The C: Section Chronicles – My Cancer Adventure

Bob Watt

Hi. I've been lurking here since finishing my throat radiation and chemo treatment about 4 weeks ago and would like to share my experience thus far. I'm not sure if it is allowable or not (mods remove if not please). The following is a diary I have been keeping since I was diagnosed with cancer.

 The C: Section Chronicles – My Cancer Adventure
By
Robert L Watt
Prelude
This adventure began in late November 2016 when, several days after I had my beard trimmed, my daughter, Demelza, pointed at my neck and said “What’s that lump, Dad?”
Several days later I fronted at my GP’s surgery and thus began the “C: Section Chronicles” that I shared on my Facebook page.
Subject: 64 year old male, with suspicious lump on left hand side of the neck.
 
The Adventure Begins
Nov 25 2016
Well that's me done medically for the day: Chest x-ray, a bank of blood tests done, booked in for fine needle aspiration next week. BP at 190/110, lump on neck examined, shortness of breath being looked into... X-ray for shoulder has been booked for whenever, revisit re TURP surgery is booked. Yeah, that's about it. A lot going on health wise, but apart from all that, I'm fine.
 
Nov 30 2016
Fine needle aspiration tomorrow for a growth on the side of my neck. Optimistic that it will be benign.
 
Dec 01 2016
Off to get the needle soon… from what I've read it doesn't sound all that pleasant... exciting perhaps, but pleasant, no...
I have returned from my FNA. 3 samples taken. It was a bit painful, but more so when eating. Now waiting for results, but was told that I need a biopsy, and ultra sound as soon as the results from the FNA are out. Apparently the mass/growth/lump is under the muscle on my neck... Still optimistic about the whole thing, and it will be what it will be.
 
Dec 07 2016
Result is in on the fine needle aspiration I was subjected to last week. There are no abnormal cells... However I have to see an Ear Nose and Throat specialist and undertake some other tests if the lump doesn't go away or if it gets worse.
 
Dec 15 2016
Well the lump on my neck hasn't gone away or shrunk. On Monday I have an appointment with the Ear Nose and Throat specialist to see what is going on. It's been something like 60 years ago since I last saw an ENT specialist... I wonder if I'll get a lollipop?
 
Dec 28 2016?
Met ENT. He did another FNA… These needles are beginning to add up. Bright side, I asked for a lollipop and was given one LOL
 
Jan 06 2017
Scan result is in. Yes there is a lump… Doh! ENT doctor wants to do a further fine needle aspiration under an ultrasound to get samples from the nucleus of the lump. Possibility that the lump is some form of cancer, but won't say yay or nay at this stage. Side effect of the lump is that I have a continual sore throat when swallowing and it affects my left ear as well. Been prescribed some antibiotics to try and relieve the throat.
Doc says the lump has to be removed in the near future, but wants to do the needle test first... Like the army, the medical profession is 'hurry up and wait'.
 
Jan 09 2017
News on the neck lump front or side...
For the past week and a bit I've had a sore throat and earache and an uncomfortable feeling on the side near the lump. Whether the sore throat is caused by the lump, I'm not sure. Day 4 of the antibiotics and there has been very little let up from the discomfort. This Friday I have the ultrasound/needle scan. Next week I have a pre-op for the renewed TURP operation in a fortnight's time. I have a feeling that op won't go ahead until the lump situation is ironed out.
 
Jan 12 2017
Blood test this morning and doctor this afternoon. Tomorrow is ultrasound guided core biopsy... Oh it is grand start to the new year...
 
Jan 13 2017
Ultra sound and fine needle biopsy done. Feeling a bit like a worn out pincushion, with the blood tests and the fine needle aspirations. Still… better to find out now than have something surprise us later. Waiting for results of today's biopsy.
 
Jan 17 2017
Results from the scan and biopsy are inconclusive. Plan is to see a panel of experts next Monday in Dunedin (of all places) who will poke, prod, examine, then go suck on their pipes for an hour or two, play monopoly, or whatever, and decide what happens from that point.
The next day I have the TURP operation, so January 2017 is turning out to be pretty hectic.
 
Jan 23 2017
Prognosis from the specialist is that the lump consist of two cancerous growths. One may require removal and radiation, the other would require chemo.
Before the final analysis is made I have had another batch of fine needle aspirations (5 today), which hopefully will give further indication to the lump cause.
I have to go to Christchurch, in the next two weeks, for a PET scan to help with the diagnosis.
Off to Dunedin to get poked and prodded at the Dunedin hospital ENT... Gonna be a fun packed day... Not!
Was given a thorough neck massage by 5 specialists: 1 oncologist, 1 dental, 1 Speech Therapist, 1 dietician and 1 fine needle assailant... I was expecting a gynecologist and a proctologist, but they were busy
 
Jan 24 2017
Off to hospital for the 'other' thing in an hour so it will be s'long from me for the next 24-48 hours... Looking forward to seeing what Southland Hospital chucks at me in regards to healthy nutritional food LOL
 
Jan 25 2017
TURP OP
Operation yesterday went well. Staff were extra cool. Had KFC for tea last night No problems with the supplied meals (Breakfast and lunch today). Surgery took exactly 10 minutes... the epidural took 5 hours to wear off... Now I have an idea what paralysis feels like...
 
Jan 25 2017
    Further update on the lumpy issue:
Things are moving rapidly that it's leaving us fairly breathless. While I was in hospital yesterday (TURP operation) a lady from Pacific Radiology rang and gave Jeanette the information I needed for the PET/CT scan, next Tuesday. Being flown to Christchurch that morning then after the scan flying back to Dunedin for an open surgical biopsy the following morning.
 
Feb 01 2017
Flew up to Christchurch for the PET scan. It was a long day but did manage to catch up with my sister Fiona who delivered me back to the airport in the afternoon. My wife, Jeanette, drove up to Dunedin so she could be with me for the biopsy tomorrow.
 
Feb 02 2017
Biopsy was done. Throat quite painful. Heading home tomorrow.
 
Feb 02 2017
Update:
News is not great, but not giving into it. I have been diagnosed with Squamous Cell Cancer of the Tonsils which is usually caused by smoking or drinking. Which may have spread to my neck lymph nodes. I have yet to find out what the plan of action is, but it will most like likely be a 5 week course of radiation.

Remember: It isn't over until the fat lady sings, and the fat lady has yet to attend an audition
 
Feb 07 2017
 
A week ago, before the biopsy, I had a little discomfort, but since, swallowing is annoying, earache is persistent, and the place where the breathing tube rubbed on the gum (on the opposite side of the tumor) is bloody painful... even with Bonjella. And, the treatment to recovery hasn't even started... Don't worry, just Bob the Moaner feeling sorry for himself.
 
Interlude: some info

Oh this sounds like it will be a bunch of yapping puppies!

"The science of radiation treatment

Linear Accelerator – An electron gun fires a tiny charged particle (an electron) that travels through a vacuum with an alternating magnetic field around it so the particle gets accelerated to high speed. The speeding particle then hits a target within the machine and its energy is converted to a beam of radiation that comes out and interacts with anything in its path.

The higher the energy, the more deeply the radiation can penetrate (get into) the body. The way a certain type of radiation behaves is important in planning radiation treatments.

During radiation treatment you will be placed so the beam is directed to that part of your body that needs to be treated. The radiation beam passes through and is shaped by a device called a multileaf collimator so that it conforms to the shape of the tumour."
 
Feb 13 2017
Another appointment at the Dunedin ENT. I guess the plan of action will be discussed and the outcomes (if any of the biopsy and PET scan).
 
Feb 13 2017
Just home from Dunedin Hospital. Expected the plan of action, but the clinic was running behind time today, so have to go back either later this week or Monday next. My cancer has been confirmed classified as T1N2B HPV positive. I have a tumour on my tonsil, and one on a lymph node (the lump).
Next visit the clinic will create a mask for me (I'm hoping a Zorro one), and then outline the process and tell me when treatment will start.

The good news is that the treatment has a good chance at being successful, but will take 6 - 8 weeks of radiation.
 
Feb 22 2017
The "C" Plan will be revealed tomorrow!
A change of appointment time means Jeanette and I will be heading north at 6:30 a.m. tomorrow. Hopefully the plan will be discussed and we can let the battle begin. Onwards and upwards!

Feb 23 2017
Was fitted for the radiation mask. It is made of some sort of plastic which is heated in water then stretched over my head and shoulders. My head is resting on a form pillow which is molded to the shape of the back of my head. The whole contraption is clipped onto the table and will keep me firmly in place. Marks are drawn on the mask to give aiming points for the radiation machine.
Today I met the doctor under whose care I'll be. She explained the treatment process to me and the side effects of that treatment also the ramifications should I not take the treatment, but I'll discuss that later after talking with my family - don't worry I am going ahead with the treatment, but as I am writing a journal about this I had to know .
The treatment will take about 6-8 weeks. I have five radiation treatments per week which take about 10-15 minutes. Evidently I have to increase my water intake as loss of muscle mass will be detrimental to the process. My mouth will dry out as the saliva glands will take the brunt of the radiation. I will possibly get mouth ulcers, and get radiation burns on my neck... But hey it's all for a good cause, right.
 
Feb 25 2017
What is 2 years?
There is no question about it. I asked the specialist: What would happen if I chose not to take the treatment? She outlined it in graphic detail. It isn't pretty, in fact it is quite horrifying. Two years of slowly getting worse and worse. The result would be fatal.

The radiation treatment is my chance of survival. 60% survival rate over a 5 year period. Which means if I'm still around in 5 years I will have beaten the odds. The radiation treatment has a tag of 'no pain no gain'.

So what is 2 years? It's a gamble, but I choose to be here in 5 years... 10 years or even 20. I have family to watch over and see them grow, people to meet, places to visit. I want to grow old, to see this adventure called life through.
 
Feb 26 2017
The Dentist – Part 1
Tomorrow morning I have an appointment in Southland Hospital with the dentist.

Apparently before one has radiation treatment one has to have their teeth examined and brought up to scratch. I'm picking that there will be at least one, may be two teeth removed, and whatever fillings I need will be done. Worst case scenario of course I may have to get the lot removed and become a Worzel Gummage or Gummy Bear or something like that.

Radiation can cause tooth decay when the saliva glands stop working, so the plan is to get the teeth looking healthy, then as treatment continues keep the mouth moist. There is a bit more to it than this which I will report later. Whichever way it goes I'll either retain what pearly whites I have, or at least be able to give a broad gummy smile.
 
The Dentist - Part 2
Met up with the dentist this morning. Experienced the weird dental x-ray machine. Prognosis: One tooth to be extracted (Seal Team Six has been called), a piece of bone in my jaw to be removed (this was apparently damaged during the biopsy 3 weeks ago) a couple of fillings and a clean up to make my smile sparkle. Some of this is happening tomorrow at 3 p.m.
 
The Dentist - Part 3
Two teeth removed and the bone in the gum sorted. Because I have a bad gag reflex I was given a sedative.
Three quarters hour later I was woken up and put on a wheelchair and wheeled out of the Clinic.
I vaguely remembered getting out of the wheelchair and into a Lazyboy chair. About an hour later I was woken up to be told that Jeanette had come to collect me but couldn't wake me up. So she went and picked up our son Nikki from work.

5 hours later feeling no pain, have had tea (yoghurt and a drink) and supper of two sandwiches and coffee...

Next appointment in Dunedin next Wednesday where I have a consultation with another oncology specialist.
 
Mar 07 2017
Medical Oncologist
Off to see the medical oncologist tomorrow. Be interesting to see what he/she says or tries to encourage me to take. Radiation start will hopefully be verified as well. In all it is on the road again...
 
Mar 09 2017
It's All On!

Treatment starts on Monday 13th for 6 weeks. Will be staying in Dunedin for the duration but will be coming home in the weekends when possible.
Had a decision to make re chemotherapy in relation to the state of my kidneys. Have decided to go with chemo, as it is a cut down dosage which will be monitored every step of the way. The adventure continues... it just got real
 
Mar 12 2017
So it begins
My wife, Jeanette, and I are off at 6:30 tomorrow morning travelling to Dunedin. So will keep you all updated either by cellphone, texting, PMs, Facebook post or séance...
 
Mar 13 2017
Day One: Had first dose of chemotherapy. This took about three hours as I hadn't taken the pre-meds an hour before (sometimes I need to read instructions.  Next week it will be quicker.
The process is usually about an hour - hour and a half. First a needle line is inserted into a vein (if they can find one, mine are pretty elusive at times). Saline solution is then pumped in, followed by Carboplatin (the chemo drug). After that has been drip fed another lot of saline solution is administered. The chair is very comfortable, and would be a nice addition to the lounge at home...
Then the first shots of radiation. For five days a week for 6 weeks (30 days all up). All good, no side effects from either so far. Still I’m a claustrophobic and the mask didn’t help… I sent my mind into a safe place and rode it out…
 
Mar 14 2017
Day Two: Second shots of radiation. Not so chirpy, so the nurse said, but it was more that I was tired and had a headache from the late night before trying to get my laptop connected to the WiFi at the motel. Shifted into Daffodil House (Cancer support group) in the afternoon after radiation as a vacancy came up. So it was a quick pack in the morning before treatment and then move into the new place. It was quite a relief as although the motel was nice and comfy it was about 4 and a half long blocks from the hospital, whereas Daffodil House is just a block away from the Oncology department, and we can walk through the hospital to get to it.
 
Mar 15 2017
Day Three: Third shots of radiation. No problems. Except sitting up from lying flat for even the short time of 10 - 15 minutes gives me a head rush that makes me disoriented. So I tried rolling on to my side first before sitting up, today. Still got the head rush but not so bad. The nurse took my blood pressure yesterday and thinks it might be my blood pressure lowering too quickly. I have a specialist conference tomorrow so they will discuss that.
Have an early radiation appointment tomorrow at 8:50 then the conference. So far all is good.
 
Watt's in a Name?
A "C Section" is the name usually given to a Caesarean Birth... Okay, you might say, why have I called my journal "The C: Section Chronicles"?
Here goes: The "C" stands for cancer, but also for the shape of the lymph node as seen in the PET scan below. "Section" represents the section of the scan that shows the cancer.

Now, my brother Chris asked me what I have named the cancer; "The Big C"? "Little C"? Up until then I was not ready to call it anything except a bloody nuisance. SO after careful consideration I was going to call it "Charlie", but a guy I knew at school was called Charlie and he died of cancer, so I thought that was a bit inappropriate... So seeing one of my earlier posts (on Facebook – a photo of a fence post) is called "Charlene", I have named the cancer "Charlize"... She's a pain in the neck (well not too much so far), and the sooner she is out of my life the better... So there it is.
 
Truebeam Radiation Machine – some info

The Varian Truebeam Linear Accelerator (Linac) machine was purchased and installed in Dunedin Hospital in 2013 at a cost of around $6.3 million to meet the increasing demand for cancer treatment in the region, boosting capacity by 20%.

The system includes X-ray and CT-scan imaging techniques, known as image-guided radiotherapy, to identify and locate the tumor before and during treatment.

The Linac machine delivers a high-energy dose of targeted X-rays, which destroy cancer cells while sparing surrounding normal tissue.

Installing the machine had required the extensive modification of a protective ''bunker'' to shield staff and patients from its high-energy output.
 
Mar 16 2017
Day 4
Radiation at 10 to 9; 10 past 9 had the conference. Specialists are happy that I am following their instructions. Nurse was pleased that I was chirpy again... Must be birdseed in my breakfast.
 
Mar 17 2017
 
Shore Leave: Week One
At home for the weekend. Feeling tired but otherwise okay. Bit of a tickle in the throat which apparently can get worse. Still able to taste food which is a good thing. Drinking litres of water, which is necessary to keep hydrated, and to flush out the dead cancer cells as the radiation works. So far being a radiated mutant is going well. It’s nice to sleep in own bed.
 
Mar 19 2017
On the Road Again
Off to Dunedin in the morning for week two of the treatment. 5 weeks to go: 5 lots of chemo, 25 sessions of radiation and we'll be as good as new.
 
Mar 21 2017
Attitude is Every-thing
Since we have been in Dunedin I have been overwhelmed by the positive attitude the people who are sharing similar cancer adventures as ours. True, there are people who are in a worse way than I am, but I am impressed that all of those I have met are positive and willing to share their experiences. Some people are here fighting repeat onslaughts of the dreaded 'C'.
I have heard people refer us all as The Club, and the oncology clinic as The Office.
There are people here from all walks of life, young and old.
I am in awe of the optimism among the people I have met. No-one sits around moping or moaning and groaning. I am glad the atmosphere both here at Daffodil House and at the Oncology department are so positive.

Day Six went well. I feel great, and so super glad Jeanette is here supporting me .

Thanks too to all of your support. It means the world to me. Love you all.
 
Mar 22 2017
 
Doctor 'Dickings'
We have met a couple here in the hospital, the husband is undergoing radiation treatment for Esophageal cancer that has been largely misdiagnosed over the past two years.

I have been fortunate that my new doctor was quick on the ball in sending me for tests immediately to Southland Hospital. Unfortunately, the man above is now having treatment to help him through what will be his last two months of this life.

I think GP's should think outside the square when it comes to people's health and consider the worse and stop 'dicking' around.

I wonder if my past two doctors would have acted as quickly as Bruce did. I know it took 4-5 years before one of them realised my urinary problem wasn't going to be treated with pills... Even so that took surgery on my knee to bring the fact my bladder could hold 3+ litres and that I wasn't able to pass fluid as I should. This has attributed, along with medication, to my chronic kidney disease.

I realise doctors are loath to send patients to hospital specialists because of the costs, but we need more Doctor "Action"s and less Doctor "Dicking"s.
 
Today was a Double Dose Day because of a local public holiday
Not at all apprehensive with having two radiation treatments today. All went smoothly, and was actually the first time that I'd had a look around the treatment room .
After 8 radiation treatments so far I still have a good sense of taste, able to produce saliva. Drinking a couple of litres of water a day supplemented with coffee, almond milk, and anything else I can drink.
We walked a lot today. First we visited the museum and wandered around there for an hour or so. After this afternoon's treatment we went the opposite direction to Countdown which is about three blocks away. One cannot say we aren't getting enough exercise.
 
Mar 23 2017
Precautions and Good News

At 5 a.m. this morning I was woken by a strong pain in the center of my chest which slowly relieved itself over half an hour.

Radiation went well this morning and was followed by the weekly clinic meeting with the specialist team. I let them know about my chest discomfort which prompted the team to send me to the ED (ER) where they gave me a blood test, ECG, X-ray and 3 and a half hour's monitoring. All tests came back negative. So all good and the team not taking any chances.

Good news is, my main oncologist was pleased that the chemo/radiation is working and told me that my neck lymph node has shrunken at least by a third in size... makes the itchy throat worth it, I reckon... But special thanks goes to family and friends whose support is very much cherished. Thank you guys... This doesn't mean I'll be home any sooner though  ... but all is good
 
Mar 24 2017
Shore Leave: Week Two

Had an early radiation appointment this morning, then it was off to the blood clinic for the weekly test to make sure my kidney levels aren't being affected by the chemo. This has to be done prior to each Monday chemo session.
Had an enjoyable drive home. I drove and Jeanette took photos of stuff she wanted to photograph.
Dull side of this is that staying in a boarding house (of sorts) is that it is inevitable someone will have a cold. Jeanette caught it first, and now I have it, and it is irritating my throat somewhat, but hey I've had a sore throat before so will take it as part and parcel of the healing process.
 
Mar 25 2017
Taste is Everything!
Lousy night last night. Woke every few minutes with an ultra-dry mouth and sore throat. Coughed and spluttered quite a bit.
Today has been loss of taste day. Whether this is because of the radiation or an offshoot of the cold one can only speculate. However coffee, water, sausages, kumera, other food, all tastes exactly the same.
So it is eating for nutrition and to keep the body mass up for now until the taste buds kick in again later. Evidently 3 out of 4 taste buds will be destroyed by the radiation and the remaining one will have to learn to compensate over time. The price to pay for being cancer free, I guess.

Still I have to shake this cold as I do not want anything to delay or setback the treatment. With still 4 weeks of radiation and chemo to go we will be laying pretty low in Dunedin for the next 3 weekends.
 
Mar 26 2017
Four Weeks to go
That is 20 radiation sessions and 4 Chemo doses.
Coming down with a cold has not been the best, both for my immune system or being good company for Jeanette as she drove back to Dunedin. It rained almost the whole time and I tried to sleep. Mazda Demio's are not the most comfortable mobile beds I can tell you.
I was in bed in our room by 4:30 and slept on and off during the night waking with a hacking cough or needing the potty. Still I think I'm shaking this cold. And I need to in order to get through the next four weeks.
Dosed up on codeine and paracetamol this morning. Chemo is at 11:30 so hopefully I'll be feeling a lot better by then. Radiation is at 1:40 and I don't want to be gasping and coughing with the mask on.
 
Mar 27 2017
Good Care is a Bonus
We fronted up for Chemo this morning, and l let them know that I had a cold. Several hours later and a blood test to ensure I wasn't harbouring a terrorist virus, I had chemo around 2:15 which finished after 3 p.m.
This put us at least an hour and a half behind schedule for radiation.
At least I managed to hold back on any coughs while under the mask. Have to drink heaps of water, but that is a given under the present circumstances.
 
Mar 29 2017
Reasons Why
By now most of you know of the adventure I'm undergoing. This past four months has been a learning curve I'd rather not be experiencing, yet at the same time glad I've had the privilege to undergo it and share, if that makes sense.

No one can explain the reasons why some are susceptible to cancer and others are not. Somebody asked: "Don't you wish it was somebody else?" My answer is "No. I would not wish cancer upon anybody else not even my worst enemy, if I had one. In fact the worst I'd wish upon anyone, even the person that stole the parts off my truck was that karma bites him in the butt one day and he finds himself face first in a pile of fresh doggie doo..."

A year ago a singer who I like, Joey Feek, died of cervical cancer after a horrendous but lovely 2 year battle, and I thought wow, I hope that (cancer) never happens to me or anyone I know. Yet here I am and the funny thing is that I have been okay with it even though that a year ago I had cancer but didn't know.

The chronicles are notes for a book of our adventure. I pray that somehow I can share hope with others.
 
On Going Cold Bug

Seems this cold doesn't want to let up. Had a tense few minutes this morning with a resurgence of coughing, and choking on phlegm that I couldn't get rid of. The back of my throat is raw in two areas, the radiated tonsil part and the part the cold has attacked.

This has made swallowing difficult with any coarse food. Wednesday morning is scone time here at Daffodil House. The scones are lovely but the outside was harder today for some reason and a 10 minute break took about half an hour... just for one scone!

I had seafood chowder for tea (the lumpy mussels portions took a bit of forcing down). For supper I had one of those liquid breakfasts which was nice, even though I'm only getting a bit of taste from anything. A nectarine was tasteless and the juice scored a hit on my throat...

Ah well half way mark is reached on Friday at 8:10 a.m. so it will all be uphill from here... or is it downhill???? They say things get worse before it will get better... radiation wise that is.
 
Mar 30 2017
Week Three Clinic

I have lost 3 kilos since starting the treatment. The oncologist isn't too happy with that, but understands with the cold I've had. Muscle mass loss is a no-no while undergoing treatment.

Ulcers have formed at the back of my throat which is making swallowing painful and difficult. My diet has moved to bland soft food and I've been given some Xylocaine to numb the throat, BEFORE eating.

Next week the oncologist will probably have me on morphine if the pain doesn't subside. I'm also on an antihistamine to calm the sniffles and cold.

Still happy

The good news is that three weeks ago the lymph node tumor was 7 x 6 cms, this week it measured 4 x 2 cms which by my calculations the tumor has been reduced by half... It doesn't mean I get time off and an early release as the tumor near the tonsil still has to be dealt with.
 
Mar 31 2017
Milestones and Complications

15 radiation sessions down 15 to go. Half way mark, but all is not so well atm. The cough is still persistent even with taking antihistamine to alleviate it. I'm finding it difficult to even swallow water. I started the liquid diet today, yuck! Gagging a lot when coughing and cannot loosen any phlegm. Sleeping on and off during the day and not motivated. Hell, I thought this wouldn't kick in for at least another week. Generally feeling like crap but still have a smile on the dial.
 
April 03 2017
Week 4 Begins!

I spent 30 hours in Dunedin Hospital as they attempted to alleviate my coughing problem. Another chest x-ray, blood tests, blood pressure etc. which all came back around normal.
My oncologist came in on Sunday morning and set me up with a slow dose pain-killer along with a pain-killer on 2 hour demand. Along with an antibiotic; a concoction called Pink Lady; an anti-thrush medicine, a stool softener, and mouth washes...

I've coughed up a ton of yucky stuff and when I do cough it’s broken without causing me to gag.

With all this I've had the best day I've had for over a week. I even had toasted cheese sandwiches for afternoon tea and tea. Swallowing is greatly improved for now.
 
April 04 2017
Now Hair Less!

Oh no! My hair is falling out! Well just the whiskers caused by radiation, not chemo... This is gonna look bloody funny when I start looking like a scraggly alley cat that just came out of a fight with half a dozen toms.
 
“And they took my voice from me”

"How the Koala Bear lost his voice. In the story the foolish Koala has a bet with the moon and loses, so the moon took away his voice, when Maramara found out he punished the moon by making it travel across the sky every night and fading away until she becomes full again"

There is a 50/50 chance that radiation has caused some temporary damage to my vocal chords, or I have got laryngitis caused by the cold or both. Any which way I'll be talking (yeah right) to the speech therapist on Thursday. In the meantime I'm just Croaky Bob LOL
 
April 05 2017
My New Room Mate

Introducing Airvo 2. Humidifier that runs all night giving me a continuous blast of warm steam through nasal tubes. This is to stop me from choking on thickened mucous while sleeping. It worked last night so let's see if I can get two out of two tonight.
 
April 10 2017
Only 9 more treatments to go.
Throat feels itchy but I can live with that. Jeanette and I shared a subway today. It was good.
My two older sisters, Andrea and Marilyn, are here in Dunedin. We had afternoon tea with them then visited at their motel after tea. We will be having a cuppa with them tomorrow at the Settler's Museum (Jeanette and I did a quick visit there yesterday to take some pics for our daughter, Demelza).
I'm watching a movie atm. Not rested today so hopefully I'll sleep right through tonight (fingers crossed).
 
April 13 2017
Apologies

Sorry for the lack of updates. Things are pretty intense at the moment, having had two treatments yesterday, and news of an ex-boss being diagnosed with brain cancer, more on this later.
As for myself. Very tired with a semi constant sore throat even with an increase of morphine and other pain relief. Will update when my brain is clearer over the weekend.

Even so, only 1 chemo treatment and 5 more radiations and we'll be back home.
 
Apr 16 2017
Silver linings, silver bullets and underlying rust.

Well they say you can't cure stupid... I guess we'll see after this treatment ends.
Tomorrow marks the last week of treatment and with 5 radiation to go, plus 1 chemo on Tuesday I'm optimistic that things will end up just fine and dandy. Radiation burn is treated regularly with Aqueous Cream and a silk scarf (trendy) and while uncomfortable I think I'm ahead of it being really annoying.
The last couple of days have been tough, yes, Jeanette, I'll admit I was down, (sleeping almost continuously attested to that).
Sometimes you think you have it rough, but there is always someone else who's been dealt a crappy hand. Take my ex-boss, for example. Her daughter died in 2015, her husband passed away a year later, then 12 months on my boss is diagnosed with brain cancer and all the doctors can do is make her comfortable. Damned f***** damn! She is all her 3 grandchildren have got.

One tries not to take on board stuff especially when you are dealing with your own crap, but human nature is human nature I guess and empathy is one of the strongest emotions you can have...

So week six has arrived. In five days’ time we'll be heading south, wiser, stronger, and cured. In the meantime the sunburn intensifies, the throat ulcers annoy the crap out of me, and at nights one fights the breathing apparatus…
 
April 20 2017
Treatment 29
Second last day of treatment. We will not be going home tomorrow.
In the afternoon I was admitted into the oncology ward where I’ll spend at least a week to a fortnight for initial recovery. I’m not eating and there is talk of a nasogastric tube (NGT) into my gut so they can get some nourishment into me. I'm not a happy puppy.
First attempt by the oncology nurse to put in the NGT failed and I was sent to the ENT clinic to get one inserted. Line fed Ensure that evening.
Pain relief dosage has been increased to 30mg morphine slow release twice a day
 
April 21 2017
Treatment 30 (Last Day)
Relieved that the process is over. I’ve been pretty stable since shaking the cold, but the doctors tell me I have a fever and the onset of an infection in my right lung. Feeling miserable.
 
April 22 2017
Today is pretty much a blur. Jeanette said I was out of it most of the day. Given anti-biotic IV augmentin to fight the chest infection (pneumonia).
That evening I went into a narcotic overdose where the morphine was being stored in my kidneys. Doctors brought me out of this state using naloxone.

The following few hours were a state of confusion and bewilderment… and pain.
 
April 24 2017
During the weekend I evidently pulled out the NGT while sleeping and another attempt was made to insert another. That was painful and a nurse commented that it looked like it was torture and she removed it.
Sent to ENT for another tube to be inserted. It was successful, but somewhere along the line I fell asleep only to awake coughing and gagging and a meter of tubing in my mouth. I refused to have another tube put in. That meant the hard road: consuming all fluids and Ensure by mouth.

To be continued
 

CivilMatt

welcome

Bob,

Welcome to the H&N forum, sorry that you are here, but it looks like you are KING of the posts.

I am also glad to hear I have beaten the odds (post 5 years+) and chances are you will too.  Fat lady singing not approved of around here.  I am also happy to see you chose not to let the cancer run its course (very ugly).

You mention virtually all the side effects available both mental and physical and like most you worked the problems.  It took forever to get to April 21^st, but I knew it was coming.  Hey, what kind of dream makes you pull out your NGT?

Now, keep drinking water and swallowing. Your weight did not seem too bad, but make sure you get plenty of nutrition.

Best of luck.

Matt

Bob Watt

Thank you

Matt, for the warm welcome. Yes this is one forum I'd prefer not to be a member of, but here we are , and it is good to be amongst like minded people.

I still have no idea how I pulled the first NGT out. As for the second, I awoke, spewing and the tube flicking around in my mouth. The doctor said they had never known anybody to do that. All up I've lost about 15 kgs. I can afford to lose some more, but my once chubby legs are like chicken legs now .

frokker68

Hi Bob,

Hi Bob,

I am starting week two of my treatment tomorrow.  Your story timeline of side effects seem to be how mine are playing out now.  Your attitude is certainly an inspiration to me. For that, thank you.

Keith

Bob Watt

frokker68 said:

Hi Bob,

Hi Bob,

I am starting week two of my treatment tomorrow.  Your story timeline of side effects seem to be how mine are playing out now.  Your attitude is certainly an inspiration to me. For that, thank you.

Keith

Best of luck

Keith, with your treatment.

Bob Watt

Continued...

April 25 – April 30 2017

 

The following days were a slow progression of being able to drink more and swallow at least some semi solid food.

Because I’m on an antibiotic for pneumonia I have developed a severe case of diarrhea. Not nice. Since my TURP operation I have to self-catheterize and the strain of having to do that alongside trying to cough up phlegm, and the diarrhea, I’m feeling pretty miserable… Where’s the happy face now, Bob?

I’m on an IV drip for the antibiotic, cannot swallow pills so my blood pressure tablet and antibiotic for my urinary system have to be crushed and swallowed with yoghurt or any other thing I can possibly swallow.

 

Body is weak but the mind is determined to get through this recovery period. Damaged area of the throat is creating a lot of mucous which is a total **** at getting rid of it. Eating only soft food and supplements atm. Mood is cheerful, but when the gagging begins...

 

Swallowing is very painful. Although my mouth is clear of ulcers, my doctor says my throat is like a savage jungle. I’m on morphine and paracetemol. Breathing normally is fine, but swallowing makes me cringe really bad. Jeanette says it’s like watching a turtle retreating into its shell.

 

I find I hate pureed food, which is what the hospital is trying to get me to eat, so I’m not sure what lies ahead when I have to put stuff through a food mixer. I have a tendency to look at anything I have to eat with deep trepidation. Mostly I have to force myself to even drink water, or Ensure. My mouth is dry. There is a horrible taste in my mouth, and I find myself sleeping more through the day.

I find I am very emotional when the word home is spoken, and during several coughing and spuking fits I admit I have broken down.

 

The hospital staff is really good. I get daily visits from the oncology staff whether it is the dietician or physiotherapist etc… they are all trying to do what’s best for me.

Slowly my spirits are lifting. Visits from family have brightened me up somewhat, and now I’m determined to go home.

 

May 01 2017

I’ve been told I can go home. Well not home itself, but I’m being discharged and have to stay in Dunedin for another week. Pretty despondent, but Jeanette needs me as she has been laid low with a bout of vertigo.

 

May 02 – May 03 2017

Jeanette is recovering. We are staying in a motel as the room in Daffodil House was no longer available as we had stayed there longer than earlier anticipated. Still, the motel is quiet and warm. I’m still having trouble getting any food in. I have a tendency to sit and stare at what I have; Ensure, jelly, etc and one part of my mind is saying eat, yet the other part is totally rejecting even the thought.

May 04 2017

 

We have a Head and Neck Clinic today. To pre-empt any decision we have signed out of the motel and loaded up the car… we are going home!

Clinic was good. My weight loss is a concern although I’ve lost 14-15 kg since this ordeal started, they are happy with my progress.

My pain relief has been increased.

 

Two and a half hours later we pull up outside home. It’s not quite 8 weeks but it feels good to be home.

 

May 08 2017

Evidently week 2 post radiation is a pivotal point in the recovery stage where the radiation stops "cooking". "The acute stage" my oncologist said... or may be that I was in a "cute stage"... who knows, my hearing isn't that great these days.

So any way here's to week 3 post radiation, onward and upwards.

 

May 13 2017

Recovery Week 3:

It’s been a funny sort of week. Not funny ha ha, but funny in that not two days were the same. This is a good thing I guess... But after a week of sleeping, eating and spuking, one would think that the healing process should be very much under way.

I have to admit, a week ago I felt like there was no end in sight. Today, even though I didn't keep my breakfast down, I do feel quite a bit better. Even the pain in the throat has subsided quite a bit.

 

I still feel lethargic, and have no desire to do much. Even so I believe that will pass in due course, At least I'm sleeping longer and don't need the 'spuke' container as much... So there is a light at the end of the tunnel...

 

May 16 2017

Each day is getting easier. I have little use for the 'spuke' bucket now, and throat soreness is limited to one spot and only when I swallow. I'm sleeping pretty well but annoyed that the dry mouth horrors wake me. I'm still on 5 packets of Ensure a day and limited to soft food like soup, jelly and ice-cream, still the blessing is that the ordeal is practically over and there's a whole lotta living to be done.

 

May 22 2017

Still reliant on pain relief, but I do believe the pain in the throat is getting better each day. The dry mouth is a curse, but I’m hopeful that it will ease over the coming weeks. I’m managing some other foods, likes of cereal and poached eggs. Ensure is still the staple, but with some milkshake flavourings I have a variation in taste (yes I have some taste).

caregiver wife

Welcome

Bob,

Sorry you are here.  I found your daily blog informative, inspiring, and sometimes humorous.  

We are currently experimenting with homemade custard.  One of our new mantras: try everything!

Best wishes and continued success to you and Jeanette!

Crystal

Bob Watt

caregiver wife said:

Welcome

Bob,

Sorry you are here.  I found your daily blog informative, inspiring, and sometimes humorous.  

We are currently experimenting with homemade custard.  One of our new mantras: try everything!

Best wishes and continued success to you and Jeanette!

Crystal

Thank you

Crystal.

I've moved onto poached eggs and spaghetti, as well as chopped up sausage with lashings of gravy. I still look at other solid food with trepidation as if it a choking experience in waiting . Still, things are improving on a daily basis. The dry mouth is my biggest curse at the moment. But the motto is Onwards and Upwards... the alternative would be a lot worse.

butch17

Bob Watt said:

Thank you

Crystal.

I've moved onto poached eggs and spaghetti, as well as chopped up sausage with lashings of gravy. I still look at other solid food with trepidation as if it a choking experience in waiting . Still, things are improving on a daily basis. The dry mouth is my biggest curse at the moment. But the motto is Onwards and Upwards... the alternative would be a lot worse.

Hi Bob, Please keep blogging,

Hi Bob, Please keep blogging, I am going through the same thing as you and really have enjoyed your blogs and found them helpful. I had my last radiation treatment on May 5, 1917 and am still on the stomach plug feeding regimen. I don't have my taste buds back yet and the throat has improved, like yours, but it has a ways to go before I can handle swallowing things. I am a 74yr old male and look forward to seeing your next blog.

butch17

Bob Watt said:

Thank you

Crystal.

I've moved onto poached eggs and spaghetti, as well as chopped up sausage with lashings of gravy. I still look at other solid food with trepidation as if it a choking experience in waiting . Still, things are improving on a daily basis. The dry mouth is my biggest curse at the moment. But the motto is Onwards and Upwards... the alternative would be a lot worse.

What's the latest?

It's been about a week since your last blog,

Any changes happening?

Bob Watt

Hi butch17

I had posted this elsewhere, but in the interest of  keeping the diary together:

May 25 2017

Milestone
Week 6 post radiation. Tried solid food today, a small meat ball. Then at teatime a carrot and sausage with gravy. Hoping this is the beginning of a return to some kind of normalcy.

May 29 2017

I've since moved onto poached eggs and spaghetti, as well as chopped up sausage with lashings of gravy. I still look at other solid food with trepidation as if it is a choking experience in waiting . Still, things are improving on a daily basis. The dry mouth is my biggest curse at the moment. But the motto is "Onwards and Upwards"... the alternative would be a lot worse.

June 04 2017

Part of the post radiation treatment involves the restoration of saliva glands that were damaged during the treatment.
Something that plagued me since treatment finished on 21 April has been dry mouth. During the day it isn't so bad because a quick sip of water and you get a few minutes reprieve, and other sip and so on. At night, however it is a different story. Not so bad if you breathe through your nose while sleeping, but I'm a mouth open sleeper.
One either conforms to the inevitable and just sleeps through with dry mouth and puts up with the discomfort, or one wakes ever so many minutes, sips water, and tries to keep one's mouth shut and go back to sleep.
Of course the latter has a tendency to give you a broken sleep and the consequences of needing to nap during the day. The side effect of this is that each time I awoke to take a sip, I also woke Jeanette. Not fair that two of us get broken sleep.
In steps "Artificial Saliva Solution" that my doctor prescribed. It has a bit of a taste at first, but a teaspoon of this thickish solution swished around the mouth has given me three night's sleep in a row and I've had no desire to nap during the day.
I'd still like to know how long it takes before the sore part of my throat (where the tumour was) takes to heal, as it is the only part annoying me, oh and the associated earache when I swallow.

 

June 08 2017

Getting more regular sleep now thanks to the artificial saliva, which incidentally lasts only as long as you have your mouth shut, or so it seems. So, when I wake up with cotton mouth, instead of reaching out for a sip of water I just go back to sleep. Generally this works as I wake refreshed.

The sore throat is subsiding somewhat, but is painful enough to let me know that healing is taking its time.

I have a visit to the oncologist next Tuesday. That will be interesting to see what she thinks of my progress or lack therein.

The dietician rang the other day and she is pleased with how things are going. I'm still supping Ensure (with milkshake flavouring), along with cereal (weetbix - wheaties?) for breakfast, soup at lunchtime and small helpings of what ever the family is having for tea. I've tried chicken and steak, but without gravy the small bits just float around the mouth, get stuck in my teeth... not nice.

I'm drinking coffee now and enjoying it as the taste buds are back to normal.

And for some reason my gout has returned

butch17

Thanks for the update Bob

Where do I go to keep up with your posts, other than here? I like your sense of humor and positive outlook.

I am happy to hear that your tastebuds are back, the only taste returned for me so far is sweets and it's been since May 5 was my last radiation and chemo stopped about a month before that. I wonder if the fact that I am still feeding through the stomach tube has any affect on that?

butch17

I like the sound of the Artificial Saliva Solution

Is this something that I can get from my doctor?

Bob Watt

butch17 said:

Thanks for the update Bob

Where do I go to keep up with your posts, other than here? I like your sense of humor and positive outlook.

I am happy to hear that your tastebuds are back, the only taste returned for me so far is sweets and it's been since May 5 was my last radiation and chemo stopped about a month before that. I wonder if the fact that I am still feeding through the stomach tube has any affect on that?

My Diary

is on my Facebook page, along with other interests and various things I look at

Bob Watt

butch17 said:

I like the sound of the Artificial Saliva Solution

Is this something that I can get from my doctor?

Artificial Saliva Solution

was prescribed by my doctor. I have found it effective until I fall  asleep, where my mouth drops open and the dryness creeps back in. Generally it works okay but I have found the dryness wakes me back up. At that point I either have a sip of water, or just go back to sleep.

Bob Watt

Now this is weird.

June 11 2017

While I still have trouble eating chicken, peas and some other foods I was able to down cracker biscuits with butter and cheese, and 3/4 dozen raw oysters (thank you Sister Andrea) with very little trouble. Throat is still sore and mouth dries quicker than I'd like, but at least trying different foods must be a plus. Tuesday 13th is weigh in day to see how much I've lost...

johnsonbl

I've enjoyed your accounting of your experience...

You're sense of humor is great!  Helps for sure.  I have a very similar story to yours...we even share our last radiation date, 4/21/17.

I noticed my left side lump on 12/12 after showering.  I work at an academic medical center so was fortunate to be whisked through the system very quickly.  I had labs, a CT, an FNA and went under the knife on 1/9/17 for a left sided neck disection, tonsillectomy and biopsy of the base of my tongue.  My cancer was confirmed that day as originating in the base of my tongue.  I learned later that week that I was HPV+ as well and was stage IV (t1n2bm0).  HPV was good news since it meant that it is very, very curable...  Later learned that they redid the staging logic specifically for HPV disease and I am now classified as a stage I.  5 year survival is at 94%.

Just under a month later I had my second procedure to remove the tumor from the base of my tongue (my lingual tonsil).  On 3/13 I had the first of my 30 radiation treatments.  I have been extremely fortunate...I had little trouble until the last week of treatments when I started to get some blistering in my throat and mouth.  I didn't develop mucositis until about 2 weeks post treatment...  Mucositis is the real deal, it's super painful and I don't consider myself as having a bad case of it at all.  Can't imagine what an average case feels like...certainly not a bad case.  I've never had to limit my diet or anything really and was nowhere close to requiring any sort of feeding support.  Not that I don't have some discomfort...but what should we expect being less than 2 months out?

I do tend to lean pretty heavily on fluids when I eat though...much to the chagrin of my speech therapist who is challenging me to eat without taking a drink everytime.  Working on that.  

Taste buds started coming back about 3 weeks post which was so great...I was getting pretty fed up with the whole damn thing.  It's amazing how powerful the sense of taste is and how it's prolonged absence can mess with you.  I'm probably at about 80% of where I think I started...and I know it will only improve over the next year.

I find it terribly fascinating how very different each and every persons experience ends up being.  I think it's great that you're keeping track of your thoughts in this fashion.  I wish I would have done that...there were some times early on where I was pretty messed up...boy did I cry, a lot, during the months of December and January.  Just for no reason it would hit me.  Most often when I was hanging with my little kids...  Doesn't take a psychiatrist to figure out how much worry I was holding in.

However, I'm back in the swing of things...busy, busy...none of this is going to slow me down.  My wife swore at me plenty of times because I would brush off her assistance...  I didn't need to be waited on.  I was going to beat it, end of story.  Thank goodness she was there.  I wouldn't have done as well without her.

And now we wait...for the scans.  And every sore throat or pinch or ache...we wonder and worry.  It seems like everyday I wake up I feel different...some days really good.  The next day, for no rhyme or reason, kinda crappy.  I think it's just the healing...  Likely won't get to the new normal for a few months...maybe a year.  Who knows.

Anyway, glad I stumbled across your post.  I'll keep an eye on it and follow your progress!!!

 

Brandon

Bob Watt

The new normal

seems like a distant thing, eh Brandon.

Thank you for sharing your experience I too wonder about when the new normal will kick in. I still don't have a lot of energy to do very much, nor the inclination. A lot of this is probably due to weight loss.

Yes, some days I wake up feeling great and others like as you said feeling like crap. For example, yesterday my throat was sore and yet today it feels not so bad. The healing process will do its own thing in its own time I guess.  In the meantime it's take the pain meds, eat what you can, drink copious amounts of water and look forward to the scan that says 'no evidence of disease'. I'm confident that even as I write I am now a cancer survivor .

Bob Watt

Oncologist Check up

12 June 2017

Tomorrow afternoon I have my first post Dunedin oncology check up with Dr Kelly at Southland Hospital. Be interesting to see what she has to say and when my PET scan will take place.

On the eating front, I had a small dish of chicken, potato, pumpkin, kumara and gravy for tea. Icecream, jelly, and instant pudding earlier on, along with a couple of cracker biscuits, some potato crisps.

I had my usual weetbix for breakfast. I am able to drink warm coffee no problem. So things are looking up. Mind you I've lost a bit of weight so we'll see what the doctor says about that.

Bob Watt

Checkup Results

Good news, my oncolgist said from her observations and feeling my neck that there is no indication of the tumours. She said as far as she was concerned I am tumour free in the neck area. She also told me I wouldn't require the PET scan for two years which is cool.

She was very pleased with my eating progress and advised me that I can go off the pain killers and just use Panadol if necessary. The dry mouth may eventually fix itself over time. And my weight is the same as it was when I was last weighed at clinic 6 weeks ago. So all is good... but this is not the last entry to the chronicles

Bob Watt

Progress is slow, but it is still progress

June 18 2017

The C: Section Chronicles - Say Cheese
Today a milestone was passed in the eating department: I had a toasted cheese sandwich and all I can say about that is that it was totally scrummy!

21 June 2017

The C: Section Chronicles - Food adventures
Today I'm experiencing mussels, so far I've managed 3 and the pottle is still tempting. I had 2 chicken satays the other night and enjoyed them both. Fish and chips will hopefully be on the menu..

The C: Section Chronicles - Phantom Pains
According to my oncologist the pain I'm experiencing in my throat is probably a phantom pain... Say what? When I wake during the night and my mouth is so dry you could imagine a bunch of Bedouin tribesmen leading their camels across my parched tongue ... and when I swallow my throat hurts like hell.. how the feck is that a phantom pain???

26 June 2017

The C: Section Chronicles - Further food adventures
Yesterday I completed a meal sized plate of chicken thigh and leg, mixed veges, pumpkin and potato. The dietician has given me 3-4 months to wean myself off the liquid food supplement Ensure, which I have a tin every two days (litre a day). I have to admit I was apprehensive a week or so ago about ever eating normal food properly. However I also had 3 sushi thingees. On Saturday I had some more mussels, and Friday night had a couple of fish bites and chips...