My chronic MDS journey, symptom managment

[Chirley]

Julie, I'm glad you've given yourself a deadline to get better. If it's a virus it should be over by then.

Birgitta....no stamina required! I've booked a Suite with balcony and I'm going with my carer. I'm not going until mid March (hopefully still around then) but if I'm not able to go my ticket can be transferred and my carer can take another guest. I intend to spend a lot of time on the balcony enjoying the ocean flowing past and getting room service. I'm not too bothered about doing any shore/island visits, I'll leave that to my carer to enjoy. I just want to be able to see to the horizon. That's my part of the bucket list. I've booked the suite midships and top deck so hopefully it's really stable since its cyclone season.

[Julianna]

That sounds so lovely Chirley. I'm jealous.

Well, you'll be happy to know I'm staying the weekend at the Royal Melbourne Hospital. Checking & rechecking all my xrays & scan & blood results. I feel cared for. My fevers still not settling is no good after this long. I feel listened to. Hope they can get to the bottom of this soon.

My aim is to want to celebrate Christmas! Not to just feel better.

[Chirley]

That's reassuring to hear that you have been listened to. Or do I suspect a little bit of squeaky wheel?

Hope they sort out the problem for you soon.

[Julianna]

Thanks Chirley, I had a bad night of fever & low blood pressure . Has happened before but at least they know something is wrong & I'm not putting it on.

I'll be having a bonemarrow biopsy in a few days. So here's hoping they can help me not get so sick so often.

[Chirley]

It's just annoying it took them so long to take you seriously. There's something very wrong with our health system. It stinks to high hell at times.

It's not as if we don't pay through the nose in our taxes for it, we are one of the highest taxed countries in the world and then Medicare Levy on top. We were one of the few countries not to go into recession in the GFC...there's no damn excuse!

Sometimes I think we just expect mediocre treatment so that's what we get. We need to demand better. I've worked in the Public Health system and I've seen people sit on their backsides for hours every day whinging about how hard they work instead of just getting on with the work. Holding meeting after meeting trying to find ways to deal with the work loads instead of just getting on with it. Disgusting!

My ex haem used to say the same thing.

[Julianna]

Yeah good one Chirley. I need to be more confident in myself to stand up for myself. I do it in some kind of fashion but often rocked by others opinions etc.

I'm starting to have periods of feeling better but get unwell again when fever hits. Perhaps that's progress for now! Slowly slowly. Just bronchitis that needs to settle.

[Cheryl C]

I'm so sorry you have had such a difficult time getting appropriate attention for your fevers and illness, Julianna. When I read yours and Chirley's posts I feel very grateful that I haven't had those kinds of experiences here in Australia yet.

I transferred to John Hunter/Mater hospitals (haematology is at the Mater) in Newcastle a few months ago and can't complain so far. I was in the private system before and although the facilities were much more palatial and there were more staff resulting in more individualised care, I must say that the infusion centre in Newcastle haven't missed a beat (ie a vein) so far. I never have to wait more than 5 minutes beyond my appointment time. They are extremely efficient. My haematologist has given me a card which prioritises my triage status if I have a fever of 38 deg or upwards. I guess it remains to be seen whether that will translate into an appropriate response!

Season's greetings to you both and I sincerely hope you are feeling better ALL the time soon!

[Julianna]

Hi Cheryl, thanks for sharing that. I guess you never stop learning about yourself & how to help yourself get & stay well. And who & how to ask for help.

So much stuff for one little single lady!

I have found an awesome clinical MDS & lymphoma nurse. I'm in the country, she is in the big city hospital. I can email or call her & she gets back to me or advocates on my behalf. She's a gem! Like to but her a Christmas present. Really appreciate her care.

I'm having BMB tomorrow & more marrow donated for research also. Will see how my results are. Whether I'm eligible for drug treatment. Who knows what they'll do for me.

Thanks so much guys for being there. It helps a lot to talk with people who understand xo

[Chirley]

Cheryl...I was supposed to get the priority card etc but apparently I fell through the cracks and as I was unaware of the existence of my supposed case worker, chemo education etc, etc, etc, I didn't know, what I wasn't being informed about.

I have since found out there are a lot of patients who fall through the same cracks. Seems as if you aren't one of them. You're very lucky.

[Data]

Julie,
Good luck on your BMB today. Hope it is good news.

Cheers

Data

[Julianna]

Thanks Data, just waiting to go down ...xo

[Cheryl C]

All the best from me too, Julianna - will be waiting to hear how you got on.

[Julianna]

Hey guys, I'm gobsmacked. My chronic MDS journey is now more acute than we thought.

I have AML.

Will be moving up to Brisbane for treatment.

I guess this is why I feel so unwell.

I'm young & can get through this too.

Thanks for your support guys. Will keep in touch. Just need space to process for a while. Talk soon xo

[Cheryl C]

Oh Julianna - so sorry to hear this news, and yes, no wonder you've been so unwell! But you are right - youth is on your side! We are all with you in spirit and I am praying for you too. Please keep in touch as you are able.

Do you have family in Brisbane?

[Data]

Julie,
Sorry to hear this news. I guess that is always a dreaded fear of those of us who have MDS. You do have your age going for you. Best of luck. I am sure all of us on the forum will be thinking about you.


Data

[Julianna]

Yes I have family in Brisbane & that's where I'm from so have lots of support there.

Thanks guys xo

[Birgitta-A]

Dear Julie!
This is what we all are afraid of but as you wrote you are young and will manage the treatment. Good luck!
Kind regards
Birgitta-A

[Lifeguard]

Hi Julianna
So sorry to hear your news. My thoughts and prayers are with you. You have youth on your side and access to some of the best hospitals in the country when it comes to managing blood cancers, especially AML cases. My close friend has recently undergone a BMT for her AML and is already on the path to recovery. Keep the faith and keep strong.
Rachael

[Chirley]

Sorry to hear that Julie. But better to find out now than later on. Can't believe you had to pester them to listen to you.

What can I say......not a good way to have to come home.

PM me if you need anything or want some help I'm on the Southside but I'm sure I can get to RBH if I need to.

[Hopeful]

So sorry to hear this! Be strong! We are rooting for you!

[Julianna]

Thanks guys for your encouragement.

Thanks u Data, for your kind message.

I've got to fight this nasty infection/pneumonia before I can start chemo. My counts aren't too good. Feeling a bit anxious.

I'm in Brisbane now & seeing my folks today 😊

My sister has become my best friend.

Hope to start chemo next week. Transplant is my best option. But at least need to start chemo asap.

xo

[Chirley]

Welcome home Julie.

I'm pleased to hear you have your family around you.

Now, just to get that infection under control and that chemo over so you get into remission.

I take it you've met the infamous Dr Morton? The man who doesn't stand still? What about my old haem...Ashish Misra...I loved that man....so compassionate.

[JordanN]

Hi, Julianna,

I'm so sorry to hear your news but am glad that you are getting treatment close to your family! I wish you the best of luck with all of your treatments, and, please, keep up your terrific attitude! Feel better soon - I'm sending hugs your way!

[Julianna]

Thanks so much Jordan & Chirley.

I can't remember the name of the Dr seeing me actually. Too much going on. But I do know Dr Misra from my AA days.

I'm still quite uncomfortable with pain in my back from infection. And coughing is exhausting. Having lung biopsy or something on Monday to get to the bottom of my infection.

Had a difficult chat with Dr yesterday & my parents turned up just in time. Glad about that. Hard to walk this precarious road. Very high risk of complications. But have support around me & being in Oncology ward helps a lot too. They understand all the range of my emotions.

I'm having Chaplin visit this morning to talk spiritual things. Don't know where I'll be without my Lord. Thanks for listening guys xo

[Data]

Julie,
Hang in there!! You have lots of people thinking about you
Wishing you the best!!

Data