After being told from the biospy done on 1st October 2019 that I had cancer by Dr Nigel Johnson.
{My life will never be the same},
who said that he would be refering me to the maxillofacial team at
Royal Brisbane and Woman's Hospital (RBWH) for further treatment as a public patient,
and Dr Martin Batstone will be in contact with me within the month.
I first saw Associate professor, Dr Martain Batstone, on 26th November 2019 and again on 27th, which required an
overnight stay, Greg drove me down on that occassion, as we didn't know then about the free travel and stay
via Qld health.
Dec 2019
When I seen Dr Martin on the 26th November 2019, he asked if he could have a look at my cancer,
(to do this he had put a large tube like camera up my nose to take photos of the cancer.
Before putting the camera up my nose he sprays some antiseptic up my nose,
to numb my nasal passage (it tastes awful), a few seconds later, he slowly inserts a thin tube into my nose
which has a small camera on the end of it. (see photo below),
which shows my nasal passage and where the cancer is onto a TV screen, Greg and I can also see what is happening
it does not look good. (My there are a lot of black hairs up there, I think to myself)
Dr Martin then removes the camera.
On his computer now he has the results of my PET scans which were taken
yesterday,Dr Martin is explaining and showing us what all the images mean.
It does not look good either. He says it is "a squamous cell carcinoma" which is moving rather quickly and
one of the fast growing cancers to have, but we endeavour to remove it all.
Dr Martin Balstone said that the best way to describe my cancer was for us to
think of a large iceberg, what you see at the bottom (being my hard roof pallet) is only the tip of the iceberg and
the rest is eating my nasal passage out
(courtesy RBWH)
Thinking that we had finished with the doctors, on the 27th November 2019, we started heading back home to Bundaberg.
We had decided to stop and have some lunch before making our way back up to Bundy.
Just as well we did because the hospital called me to say that Dr Martin had requested that I was to have another
PET scan done on 28th November 2019, Bugger that's tomorrow. 'What do we do now?' Greg said.
Trying to think
of a solution, after a while;
I say we could impose on your friends Gary and Mary, who are just up the road near Petrie, if we could stay with them
for the night. I know we don't have any changes of clothes but it's an option. Greg thinks about it and then calls
Gary and Mary, who say of course under the circumstance you can stay.We couldn't thank them enough for doing
this for us.
After having this PET scan, Greg and I have decided to stay in a motel closer to the
hospital as I have another early appointment of 8am on the 29th November.
(I have had so may PET scans and x rays during the past few days that I am starting to think that I will glow in
the dark)
Doctors use PET/CT scans to provide more inforamtion about cancers
On Friday 29th November 2019, We arrived early at 7.30 am, for the specialist talking
where I was told I would be seeing several doctors, surgeons, specialist, dentists, nutritionists and even a
photgrapher, all of which will have junior doctors with them. most of whom I will be seeing today will be the teams
that will be working with me to remove my cancer.
Greg and I take the lifts up to level 4 of the Joyce Tweddel building
were we arrive at a large waiting room, with a large rection desk in the middle.
Thinking we would be the only ones here, we are surprised at how many other cancer patients are arriving this early too.
We have to wait in line, we notice there are others here to all with different cancer scares on different parts of
their heads and bodies all very noticable.
The only thing that makes me different from the others is my pink hair which I had
coloured once I found out I had cancer, otherwise I look normal because my cancer is in my mouth and can't be seen.
As I find it hard to talk, Greg does all the talking for me, saying we are here for the specialist talking; no problem
the receptionist says take a seat we will call you shortly..
Greg and I say to ourselves, maybe this is a meet and greet session, giving that there are so many other cancer people
here at the same time.
Boy were we wrong.
Dec 2019
We had only been waiting about 15 or 20 minutes, when a nurse comes out saying that her name is 'Sue' and she will
be calling our names and taking us to a room, where all the specialist will come and see us indepenently during the
course of the morning. (a bit like speed dating only speed specialist
Greg and I are taken into small waiting room where the first person/ specialist to come and see us is the professional
photographer. He introduces himself before asking me, if I mind if he takes a photo of mouth and myself
(face) for future reference so as all Dr and specialist will know who I am and also where the cancer is.
He tells me this photo will be my personal id when having scans and any treatment done if future.
we have seen so many Doctors and speclist today that all information is hard to remember brain over load. Even greg said the same to me not to worry about things. Then nurse Sue comes in and says we are right to go and have some lunch.
As we are leaving nurse Sue comes up to us and says that Dr Balstone would like to see me at 1pm in his room on level 8 of Ned Hanlon building. After seeing Dr Martin in his room he asked that I have a biospy done of my lymph nodes. the biopsy of the left lymph node has been ordered for the 5th December. This was ordered when the PET scan showed something in four places in my neck. We will be coming down by train and an over night stay in one of the motels near the hospital as I will be visiting Dr Batstone and an ENT surgeon again on the 6th December 2019.
(courtesy RBWH)
Friday 6th December was told by Dr Martin Batstone, while in his room that I will be having surgery on the 18th December, they are not sure if I'm having all done at once or have to come back in new year.
Dr Martin goes on to say he will know for sure by Tuesday 10th December 2019. While I was in seeing Dr Batstone, he asked me if he could take a mould of my mouth, knowing that I have the tumour and it would hurt. He says this is in case we cant do the full surgery on the 18th December 2019. We can put this in place of your palette, we will be cutting out the cancer but may not be able to do the graft as well. Before doing the mould, he puts the camera up my nose to see what the tumour looks like. Then he goes out of the room and returns with a couple wire mould and some putty. He asks me to open my mouth wide and as gently as he can with out hurting my cancer he push this wire mould into my mouth. The wire moulds are full of soft putty, Dr Martin asks me to bite down onto the mould, he also says I know it hurts but we have to get this mould as tight as we can to the right size of your palette as you may be wearing it for a little while. The putty push out over the roof of my mouth and into the whole of my cancer it feels rather odd. The putty is rather cold and tastes discusting, but I bite down as hard as I can as asked. Dr Martin is pleased with the results and says this will be made ready for you by the 18th December 2019.
(courtsey dental website)
This will require a train trip down and an overnight stay in one of the near motels. A tentative date of the 18th of December has been mentioned for the first surgery. The surgery comes in two parts, first cut out the cancer and then the plastic surgeon will repair the hole. It has not been decided yet whether both will be done at the same time or on different days. Another tooth may have to be pulled before the surgery. After radiotherapy tooth extractions do not heal well.
As there will be on going trips into BRWH we had decided to move closer to Brisbane. We are relocating down to Petrie showgrounds for a few weeks and then relocating again to the Watons Caravan Park at Dakabin. Unfortunately a lot noisier and more traffic than being at Burnett Heads but it is easier and cheaper to travel from here to Brisbane than catch the train down from Bundaberg. I'm finding it harder to eat normal meals, as most of my food and liquids seems to be going up into the now large hole in the roof of my mouth, making it difficult to eat and drink. I find I am eating slower and having to take smaller mouth fulls. But my health is still good and I am a healthy 65kg, I still enjoy going for long walks with Greg and taking a swim in the pool at the camp area.
A week before my scheduled date of surgery the 18th December I received a phone call from the RBWH to say that I am to come in the day before to have a pre admission talk. I am to attend a pre-admission day on the 17th December which we catch the train in from Dakabin station. This is were we meet up again with Dr Martin Batstone and his maxillofacial team who ask if they can have another look in my mouth and Dr Martin asks me if he can put a camera up my nose to have another look at the cancer. Before putting the camera up my nose he sprays some antiseptic to numb my nasal passage he then slowly inserts a thin tube into my nose which has a small camera on the end of it.
Which shows my nasal passage and the cancer onto a TV screen Greg and I can also see what is happening it does not
look good. Dr Martin then removes the camera and now has the results of my PETS scans of my cancer on his computer
and explains what we are looking at. It does not look good either.
He says it is moving rather quickly but we
endeavour to remove it all.. So tomorrow we are going to take out all the cancer via your mouth. You will have
several doctors and specialist in with you three teams will be around you but you won't know this, as you will be
put under with local anaesthetic before coming into theatre.
However we can only do half of the operation tomorrow and you will have to come back in the near future to
have the other half of the procedure done.
What we are going to do tomorrow is mainly to remove the cancer from your roof palette and nasal passage.
This will require taking your entire roof palette out and then we will be putting the obturator in.
This operation will take all day about 8 hours and you will be taken up to level 8 when you come out of recovery,
you will have two tubes in your nose and will be tube feed for a few days.
If all goes well you, will be able to go home after about 10 to 14 days depending
on how well you heal.
Any questions he asks me? No I say still rather shocked at what I just heard is going to happen.
Now you are to fast as of 10pm tonight and we will see you in theatre tomorrow morning at 8 am have a good day and see
you tomorrow. He has handed me some paper work for pre-admission which I am to hand in tomorrow down on level one.
We say good bye and then level the hospital, heading back to the bus station to catch the train back to our van at Dakabin.
Wow there is a lot of information going through my head at present and we talk about it back at the van,
Greg is very helpful and reassures me all will be ok.
He goes on to say that the worse that can happen is you
stay a sleep on the table and I get your brown coat. A joke we have with each other.
A sleepless night worrying about the up and coming surgery
I had cancer they said they got it all, this is the first part of a continuing story. firstsurgery