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.
Ohh. Maybe the time will fly by. Until therapy, use the time to baby your skin! Load on the lotion. Trap in the moisture. Take naps if you can. Some people get very tired as the treatments come to a close.
Thanks for stopping by and thanks for the tip! x
Just checked in to your blog to see how you were going. We met at Look good, etc. I am waiting for radio too, and had a tanty when told there was a delay. Onco gave me lots of info about a class action in Canada where the delay was long. I too am sick of seeing people other than the appt is for, and getting lots of info serving to cover the backs of the medical profession, but it seems this is the state of our health system at present. I will certainly keep asking when I can start after your experience. Sorry about your plans, I decided not to make any.
Ohh, I’m so sorry….I hear your pain and frustration loud and clear. It seems like so many things I planned this year have gone pear-shaped and stuffed so many people around. …friends, family, the 3 kids, husband, work colleagues…..
I agree with you totally about the ‘haves” and “have nots” in our country. If you’re urgently ill you will be seen to immediately and receive excellent care, but if not “urgent” then you’re at the whim of when they can fit you in and with whom. A lot of times this won’t matter, but for some things, it might matter even if they can’t see it….and it definitely leads to psychological distress. I feel quite guilty being one of the “haves”, so I’ve had surgery when I’ve requested, haven’t had to wait too long for an appointment with oncologist, surgeons, plastic surgeons, hospital of choice etc etc. It is really quite distressing to see that without this private cover I would be treated quite differently, and all this would be so much more hard work and distressing. Mind you, we will be thousands of dollars out of pocket at the end of all this and the debt will linger for quite a while as we find a way to gradually pay it back.
There is also that divide between rural and city location for receiving good care. I live in the Macedon Ranges and work in the city, so everything happens for me in town (apart from our local GP clinic which is great for urgent blood tests etc during chemo). But a bit further out and I too would be needing to use a regional hospital and they are just not resourced like the city hospitals. More of the “haves’ and “have nots”. I know these regional-based hospitals do their best, but they can only work with the resources they have been given and attracting specialist staff is always an issue.
That is too funny about your 2-year old posting your immediate ramblings. I saw that post and went to reply to it and it had disappeared. I didn’t think the typos were up to your usual quality standard 🙂
Feel free to vent away. I really hope you get to have your week away with the family. I had my last chemo cycle this week and am going away to the beach for a few days next week to celebrate….although it will be more of a recovery rest than celebration, as I still have major surgery ahead, details still being sorted out with surgeon/plastic surgeon, but could be double mastectomy with immediate FLAP reconstruction…..so not really in a celebratory frame of mind just yet. Roll on the end of 2013, eh? In my chemo fog today I’ve been planning the itinerary for a family trip to Europe next July (which I’d planned 3 years ago we would do when my long service leave came due)…..discount airfares have come up and I want to put us into even more debt and snap them up. It’s great therapy dreaming about it all, anyway.
Love your photo on this post…..hope you find a nicer flavour of tea soon.
Since I’m just up the road a bit further than you, it might be great to meet you one of these days. You’ve been posting and have been such a support to me. I wish I returned the favour to people but I haven’t had a lot of time in recent months to reply to people or read blogs. I assumed for some reason that you were from Canada and even while reading this reply I’m thinking wow, Stemgirl lives near a Macedon ranges too! Something about chemo brain? Perhaps I can”t blame it on that. Another girlfriend undergoing treatment in Canberra highlighted to me that it’s not just a public versus private Issue. Unbelievably, she could not access a surgeon in Canberra so had to fly her family to Brisbane for two surgeries and pay for accommodation and she actually has private health. I’ve understood the regional /rural city thing, but Canberra? Crazy!
Don’t worry at all about replying to or reading blogs…I’m very much like that myself some weeks. Your blog has helped me a great deal over these past few months – I’m so glad I found it when I joined WordPress.
Yes, it would be great to have a coffee or cup of tea sometime and meet you.
That is hard to believe about Canberra, but not surprising. I know at our hospital children are brought in from all over the country, from places that you would think they should have the facilities to treat them.
Oh, and never feel guilty for being a ‘have’ 🙂
Well that was a little more succinct than the last version. I have a BBQ which I will bring to you! In the meantime I am going to buy some string.
Why thank you Delta. x
Oh Lisa ….. That is just hideous, my nuking arrived on time, and that was before they closed off the car park opposite so I got car parks each day, luxury so now I am busy hot flushing with tamoxifen for the next 10 years, hope there is some peace for you soon
Ha ha Barb! You are living! Car parking and timely treatment. Hope you bought a Tatts ticket! I started Tamoxifen yesterday since radio has taken so long thought I could use some protection. Been waiting all day for something crazy to happen. I’ve been hot flushing for months just from the chemo! Go us! x
I’m so sorry. xoxox
I’m so sorry your treatment is delayed but it does seem you want all the benefits of the bucolic country life but not the realities of being further from health services? As a “have” I can tell you that your view of things being so much easier is perhaps a tad inaccurate. We all have choices and you’ve chosen the lifestyle that works for you…until it doesn’t!
My situation is very similar in terms of treatment and even as a “have” we are out of pocket by a significant amount…hence I take offence at the impression it’s all easy street for us “haves”….I know it sucks for you so not intending to upset you (or others) by commenting (for the first time). I have read your posts with interest and empathy and want only a return to good health for you:)
All the best
well mel basically told me to make a comment on her blog, whereas you have been thoughtful and not.
how about dinner, our house, thursday night..
I realise now how lucky I was with my treatment. I had my radiation thru Peter Mac. I stayed in their accommodation next door, and it was like a weekly holiday for 5 weeks. As I was staying next door I was usually first cab off the rank, then was free to roam Melbourne with my friend. I truly believe it was my friend who helped me cope so well as she wouldn’t let me out the door without her concoctions first to help my system cope. I also took Annie Aloe Vera plant with me each week and I would cut off a small piece of leaf and squeeze the gel from the plant onto my skin. The nurse was horrified, I should use a specially prepared commercial gel as “you don’t know what’s in your gel” hmm, I assumed it was straight unadulterated Aloe Vera. I sincerely wish you all the best with your treatment and keep an open mind to alternative type therapies that might be able to help you cope with all the medical profession throw at you. Sometimes I used to think they were the ones trying to kill me, not the cancer.
Just checking in on you. I miss hearing your tales of breast cancer brassiness! Have you been able to start the rads yet? I am on day 5 of treatment. So far so good, but I know I’m a babe in the radiotherapy woods. I read a book written by a female naturopathic doctor who survived breast cancer. I’m using a combination of lotions and gels that she swears by. It is arnica gel, Bach’s rescue remedy cream and Traumeel gel. I used an old cold cream container and mixed them in equal amounts. I apply it right after therapy and at night before bed. I’ll let you know if it keeps working.
How are you feeling from the Tamoxifen? That will no doubt be next on my list of party favors:)