the last few days has been eating and sleeping. As with the first round of chemo, the days following are “horrible” – super nausea (significantly moderated by the heavy medication), fatigue, and struggles to keep enough food going in to counterbalance the ramped-up metabolism of his body under attack. Our call caught him during an awake part of the cycle, slurping on a milkshake, and sounding like he was ready for another nap.

He said that he can finally tell that his neck is getting irradiated since the hair has stopped growing on his neck – on both sides: where the radiation enters and exits. His throat seems to be holding up, although his apple juice and aloe vera cocktail has been modified to aloe vera and water to avoid the acidic nature of the apple juice.

The daily radiation treatments are relatively quick, John reports. He lies down on a table and they clamp the previously prepared mould over his head – to make sure that his head is in the proper place for aiming the radiation. The radiation only takes a couple of minutes – except on Fridays when they add some time to conduct some “imaging” to assess the results of the treatment. This last Monday, meant no treatment however, since it is a BC holiday.

I have attached another of Aaron’s picture of John in his sunshine garb. He figures it may become a permanent feature of his attire – although he did not escape being ‘corrected’ by his older sister regarding the way in which the scarf is folded.

Saturday, July 31, 2010

Sir John of the Chemo Ward

John had his second round of chemotherapy on Thursday and Friday. He has emerged in good spirits (so far as we can tell in a long distance call). He arrived at the hospital on Thursday morning (after his daily radiation treatment) and they told him he was a bit dehydrated (in spite of the cream-based milkshakes he had been downing). This meant that the chemotherapy would be delayed until they got his liquids back up.

The first part of Thursday, therefore, meant an IV drip on top of the other preparations made for chemo. The pleasant discovery of the process was the combination of ginger ale and cranberry juice: its lower acid level meant that it did not aggravate his throat as much as orange juice.

The chemo drip began later in the afternoon and coincided with a visit from Wilma who used it as an occasion to try out the Canada Line. John reported how lovely it was to see her.

Thursday night was a bit fitful sleeping so they gave him a sleeping pill. He was pleasantly surprised that the sedative didn’t mean that he would end up wetting the bed as the extra liquids made their way through him. Instead, he found he would still wake up for frequent urination, but he had no trouble falling back to sleep. He even felt that it had been a rather restful sleep by the time the morning came around.

John also discovered that he would be able to continue using the strong nausea pills he was given when leaving (on Friday). During his last chemo session he thought they had to be distributed over all 3 chemo sessions so he had cut back on them prematurely. This time around, he was assured they would give him a new set next time – so he is looking forward to a more comfortable time over the next few days.

Aaron passed on a few photos documenting John’s journey. The first gives you an idea what all the fuss is about – the lump in John’s neck (if you can see it!) – and the second is the attire that “Sir John” wears when outside in the sun.

Wednesday, July 28, 2010

Anticipating round 2 of chemo

Wilma came down from Sicamous to visit John and Dorothy for a few days. This will coincide nicely with John’s next hurdle: his second chemo treatment on Thursday (“a little bit scary” he reports). He will go in to the hospital on Thursday morning (July 29th) to get the usual prep and will stay overnight to receive the treatment and early recovery. This time, he says, he will be more careful about hydrating with calories and taking advantage of the wonder of laxatives.

At present, John reports that each day is a bit unpredictable. Some days it’s nausea (controlled by light medication), sometimes it’s morning headaches, and sometimes it’s constipation. So far his throat is not a major problem and can be managed by the aloe vera and apple juice cocktail. His strategy is to eat lightly every 2 hours or so.

Aaron continues to serve as welcome backup with the paper run and Dorothy’s support.

Thursday, July 22, 2010

Dry Mouth

Having permission to eat comfort food loses its appeal when everything tastes dry. John reports that he has had to rely on memory to enjoy even cheesecake, steak, pasta, and homemade soup. I'm wondering whether it will be an orgy of new discoveries once the therapy is over and his taste buds are revived. Something to look forward to!

He says he has lost some energy, but was able to visit Bowen Island on Sunday, Dorothy on Wednesday, and even get in some personal shopping. Monday was a day to "take it easy". His weight is back up a bit (up 3.6 kg) and he has found that aloe vera has provided welcome comfort to his throat in the face of the radiation treatments. On Monday it was very sore but after he began taking aloe vera and apple juice it has become much more manageable.

He lives with nausea, but uses light medication to manage it. He reports that it means he eats slowly - constantly - in order to keep his weight up. Tomorrow is his next weigh-in so he will get the official word on how well he is doing.

His biggest concern seems to be Dorothy - not his own situation. Aaron has been her shopping and errand support and Wilma will be in town soon (on Sunday the 25th) so, along with John's occasional visits, it seems that she will be well taken care of. Wilma plans to hang out in Vancouver for a few days at the end of this month and then will return later in August.

We were pleased to hear how well John is doing - in spite of the corporeal onslaught he is facing. Each of the new challenges seems to be adequately met and his spirit seems high. He is looking forward to a trip to Bowen on Saturday for a change of sight and place.

Erratum: Aaron noticed that I had erroneously identified Gabriola as the destination for his weekly paper runs. It should have been Gibson's. Sorry John and Aaron! That's what you get for hiring a cheap ghost writer.

Samantha complained that she wasn't included in the photo of the chocolate eclair crew - so here is one of her and her uncle from Christmas 2004.

Thursday, July 15, 2010

The Chemotherapy Quick-loss Diet

John reports that he lost 6 kg in 1 week! Looking in the mirror he sees JP (without the hair, I presume). He can even touch his toes. It sounds like a tasty diet as well - cream instead of milk, butter on everything, with extra cheese all around. John figures that his body must be a whirlwind of cell death and reconstruction - with all that activity sucking up energy wherever it can.

The down side (besides the cancer, of course) is the necessity for plenty of laxative medicine. It took him a while to work out the appropriate levels to overcome the constipation, but it sounds like he has figured it out for now. He also experienced some ups and downs with nausea as he finished off the first set of heavy meds, spent a day or so suffering with the resulting nausea, then restarting them again - with positive results. This has meant beef tenderloin last night and lamb tonight.

He has an appointment with the chemo doctor tomorrow - not for more treatment - just for a chat, checkup, and to ask the many questions that have arisen since the first round of treatment.

It was lovely to hear him back in such great spirits - and with an obvious rejuvenation of energy.

Here's a photo of the goal we are setting for you, John. Who cares if it was 1975?

Monday, July 12, 2010


John reported that today (Monday) was not as good as yesterday. He figures it was partly because it was the first day without the "major nausea medications" that he was given after the chemo treatment. He went to the hospital for another dose of radiation around noon but discovered that his energy level had dropped so much that it was difficult to get off the couch.

This is quite a contrast to the previous day when he prepared his usual Sunday breakfast for whoever turned up. Not only did he eat his fill, but did the laundry, and spent the afternoon eating cherries on the back porch.

Aaron took over his Monday visit and shopping trip at Dorothy's so all is well with his other obligations. Frankie (his nurse friend) passed on some tips about massage points to help with the nausea so he is making good use of this technique. John added that he is still eating and drinking okay in spite of the occasional nausea.

He will be in for radiation treatments every day this week - the first full week of this therapy.

Here is a photo of Uncle John leading the chocolate eclair crew on New Year's Day - 2010.

Saturday, July 10, 2010

First round of radiation and chemo

John had his first round of radiation and chemo-therapy on Thursday and Friday (8th and 9th of July). He went in to the hospital on Thursday, received radiation treatments (about 15 minutes to set up and receive the radiation), and stayed overnight to receive the chemo-therapy. The chemo is delivered intravenously overnight. He was released from the hospital on Friday. I had a chat with him today (Saturday).

He reported that his nausea is not as bad as he expected. It seems to be well managed by the medication. He couldn’t eat on Friday, but slept well, and had a regular breakfast today. He even forgot he was on therapy a few times during the day. Apparently alcohol is not off the list of foods – and they even recommended Guiness since it has calories. He told me that he doesn’t like the taste of Guiness, but since his taste buds will be out of commission in a few weeks he figured that at least it will provide him with calories!

He will go in for radiation therapy 5 days a week (Monday to Friday) – with weekends off. It is only for a short time each day so he will likely be able to keep his activities up while his energy lasts. He was warned that he should not go into new environments, however, since his immune system will be severely weakened and shouldn’t expose himself to any new “bugs”. This means he will be able to visit Dorothy but not take her shopping.

Here's a photo of John with Charlie (John was trying to be a ventriloquist, but Charlie wasn't fooled!

Background information

John received a diagnosis of metastatic squamous cell carcinoma in early May. He had gone to the doctor after Wilma insisted that the lump on his neck was getting bigger. It took 2 biopsies to confirm the diagnosis but once it was established a team of specialists was quickly assembled. It took about 3 weeks of tests to determine there seemed to be no identifiable source of the cancerous cells and to establish the best course of action.

Since the cancerous cells were concentrated in the lymph nodes of his neck then radiation treatments were the proscribed approach. At the same time a series of chemo-therapy treatments were added to deal with any other cells that might have migrated to other parts of his body. They felt that the chemo-therapy might also deal with the source of the cells if they had missed it in their earlier scans.

It is very difficult to anticipate the effects of these therapies on John's body and life. Each person reacts somewhat differently. Chances are that he will experience pain in his throat as the radiation treatments have their effect. This will mean that he will have trouble eating solid foods a week or so into the treatments. He will also experience nausea along with the chemo-therapy. In general he will be very uncomfortable for the next few months. The 2 therapies are scheduled to take place over 7 weeks.

John has been concerned not only about the his personal situation but how he might manage the other obligations on his plate. Primary among these are the weekly times he spends with Dorothy (his mother), both for the social visits and for the shopping, cheque-writing, and other errands that need to be done on her behalf. Aaron has offered to step as much as he can – including some of the weekly paper runs to Gabriola that John makes. Dorothy insists, of course, that she is able to manage all of the shopping and other activities for the duration of John's treatment.

We know there are many of you out there who share our concern with the difficulties that John will be facing over the next few months. Part of that concern can be managed with up-to-date information on his progress and a method of communicating on an ongoing basis. It is for this reason that I have offered to set up a blog to keep you informed. I will add to it as I learn of John’s progress.

You are all welcome to join in with your own comments or best wishes as the events unfold. We hope that this will not only keep you informed, but will serve as a support to John over the next few months.