What happened to the calendar?

[harker]

I have to go in on Friday 3 December for the day. I didn't know that. I've arranged to go out that night. The note from the hospital says I need someone to pick me up and bring me home and stay with me for the first night. Well, I didn't know all that. What happened to the calendar we had for these things? I don't like it being next to your desk. It's inconvenient for me to write all my goddam appiontments on it. It needs to be more acceessible. Well where shound we put it. I don't care. Don't be cranky. Well, look, I can barely keep up with all this shit myself let alone keep you up to speed. I had the urologist yesterday morning, the renal specialist this afternoon and I have to have a blood test for the oncologist today as well. Then I se the oncologist next Thursday and go into hospital for the procedure on Friday and I see the psychologist on Saturday. Then on the next Friday I see the physician and I will have to have fitted in another blood test for that as well. What the hell does everyone want from me? OK. Let's find a solution. Sorry for being so cranky.

[Jules2]

Harker I am cranky too! I made an appointment for this week and then received in the mail one for next week. Now that means I have to travel to Perth this week and twice next week. am grrrrrring and someone has made another appointment for me for this week when i will be in perth. No one has consulted me in any of this. Pissed off! scuzee the language :D and ... somewhere in all of this I am supposed to be finding a new job! and clement ate my mondo grass which is really slow growing and was just starting to look good!

[Jules2]

Hi Harker You might find this an interesting read. :) http://www.newscientist.com/article/mg20827870.100-why-health-is-not-fit-for-purpose.html Julie

[harker]

Thanks Julie I found this article to cover some of the same territory covered in Better Than Well: American Medicine Meete the American Dream by Carl Elliott. Maybe I am lucky but I have found my health professionals in Melbourne over three and a half years to be a quite sensitive and responsive group of people. I sling off at the situation, but have had few problems with their approach to me as a patient. Better than Well looks at our efforts to maximise health, everything from tanning salons to cutting off limbs perceived to be alien. Very interesting. H

[Jules2]

Hi Harker I am the same really, in that once I was diagnosed I have received exceptional care clinically speaking. Just the peripheral bits that need a tad tidying up, just my opinion of course. I highly doubt the people that have changed my appointments realise that now instead of 400kms I will be travelling 800. Luckily I can drive myself there even though I still get very tired. I liked the article because it encompasses more than just clinical treatment. I liked the sound of your book?, it is good to explore all options, experiences and or problems. thanks Julie

[samex]

Julie, I warned you about the animals!! I hope you don't have a vege patch. The now relocated possum in our yard, spead itself on the netting on our vege patch and silently devoured to broccoli. Didn't like spinach. Harker, you have every right to be cranky. The constant juggling of appointments can be exhausting. i am fortunate that my appointments are now fairly spread out but with working and my kids' specialist appointments, life becomes frenetic at times. Stop the world, I want to get off has been my mantra for the past 2 weeks. Hope things are improving, S

[Jules2]

lol S ... I just got home from visiting a friend and shopping and omg. The male goat has got to go! He keeps head butting me and then he jumped in the car closely followed by the baby goat. Luckily the sheep looked on from afar! They all had their heads in the shopping bags and I am kind of glad I will be away for a couple of days this week. The boys can take care of the goats! Hope your merry-go-round settles to a nice pace for you soon.

[craftyone]

Hi Harker, Julie and Samex, It is never fun trying to juggle all the things that you have all been juggling. Harker, find a nice noisy train bridge and scream your lungs out, if not have a good laugh at Julie's goats problems, ha, ha. I remember a saying by a former Prime Minister "Life Wasn't Meant to be Easy", when my mother was very sick, Dad would say "But it Wasn't Meant to be THIS Hard". At times I agreed with him, especially when going through combined chemo and radio, and when a so-called friend said that she couldn't visit me because I didn't know from one day to the next what time the radiotherapy was going to happen. I think that you have a very trying time coming up, Harker, and you will just HAVE to let off steam now and then. Hope you keep your particular brand of humour and that it helps you "muddle" through this trying period. lol, craftyone

[harker]

Thanks. I'm off to hospital this afternoon for a few days. I have The Wounded Storyteller by Arthur Frank to read. H

[kittycat]

hi harker, i can totally relate. i have been diagnosed with salivary duct carcinoma and since have had surgery to remove it. i have to wait 6 weeks but i am supposed to start radiation and chemo dec 2. i've got so many appts already my head is swimming. i live 2 hours away from the treatment area. before i left the last time, appts had been made but then someone came along and reschedualed the appts without even asking me if it would work for me, some of them being 730 am. i called the number listed to discuss the appts and kept getting transfered from one phone to another being long distance i finally hung up. i'ts not like i have all the money in the world to spend on phone calls and i am working on finding an affordable place to stay. i also have to be mindful of my father who is helping me with transportation and fit in with his scheduale. i am just so frustrated, i just wish someone would ask me what i would like for a change rather than have everything dictated to me. i don't want to be all negative, the care when i am there has been ecellent but i am so overwhelmed by it all. i feel pretty good right now but nervous about what side effects i might have later. thanks for listening to me rant also. take care

[Jules2]

Hi kittycat Another country patient here, if you want to rant about appointments and such please feel free to contact me. I found that most city people don't have a clue and one suggestion was I might like to catch the train. I laughed at that one because it would mean me getting at 4.30 am to be able to get there and then having to get my 82 year old mother up at 5am to give me a lift. I live approx half an hour from her ... hence the time frame diff. All of this to travel under the proviso that I would get treatment if they had a bed available. We are already under enough stress without having to travel all that way with no guarantee of being treated. It is overwhelming at times and I felt exactly the same as you. Hang in there and before you know it you will be coming out the other end. I hope you have a cancer nurse to help out with coordinating your appointments, mine was invaluable, although she could only work within the system. Julie

[#12]

Hi Kittycat, Yes can understand you wanting to vent the frustration,I am a suburbia person in Perth and still had issues,I would have to get a bus and train to travel for Rad treatment and 2hrs plus of my time,not as bad as you country people but i do understand and always gave my appointment time away if asked, I ended up driving to RPH and forking out 5 dollars a day in parking and that's after the subsidy, so go and vent as much as you like as i am with you. Please keep us all informed and we will keep you positive through your treatment. Cheers Dave