So the day goes like this -
1. Medical Oncology Clinic 9:30am - 9:45am
2. Brekkie
3. Chemo Day Unit 11:00 am - 3:10pm
4. Dietician 3:20pm - 4:00pm
5. Radiotherapy Planning Clinic 4:00pm to 4:20pm
6. RT Treatment 12/35
After seeing Courtney (Clinical Trial Research Officer) whose beaming smile starts the day, about my Quality of Life questionnaire, my journey manager/travel agent Prof Dan comes and calls me in to his treatment room (I am first appointment of the morning again - this tells me the day is gonna go exceptionally well) and it is really fantastic that I have Dan laughing along with me. (I knew he would come round eventually).
This guy is bloody awesome really. He is the head of department, but I can tell from the way he talks to me that he is acutely aware of how I am progressing. Now as a patient, this is so reassuring and the great news I hear during the session, along with the laughter and genuine banter that goes back and forth is so uplifting. He does tell me wisely though that it is not worth the cold to dunk myself in the ocean (thanks a million for that one cobber!) to help with the rash cos it is a rash and not zits (acne). I really was not too keen on lowering my privates in to iced water! I am not a pro footballer after all. They get paid big buck for that privilege, so I am happy to leave it to them.
I get more meds to help with the rash. The fact that it is so "florid" (learnt a new word here, another bonus) is, I am told, such a great sign, and now Tetracycline can be introduced (an antibiotic) to reduce the infection side of the side effect and settle the rash down.
Dan (and the lovely Rebecca, another Research Officer) advise me to head up to CDU, as he is going to approve the Cetux dose immediately and he is sure that I can possibly jump up the queue. My Cetux is schedules for 1:30pm, but they think I will get in earlier. Score - 3 great outcomes in 15 minutes. 1. Progressing very well, 2. Rash relief provided and 3. Possible reschedule bonus. What an awesome start to the day.
Chemo Day Unit
After registering at CDU, I am told that the dose has been ordered and will be here within the hour. It is 10:10am and I have until 11:00am to head off and grab brekkie. COOL!!. 2 wins here - a two and a half hour time saving and time to enjoy something to feed myself and hopefully balance out the weight loss of the weekend.
I head in and catch up with Aaron and Tahnee and am elated to see Nat from Laughter with Cancer. Nat is amazing and if you are needing a lifestyles coach you would benefit from checking her out. Such an uplifting person, and a great hugger. I share the floridity of my rash with them and launch me Cancer fundraising idea - taking off my short and charging people to play "Boxes" "Paddocks, or "SOS" on my spotty chest with washable markers. I reckon a coupla bucks a game would go well....... Tahnee is on her second last treatment. ONE MORE WEEK TO GO. She looks great and it is fantastic news that life will become "a lot more normal" very soon. I ponder on that thought often and wonder just how much post-normal will differ from pre-normal. Keep reading this blog and we will all find out.
Now I know that people whinge about waiting times, and whilst I understand why they do this, I also question why they feel compelled to. It does not take a genius to look around and realise that the teams at Peter Mac are working at full pace every day treating what is clearly a huge number of patients each day. Thankfully, I choose to use time waiting, as thought time, or appreciation time. That is, I think things through or simply just look around and take stock of what we have to be extremely grateful for. There is so much, and it is great to actually have time out of my busy schedule to just sit and think through the myriad of issues that we encounter every day in the workforce, at home and in the family.
I am ushered in to my "booster seat" just after 11:15am and am so happy that my view is a wall about 1.2m away with a clock directly in front of me. Is this my opportunity to watch time fly??? Nah, only joking, I get a great view out of the window of a beautiful sunny day, as long as I look left or right and not at the column straight in front of me - you have to take the good with the bad.
Disappointingly, I have a rather large panic attack when the cannula goes in. Buggered if I know why. I had a dual needle hit the day before when collecting bloods and didn't really bat an eyelid. There was no real trigger but all of a sudden it was like a freakin nightmare. My mind was screaming, my pulse raising, I was almost hyperventilating and I actually thought that I was gonna empty my brekkie all over that column in front of me. But it was all over in just under two - three minutes, and I am left wondering WTF? where did that come from and why?
My main goal for this journey (other than beating the big C) is to overcome this phobia. Marion & Anna (my CDU carers for the day) tell me that they think it might be wise for me to trial the tablets that assist with the disassociation in the head between the needle and the present. Sounds logical to me, and given Lisa was in on the conversation, I will diplomatically have no choice next week. I could be stubborn and say no but we all know that it will be far smarter to appease the "boss".
My main goal for this journey (other than beating the big C) is to overcome this phobia. Marion & Anna (my CDU carers for the day) tell me that they think it might be wise for me to trial the tablets that assist with the disassociation in the head between the needle and the present. Sounds logical to me, and given Lisa was in on the conversation, I will diplomatically have no choice next week. I could be stubborn and say no but we all know that it will be far smarter to appease the "boss".
Shortly after I am hooked up Lisa tells me she is off to Reception to go and meet my daughter Jayde, who has taken a break from her Uni to come and see her Dad in the "Fun Parlour". Now I have tried to tell her that there is not that much to see and do, but apparently tall Tom is not too shabby and defs not hard on her 20 year old eyes. Might have to pass this feedback on the the BF (or at least take advantage of the wonderful blackmail opportunity that just arose). How good is it to get visitors! No wonder I love my kids, having them be there for me is just bloody awesome.
I am totally spoiled today, because shortly after Jayde leaves (she has to go study) I am visited (Sandy if you read this please don't blush too much) by one of THE most amazing people I have ever had the opportunity to meet. Sandy is the Architect that worked so closely with me on the design and construction of the new buildings at school where I work - Woodleigh School. Sandy and her team are simply amazing. I am so incredibly passionate about sustainability and all that reduce, re use and re-purpose and Sandy is the professional equivalent of my passion. Listening to her speak, and watching her operate epitomises the vision that, if I had my time again, I would choose to do. I am thrilled to be able to simply sit and share non- work based conversation with her. Precious time spent with a special person. Thank you.
And just like that it is over. The juice bag is empty, time has flown by and I am heading off to meet my new Dietitian.
And just like that it is over. The juice bag is empty, time has flown by and I am heading off to meet my new Dietitian.
Dietitian
I am not sure just how I feel at not meeting with Elise, but I cannot be selfish and I am sure that I will catch up with her again before this adventure ends.
Meet Sarah. Sarah "replaces" Elise very well and we are soon deep in conversation about how well I am doing, what the feeding tube will do, how it will be impossible to know just what "tastes" I will appreciate as treatment progresses as everyone is unique and have totally different experiences.
Sarah tells me that the Head of Allied Health has basically heaped praise on Elise (Nutritionist/Dietitian) and Reece (Speech Pathologist) due to the comments I had made about them in my blog. Score!!!
If the Head of Allied Health is reading my Blog then I get yet another amazing bonus. If you are the Head of Allied Health and reading this please know that every person I have met on your team so far is awesome, and if you are enjoying the blog please feel free to share the s#%t out of it.
RT Planning Clinic
Check this picture out. The yellow circle in the centre of the coloured lines is my tumour. The coloured lines are the outlines of the dosing zones. HOW COOL IS THIS. I AM PUMPED. The closer to the "Target" the higher the dose. This information is just the stuff I need as it allows me to know exactly what is going on.
My tumour has receded yet again!!! Can this day get any better? It is now 2cm x 2and a bit cm. That is, according to my anal fixation with numbers, about a 50% reduction in size over the few weeks,
The RT Oncologist (don't forget Albert is away) tells me that everything is as should be and that the results are very good. I do have some ulcers forming in my mouth but otherwise everything looks fine. I am very interested that I have ulcers which I am unable to feel (unless I yawn or sneeze).
Now I banged on a bit yesterday about positivity but I ask you, with all the positive/bonus outcomes today, what else could I be. Someone actually asked me today if I just say everything is great, which was an interesting comment, but again if you had all the fantastic news snippets I had today would you not be positive? Glass half full stuff, not glass half empty.
So the final session of the day is my Wham. Bam, thank you Mam, RT session and this one just blasts by. Fair dinkum, I really think that at one stage I must have actually dozed off. Now I know that these guys in RT think I am some sort of wierdo, due to my liking of the face brace, but at the end of a long day, the inability to do nothing other than relax, lay still, close your eyes and have your face cradled firmly, but not uncomfortably, is not that bad. I did get a laugh when Guy (hope I got this right) thought the face brace had caused a cut under my left eye. I thought for a few nano-seconds about telling him it sure had, but given the work these amazeballs peoples do, I thought that it would be unfair and told him the truth - "Don't worry mate, it is a Cetux rash explosion site" that is conveniently located on my face right where my sunnies (sunglasses) frame rest on my cheek and so it constantly bursts whatever volcano's out of my cheek preparing to erupt at some inappropriate time.
Day started at 7:20 am; We arrive back home at 7:10pm. Long day and the fatigue hits the moment we arrive home and can finally relax. My folks arrive from Brissie tomorrow, but for now it is lights out. Thanks for reading this far. Hope it enlightens, informs, entertains and demystifies. Have a ripper day tomorrow. I certainly hope to.
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