My chronic MDS journey, symptom managment

[Chirley]

Hi Jules....sending positive vibes from my Southside hospital to your Northside hospital. I'm in 8S.

I feel very special ATM, they are searching Brisvegas for a 8f NJ tube to see if they can re open my stomach without surgery. So far they haven't found one small enough but fingers crossed. If they can't get one by tomorrow then it's surgery for me

I sure miss my fur babies.

My psyche has called in....he tells me I'm coping well. Little does he know I'm just too tired to care.

Well Jules, rest a lot, think good thoughts, and know we care.

Chirley

[Julianna]

Thanks Chirley, I hope u have come out the other side of your surgery or such. I'be just finished my induction chemo. Now just waiting & watching & trying to keep on top of infection. I'll be here another week or 2. I handled things pretty good actually. Nausea my biggest challenge & still quite tired. But I'm up & walking around.

Next thing is finding a place close by to stay & getting some support to help me there. It's complicated but my family can't be there all the time. Hope to organise a roster or something leading up to possible transplant.

[SLB]

Glad to hear you are hanging in there Julie. I found the chemo bit was easy compared to the constant fevers, rashes etc that I got when my counts were dropping/ non-existent. Hopefully your marrow will stick with the plan and come back as it should with no blasts.. Mine was stubborn... Refused to come back, but the blasts did! Can you access accommodation through the leukaemia foundation?

Good luck Chirley.. Hope they found that tube for you! How were the fireworks?

[Chirley]

Hi Julie, I'm pleased to hear you've come through the chemo... Now just waiting for the other shoe to drop. Hope you don't feel too bad when your counts bottom out.

If I remember correctly, when they built the new Lady Cilento Children's Hospital (which I'm looking at right now) they moved the Leukaemia Foundation accomodation village to near the QE2 Hospital and they run constant shuttle bus services to all the major hospitals. Have you got a LF case worker? If any one is entitled to accomodation in one of their apartments you should....after all you had to relocate from interstate to get family support. It doesn't hurt to ask....as you've found out lately...unless you make a noise, no one listens.

As for me...no I didn't see the fireworks. I was fast asleep...damn exhaustion, all types of intentions that never make reality. Oh, and I have a tube alright, it's large enough to feed an elephant through....ugh! Turns out my stomach was so twisted that a small tube would have just kinked off so I have this huge thing sticking out of my nose with a great big cm square clamp on it right on my nose to stop it feeding in further than 96cms then of course, just to make it more aesthetically pleasing, I have Elastoplast tape around the tube and over my nose as well as over the tube along my cheek. I'm not allowed anything by mouth at all. So I haven't even had a drnk of water since Sunday. I'm told this will be permanent unless I have some form of surgery which they are going to discuss today. I keep telling myself to stop being precious and just suck it up...but it's hard! I'm such a precious little princess!

AND I WANT TO SEE MY FUR BABIES!!!

[Cheryl C]

Hey Chirley - 45 years ago when my husband was hospitalised for weeks after a car accident I smuggled our 2 kittens into the hospital. Rod was in traction and lying on a sheepskin and they snuggled in with him quite easily. It was a wonderful boost. I totally understand how you must be missing your precious animals and how lovely it would be for you to see and have a cuddle with them.

I hope you don't have to wait too long for a solution to the stomach problem.

[vickij]

I will be Praying for you. It has been 1 1/2 yrs. for me & I still fear that it will come back. Your positive attitude will help you get through this

[Julianna]

Hey guys & thank you. Yeah counts dropping not nice. Not feeling the best this week.

I hope u are feeling better soon & u can see your fur babies. That's hard. I'm starting to understand why they call us patients! Perseverance very much needed. Nausea & exhaustion, not great.

xo

[Data]

Julie,
Wishing you the best of luck. Stay strong and beat this thing. You have your age going for you!!!!

Best of luck

Data

[Cheryl C]

Really sorry to read that you are suffering side effects from your conditioning regime, Julianna. I hope you can get some more support from family and/or friends. You are in my thoughts and prayers.

[Julianna]

I do have lots of supportive friends & family sending me messages & love. I have a new roommate preparing for transplant. All the talking is difficult to take. I have my earphones on. I just want some kind of normal day without having to think about my illness. Well part at least. I don't like to be a complainer. I'm sure the business & chatter will ease as the day goes on.

Seems like I'll be here for a few weeks yet. Need to make a lifestyle for myself here somehow. Like my days to be productive so I will remain happy & content.

Any ideas?

[Chirley]

Oh gosh, I know where you're coming from. I live a very quiet existence. My home is quiet, my life is quiet, I thrive in a quiet environment and then you are thrust into a shared room with a roommate who is either a non stop talker or has non stop visitors or their phone rings loudly ALL the time or even worse a combination of all of the previous things.

Have you had the roommate yet who buzzes for the nurses every two minutes wanting something really ridiculous? Have you been told their complete life history including who their first boyfriend was and how old they were? Have you been given an in depth soliloquy on their bowel habits? I had one room mate tell me that I should take myself off all convententional medicine and follow her natural holistic program for health and well being.....she was in hospital with morbid obesity, diabetes and kidney failure...like she was a shining light of good health!

My iPad with my music library and my earphones have saved my sanity on many occasions. This time my roommate had terminal lung cancer and was a very lovely lady but when she was moved out I was also moved to a private room with a great view and I spent the second week in hospital in blissful solitude, except for the nurses station which was right outside the door and became very noisy at staff change over times.

Came home this afternoon.....all my fur babies are just fine.

[Julianna]

Ha ha Chirley, yep I hear ya.

I like the quiet life myself.

So glad u are home! And with your fur babies.

I've been a bit anxious today. Learning I'll be in here another few weeks. And I feel like I'm getting a cold. And I don't like hearing about other patients struggles, it disturbs me. I'm sure I'll find a way through. Need a positive focus. Something normal & outside hospital.

Please... I pray. I just want some peace tonight.

[Sally C]

Dear Julianna,
I have been keeping up with your journey. You are such brave and courageous young lady.
I pray for your peace and healing.
God Bless,
Sally

[Chirley]

Julie, when all else fails I have a safe place I go to in my own head. Sounds mad, hey? Really it's just a meditation, visualisation, self hypnosis thingy I developed as a coping mechanism.

My safe place is where I'm lying on soft grass under the shade of a weeping willow tree by the edge of a calm lake or pond and I expand and concentrate on the minutest details from there. I can feel a prickle under my shoulder from a twig, I can hear a bird singing and try to find it in the tree, I can see water dragons skimming the water, I can see the sunlight reflecting off small ripples......you get the idea. The possibilities are endless. I have even done this while having painful procedures and incorporated the pain into my fantasy. For instance when having a BMB without sedation I imagined the part where they do the aspiration (the ouchy bit) was just a March fly stinging me. I swear, it gets me through some tough times.

You can develop your own visualisation technique depending on your personal preferences...I just happen to like the idea of lying by a still pond with just the sounds of nature around me.

I've been known to go off into this reverie for hours at a time....so relaxing.

Okay call me mad....but why not give it a go...nothing to lose.

[Julianna]

That doesn't sound mad Chirley. I sometimes do it myself. I love music too & can get lost in it. I'm finding little ways to get through. Don't know where I'd be without my faith. I still struggle with anxiety ay times but like everything else, it passes.

Thanks xo

[Julianna]

I feel like I'm going crazy. Been slowly getting tired of hospital food & while i've had a few visitors, I still just need to get out! Little things bother me. I've just changed rooms for the 5th time & got someone else's breakfast. I just cried. Then had a big rant to the nurse & asked to be disconnected today. I didn't care what Drs said. Turns out they are letting me out this arvowhen my Mum comes. But really hate this.

I 've been in & out of hospital since Nov. And right now been in for 4 weeks. I know many others are in for much longer. But I don't have anyone by my side. Only a visit for an 1hr or so every few days. I'm lonely. And sick of my lack of choices!

Rant over.

[Chirley]

Julie, I think it's all got to do with letting go of control. I think the very fact that you are still fighting to have control over what is happening to you is a positive thing in your battle against this disease. The Doctors might not see it this way just at the moment

[Julianna]

Very sore throat, hard to talk, eat, drink. Possibly mucositis. Spiked 39+ fever last night & waiting for test results for source of infection. Not happy Jan. Hard to keep on top of pain. Hope for solution by end of day.

[Cheryl C]

Thinking of you Julianna. I hope you find some help with this soon. If not I can't recall whether I've already sent you this link about manuka honey (Medihoney in Australia) to consider:

http://www.express.co.uk/life-style/...-survive-chemo

[Julianna]

Thank you Cheryl, I will check it out.

I went down for a 1.30am CT scan & I'm getting anxious about what they might find. I need platelets again for some reason & I'm worried the leukaemia is hovering over this whole thing. These are like the fevers I got at home before diagnosis. With lymph nodes up & not quite blood count recovery. I'm very uncomfortable.

Will see what the scans show tomorrow. Thanks for being here, in the middle of the night xo

[Data]

Julie,
Haven't heard from you in a while and was worried about you. I would send some Florida sunshine your way but we haven't seen much lately. The locals might get upset if I gave away what little we had. Instead I am sending cheery thoughts and best wishes. Hope this lifts your spirits!!!!

[SLB]

I inboxed Julie last week and haven't heard from her either... So am also worried. Thinking of you Julie.. Hope you are doing ok.

[Cheryl C]

Praying for you, Julianna.

[Chirley]

Got us worried Julie. You ok?

[Data]

Has anyone heard from Julie? Anyone know a way to check on her?
Just worried about her.

Data