What they do tell you about your treatment

Just a few picks to show the level of pain & discomfort in the mouth and throat at the moment.  The big pimply bit on the left hand side of the photo is an ulcer.  These are as painful as all shit and when they burst - they always burst and you can see that this one is about to.

The other point to notice is the redness of the gums at the teeth.  Now this pic was taken before I cleaned my teeth so excuse the plaque build up on the top back teeth.  I spend a lot of time with a babies tooth brush trying to get this off but at the end I have a gob full of blood from where the gums just let the blood come pouring out.

I don't mind the blood because it flushes out the bad shit.

You can also notice the rawness of the roof of the mouth.  Now I gotta tell you that not a thing that touches the roof of your mouth passes without some incredible sensation.   If it is cold water the coldness is magnified at least 5 times but the exciting thing happens when what you are eating contains something acidic or spicy.

On Friday night we were out for Dinner and I tried a mouthful of Lisa's meal to see if I could taste it.   Now she actually forgot to tell me that her meal had Chilli in it. I don't swear much but Holy F&%K.  I want you to imagine for one minute just what it felt like.  To give you an idea - boil your kettle, put the spout in your mouth and pour away.   There is nothing at all that can take away the pain.  Nothing other than what I now call mental toughness.   I had tears in my eyes, and needed to breath through my nose because I did not want to suck cold air in to my mouth to make it worse.

Talk about an adventure.  I recovered after a few minutes and thought to myself - best hold off on the Chilli this week!!!   Only five more days to experiment with what I can eat.  Gotta enjoy this challenge.

Overall though I am still ecstatic about where I am at.  I have had no pain killers today other than two panadol at 10:00am and I have had Poached eggs & Mushrooms for brekkie (along with an Up & Go), A Tuna Sandwich (no more bread as of today - that is way too rough), two tuna cheese and hummus wraps (might no sound nice to you but when you can't taste it you look for smoothness past the throat and the nutritional value of what hits your stomach).

I have also found Fuze Iced Tea which funnily enough actually has a great taste that also momentarily takes away the taste of the mucus and puss in your mouth (sorry - sounds awful I know but that is the reality.

Now, I want to talk about a serious topic -

THE TOP FIVE THINGS THEY DON'T EXAGGERATE WHEN THEY TELL YOU ABOUT YOUR CANCER TREATMENT 

- Counting down from 5 to 1 - here they go....

5. They do not over state how much they care for you.
I have been going to Peter Mac for nearly 10 weeks now and not once have I encountered a staff member who is anything less than wonderfully friendly, caring and warm.   I mean it, these people are sensational.  It makes no difference whether they are the Ward Clerks on Clinic A, the Phlebotomy technicians in the Blood Unit, the Admin Staff, Nurses, Volunteers, PSA's and the wonderful catering ladies in CDU, right through to the Admin staff, nurses and Radiotherapists in the dungeons of the Radiotherapy Treatment Clinics.   These people are sensational.  They meet literally thousands of people and yet they never seem to forget your name, and always appear to be interested in your journey and how you are feeling.  I witnessed an incident with a rather grumpy patient lashing out at a PSA because of delays in his treatment and his getting back to his ward, and I understand why he might feel like that, but I was so incredibly impressed with the way the RT staff member spoke positively and compassionately to the patient whilst ensuring him that the staff member could not be blamed for the delays and how unfair it was to treat the staffer the way the patient had.   It was wonderful to hear the patient apologise for his rudeness.   So if you are the CEO or COO of Peter Mac and you are reading this - be proud of your staff and acknowledge the truly wonderful job they do.

4. They do not exaggerate how sore your mouth will/can get
The previous photo's say everything I need to say here.  Every time I open my jaw (separating my teeth) I catch the back of my tongue on my molars.  Now this doesn't hurt much.  Try scraping the skin off your need and then just rub a scrubbing brush back and fro over it every few seconds, don't worry about the stuff seeping out of your knee (the blood and stuff, just lick that up and swallow it).  Know you have the idea of what it feels like.  Put the tip of your tongue between your front teeth and ask a good friend to give you an uppercut so that the tip of your tongue is cut by your teeth.  Now rub that inside the back of your teeth all the time, great fun hey!!!   Finally get someone to punch you in the cheek as hard as they can with your mouth closed.  When the skin shreds inside your cheek you are getting close.  Remember all three of these are combined.  Not just one type of pain at a time, but all together and never ending.  Pain relief helps for sure, and I am so very very thankful for the Panadol and Morphine based tablets but this only works if effectively manager - every four hours no more than 4 times a day is like 16 hours out of 24.   Sleep takes pain away.  If you get it right, you have relatively comfortable days.  I must be getting it mainly right because it is not the worst things I have to put up with.  

3. They do not exaggerate how much the loss of taste will effect you  
They tell you at the start of treatment that they do not know how much you will be effected by the loss of taste bud sensations. I think that having some age on me actually has helped here.  When I eat Mushroom, I am lucky enough to remember what Mushrooms taste like, so it could be phantom flavour that I experience, or it could be 40% of the flavour that I taste, but I have to say that very little that I eat now has any flavour.  Eggs and Chocolate Milk seem to be the only real stayers in the food fields.  Not Chocolate, but chocolate milk.  I theorise that it is perhaps the milk that tickles the tastebuds and allows the chockie flavour to sneak through.  Eggs are amazing.  Poached egg white is usually just a bland flavour but for the last 6 weeks they have been the flvour burst in my mouth.   I am looking forward to the next four weeks.  The Medico's tell me that once treatment stops things start to revert to normal (albeit slowly) so I am keen to see what flavour sensations return first and whether I will actually lose and tastes (I will volunteer to forego being able to taste cucumber as long as the flavour of prawns returns.   In addition to this think about your average meal.  Usually about 20 - 30 mouthfuls.  At about 10 seconds a mouthful about 5 - 10 minutes to eat a course of a meal.  Now when you have to find the pain free sweet spot in your mouth, and you need to chew so much that your food resembles a paste rather than solids, and this takes about 20 seconds unless you work your jaw faster than a hammer drill, then the average meal extends to 15 - 20 minutes.  By the end what you are eating is cold, but you need to keep eating.   The boredom of being the only person who is still slowly chowing down is possibly one of the key reasons people think - bugger this, I don't want to eat any more.   I have not let it get to me yet because I want to be healthy, but I can sure identify the problem.

2. They do not exaggerate how much the "fatigue" will debilitate you
I was in week three heading in to week four before I started to feel the effect of fatigue and had thought that it was a mythical side effect.  Honestly, I was almost half way through and was thinking to myself what is wrong with these people who claim they are fatigued.  If you have read any of my prior blogs you will realise how much this ridiculous belief has been altered in the past week or so.   I can manage about three (3) hours of activity now without too much concern, but then I start to get aches between the shoulder blades, a few moments later I will start to feel it behind my knee's.  From then I have about 15 minutes to start resting before all of my joints start to ache and my head starts to throb and I start to feel rather shitty.   If I lay down flat, I recover very quickly, if I try to just sit around it is ineffective.  Thankfully I always have Lisa willing to allow my head on to her lap if I lay down and the gentle stroking of my hair that she does is a sensational tonic that sees me dozing very quickly and providing me with that much needed 30 - 45 minutes of sleep to revitalise.  Fatigue can be managed but it is challenging.

1. They do not exaggerate how much the taste in your mouth will be "uncomfortable".
For me the worst thing that I have had to deal with it the taste in the mouth.  I met someone the other night who said he was in week two and he felt like he had been sucking batteries for a few days.  I am just so over the saltiness.  It is never ending.  There is no relief, no respite, nothing at all takes it away.  Sure you can get rid of it for a few brief seconds with Iced tea, mouth wash and milk but it comes back very quickly.  Add Morphine as a pain killer and I am 100% certain that the production of mucus intensifies and it feels like you are literally drinking salty syrup.  Syrupy because it is thicker than normal saliva.  I could spit it out in to a sup or glass but then everyone else in the house would need treatment for vomiting.  Oh well, dig deep, hang in there, not long to go now.  

I hope these help.  This is my perspective and I am going to close off by saying that on the last day of week 6 of treatment and nearly 4 months since diagnosis my level of discomfort on all five issues above are -

5. No issues, I love them all,
4. About 3/4 out of 10, but I will eat Fish and Veges for dinner and then resort to pain relief
3. I love fish and thankfully believe that I still taste about 20-30% so this is a 2/10
2. I have rested all day and feel great.  I could not walk 5km nor could I wash my car, but I am quite relaxed and will most likely hit the pain free snooze zone at about 10:00pm.
1. This is the worst - I am gonna say 4 - 5 out of 10.  Only because nothing seems to be working today, lemonade - not enough, ice blocks, not enough, water - nothing at all - actually makes it worse. Going to try soda water and raspberry cordial see what happens.

Oh the fun.....