My Cancer Journey - Part 1 : In the beginning 🛣️
Introduction
I thought it
would be either cathartic to me in some way and informative to others that
maybe affected by what I had or just Cancer in general. I often get asked
"how did I notice?" or "what happened?" so I put pen to
paper as its been almost a year since this journey started. That and the fact
if you are reading this you may have found it through my Macmillan fundraising
page and I want to throw more info at you to convince you why you should part
with your hard earned cash to support this wonderful charity .... queue the
violins 😁
I will be honest and factual, I'm am aware this maybe hard for some to read and may be a trigger. At the end of the day I am talking about cancer here afterall. I'll try to be my upbeat self but where there may be humor (this is how I deal with things...everyone has their own way) there will be at times emotional areas to cover. I have split my journey up to now in to 2 parts. Its a lot to read even at this and I could have easily made it as long as all of the J R R Tolkien novels put together so please stay with me.
In the
beginning...Part 1
"So, what’s
that about?"
I can’t say
exactly when but I know it was back end of December 2022 I noticed my left
tonsil looked a little inflamed. I didn’t notice any soreness and to touch, it didn’t
hurt. After a week it looked a little bigger but again it was not sore. After
the xmas festivities 🎄❄️🍺 it looked larger and more concerning to me as it was a
little sore at this point and had some ulceration on it. It felt more like just
a normal mouth ulcer so I thought maybe I should get this checked out. I wish I
had a picture to show you of mine, but I didn’t take one. I have taken one from the internet.
This image is
very near to how mine looked. To be honest mine was bigger but I wouldn't want to
boast 😬
"GP
No.1"
While visiting
the GP regarding my son (at this time he was only 2) a few days after I thought
maybe I should arrange a visit for myself. I thought I would be cheeky and fit my aliment
into our consultation too (he was fine, just a viral cough that went a week
later). I was told that it didn’t look infected and to maybe try some Difflam
(an over-the-counter antibacterial spray). This I did and after 5 days it just
seemed to anger “my little passenger” 🤦, so I arranged for another consultation
with a GP.
"GP
No.2"
About a week and
a half after my last visit to the Dr's surgery I was there again. Different GP
this time so I advised what had been happening and what I thought it may be (tonsilitis).
This Dr didn’t seem too concerned and advised me it wasn’t bacterial so couldn’t
really issue antibiotics. I asked what it could be then, and her response was
to just see how it is in another week or so. I’m assuming she thought it was
viral and that my body would "just deal with it 🤦🤦🤦".
I walked away
feeling a little disheartened and like I had waisted their time to be honest.
The fact when the Dr called me in, she was telling me she was a bit rushed and
that it had been a busy day, I did not feel I was being properly listened too.
That evening I decided to get a "second opinion" ...well third really
but privately. The following evening, I had my consultation over the phone and
without wanting pictures the Dr said he was making a private referral for me as
it had gone on too long and clearly it needed further investigation.
“To the specialist”
6th of January,
only 5 days after my private consultation I went to Spire hospital to see an
ENT (Ear, Nose & Throat) Specialist 🧑⚕️. The consultant took one look inside my
mouth and said after a 10 second inspection said to me, however he could not confirm his suspicions at this stage but one thing he knew was that me and
"IT" (my little passenger) should be removed from one and other 😬. He
explained that I would need to be scanned and that he couldn’t rule out the
possibility of it being a tumor (benign or malignant), also a biopsy would be
needed.... I don’t know what I expected but it wasn’t this.
"Right then,
let’s just get on with this."
30th January I
had my first CT Scan which was a funny experience, the operator warned me that
when the contrast medium injection was performed that I might feel a sudden
rush in my body like i suddenly needed to pee....yes that’s right folks
pee... 😂 and boy I did. It lasted only 20 seconds, and I held my bladder 👍 The whole procedure only took 15mins approx
and was painless apart from the “Short Sharp Scratch” when the canula went in
for the contrast dye 💉 .
31st of January I
was back at the Spire for a MRI scan this time, the contrast dye was different
and no need to panic this time that I may need the toilet. However, I had to
lay still for 40mins for the scan...which being a fidgeter was the hardest part
of this procedure. I don’t suffer with claustrophobia so being laid in
the tunnel was not too bad. First time for me in one and wow what a series of
clatters and bangs this machine made. Even with ear defenders on you could hear
a whole host of click, bangs and what sounded like an old ZX Spectrum loading a
game and a road worker using a jack hammer. Again, apart from the “Short Sharp
Scratch” 💉 from the injection of the canula it was painless 😊
24th of February
I had my biopsy, this was straight forward. The procedure was done at Spire, it
took only 20mins I am told. As I was under general anaesthetic 💉, I wasn’t under
that long from start to being in the recovery room afterwards. Only a small
section of my tonsil was removed so I was back to eating and drinking anything
in no time.
"Necrotic
tissue"
This sounds fun doesn’t
it folks 🤢....I had never heard of this before and all I can say is just ew ew ew
in my case. About 7 days after the biopsy, I noticed a strange and unpleasant
taste in my mouth. Now we’ve all had morning breath, but this was something
else and stayed even after brushing and a litre of mouth wash. I knew there
must have been an odour to it also and that made me a little paranoid. I
arranged a visit to the Drs surgery to investigate.
When I entered the room the
Dr took one look and explained it was due to the operation site of the biopsy.
This taste and smell is caused by necrotic tissue, basically the tissue around
where the biopsy operation was conducted was now rotting away….mmmm yum 👍. The Drs
due diligently contacted Spire and spoke with a registrar to see if they should
prescribe me some antibiotic. The registrar was a little nonchalant about it
all and said to just leave it as it is…great I thought.
“D day…or should
I say C day”.
14th March I went
back to see the consultant at Spire for my results. As I entered the room and
sat down in the inspection chair, I advised him about the necrotic tissue, he
said it was common after a biopsy like this and that "WE" need to do “a little
more work as your not done with yet 😦.” The eye contact and body language of the consultant
however caring and yet matter of fact forewarned me that this is it.
So, I got my
diagnosis, he explained that it was a malignant tumor and yet seemed not too
concerned. At that stage I had a million questions it would seem but not this so-called
tunnel vision and all noises stop moment I have heard about at the time of
being told you have cancer. The fact he acted like he did this all day long…and
I’m sure he did, made me feel more positive about it….if one can be positive
about it at all.
He gave me the low down of what the biopsy result was and also
the scans. The scans revealed more positive information in the fact that the tumor had not metastasised (medical term for spreading to other part) well only to a
couple of lymph nodes in my neck. These would be removed along with my left
tonsil in an operation to follow in the coming weeks.
He then went on to tell
me that I would be handed back to the NHS and he has already been consulting
with the surgeon that would be conducting the operation 👨⚕️. Then I would no doubt
need a course of Radiotherapy and or Chemotherapy, but the good news was that
this was caught early. He gave me as much information as I could possibly take
on and I left the hospital.
“Breaking the
news”
The evening I received
my diagnosis I drove away from the hospital to only think of one thing. How do
I break this to my folks, my daughter (in her 20’s), friends and colleagues? No
one wants to hear the news they have this awful disease but similarly when
having had the news, to give the news to loved ones is hard to prepare for.
Knowing their concerns, upset, confusion, “how come?” and “what now?” having had them too. I had only just been
dealt to news myself and I don’t fully understand what’s to come next, the when
or the how so I decided at that point I would keep it quite, only
tell a select few until I either had better news or had a handle on all the
facts and the plan to come.
Firstly, I called
my folks to let them know…this was tough. As I told them they went into parent
mode straight away and being “boomers” had the “we will fight this” attitude
and it’ll all be fine whatever is to come. I knew as a parent you never want to
be faced with the possibly of outliving your own child.
Next on the list was my
daughter, she knew why I had my biopsy, but I guess nothing can prepare you for
the news. She then flipped roles and started to parent me. Whatever I needed
she was there she wanted me to know.
Then came a couple of close mates of mine….
they didn’t even know I’d had a biopsy and as far as they knew it was just a dodgy
tonsil. Lastly, I advised my boss and a couple of close work colleagues as I
would need quite some time off and of course they unfortunately be lumbered
with picking up the slack.
Apart from this I thought no one else needed to know.
I didn’t want to have people pity me or be overly concerned about something
that was clearly out of our control at that time. Plus again…I didn’t really
know what was to come with my treatment.
After the people
who needed to know, knew I had time to reflect a little on the situation. I
would say this was the only time I had a little pity in my heart or that thought
of why? These were the thoughts that lead to this. While reflecting I was thinking about making sure my affairs where in order. What if I go,
are the kids going to be looked after. Well like most people we are worth more
dead than alive due to pensions and life insurance…so yep financially there
fine.
My daughter is a
grown women and more than capable of looking after herself. My son…well my son
will be ok, plenty of money to help him fulfil his life’s calling, whatever
that may be.
My daughter has had a happy childhood, lots of fond memories to
cherish. My son….well, oh wait... he wont remember his Dad, he’s only 2 years old.
I don’t remember time before I was 5 years old let alone 2. He wont remember me…..this
is awful I was starting to feel for him not ever knowing me. Then as the old
brain has a way of playing havoc on itself….”I wont get to walk my daughter
down the aisle!” ….aaagh no this cant be happening.
Now these thoughts entered
quickly from nowhere it seemed, but this left only one solution…Get well again.
No matter what it takes, these things cant happen. What ever happens, op,
radio, chemo or anything else…it needs doing and can we get on with this 💪
Meet the team
“Boom…Tunnel
vision moment”.
22nd
March ENT Castlehill Hospital. I had a meeting with the surgeon who would
undertake this operation to fix me. I knew that the surgeon had been consulting
with the consultant from Spire and knew only too well what my situation was. He
started to talk about my condition, making many references to the lymph nodes this
time and then proceeded to talk about the stages of cancer 🧐.
Starting at Stage
3 and what this would mean and prognosis and then went onto Stage 4…this was it.
This was when the room felt very small, I could only really see the face of the
consultant, my peripheral vision had diminished and all audible sounds of trolleys,
monitor beeps and all noise of general hustle and bustle of a NHS hospital vanished.
At this point even the Surgeons voice was going quieter and quieter 😦. I don’t know
if I made a noise from my mouth or that he read the situation and my body
language, he then wrapped up whatever he was saying at that point to then say
but Russ you fall into the early stage.
That bit, that
bit I could hear very clearly. His face went from being informative and factual
to a smile. It was like in the films where a soldier or secret agent is involved
in a nearby bomb blast. You’re scrambling about trying to figure out your
surroundings and how you got there, what has happened. All hearing is near to
lost and all sounds are like you have your head under water. Then all of a sudden,
all senses come colliding back in a flash like a lightning bolt.
I was aware I may
have looked teary but at the same time I was suddenly aware I had a beaming
smile on my face that was staring to ache my cheeks 😊 So Stage 1 T1N to be
more exact basically “Early” stage, he was factual and advised there was an Earlier
stage. I forget the classification of it, but I call it “Early Early stage”. So
stage 1 meaning it is isolated, the T1N, “T1” is the classification of the
tumour size and the N meant it had effected some lymph nodes.
“The plan”
I was then told I
would be called back in a few days for a pre op assessment. What would be
happening would be the tonsil and the surrounding area would be removed using
either a robot or endoscope. The surrounding area is called the “free margin” (I’ll
be coming back to this in the part 2) to make sure all effected tissue is gone. I guess the
best way to describe this is that when you dig a fence post you don’t dig a square
hole but a larger round one to make sure the post fits. As for my lymph nodes
that showed up on the MRI I would have an incision on my neck from the bottom of
my ear all the way down to my “laryngeal prominence” or Adams apple 😮.
I didn’t think
anything of this as I would rather have a scare, I could make up some strange fantastical
story to my son how I earned my scare rather than not and not be around to tell said
tall tale. I know you are thinking “Russ, what have you thought of to tell?”…well
to the time of writing this I can tell you…Space pirates did it, this is my
story and I’m sticking to it…the detail of how it came to pass that the “Space
Pirates 🚀⚓” happened to do this to me still needs working out or he’s going to
know I’m making this up right?.
I asked what was
the difference between the endoscope and “Robot” in terms of time, procedure,
and success? The consultant said there was nothing in it. The result would be
the same, it was purely down to which operation room was available at the time
they could schedule me in.
Now don’t ask me
why but by now it make come to no surprise given my space pirate story I was
weirdly hoping for “The Robot Room”. I already
had a name for the fictitious half sentient being who would save my life….Bert! Not B.E.R.T it was no acronym, just Bert, I can’t even tell you why. In reality
it was just a robot arm that would be remotely controlled by the surgeon, I’m
sure it was very sophisticated and cost the NHS a fortune…but it was no Bert.
I asked an AI
platform to draw my description of Bert 🤖 and it did a good job of what was in my
head. In actual fact in doing further investigation after, it is impressive
just the same (see below)
“Russ can we have
your bits?”
Putting the room
selection to one side in the room with my surgeon was a young lady who was sat
there with a clip board and a warming smile on her face. At this point I had
regained my senses and positivity (Along with the notion that maybe I would
meet Bert one day) . The surgeon and real saviour introduced me to this lady
that was from the clinical trails team and wanted to discuss if I would be
interested in taking part in a trial.
She
went on to explain that if I was interested it would mean that I would be expected
to give blood samples 🩸 and fill in questionnaires 📃 over the coming months and over
the following years to come. It would mean they could study certain effects on
new forms of treatments to combat this awful disease. She went on to explain it
could have an impact on how my treatment plan would be compared to the normal
method I would have; however I could stop at any time and go the “normal route”.
This would be if the op didn’t catch all for whatever reason, then Radiotherapy
and Chemotherapy would be used.
“Count me in”
I didn’t need a
moment to think about it, I’m in 🙋♂️! At least I had options and if I could give a
little something back to help deal with anyone else’s “little passenger” then I
would. The thing is the way I saw it so many others must have helped in this
way to be able to deal with cancer as we do now. I remember even as a child in the
80’s to get “The big C” was a death sentence usually whereas these days a lot
more can be done about it (unfortunately not for everyone…this is why the trials
are important). She then went on to say she would need me to sign some medical
release forms and do a questionnaire after my consultation 📃.
Coming back to the operation I was advised
about the many side effects that “could/might” happen, these are the following:
Dry mouth
Sore Throat
Bleeding
Loss of taste
Lymphedema
Dysphagia
Hoarseness
Infection
Taste Changes
Stiff Jaw
Voice Changes
Pain
Nasal
regurgitation
Nerve Damage
I asked what are
the likelihood of any or all of these? His replay was that everyone is different,
and some people get many of these and some few. Great I thought…that doesn’t tell
me much but then if this is the case, he could only advise what “might” happen.
of course, I will explain over this and the following part to my cancer story
which where to come.
I reframed the question and ask which would be most common
to have. He said “Russ, everyone is different, but I can guarantee 2 of these”.
He had written them down on my consent form so with a pen he circled 2 “Nasal
regurgitation” & “Pain”. Lovely I jokingly said 😁, I won’t go into all these
side effects just yet and I guess we all know pain.
Nasal
regurgitation 👃 is caused by the top pallet of the roof of the mouth being cut away
to retrieve all of the tumor and “free margin”. What happens is that liquid or
food instead of travelling down with gravity into the stomach it decides to
travel up into the nasal cavity. He advised me that all these side effects
usually go away without intervention through surgery, but it can take some
time, in some cases many months.
One last thing I
have not gone into too much detail yet but it had been mentioned to me that
there is an 20% chance that the operation would be all that was needed and no
Radiotherapy or Chemo. I thought well at least there are options still to fix
me but just the op would be fine by me 😁
I finished my consultation
and filled with relief and hope left my surgeon to then have a meeting about
the trial. This was a short meeting, and I was asked again and to go away and
think about it. In the meantime, I signed some forms to say they could use my
info for the study and take my samples. One release form for being to use “my
little passenger” at the medical schools for the trial, another to send a piece
of it to other universities, another release for my blood samples too. I was
then told that I would be contacted in a few days just to make sure I had no
further questions and to check I was still happy to proceed with this.
As I was leaving
the room, I was handed a MacMillan information pack, this hit home again, I was a a little
confused but this was my own ignorance. You see I had only ever associated MacMillan
Cancer Support with end-of-life care. So, to be given literature from them had
me a little confused again but I thought I would read first as I think it was established,
I’m not at that stage.
As planned a few
days later I got the call and again gave the green light to use me as they
wish 💪.
31st
March – Pre Op Scans, not much to report on with these. This time I was over at
Hull Royal Infirmary to have both CT & MRI scans. These would be more
localised scans as we knew thankfully my little passenger was riding pretty
much solo.
CT scan took only a moment or two as it was just jawbone to just
below the shoulders, no contrast dye this time, that weird feeling I had psyched
myself up for …was to no avail. MRI took less than 10mins in total, this was
with dye so..."Short Sharp Scratch" 💉. The reason for the scans was to have an up-to-date map of where “IT”
was to make sure no trace was left and was a tidy house.
“No food from
midnight the night before and only one cup of water before 6am”
4th
April Operation Day
I got to the
hospital at 07:30 and due to theatre at 09:30. Having only put under through
general anesthetic a few weeks before it was not daunting to undergo this
again. Even though it wasn’t a 20min op this time but in fact turned out to be
4 and a half hours in total. I was prepped and as I entered the operating room I
was greeted by my surgeon and about 8 others in the room who all looked rather
busy prepping also, and then I realised …. there all here for me and my little
passenger…wow 😷🧑⚕️👩⚕️.
In went the canula and on went the mask. “Short Sharp Scratch
Russ” 💉 and the cold sensation of the anesthetic started in my arm…….nighty
night 😴.
By about 15:00 I
had come around and was back in my room. When I met my surgeon for the first
time, the incision he mentioned was pretty much as described 100% so no shock
really but seeing it was an eye opener 😮.
“It’s a big'gun”
All stapled shut
with the drain he mentioned in there, I woke laid on the bad with a weird
sensation in my lower legs. I looked down and wrapped round my feet and calves
where these odd white balloon things. Pumping away but even though the noise
sounded like a crossed between a breast pump and bus hydraulic break disengaging
I soon got used to it. In fact the sensation was like a gentle massage on my
legs. I was advised these where to keep me from getting Deep vein thrombosis
(DVT) and I had to wear them for 2 days at least and or until my drain could be
removed 🧦.
Here is the DVT
pump….I miss it
I was to be kept
in the hospital for up to 3 - 4 days, this was all dependent on how long it took
for my drain to stop 🩸.
“What a Drain…”
So the drain was
exactly that, a small tube the diameter about the same as a maccy dees milk
shake straw 🥤. It ran from the base of my chin, down towards my Adams apple and
then along the clavicle area and out where they made the incision. The remaining
tube ran over my shoulder into a vial where it just dripped whatever was in
there out to the vial….again ew. It was concealed in a rather fetching floral
pouch that went over my shoulder like a handbag 🌸🤣.
So here’s the
picture, 6’2” guy laid in bed, slightly upright to help drainage, crazy blowup
stockings on that sounds like a breast pump, hospital gown that makes your eyes
dizzy just looking at it with a nice floral handbag 😂 ……that was a prettier
sight than what was visible above the shoulders. My space pirate battle scare I
include a photo below but will leave room for you to think “should I see this?”
as you are tucking into you lunch….
...you’ve been warned 🤣
...
...
...
There it is.
In total I was in
the hospital 3 days, my drain stopped. This meant I could go home yey. I was
well looked after, the Dr’s, nurses and all axillary staff couldn’t do more for
me. I ate plenty and really enjoyed the food. That and the many films I watched on my tablet it didn’t seem a long time to be in. I
seemed to be eating normally and apart from cutting my food up in smaller bite
sizes it seemed to go down ok with not much pain….this may have been due to the
countless pain meds I was on and at the time my ally Gabapentin 💊.
This drug is
for nerve pain and given to people who suffer epilepsy and my word it worked. I
was surprised with the level of pain I had and expected more. Don’t get e wrong
by the time the nurses came with my next dose…I was ready for it and could feel
enough discomfort to know the meds were hiding the pain 😁
Now just to take
off my stockings I became rather fond of 🧦 and oh yeah….time to remove the drain…simple.
I was told that I should come back in 3 days for the removal of the staples, I
was quite shocked it only took this time and expected a lot longer. It was a
bank holiday so they asked if I’d be ok leaving it 4 days to come over for this.
That’s fine I said.
Still quick! Apparently, your skin in your neck has healing powers like that of
wolverine…the nurses didn’t say this as much but in my mind I recon they wanted to tell
me this. In all seriousness a full tracheotomy op patient would on average have
the staples out in 3 days and I only have one side with the incision…they have
both sides.
So now the drain
removal, now this was an experience 😬. It was held in place with only one very tiny stitch.
Removal of said stitch…easy. Now the withdrawal, the young nurse that attended
to me couldn’t have been more gentle with me however, to have the tube pulled out was a weird
feeling in the beginning, suddenly as more and more came out like hanky’s from
a clowns pocket it was remarkable how long it was.
As the nurse gently pulled
out more and more wrapping it round her fingers as she did it, a pulling
sensation started to occur. This seemed to get greater and great as the end of
the drain was nearing the exit of my neck.
Now in hindsight I
know now what happened and could have maybe prevented it by suggesting a solution.
I’m not saying I am more qualified than the nurse but she was a junior nurse and explained
she had only just started doing these 😬.
You see what was happening as the drain
was being retracted and she coiled the tube, a vacuum was being created, hence
the pulling feeling in my face. It doesn’t sound much I know but if I have just
said release the coiled tube to allow air to pass through, then the next bit
may (most definitely) have been less painful.
You see ladies
and gents, the “incision” made meant that the surgeon could peal away my neck
skin and have a wide open view of my neck to access the lymph nodes 😷 🔪. The nerve damage
caused by this as you can imagine was tickling a little at this point. The
drain would just not retract out, the more she pulled the more it clung onto
dear life to my face and at this point it felt like my skull was going to pop
out too 😊 with one last almighty tug I heard a pop/snap sound.
Now sound travels
at about 767mph and light travels at 299,792,458 metres per second and boy it
felt like I had already been struck with lightening ⚡before my brain had
registered the sound. I don’t know what I actually said but if it was the full
F bomb I shouted it was a definitely a partial one 🫢 . My word it tickled and
left me shaking for a moment or two, the nurse was apologetic as I had gone
from normal silly me to a very quiet shaking mute 🤦.
I regained my senses and the
momentary pain had gone, I said it was fine and sorry for the coarse language…then
we both started to laugh, and she said trust me Russ I hear worse 😂. So, the ordeal
was done and to be honest the drain removal was the worst thing about the op
while I was at the hospital. I was to go home and rest and in 3 weeks time come
back to see the surgeon for a checkup and discuss if any follow up treatment would
be needed.
So armed with a sack (yes sack) full of pain meds and god knows what
else, I went home. I would say I was eating most things I did before, just
smaller mouthfuls. I seemed to be sensitive too spicy things so I had to tone
down the spice . Those that know me, know I’m a chilli fiend and to throw in
some crazy chilli sauce into everything was the norm. I had to lower myself to
a little chilli powder '🤦😂🌶️
As the days went
on, the pain started to fade and all that was left so far from the list was
stiffness, not just in my jaw but shoulder as well. I suppose having you mouth opened
wide for over 4 hours would cause even the most avid jaw flapper like myself a little stiffness 😁
The "nasal
regurgitation" was happening, it started a little at first and seemed to be just
liquids. It was a bizarre feeling to be honest and more funny than remotely painful.
I would sip some coffee or water and about 10 – 20 seconds later it would just
trickle from my left nostril a little. It started on the left but after a week
both where full game and it was comical. As I said it just seemed to be liquid
until and just the once it happened with food. Let’s just say nasal
regurgitation with spicy hot spagbol is a special feeling 🌶️🥵👃
This seemed to be
it from the hit list of side effects and just before my checkup, 3 weeks after
the operation I realised I couldn’t blow up a balloon without nipping my nose
closed🎈. As I blew the balloon air was more interested in leaving my nose
than my mouth 😂
So far so good, what
happened next, you’ll just have to stay tuned ….
Update....Part 2 is ready For Part 2 click here
Oh by the way, did I mention I was
fundraising for MacMillan Cancer Support?
Here’s my page 😉 JustGiving Fundraising Page
