Cancer knows no bounds. I receive messages from people all over this earth. Rob writes from Sydney, Australia and shares his story... Thanks Rob, and good luck to you!
- Barry
My Story
(17th April 2000)
About
me
I am a 50 year old male resident of one of Sydney’s (Australia) northern beaches suburbs, collectively known as Manly which is 12km from the city centre. I have always been physically fit and have coached and refereed Rugby Union most of my life. I have been a regular drinker of both beer and wine in what would be described as ‘moderate’ amounts, i.e. a few drinks each night. I almost never drink spirits. My diet covers all foods. I ceased smoking cigarettes about 28 years ago in 1972 and have not been exposed to large amounts of second hand smoke. I have worked in a smoke free office with the Organising Committee for the Olympic Games during the last four years and other smoke free offices prior to that. I’m 1.78m tall (about 5’11”) and 82kg (about 13 stone or 156lb). I live with my wife of 27 years, Julie and my three adult children (James 24, Nick 22, and Libby 18) who have been fantastic throughout the last four months.
General Notes
The story below is the story of my personal journey. Please note that I am not a medical or health professional, and do not guarantee the accuracy of any information. I strongly suggest that you share any information or ideas you get here, with your physicians.
I have chosen not to name any of the multitude of Doctors, Radiation Therapists and nurses who have helped me in this process. There are many reasons for this, but primarily, I have not sought their approval to name them, and to gain that approval I would assume that they would need to validate each aspect within this document. As one approval was gained, after alterations, all previous approvals would need to be re-sought. I have therefore kept it as ‘my story’.
The professional level of care I have received has been fantastic. I have had almost no involvement with the medical industry in the past and have been very impressed. I really have met the most wonderful dedicated people. My sincere thanks to each and everyone of them.
My apologies for the changes in tense during this dialogue. This is reflective of when I recorded some thoughts and I have not corrected it, to allow you the reader to be aware of when it was written.
Pre diagnosis (NYE to 29th February)
I don’t remember the precise date, but about New Years Eve, I noticed a small lump on the right hand side of my neck about 4cm below my ear. With the celebrations in full swing, I thought this may have been a warning that I was over doing it a bit even though I had been quite well behaved. During the first two weeks of the new millennium the lump continued to grow and as I was very busy with my work until the 22nd January. I visited by local GP who also is a good friend and he prescribed two courses of antibiotics, with a request to return after that if the lump had not disappeared. I returned to see him again on the 31st January and he voiced the first concerns that I had heard. He requested that I visit a General Surgeon and an appointment was made for later that day. In addition, a CT scan (with contrast - a substance that shows more detail in the scan that is introduced by injection - no pain) of my lungs and neck area. The surgeon also required a fine needle biopsy (FNB) of my now larger lump. This procedure, which is a bit unnerving, has virtually no discomfort involved.
The results of the CT scan and FNB were inconclusive. The lump was assumed to be a lymph node but there was some indication that is was a bronchial cyst (which would have been benign). The best news was that no cancer had been found. As the lump was beginning to distort my corotid artery and to allow additional tests to be run on it, it had to be removed and this was scheduled for Thursday 24th February. The operation was simple enough (for me), I went to sleep and woke up without the lump. My neck was a bit sore, but not so sore that I missed a Rugby tournament 100km south that weekend. (The scar had been placed in a natural fold of my neck and was healing fast. Four weeks later it was only visible if my neck was in just the right light.)
I arranged my second visit to the Surgeon on Tuesday (29th) to have him check the bandage, I did not expect the pathology results until Thursday. He did not waste anytime in advising me that Squamous Cell Carcinoma (SCC) had been found in the outer layers of the lymph node. The shock of this was considerable and I took a moment to gather my wits. I seem to remember that my first question was “What do we need to do to fix this thing up?”. I was advised that SCC will always have a primary (where the cancer came from) of either lung, skin or throat cancer. The next challenge was to find this primary. Once found, the three alternatives for this type of cancer seem to come down to one or more of - surgery, radiation therapy and / or Chemo. Other than to remove the stitches later that week, I have no additional professional contact with the General Surgeon, other than to keep him informed of my progress and thank him for the great needle work. He referred me to an Oncologist who would manage the rest of the diagnosis and treatment.
Diagnosis to beginning of treatment (1st March to 16th April 2000)
Side
note - I should mention that all results from each specialist were always copied
to my GP who was very supportive. It is as if, to some limited extent, the
specialists manage the illness and the patient is managed by the GP.
My Oncologist has a very precise manner. Probably a good attribute in dealing with recently diagnosed cancer patients. He required some additional tests before proceeding, firstly a visit to an Ear, Nose and Throat (ENT) Surgeon and a Positron Emission Tomography (PET) scan of my chest to head (more on that later).
The ENT Surgeon examined my nose and down my neck after applying some local anesthetic. This procedure, although strange, had no pain involved. He also took two ‘snips’ of polyps that were attached to the back of my sinuses which made my nose bleed for about half an hour. He required some additional CT scans of my sinuses (without contrast, so no injection) to look for any other lumps. A chest X ray was also done. The histrologil (pathology) report showed that these polyps were not the cancer and the X ray showed my lungs were clear. About this time my GP also carefully examined my skin in case we had missed something; again all clear.
There is only one PET scan machine in Sydney so there was regularly a short waiting list for these important scans. Unfortunately, the machine that makes the specific type of radioactive isotope that allows the PET to work, had broken that week which extended the wait to 2 weeks. The PET scan takes about three hours and is a bit boring. (Note for the teco's - After fasting, they add glucose via a drip (40 minutes), which rushes to any active tumor. The introduction of the radioactive material then attaches itself only to the glucose (after another 30 minutes). This radioactive material can then be photographed (another 35 minutes) by the scanner. The process is only a little bit scary and very boring. The results which were available almost immediately was that there were two "sites of interest", one, my right tonsil and the other is at the base of my tongue.
On Friday 7th April, I had an operation (my ENT Surgeon) to remove my right tonsil and take samples from all sorts of spots including the suspect base of my tongue. The operation was no drama. I was allowed home (or maybe they were sick of me) at 8.00am on Saturday, just 10 hours after I got out of surgery. I had a very sore throat but was able to eat small meals of soft food. By Sunday I was on chicken and vegetables and by Tuesday I was almost back to normal food. I had a Big Mac for lunch, some may question whether or not that's normal food. The biopsy results showed no cancer in any area, other than the tonsil. So that means the tonsil was the primary (and it's out) and the lymph node removed on the 24th February was the only secondary (and it's also gone). Altogether, GREAT NEWS. The distance between the tonsil and lymph note is only a few millimeters so the cancer has not moved very much at all.
This is the first time in the last eight weeks where I felt that I was getting some control of events. However, although both major cancer sites have been removed, there may still be millions of loose cancer cells in the area of my throat, so it will be necessary to apply both radiation and Chemo to minimise potential reoccurrence.
I received the all clear from my ENT on Friday 14th and largely, his role in this is complete. Another great doctor with a fantastic bedside manner.
Treatment
On Monday and Tuesday (11th & 12th April) I spent an hour in my new mask. This mask helps to site the radiation and ensure they keep hitting the target. The machine is all set in advance of beginning treatment to save time each morning. The treatment is five days a week at 7.40am. Each treatment only lasts about 10 minutes and there is no pain or even sensation. The side effects will be cumulative and the last weeks quite uncomfortable.
On the Thursday (13th) I had a picc installed into my left arm, it runs inside a vein from my elbow to mid chest and cause no discomfort on placement or once installed. The installation was done under a small local and there was no pain, it just felt weird. It stays in place for the whole six weeks. Into this picc they pump all drugs and take blood samples. For the inconvenience of the installation, the picc really is a great boon. The Cisplatin is added to drips and the 5FU is done by a small pump that I am carrying around for 96 hours, ie - five days, it's about the size of a small paper back book and comes with a strap. Each day they will also toss in another shot of Cisplatin by drip. They will then remove the pump on Friday but leave the picc line in, and re do the drug thing in five weeks.
Week One thoughts (17th April - 4 radiation treatments and first week of Chemo)
You
really don’t feel anything with the radiation.
The whole process takes only about 15 minutes and the staff are
helpful and efficient.
The
picc really is great, I would have had plenty of injections without it
today. The other drugs (basic
fluid, Navoban (for nausea), Amifostine (to increase my white cell count -
side effects from both radiation and Chemo) were added by this method along
with the Cisplatin. This first
day took three and a half hours.
I
slept a bit during the afternoon and woke feeling like I had a mild hangover
(light headache and very mild nausea).
I just feel flat.
I
am being given Amifostine, also called Ethyol (to keep white blood cell
count up during both radiation and Chemo).
In Australia this costs $3,800 for my treatment.
It gives me hiccups, sneezing and vomiting.
Second
day a bit tougher, I vomited a few times during the afternoon.
My blood pressure rose sharply after Amifostine and during the
Cisplatin drip (160 over 106) but fell back to normal within half an hour.
I became very cold during this time.
I have taken two Stemetil tablets (5mg) for nausea.
Sleep seems to be the best pastime.
Third
and fourth day about the same
as the second. I have
been given Stemetil suppositories and have found them great.
The
Chemo nurses also added Dexmethsone to the drip and I’m now taking one
tablet (4mg) each night. This
is also for nausea and seems to work but kept me awake for 50+ hours.
Looking
forward to the last day of this round of Chemo tomorrow.
Some constipation.
Last
day of Chemo in ‘real’ hospital, as the Chemo Cottage was closed for
Good Friday.
Very
tired on Friday and Saturday (weak as a kitten), I felt much better on
Sunday and almost back to normal by Tuesday (other than a few mouth ulcers
at the back of my upper pallet, which the mix of honey, disprin and hot
water helped).
Constipation was ‘resolved’ on Sunday with a bit of discomfort. Next time I’ll keep a suppository available.
Week Two thoughts (24th April - 3 radiation treatments)
Week
Two started late due to Easter and ANZAC Day (National Holiday) so only
three days of treatment. I feel
like I'v been given a reprieve.
I
have been well all this week, but still lost about 2kg (5lb).
My sense of smell seems to have been heightened yet I have lost some of my taste.
Week Three thoughts (1st May - 5 radiation treatments)
Back
to work following the Easter break.
Taste
has now gone. I am surprised at
my own negative reaction to this event that I was expecting. It is really
upsetting. My current thinking
is that food is very hard to eat as my body does not wish to swallow food
that it does not recognise. Meals
are a real chore. I have lost
about 2kg (5lb).
I
have lost all hair from two small square patches behind my ears.
I first though this was due to Chemo but it was the radiation. Had a
haircut to tidy it up.
They are planning to alter the amount of radiation my spine will receive and using electrons only, as they can control the depth of penetration. This will start during week 5.
Week Four thoughts (8th May - 5 radiation treatments)
I’m
getting tired by late afternoon, leaving work around 4.30pm.
I have decided to take the next three weeks off from work and just
assist by e-mail. I have
been dry reaching a bit during meetings and I don’t feel like I’m adding
much value.
Food
is a real effort. Julie is
cooking a range of soft meals with supplements (Ensure, Sustagen and
Poly-Joule). I find scrambled
eggs and yogurt reasonable. 2kg more lost.
I
have developed an oral yeast infection (candida) and have started taking
Nilstat. Unfortunately I also
have an ulcer under the right side of my tongue which is giving me some
discomfort.
The skin around my neck is becoming hot and burnt, also beginning to itch. The inside of my ears is mildly painful. My beard growth has diminished considerably so shaving is easy.
Week Five thoughts (15th May - 5 radiation treatments and second week of Chemo)
A
hard week, I felt awfully flat all week and just sat around.
Food held no interest at all and I
have lost another 2kg.
We
went ‘off-cord’ on Wednesday and now the radiation treatments are a bit
longer. 5, rather than 3 shots are applied.
My ears have become very burnt and that makes sleeping with my head
on the pillow uncomfortable. My
neck and shoulder area has begun to peel and is itchy. I was advised that I
would have 6 of these ‘off-cord’ treatments followed by 8 ‘boost’
treatments focused on the tonsil area.
This will increase the total treatments from 30 to 33.
The
heavy mucous in my mouth causes me to gag all the time. Rinsing with Difflam
assists in clearing out my mouth. Sleep
is very interrupted and with my coughing and spluttering, I’m not nice to
be around.
A
cold sore or two beginning, I have used Zovirax with good effect.
Warning
- watch out for constipation, I ‘resolved’ my second occurrence with
considerable difficulty and pain. I
am now taking Coloxyl 50 to soften my stools.
Begun to feel a bit better on Sunday afternoon and even went for a walk on the Harbour foreshore with Julie. I discovered that I have lost some physical condition.
Week Six thoughts (22nd May - 3 off-cord radiation treatments)
Mucous
remains the biggest problem. I
have been advised to resume the Sodium Bicarbonate mouth washes followed by
Difflam rinses. I find that I
am able to drink lime cordial easily which is good for my very limited fluid
intake.
I
only talk very softly and when absolutely necessary.
Plenty
of peeling all over my face, neck and shoulders and this is very itchy.
Getting worse by week end, particularly behind the ears.
Wednesday
will be my last ‘full set’ of radiation treatments and I move on to the
boost series focused on my tonsil. I
have been given two days off from radiation treatment this week to allow
some time for my mouth / throat to heal. With the weekend, this four day
break should set me up for the last (8 treatments) hard yards.
It does however extend the completion date.
Some
coughing of throat mucous now is traced with blood.
No problem, just a surprise the first time you see it.
Even
although I am taking Coloxyl I still have not been to the toilet for a week.
As my diet is only smoothies, this is not surprising.
Resolved again with some discomfort but less than last time.
My right ear has filled with wax and I have put in three drops of warm olive oil to assist in clearing it.
Week Seven thoughts (29th May - 5 boost radiation treatments)
The
boost area is quite small, about 5cm X 5cm, so the area of damage this week
will be localized to the back of my throat and base of my tongue.
I
felt a bit better after the 4 day break although my external neck area
remains sore.
I
have been given Ordine 2 (liquid morphine) to rinse and swallow.
This does work. I had a nice warm glow after taking it and
slept well. A side effect is
constipation so I’ll up the Coloxyl with Senna.
I
have lost another 2kg and have run out of holes in my belt.
My
only food intake for the last week has been a drink made from water, Ensure,
Sustagen, Poly-Joule and some banana. I
found that milk added to the mucous and also the lactic acid in it, burnt my
mouth.
Later
in the week, I have been pealing all over my neck.
The new pink skin has begin to look quite good.
This area is no longer sore.
Sleeping
very well, maybe it’s the Ordine2.
The
very back of my throat has become sore again.
Week Eight thoughts (5th June - 3 boost radiation treatment)
Easy
week, mouth still sore and unable to eat.
Starting
to worry about constipation again.
Last
treatment, now I can focus on getting better.
Post
treatment issues
I
am surprised at the slow process of getting better.The back of my throat and mouth remain sore 6 days after ceasing
treatment. I am still unable to work and find myself very
weak.
The
production of thick mucus has decreased, however, first thing in the morning
is the most unpleasant time while I clear my throat.
I
still have not started on solid food but seem to be holding my weight with the
shakes in which I now can tolerate milk again.
Banana still causes a sharp burning across my swallowing mechanism.
I
had my first solid food (porridge) ten days after ceasing treatment.
Each day I feel 3% better.
Went
back to work tens days after ceasing treatment.
Still a bit tired in the afternoon.
20
days after ceasing treatment I am trying some solid foods and feeling almost
well.
I
still have no taste, however, can smell the food in my mouth.
Taste
returned over 12 weeks, however I am unable to eat any hot (chili / pepper)
food.
General
health returned about 12 weeks as well.
On going issues, strength is diminished a bit due to weight loss and saliva production has not returned. I’m cured and well!