Craig's Story

A year out….

craig — Sun, 30 May 2021 19:26:33 +0000

What a difference a year makes

What a difference a year makes! Maybe not a day, but a year does change things for the better.

May 28th 2020 was my final radiation session, so one year 2 days ago. Last night, because my six monthly examinations are due this coming week, I posted on Facebook for the first time in a long time. I also read some of my old blogs and a year has certainly eased some of the awful memories I had of my treatment.

Starting at Autumn last year, I started picking up some website work and that helped me get back into the swing of things. I took on a project at a rock-bottom price to help a start-up and also help me to start designing again.

Last year took a toll on me and I was suffering with depression, anxiety and panic attacks - none of which I recommend to anyone! I saw my doc and went onto Prozac for a while to help calm myself and I stayed on the drug for a while until I felt better able to cope with things.

What I had been through was bad enough, but poor Linda who suffered an horrific burn to her right leg and foot in an accident at work, was also in a bad way and unable to work for something like two months. Her burns were awful.

What a pair we made...

Come Christmas I gave up trying to eat real food. Eating was almost impossible due to the lack of saliva. My taste buds were still shot to pieces and it became a real chore to chew away on 'food', which eventually turned to be like cardboard and unable to swallow it.

With a little experimentation, Linda came up with a great smoothie which I still drink to this day.

The base is cornflakes which are soaked in milk. Then strawberry/banana Greek yogurt is added along with whey protein, apple, melon, pineapple, strawberries, blueberries, spinach (got to have my greens!) and maybe a few more things I've forgotten. All this is then blended and the end result is a healthy, filling smoothie of which I drink one at breakfast time and two at dinner time. For lunch I have a couple of Ensure high protein shakes and a yogurt. In the evening I eat another yogurt and ice cream.

It works for me and my blood labs have been fantastic and my weight steady at around 156-157 lbs (71Kgs), or 11 stone in old money!

I had a PET scan towards the end of the year and got the all clear after that.

Now, six months later it is that time again and I have to go see my radiologist on Tuesday, where no doubt he will order another PET scan, and the following Tuesday I go and see my ENT doc for a visual examination of my throat.

I don't think my cancer has returned but it is always a rather worrying time until the results come in.

Throat-wise, things have got a lot better but there is still a long way to go. As I mentioned I don't produce enough saliva to be able to eat. My taste buds work minimally, unless there is anything spicy when they go berserk, and I have constant nasal drip which is both annoying and concerning.

The lack of saliva leads to another problem, which is tooth decay and this year I need dental work which is going to end up being very costly.

Talking of costs.....for those who read this in the UK, please bless the NHS! OK, I got lucky last year and through a friend, found a wonderful lady who was able to get me on an insurance plan. My only outlay was $1600 towards the cost of my treatment. My medical bills amounted to $427,000 - yes, over four hundred thousand dollars which is frightening. Had I not got the insurance, I don't know what the outcome would have been.

I am beginning to doubt whether I will ever fully recover from the radiation treatment. I am beginning to doubt whether I will ever eat real food again. I help out on a Facebook group which is all about Head and Neck cancer and I posted on there about the issues I was still having and someone replied to say that he was 9 years out of treatment and still couldn't eat.

It sometimes feels like we need a support group not just for cancer survivors but for radiation survivors - the treatment is that bad!

I'll post again once I get my test/exam results back - so in the next couple of weeks.

Thanks for reading and thanks for all the support and encouragement on the Facebook page

As an aside, Linda and myself have been blessed with 2 new grandchildren this year - Alfie and Max, who live in the UK. We are hoping to get over there, maybe at the end of this year to see them, Covid and finances allowing.

to be continued

~~~

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Up to Today

craig — Wed, 12 Aug 2020 21:26:47 +0000

Progress So Far...

I got out of hospital on Sunday evening and was able to make my last two radiation treatments during the following week.

It was a huge relief to have the radiation treatment over and done with and assumed the damage being done to my throat and mouth would stop there and then. Unfortunately not, I now believe my throat kept on cooking for up to another 2 weeks after treatment.

The mucositis continued for about 7 weeks and by now as I write this on the 12th August and gone but has been replaced by ‘dry mouth’ whereby my saliva glands are not working properly and not producing enough saliva.

On the 16th July I was in hospital for my heart ablation and that all went well. It was after this that I finally felt like trying to eat real food. Linda has been cooking me up simple dishes such as chicken pot pie and ground beef and mashed potatoes with loads of gravy and I am able to swallow these down without too much trouble.

On the 3rd August I had my feeding tube removed, another big relief.

For months now I had not been taking the medications I was supposed to be taking because I couldn’t swallow. As my condition improved, gradually I was able to swallow bigger and bigger things and finally I was able to cope with swallowing all my prior medications which is (yet another) big relief.

I have a follow-up with the doc about my heart ablation on the 24th August and some time this month I am due to have a full pet scan which, I assume will either confirm that my cancer has gone or worst case, highlight if there are still some issues that need addressing.

Other than that I am trying to eat, get some exercise, put on weight and appreciate being alive!

to be continued

~~~

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And Then I Stopped…..

craig — Sun, 02 Aug 2020 20:55:50 +0000

I Had to Stop!

And then I stopped…..

I had meant to document this procedure the whole way through but I couldn’t do it. Things just got too bad!

After week 4 of treatment I lived in a blur of drugs and exhaustion. Increasingly strong doses of Hydrocodone and Acetaminophen kept me doped-up without necessarily doing much for the pain.

I don’t remember much about this time at all. One thing I do remember is driving to and from the appointments and being terrified about crashing. My brain was simply not capable of controlling a car.

According to Linda, I slept a lot of the time.

On or about my 31st radiation session, Linda had driven me to the session and at the end I was talking with the nurses and feeling awful. Dr Tandon noticed and got them to take my blood pressure and it showed my pulse rate was massively high. My A-FIb has gone into overdrive and he send me straight to the ER to be checked out.

At the ER they tried stopping my heart to re-synch it but it didn’t. However, after drugs, it did settle down and I was allowed to go home.

The next event was early Saturday morning, I got up with Linda but was unable to swallow any meds at all. I was panicking and my heart went berserk again. This time I drove to the Beach Emergency Room where they stabilized me and then transferred me to the main hospital in Panama City.

I was kept in for the weekend, and what a miserable weekend it was. I was totally antsy. I could not keep still. I couldn’t sit for more than a minute, couldn’t sleep, couldn’t lie still. It was a nightmare. I couldn’t eat at all and had to be taught to use my feeding tube. It was also at this time my Mucositis fully developed.

Mucositis causes inflammation and ulceration of the digestive tract lining. It usually affects the mouth and often results from cancer treatments.

When the thin mucous membrane that lines the digestive tract becomes inflamed, it can be painful. This condition, mucositis, can develop anywhere along the digestive tract, but it is common in the mouth.

People who undergo cancer treatments, such as chemotherapy, have a high risk of developing this condition.

Symptoms

Mucositis can cause a range of symptoms, many of which affect the mouth. Some common symptoms of mucositis include:

dry mouth

thickening of the saliva

an increased amount of mucus

shiny, swollen, or red gums

soft, white patches or pus on the tongue

sores in the mouth

blood in the mouth

pain or a mild burning sensation while eating

trouble swallowing or talking

In very severe cases, mucus, pus, or thick saliva can fill the mouth. If this occurs, it can prevent a person from eating.

My Mucositis lasted until about 7 weeks after treatment ceased. It is horrible. I would cough up great gobs of mucus which extended down my throat. I could literally pull out long heavy strands of mucus from my throat. It would fill my mouth and cause me to drool.

Everywhere I want I had to carry wads of kitchen towel in order to hack up the mucus and deal with the drooling. Often I couldn’t talk before spitting out the excess mucus.

Mucositis is one of the most horrible side-effects of chemo/radiation.

to be continued

~~~

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Awful Times…

craig — Fri, 08 May 2020 14:53:40 +0000

Awful time, awful, awful

Awful times….

I’ve been though some bad times in my life, some awful times in my life and these have lasted various mounts of time but never before have I been through a persistent nightmare such as this treatment. This torment is going on for weeks and it is extremely unpleasant.

I survived the first 3 weeks pretty well. At the end of the 3rd week though, everything changed.

The pain ranked up especially in my tongue and became unbearable at times. So much so I asked my doc to prescribe new pain meds. What he prescribed though I was not ready for.

He got scripts for Magic Mouthwash to help with he sores on my tongue, an antibiotic and also Fentanyl. It was the latter that did it for me. This stick-on patch delivered its lethal dose direct onto my liver and every other organ. It blew me onto a different planet somewhere and left me hanging there.

I ripped the patch off after 2 days but the damage was done. I felt terrible, awful, spaced out and unable to concentrate on anything. Also antsy as hell, needing to pace the whole day being unable to settle in anyway.

This nightmare went on for days until I could rid my self of this stuff. And on top I was sick sick as well. Even water would refuse to stay down. I has the entire Sunday without any food at all and still managed to throw up a couple of times. It took until Wednesday of this week to feel I was finally returning to my now ‘normal’ state.

Probably the most horrendous experience of my life and I could never ever go back there again!!

And what is my new ‘normal’ state?

Pain, the patch went away but the pain in my tongue didn’t. Now I have to live with it. Feeding is via tube only, I cannot swallow normal food so am living on 7 bottles of Boost per day to keep me nourished.

I’m still quite antsy but nowhere as near as bad as before but still find concentration difficult.

After today I have 4 ,more chemo sessions and 12 more radiation. Sessions before recovery can begin. I reckon it will take another 3 weeks after treatment to get back to approaching normal….we shall see!

To some the treatment for cancer is worse than the disease, and today I can sympathize with that comment. It grinds you down, saps every ounce of strength and depletes every reserve you ever had and it doesn’t stop. It doesn’t take a day off, it doesn’t care. The only route through this is to face it head on and fight. Boy what a fight.

I suppose one day I will look back on this and have feeling about this period but they are more likely to be horror than anything else.

The only good side of all this is I am able to sleep and dream nice dreams. I spend a lot of time sleeping - helps pass the time, helps avoid the pain.

to be continued

~~~

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Week 4 Begins

craig — Tue, 28 Apr 2020 00:15:30 +0000

Won't end soon enough....

Monday beginning treatment Week 4

Not a football score but:

Radiation 14 : Chemo 7………

After a rather horrendous weekend I made it through to Monday for another round of radiation and a well-earned Doctor’s visit.

I wasn’t able to consume any solid food over the weekend and survived on Boost ‘Balanced Nutritional Drink’. About 6 per day is enough to keep me fed.

I was in so much pain on Sunday, I at last resorted to using my Peg tube and fed in a couple of bottles via a large syringe. Go straight to stomach, do not pass throat! - It works!

This morning I was a bit better and managed some soggy cornflakes for breakfast. I did slide in an Ibuprofen about 6:00AM which I am increasingly convinced, is a really good pain killer for me.

At the doctors, I found out that I had been taken an anti-nausea med incorrectly and I’m hoping the proper way helps!

I also got a script for Fentanyl pain patched and Magic Mouthwash. The Magic mouthwash is a concoction put together by the pharmacist which acts as n effective numbing agent. A small 10ml swirl is good for 8 hours apparently.

I have so many drugs, pills and potions that I’ve had to start a spreadsheet to keep track of where I’m at with everything. I’ve found that my main pain meds are also putting me into a low orbit so my memory isn’t quite as good as normal

So, here’s the list…. Norco (pain), Fentanyl patch (pain), Compazine (nausea), Zofran (nausea), Magic mouthwash (pain).

Being someone who is anti-medication in normal life, but who is also a coward when it comes to pain, I’m in a challenging place but I really don’t want to spend the next weeks enduring more than I have to….

Once the treatment is done (assuming I’m not done first!) then there is probably a further 3 weeks or so until things return to normal.

So for now I have to endure all this horrible disease and cure throws at me.

to be continued

~~~

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The Honeymoon is over!

craig — Sat, 25 Apr 2020 22:10:22 +0000

Well and truly over!

I was pretty sure that my reaction to treatment was going to get worse and my word, it just did that!

(Slight moaning section but please allow me some leeway!)

Friday morning, throat like a furnace, tongue swollen up both sides and difficulty speaking. I was sort of expecting this to happen at some point and it seems that point is…….now!

Radiation treatment and what followed seems also to be the norm. Nausea and vomiting. I had got some extra anti-nausea meds from the doc but nothing was going to stop this upchuck from being chucked up!

Terrible pain also. It seems my body has had enough by Friday and it simply cannot take anymore of the radioactive stuff.

Friday night was fairly awful but I did get some sleep.

Saturday and the pain had ramped up more. I was supposed to take pain meds every 8 hours but has already started clawing that back to 7 and then 6.5…..The pain meds do work if allowed an hour to kick in, 2 hours effective and then the downhill slope back to misery.

Anyway, my good Doctor calls me!!!!!! What a man!!! I explained what was going on and he advised me to reduce pain med time to 4 hours and come Monday will write a more powerful prescription. Also he advised me to fill-in with Tylenol liquid in between.

He is also going to write me a prescription for Magic Mouthwash, a concoction for gargling with which is really effective against mouth sores and cankers.

Hopefully come Monday I will be better able to cope with the pain anyway, the nausea…..who knows?

Eating is out of the question. I’m not using my ‘Peg’ tube but am consuming Boost Plus and some wonderful Icelandic yoggies called Sigi’s that Linda found in our supermarket. I’m also drinking soup and this combined should give me what I need to survive. I Can’t afford to lose much weight and I’m very conscious of the dangers of not getting enough nutrition.

Even though not much has been going in, not much has been coming out either!!!! Yep, constipation as well, just to add to the mix.

So, the honeymoon is well and truly over. I think that what is happening to me now is the pattern up to the end of treatment and probably up to 3 weeks or so afterwards. It is going to be a long haul and very tough to get through.

But get through we must!

Although the last two days have been a bit of a downer, the human body quickly adapts to even the shittiest of circumstances and given a few days I’ll feel a lot more upbeat.

to be continued

~~~

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A week in the life of a cancer patient

craig — Wed, 22 Apr 2020 22:09:18 +0000

every day's and endless stream of cigarettes and magazines

So what’s it like being a cancer patient? For me it is perhaps still early to tell but every day I learn a bit more and survive a bit better.

I’m now 6 Chemotherapy sessions down and 12 Radiation sessions complete so not quite half way through treatment.

I can tell you what it has been like but the future still holds many unknowns and I have to wait and take them as they come. There is no running away from this.

Monday - Friday

My days Monday thru Friday are taken up as follows:

When I arrive at the center I report to the front door (in protective facemask), have my temperature taken and get booked in. I then wait in my car until called to come in for treatment.

Monday 11:45AM Hope Radiation Center - 9 miles away - treatment only takes about 5 minutes but delays going in are common so probably head for home about 12:20PM

Tuesday 10:AM - Hope Radiation Center - Chemotherapy. Once called in have weight and BP/Pulse measured and the off to the treatment room. My life port get connected and I get a small bag of Decadron Steroid followed by a bag of Benadryl (to stop any allergic reaction - also acts as a snooze juice!) Then the big one which is an hour drip of Cisplatin.

If things are running late then during my drips, I will be collected and taken through to the radiation room for my radiation treatment, while the drip continues.

Once all complete, the life port is bandaged over ready for the next day

Wednesday 10AM -Hope Radiation Center - Chemotherapy as yesterday and Radiation as yesterday. Lifeport is bandaged over for Thursday Blood Labs. Normally Wednesday is also Doctor Day when I get to meet Dr Murshed and we discuss progress, problems and can sort out any new prescriptions etc.

Thursday: 11:45AM - Hope Radiation Center - Radiation Treatment also Blood Labs Day. After radiation I get blood drawn for lab purposes.

Friday 11:45AM - Hope Radiation Center - Radiation Treatment.

Saturday - Sunday

Saturday and Sunday brings a well earned rest!

So, that being the routine, what is it actually like and how has it been so far.

Tiring is the first word that comes to mind. My body is being poisoned with Chemo drugs and dealt large doses of radiation. My immune system is being destroyed, my ability to fight sickness is being eroded. Exhausting may be a better word. By Friday PM I am toast - literally.

Up to now for me the major symptoms have been headache, nausea, some vomiting and mouth pain.

Medications

I have strong pain meds (Oxycodone - Acetamin 7.7 - 325) which I take every 8 hours. A also have Prochlorperazine 10mg) for anti-nausea every 8 hours as needed. On Chemo days, I get anti-nausea in my drip feed so stay off the anti-nausea pills until later on in the day but I find on days of Radiation only, even if I take the pills I still don’t ever feel great.
Strangely enough my best days are my Chemo days as the steroids give me a lift and I just seem to feel a lot better.

Today should have been Doctor Day but it was put off until tomorrow so I can discuss my nausea issues and see what can be suggested. Nausea is horrible. It takes away my appetite and makes me feel down and tired. I hope it can be fixed….

Symptoms

My mouth is sore. Even with pain meds I have a constantly sore throat and what feels like mouth ulcers around my throat and sides of my tongue. I get very dehydrated and my mouth gets very dry. Sometimes it is hard to swallow. I need to keep constantly consuming water to keep my throat lubricated and less painful.

On the plus side one of my original issues of nasal drip seems to be abating and is not nearly so noticeable, I assume because the tumor is shrinking.

Feeding

Feeding can be an issue. So far I have mostly stuck to a regular diet and we are learning what is good to eat and what isn’t. My taste buds are changing and I have to be wary of anything which may taste metallic, acidic or spicy.

Linda is being great and making me plenty of soups, Mince and Tatties!!! (Yum!!), beef stew but we have mostly given up on things like grilled chicken and pasta as they are not so easy to swallow.

I have large supplies of Ensure and Boost Plus which contain all my needs to the day by drinking about 6 bottles, but what I try and do is eat some regular food and some liquid food throughout the day. Linda has also found some amazing milk/fruit drinks (high calorie) based on an Icelandic recipe and some super yogurts which are not loaded with sugar.

I do several cups of tea per day but am only otherwise drinking plain, filtered water.

Evening time is shower time. If my life port has been bandaged over I need to protect it from getting wet so that needs to be covered in plastic wrap and taped down.

I have a feeding tube in my stomach! The tube is about 9 inches long and is bandaged to my front in a little coil. The tube has an entry port and a clamp to stop anything coming out but there are about 3 inches of stomach content resident in the tube and this need to be flushed out every evening after showering.

It isn’t as bad as it sounds, I just un-bandage it, fill a syringe with warm water, loosed off the clamp and open the port and a quick sqoosh and the water flushes out the tube. Remembering to tighten the clamp I then bandage it up again.

I’m hoping never have to use it for feeding but in the weeks to come, if things get too painful/swollen then it is my survival backstop to get food in.

My saliva has changed. It feels like runny snot and sometimes I have to spit it out in great snotty lumps - it can get very viscous. Not nice. I am also having to brush my teeth several times per day as the radiation treatment is not good for them.

I’m not allowed out in the sun! Sun and cancer treatment is not good. A quick walk to the mail box is ok but definitely no sunbathing or extended periods of skin exposure. Hell, we live in Florida so I’ll get all the sun I need after this is over!

My Mood!

How is my mood? Linda would more likely give a truer answer but given what I’m going through I would say not too bad. I do get a bit depressed when I am feeling unwell and do get a bit grumpy when my head hurts and or am tired but I would imagine most people would feel the same way.

I can have a laugh and a joke when I go for treatment as all the nurses up there are wonderful and I’m in love with them all…

Sometimes when feeling unwell I feel the length of time this treatment is taking and the distance still to go and that can be depressing. On the other hand I also remember how far I have come, how the medical bills are being paid and how all the many decisions I/we’ve had to make have turned out the be for the best.

I am getting better and I feel incredibly blessed and thankful for all the support, help, assistance, kind words, amazing people who have all had an influence on myself and Linda. It has not been an easy ride but (touch wood) it has been doable and here I am heading towards half way and feeling incredibly positive about the future.

I’ve also been blesses with having some wonderful clients who have kept a steady stream on new work coming in for me to do. Nothing overwhelming, but enough to get me doing some website design and website building and that for me anyway, is therapy in itself.

(twas on the Monday morning the gas man came to call, the gas tap wouldn't turn, I wasn't getting gas at all...) Flanders and Swann

to be continued

~~~

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Week 2 Starts

craig — Wed, 15 Apr 2020 03:34:44 +0000

On with the roller-coaster!

I’ve been lax in writing - I must do better!!!

It has been a bit of a roller-coaster ride over the last several days, lots of downs but not many ups unfortunately, but I am learning and surviving and the more I learn the better I will survive.

I has no treatment on Friday!! Just as well perhaps because Friday saw me laid lower than the last man on a totum pole!

I was banjaxed. Tired, oh so tired. I slept most of the day and the next night. This treatment was kicking my ass.

Sauturday and Sunday were not too bad but Monday returned me to the microwave and Boy did I get a dose of radiation sickness last night. Very unpleasant.

I felt it coming on in the afternoon and got progressively grumpier as the tiredness crept in, the headache started thumping and the need to food was - well, gone. I did manage to eat some and later on took an anti-nausea pill. Too late!!!!

Lesson learned.

When I have chemo, one of the potions administered is anti-nausea. So I guess that covers me mostly for chemo days. It is the days with only microwaving that I need to be more careful and be more sensitive to the possibility of an emerging puke!

Take the pill early in the afternoon on microwave-only days!

We’re in lockdown of course, everyone’s in lockdown. For myself it isn’t too much of a hardship as I cannot afford to get ill as my immune system is systematically destroyed. It is a little pleasurable, or at least slightly gratifying that no-one else can go out either. And I do get to go out!!! Yipee, five days a week to the cancer center

Linda is back to full-time work. Things are going better and she is back to help old self. Her communication ability is no worse than it was before (wink) and she’s looking after me despite my at times shitty moods.

I’ve been busy as well. Two websites on the go, and it has been hard at times to focus and have the energy to get my head into it. But it helps and it gets me away from all the other stuff that could easily flood my mind.

My headaches don’t help with any creative juices I might have left and I sometime struggle to pull thoughts together. Sometimes I struggle even to sit there and look at them.

I spoke with my friend Barbara, who is a specialist head and neck cancer nurse in the Manchester Royal Infirmary and who also, bless here spends her spare time helping out in A&E wards around the area as the cononavirus takes it’s toll on NHS staff. Her dedication is simply amazing.

Barbara helps me understand why things are happening to me, what I can do about them and how to look after myself. Sometime when we don’t feel well we tell ourselves that nothing is really wrong but are concerned. Barbara told me the way it is, was and going to be and convinced me that it is ok to feel ill, ok to feel tired, ok to feel depressed and things are going to get a lot worse before they get better. Tough love, tough luck, deal with it and be prepared for a rough ride.

Every day I wake up and look at this tube sticking out of my stomach and the life port bandages (Tuesdays, Wednesdays and Thursdays), I am reminded of the awfulness of this treatment. My body has to be taken to within an inch of its life, in order to have any life.

So, moving forwards I need to start doing more photography! I need to spend some time every day looking and observing, Discovering how to take pictures again and relearning the art o photo editing. We all lose our skills in time and mine are rusty.

Perhaps I should do a photo project all about living with and being treated for cancer? Now, there’s a good idea.

Tomorrow seems like an excellent day to start!

to be continued

~~~

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Week 1, Seven to do…

craig — Thu, 09 Apr 2020 03:20:18 +0000

Week 1 begins, seven weeks to do

Week 1 of treatment starts - seven weeks in total to do.

Let me just get this out of the way first. Then I can get on with the rest of the stuff.

Starting Radiation and Chemotherapy treatment for cancer is frightening! It is scary, stressy, it is exhausting and it is totally unknown. I don’t care who you are, what you are how big your balls are or how cool, relaxed and unfazed you are.

It is scary!

OK, done that said that, meant that!!!! Don’t believe me? Try it!!! (no don’t!)

The Hope Regional Cancer Center is where I am lucky enough to be having my treatment. Their doctors are world recognized, their facility is new and comfortable and their nursing staff are amazing, friendly, funny and they are buying my Suck My Glock Tshirts!!

The Hope Center is 9 miles away and I am driving it. The current lockdown (Corona Virus) makes the roads nice and quiet so I can do about 15 minutes door to door.

I don’t think I could feel better looked after anywhere.

Tuesday was Day 1. A long day….first Radiation treatment which seemed to go on a long time. They adjusted me part way through so it was, in fact twice as lengthy as it should have been.

Then onto Chemo. Drips put into my Lifeport to feed in anti nausea + streoid (Decadron), Benadryl to ward off allergic reaction (and make me drowsy) and finally the big one Cisplatin.

This first Cisplatin dose ran for 3 hours.

I’m in a room, laid back on a lazy-boy and comfortable. There about 5 other treatment chairs in the room and it is overlooked by the nurses’ station. Constant banter, chat and laughter….food, snacks anyway on demand and actually a place to escape for some moments of peace and reflection.

Today, Day 2 was much easier. Chemo first, this time only 1 hour for Cisplain and half an hour for the others. Radiation was over and done with in 5 minutes and Wednesday is ‘Doctor’ day when I get a brief review with Dr Murshed, the center’s medical director.

I need to gain weight apparently! He reckons I will lose up to 10lbs during the treatment so I need to bulk up using up to 6 bottles of Boost or Ensure per day.

I was worried about pain and I was worried about nausea. So far, they have upped my pain meds a notch and that makes them effective for longer and I have a prescription for nausea meds but so far have not felt the need to take them.

Pain and nausea affect different people in different ways. I dread nausea but it is rather like sea sickness….having spent a lot of my life at sea I have often been asked if I ever got seasick. The answer is…not yet! I hope that will be my answer as we go though this treatment.

Tomorrow is Thursday - no chemo but it is Labs day. Blood labs to be taken plus a radiation treatment. Friday and Monday radiation only, then Chemo return on Tuesday, Wednesday - you get the drift…..

Nothing much else to say about how it is going. It is tiring but it is life-saving.

I am happy to be where I am being treated and that is the most important thing to me. I have trust and faith in the doctors and nurses who are treating me and I am blessed to have such a wonderful facility so close by.

I know they are going to do their best for me and I must do my best in return to work with them and keep a healthy, happy attitude - for as we all know, attitude is everything.

I don’t think about the treatment being unsuccessful. I am content to go with the flow and see where this journey leads.

Being in the Cancer Center, I don’t see unhappiness or misery. Today one of the ‘inmates’ finished his last chemo session and a bell was rung, he was handed a certificate and had pictures taken with the nurses! It all makes for a lovely experience!

I know it is very early days but 2 down, 33 to go, not that I’m counting….

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The Storm

craig — Thu, 26 Mar 2020 23:05:40 +0000

but where's the good man?

I remember many years ago being on a sailboat in the Irish Sea, having retired from an off-shore race due to equipment failure. We were running before a storm with only a foresail, massive waves on our stern, and heading for shelter behind an island. It was cold, it was snowing, and it was frightening as the following waves did their best to force us to broach.

My day yesterday was about as much fun, only with the addition of copious amounts of pain!

I had a vision of how things would go yesterday. Practiced, rehearsed and well-versed, I was ready for it. Arrive at the hospital in good time and after formalities takes to a comfy bed, where shortly after a sweet nurse would come and give me a Happy Pill - just to let me relax…..I would smile bravely at Linda before being whisked away for an injection of sleeping juice that would slowly allow me to descend into the depths.

Some time later I would wake, happy to be alive, be free of pain and warm and comfortable. And, oh so relaxed…..bliss……allowed some moments to come to before Linda arrived when I would smile at her bravely and reassure her everything was just fine…….

It wasn’t like that of course!

No Happy Pills for me! A wait in a bed prior to surgery that stretched out to about three hours, needed a pee by then of course…..and when they finally wheeled me out to face the surgery, a shot in the arm that felt akin to a red hot poker being forced up my arm.

The recovery was pretty awful as well…I was cold! I was freezing. I hadn’t taken any pain meds for over 12 hours and my throat was on fire. My stomach felt like someone had rammed a chisel into my guts and my head was splitting.

I think I’ll stick to sailing…….

These days pass though. Etched in memory forever perhaps, but they do pass.

No rest for the wicked nor the weak, the Hope Cancer Center was on the phone arranging a ‘dry-run’ radiation session for this Friday afternoon, with treatment threatened to start next week.

My recently acquired bodily attachments are sore, annoying and rather scary to look at. I’m covering them up as best I can with a vest and it is probably just as well the beaches are closed as that means I don’t have to enter the Beach Body of the Year 2020 contest…..(be thankful for small mercies….)

All this is depressing. It is a mental adjustment and it is a lot to take in. It is hard on me, harder on Linda who, still recovering from her stroke, has found this latest part of the voyage very difficult to bear, very difficult to share. I did offer to share my feeling tube so she could also share my supper, but that wasn’t well received….

But as with the boat, we made it to shelter. It was still snowing and cold but the fear was gone. All that remained was for another day to cycle around and bring some welcome changes to the situation.

Linda is going back to work part time as of next week. The poor girl probably doesn’t want to but it may well help with her recovery and being the trooper she is, she will try her very best.

to be continued

~~~

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Craig's Story

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