Anyone for a nice cup of
tea psychological distress? It’s been brewing for weeks. It’s a strong dark brew with the most bitter of flavours. The blend is called “radiotherapy delays” and it’s served steaming hot for your enjoyment this afternoon. It might burn the skin of your delicate mouth which will annoy you for days. So be careful! How do you take it? One lump or two?
Tea aside, “psychologically distressed” might be a bit of an understatement at the precise moment my lovely radiotherapist used the phrase in our phone call after disclosing my five weeks of radiotherapy won’t now start till October.
“The delay to your radiotherapy must be psychologically distressing to you” they said. They must have to use the term quite a lot in empathic calls with desperate cancer patients.
“There is nothing I can do. We’ve got so many people waiting and it’s an incredibly complex treatment process to plan for. People have different treatment priorities, resources are stretched. We have issues with machines which gets us further behind.”
“Look if you want to have radiotherapy this week we could arrange for you to go to Melbourne. But of course you’d have to pay and find accommodation for 5 weeks” they said.
In my post phone call “psychologically distressed” state, I immediately opened up my iPad, and I managed to write some rambled, confused misspelt points on the WordPress iPad application. I felt clear headed enough to put it down and went and made lunch for myself and the kiddies. An hour later, and to my complete surprise, I began getting comment notifications for a blog post I wrote called “Psychological Torture” on my iPhone. Turns out my two year old published my ramblings on his way to finding an episode of The Octonauts. It’s true my two year old knows how to open crap on the iPad, and is a now a fully fledged publisher. There is a lesson there, obviously. But I’m still drinking my nice cup of psychological distress so am not quite ready to address it.
After this news, I think I might need an after hours psychologist on call. Is there such a thing in Australia? Or is it only available to people who pay for private health? Maybe I just need a bottle of wine. Do they sell nice bottles to public patients or do they have to line up and wait for the grapes to be crushed? Have the public grapevines even been planted yet? Who knows!
Welcome to Australia’s two tiered healthcare system which services the “haves” and the “have nots”. Where there is room for you today if you’ve got the dosh or live close to a capital city on the coast. It’s only taken me 9 months to begin to see myself as a “have not” in the big business of healthcare, which is probably a pretty good run. I am naive though. Often strolling along with my ideals about access to great public health care and education for all, yada, yada, yada.
Back in January and February I could not fault the care I received at a large publicly funded Cancer hospital in the capital city a 300 kilometre round trip from my house. Since coming home to my large local hospital for chemo, there were some faint whiffs of “have not” status with respect to some oncology appointments that never actually delivered an oncologist on the day. They were too busy to see me they said, so I was seen by a nurse practitioner. Don’t get me wrong, the care of the nurse practitioner was excellent, as was the care of the chemo nurses. But I was left feeling like I wasn’t getting basic care that I should have been getting and this was very unsettling. Was it even necessary to have an oncologist in chemotherapy? Perhaps it wasn’t!
I have endured gravy soup, many two hour waits in waiting rooms, and appointments with someone different than the medical professional I was booked in to see. Back in January I wasn’t given an MRI because the wait list in the public hospital for it was so long it could have meant my tumour would metastasize. The surgeon whipped it out of me instead with an instant recon and told me of this dilemma in June. I wasn’t told I could have paid 1,000 dollars for an MRI at the time and had it within 24 hours. So now I’m having the less than ideal radiation of a tissue expander that shouldn’t have been inserted. These ‘cock’ ups don’t occur in the private sector. Tests are arranged and decisions are made based on results. Money talks very clearly.
I finished chemo in mid July, had another surgery mid August and was told radiotherapy would start within 2-4 weeks after that on my non surgical side. It was discussed that there sometimes were delays, but they would do what they could to move me through. So I went ahead and made plans. I planned holidays, I planned a timetable of generous people to care for my kids in the daily hour I was having radio across five weeks and those people made plans in their lives and so on and so on. Big mistake!
On the 3rd of September I was measured and tattooed for radiotherapy. Then, I was told it might be another two weeks till it started. I was given an open appointment time. They will call me they said. Of course, as the weeks rolled on by and anxiety levels climbed, it got harder to wait by the phone or put life on hold while waiting to start rads. But my curiosity got the better of me and I called them today. And today, I was given my start date, (which I’m sure they just made space for me because I rang and hassled them). Had I not phoned I might have been a long way further down that list. Frightening!
I’m not even going near any thoughts of what this delay means for a grade three cancer grower like me. They probably don’t even know. Studies have only looked at women over 65 with breast cancer and with delays to their radio from chemo or surgery to rads greater than 31 days leading to poorer prognosis.
So since I’m not taking a boot load of cash to Melbourne to pay for radiotherapy and uproot my children for five weeks, I’ll just wait for it. In the meantime, to clear my mind and release some frustration, here is my list of apologies I need to make as a result of EXPECTING radiotherapy to start in a timely and optimal treatment kind of fashion in the public system.
LIST OF BIG ARSE APOLOGIES TO PEOPLE I STUFFED AROUND BECAUSE I’M A PLANNER BY NATURE (in no particular order)
- To Mr Cool. About your surprise 40th birthday party. Sorry I didn’t plan one. I thought I was going to be having radio and be too tired to plan and attend this and keep it secret from you given it was in the last week of radio. Now it’s in the first so it wouldn’t have been a problem after all. Two weeks might be cutting it fine to get the invites out, the big cake ordered and venue booked! Oops. Sorry about that! Perhaps a surprise 41st?
- To my Mother in law, it would have been great to see you go on your trip with friends to China. I’m humbled that you withdrew from this so you would be around for us while I had radio. Seems you now could have gone after all. I’m really, really sorry about that! Hope those Facebook pics of your friends on the Great Wall don’t hurt too much! Sure, you could have lunch with your friends to pass the time… Oh that’s right, they are in China! Maybe a Skype?
- To my friends who also planned to give up their time in the school holidays to come and look after our kids while I had radio, you won’t be needed now. Hopefully you can arrange some exciting last minute holiday activities for yourselves if they haven’t already sold out! Good luck with that!
- To my family, I’m sorry that the beach holiday accommodation we planned for the first week of November once my treatment was over has to be cancelled as I’ll still be having radio then. It’s not like we need a break or anything. There is always next year!
- Apols to my oncologist, I’ll get onto the Tamoxifen I should have been taking for let’s see, a month already but didn’t as radio was imminent and we didn’t want the side effects of both to hit me at the same time! Oops-a-daisy! Better get pill popping!
- To my husband, children and our dogs, I apologise for all of the cups of psychological distress I’ve been drinking lately.