Thursday, 12th March 2020

A very early start today, 4 am, get up to have breakfast and make sure I have everything. We have to catch the train from Bundaberg to Brisbane which leaves at 5am. Bags packed with clothes, shoes, a small computer and 3 rolls of toilet paper for a 6 week stay in Brisbane. (I’m taking some toilet paper because people are panic buying.) Greg says to me, “you better have everything, because it is a long way to come back”. As we head off for the train station, the butterflies in my stomach have already started. At Bundy station my bag is weighed in at only 10kg and taken away to be put on the train. I will see it again at Roma Street station in 5 hrs time.
We arrive at 10am and Greg goes to retrieve my bag. Then down the stairs to the bus station where we get the bus to Royal Brisbane and Woman’s Hospital for my first appointment with speech and dietitian at 10.30am.

Onto the scales to check my weight, which is 63kg. I have put on 3kg since I last saw them back in February; good they say. You need to keep this weight. I discussed with them what I have been eating over the past month and they say that all is good, but once I start radiation, I may find that I am not be able to eat some of things I have been eating. My mouth may dry out or become sore with ulcers so I may have to eat pureed food again for a while. Bugger, just getting used to eating normally again.
She has a look in my mouth and says that the transplant is still swollen and touching tongue. They say that this is why I am having trouble with my speech and some words. Both the speech ladies can understand me. They tell me to keep my speech slow.

After seeing them we head upstairs to level 8, for my Maxillofacial (Max-fac) appointment, where Dr. Batstone (Martin as he prefers) calls me in. He asks me how things are going and I say all is well, except for the numbness in my left side of my face. As well as my neck being sore, I tell him I still get liquids coming out my nose.
Martin has some trouble understanding me, so Greg interprets for me. Martin then asks me why I still have my wrist covered, and I say that you (Martin) said to keep it covered till I seen him today. He then asked me to take off the bandage, which I do and he tells me to keep it open and that it has healed well; keep it out of the sun and apply vitamin E cream to help it heal.
Martin then has a look in my mouth, and he tells me all is healing well. I ask him if he could cut the hairs out, (there are a few down one side of my palette), to which he replies, ‘they will fall out with radiation’. Ken, one of the other maxillo-facial doctors has also come in to see my mouth. He laughs at my comment of cutting out the hairs in my mouth.
I also say that the sides of my mouth hurt when I chew. He said that is normal but there is nothing to cause this as all the stitches are gone and the graft has taken well, just have to wait for the swelling to go down, which will take time.

Before heading out Greg reminds me of the large lump which has developed on the back of my neck during the past week and Martin has a look at it.
Hmm it is rather large and he asked me how long it has been there. I say on and off since I had cancer. Dr Batstone has a look on the first CT Scan and sure enough it is there but not in the danger area. Martin then takes a biopsy and a lady from the lab checks with a microscope to make sure they have enough viable sample. Greg and I are sitting watching this rather interesting procedure going on. Both Martin and the lab lady have a look and Martin then says all good we have enough sample. You are right to go. The next visit with Dr. Batstone will be in seven weeks. He wishes us well and he will see us then.

It’s now 1pm so we have some lunch in the down stairs cafe before my radiation appointment at 2pm. Boy times flies when you’re having fun.

We walk around to Ned Hanlon building and up to level 3 for my first radiation treatment. We have done this walk before, along the green pathway marked on the floor to the lifts. Turn left out the lifts and stand behind the line waiting for receptionist to call me over. State your name and date of birth please. Once I’ve told her I am told to take a seat and wait to be called. A nurse from radiation comes and calls my name. I ask if Greg to come in with me. Yes of course.
We follow her down the corridor to a glass sliding door, where we have to push a green button to open the door. Please take a seat here while we get the machine ready for you Sharon. She leaves and comes back 5 minute later, ok Sharon here we go. I ask if Greg can come into with me so he can take a photo of me in my mask. Yes of course he can come in but will have to leave when we start radiation.

I sit on the table like bed which has a sheet on it. I notice there is also a red laser line down the centre. This is so they know I am centre to the machine tunnel. The nurse says lay down with your head up here please. I swing myself up onto the bed then lay down where they have said.



A little further up, good stay there.







They go away and next they place a red tube into my hand for me to put into my mouth. The red tube is for me to be able to breathe through my mouth.











Next the mask is being placed onto my face to lock me into place.





Greg takes a photo.







All the while Greg has been watching. He can see firsthand what I have to have done each day with radiation. He is taken outside into the waiting area while I have the radiation treatment. Only takes 20 minutes from time of setting up to getting zapped.

When in having radiation and they are zapping me I have my eyes shut but while they are zapping me, I see blue flashing lights.
Thinking this is normal, I ask the radiation nurse and she tells me there is no light or beams to be seen only radiation. What you are seeing is your brain reacting to the treatment you are receiving from the different points we are treating. Many of our patients have said this to us. But here is no lights or beams.

The mask photo reminds me of ‘Phantom of the Opera’

After treatment we head off to the unit. Charles Wanstall Apex Lodge, 37 Fleming Road Herston. We catch a taxi from the front of R.B.W.H and it is only a 5 min drive up road with a cost was $5.60. We are greeted at reception by Caroline and she says I am in room 19, which is upstairs and the last building across. We walk around to it and find there is a ramp, which we follow all the way to end. I open the door to a very nice unit, small but cosy.

We leave my bag there and walk back down to the hospital so we can go into town. I have to get some grocery items and then Greg will catch the train back to Bundy. The time goes so quickly and before long we are saying bye and going our separate ways, Greg walking to Roma street station for the train and myself going down to the bus stop to get back to R.B.W.H. From there I walk back to unit. An hour after saying good bye to Greg I send him a text letting him know I am in the unit and he replied saying he was going through Albion and would call me when he gets back to the van.
I have a shower and cook tea which is different because Greg has been doing all the cooking for me. It’s been a long day and I fall asleep, missing Greg’s call. Bugger but he understands.

I have been up during the night peeing every hour which is not normal for me. Maybe just nerves, but I will ask about it tomorrow at hospital.

Friday 13th March 2020

I’m up around 7.30 strange being on my own and in a new place but I make breakfast, cuppa tea and weet-bix.
I unpack my bags and before I know it, I’m having to head out to the hospital for my 10.40 appt. I have decided to walk as it is not far, arriving 10 minutes before my appointment time (only takes me 20min). Before going into my radiation, I let the nurse know that I have been peeing more than normal and she asks me for a sample which I give her. She does a test and says that I have an urine infection, that I need to be on antibiotic. She says go have your radiation treatment and come back and see me when you’re done. I’ll get a Dr to write you a script for some antibiotics.

After my radiation and seeing the Dr. I decide to walk back home. I have lunch and then head down to the games room where I start putting a jigsaw together. I have been there over an hour when three children enter the room. I say hello and they ask me if I would like to play pool, I say OK and we have a game of pool, thank you I say before they have to go back up see their grandma, who is also staying here. I have had enough jigsaw, so I decided to go for a walk around the block. Big mistake as all the blocks around this place are hilly. An hour later I return, hot and sticky, shower and cook tea, before I get a call from Greg asking me how I am. I tell him what I had done and that I am ok, no ill effects yet except for the infection.

Saturday 14th March

Sunday 15th March

Up early and have breakfast, I have decided to catch a bus and take a ride out to Everton Park shops for something different. I walk down to R.B.W.H where I catch the bus to Everton Park, easy so I thought, its Sunday and the busses run differently, after winding around the street for half an hour, the bus driver stops and says to me get off here and wait for the next bus to come, it will take you closer to Everton Park shops. As I don’t go that way. Ok, off I get and have to wait 20 minutes before next bus comes. This time my stop is near Everton Park shops. I do my shopping and then have to do the revere of what I did earlier today. I finally get back to R.B.W.H bus station and walk back to the unit. By now it is 4pm and I’m tired and decide I won’t do that again. I slept well that night.

Monday 16th March 2020

Up early again and have breakfast weet-bix with a cuppa tea. Before going for a walk around the block. To fill in my time today, I’m doing some research on my family tree.
As my appointment is not till 2pm today I walk up to hospital.
I am still feeling well except for infection. I am greeted at reception by a ‘hello Sharon how are you today’. This is a nice way to be greeted and even the team in radiation do the same. After treatment I walk back home (home is the unit).
I am not feeling as well as I normally do, and think it’s because I just walked home in the heat of the day. I make myself a cuppa thinking this may help but it makes things worse. I’m throwing up and have very loose bowels, can’t keep anything down. This goes on for a couple of hours, so I call hospital and they tell me to keep my fluids up but not dairy. I have some crackers and drink black tea, which I keep down. I am to see them when I come in tomorrow before my radiation appointment. I have a shower and an early night as I am so drained of energy.

Tuesday 17th March 2020

Today I slept in as my appointment is not until 1.40pm. Still feeling unwell, I have toast and black tea for breakfast.
I catch the mini bus up to hospital today where it drops me off at level 4 of the Ned Hanlon building, only have to get lift down to level 3.
I book in and then go see the nurse about my loose bowels. I see a Dr. who says it is not related to the radiation treatment but could be a side effects of the antibiotic I’m taking and not to worry. Make sure you take them with your meal. I then go down for my radiation. I catch the mini bus back home, where I have lunch of a chicken and lettuce wrap with a glass of iced tea. For tea I had chicken with smashed sweet potatoes and mixed veg.

Wednesday 18th March 2020

Breakfast of toast and cuppa tea. I walk over to hospital for the 10am to 12pm multidisciplinary clinic for patients with head and neck cancer, a 2hr talk session on how to look after yourself during radiation and after care help and who to see if having problems etc. Having some spare time before my radiation appointment I went to see if I could get a physio appointment but nothing until mid-April. I was then called by speech therapist, who told me that I am not to have the Xray on my neck until the end of April due to the spread of the coronavirus.

I then went a bought some vegetables for lunch thinking I would be able to eat it before I have my radiation treatment at 1pm, but when I arrived and booked in they were early so I had my treatment instead.

While waiting for the mini bus to go back to the unit I eat my lunch.

Once back home I had a cuppa tea and discovered that I have a small blister starting in the left side of my mouth. Bugger.

goto 19th March