Copper treatment

[SLB]

I Hope you are continuing to improve, Chirley. How long now until your cruise?

[Chirley]

Thanks Sharnie, I'm well. The infection is completely gone and my neutrophils are higher than they've been for a long time so it looks like it's full steam ahead.

I've been given some antibiotics to take with me "just in case" and an emergency kit to replace my feeding tube if I need to along with all my feeds, pump, syringes, lines etc so I'm a travelling medical supply person but I have a covering letter to get me through Customs.

Have you seen the size of the cyclone brewing off Vanuatu? Good thing the GP also gave me a prescription for sea sickness tablets! Apparently they are predicting a monster. Somehow I think our cruise might be detoured from French chic to New Zealand sheep. I don't mind either way. NZ is beautiful.

I'm still reeling from Julie and Birgitta. I'll have a good time for them.

[SLB]

Good to hear Chirley. I am excited for you. I have booked a cruise to celebrate my 40th (which I was dubious I would reach a few years ago) in October. Always wanted to go on one so hopefully I will continue to stay well. (Just turned 2 on Friday! And all seems well ATM)! Yes weather looks potentially chaotic! I will cross my fingers for you!

I agree with you... I must admit that any time one of the forum members lose their battle or even struggle, it leaves me reeling! Did you actually hear anything definite about Julie?

[Cheryl C]

Chirley - I am so happy for you. May this state continue! And yes, NZ is beautiful if you can't make it to Vanuatu.

Do you remember which hospital Juliana was in? I seem to recall her mentioning the Wesley? I wonder if we could phone and ask, or do you think they wouldn't respond to those sorts of questions?

[Chirley]

Jules was in the Royal Brisbane. It's the only one in QLD that does Allo BMTs. No, it's not 100% certain that she hasn't made it but there has been some unverified accounts from two different sources now that she lost her battle.

I come on here all the time hoping she comes on here and says she's been MIA because she was in ICU battling infection etc but the longer we don't hear anything, the more I have to believe the reports I heard.

Sharnie.....October is a bit more sensible for cruising....not cyclone season! I didn't want to leave it too long to take my cruise because I wasn't sure how well I would be later in the year, so I took the risk and booked in cyclone season. Oh well, might add to the fun. BTW, congrats on turning two.

Cheryl, I'm not going to Vanuatu, im going to New Caledonia. The cyclone is supposed to be between Vanuatu and Fiji I think but the seas will be pretty rough as it's supposed to be a 4 or 5. Maybe it will have blown over by the time we get there.

I'm pretty sure due to privacy reasons there is no way we could phone the hospital and ask however, Jules should have had a Leukaemia Foundation caseworker so perhaps the Leukaemia Foundation Queensland may be able to give some information.

I've been all hyped up about this trip and battling infections and second daily visits to the doctor and lots of shopping, I had managed to gain quite a bit of weight on my enteral feeds and gotten to 51kgs but have dropped to 48kgs again over the last few weeks. So I better have some empty calories on this trip and consume a cocktail or two

[Sally C]

Hi Chirley,
First of all I wish you the best on your cruise - you certainly deserve it.
With regard to Juliana - could you do some type of search to see if there is an obituary about her?
Best wishes,
Sally

[Cheryl C]

Chirley - I will contact the Leukaemia Foundation here and see if they are able to check Juliana's status for us. I find them tremendously helpful. I only found out after we moved here last year that free transport to hospital for my infusions and haematologist appointments is available and have taken advantage of that as I don't like driving in city traffic.

[Chirley]

That's just it Sally. There was a death notice for a Julie Anne from the area where she lived, same age at around the time she went MIA with donations to be given to the Leukaemia Foundation. A little too co incidental.

I was also talking to a person who was a patient in the RBH who said a young woman named Julie had passed away while she was admitted in there in February.

So, not 100% verifiable but it doesn't look good.

[Sally C]

I didn't know this Chirley. It sure doesn't sound good. God Bless her. Thanks for the information.
Maybe Neal could have an option to give contact information of someone close to those on the forums in case they are not able to post for themselves - or ask those on the forums to give their user names and passwords to a friend or family member who could post in their place.
Thanks again and take good care,
Sally

[Cheryl C]

Oh that's very sad.

[SLB]

Wow I didn't know that either.. I agree, a bit too much to be coincidental. I am very sorry to hear that.

[Chirley]

Close call....

Got numerous texts, emails, calls from P&O last night saying that due to the weather conditions NOT to present to the cruise ship terminal because the ship was unable to dock and to await further instructions. I tossed and turned all night. At 6 this morning I got a text saying the winds had eased and they had docked and we are going as planned

There was a little addit that the itinary may be changed due to the cyclone having impacted our proposed ports of call and our proposed route. So it may be a mystery trip.

But....at least I'm going and today's the day.

[JordanN]

Hi, Chirley!

So glad your cruise is going to happen! I wish you a wonderful trip with lots of relaxation, amazing ocean views, and beautiful weather! Have a fantastic time - can't wait to hear all the details!

[Cheryl C]

Have a wonderful time, Chirley! Safe travels and I look forward to reading where you ended up when you get back.

[Marlene]

How exciting.....have a great time.

[SLB]

Hope you are having an awesome time! Nice and relaxing, with nice, calm weather for you!

[Cheryl C]

Chirley - re Julianna, after speaking to my local Leukaemia Foundation I phoned the foundation in Brisbane but they were unable to give me any news. She is not on their records and because of privacy issues they are not able to contact the hospital to check.

[Annettec]

I am relatively new to this forum and I must admit being so amazed at how the sum of the parts is so much stronger as a result of this amazing forum. When someone is struggling and needs support, everyone rallies and collectively lifts the person up, conversely, when someone has great news to share, everyone is so quick to join in their joy. So heart-warming.... bless all of you wonderful people! I will forever be grateful for discovering, by chance, this wonderful forum. As a caretaker ( my mother was diagnosed less than a year ago and currently undergoing vidaza treatments) I have found this outlet to be the most helpful to calm my fears, give me hope and ultimately provide me with the necessary knowledge to be a better support for my dear mother in the process.

For now, I feel like I am only at the receiving end. I sincerely hope one day I will be able to pay it forward through this forum.

God bless all of you, et bon courage! Huge hug from eastern Canada!

[Chirley]

Welcome Annettec, sorry you have to join us.

Cruise....✅

Infected feeding tube...✅

Chest infection....✅

Sinus infection......✅

Great time anyway......✅✅✅✅✅

I saw the surgeon today who changed my feeding tube for a new one, I was dreading it but before I even knew it was done the old one was out and the new one was in....just some bleeding from the stoma. He's placed a bit of pressure on me to commit to a surgery date. I haven't even had the courage to tell my physician I'm considering (well, I told him I'm considering it but made it seem like sometime in the distant future) stopping treatment so I couldn't tell the surgeon I wouldn't be having surgery because I may not be around to need it! Ive already missed one lot of treatment without any one creating dramas so I may be able to procrastinate a while longer. I'm already feeling the effects with the minor infections and now I've developed a constant low grade fever.


I'll start this next part by saying that I DO love my parents.


I had a visit from my father today who became very angry with me for not having treatment. He stormed out in a rage. I would normally feel bad for him but I just can't feel anything. How selfish of me! I wish I could feel some compassion for him but somehow it's just gone and now when I look at him there is just emptiness........

[Cheryl C]

I'm really pleased that you enjoyed the cruise so much, Chirley.

Only you can and should decide what to do about treatment. It's good that you are staying strong enough to make your own decisions. Are you on antibiotics for the infections?

[Lifeguard]

Hi Chirley,

Great to hear you had a wonderful time on your cruise. I tried to convince my husband what a great idea it would be to go cruising but alas I have not yet succeeded. Where did the cruise take you to?Did you stay out of Cyclone Pam's way?

I too have come down with a nasty viral infection, and after a week of having a constant sore throat, sinus and respiratory issues I am now on two antibiotics to get it under control. This is the first time in years I have been so unwell. There has been a warning that the flu experienced in the Northern Hemisphere countries is now in Australia and is pretty nasty. I should of been extra vigilant because I recently asked for my blood results ( 3 months worth) and even my WBC went down to 2.6 and it usually averages around 3.9. My Neutrophils have been under 1 for a while now.

I have been training for the last six months to do a race called the Adventurethon (12km paddle, 23km bike and a 12km run)but with still experiencing low grade temperatures I had to pull out today. The race was this weekend. I'm dissapointed but there's not much I can do about it now. I also missed out on attending my first Leukaemia Foundation patient morning tea because of this infection.

I have been on Lenalidomide for four and half years and have now developed neuropathy in my feet. If it gets any worse I'll be sent to a specialist. It was so bad one night I stuck my feet in a bucket of ice water and my feet still felt like they were burning! When do you think I should start taking my neuropathy symptoms more seriously?

It's good that you know what treatment you want or don't want. Independence and knowledge is key to being happy and knowing what quality of life you want.

I'm so glad you had a great holiday.

Cheers
Rachael

[Chirley]

Hi Cheryl and Rachael. No I'm not on antibiotics. I took some on the cruise with me and I took them for the tube infection while on the cruise because I didn't want my travelling companion to feel concerned but I stopped them as soon as I came home. I'm not going to take anything from now on unless I change my mind and decide to resume treatment.

Rachael we left Brisbane went to Noumea, Lifou and Port Vila except cyclone Pam beat us to Vila and it basically no longer existed so we spent two days in Noumea instead. No one liked Noumea...they all said it was nothing but an expensive, boring waste of time with nothing to see that you couldn't see anywhere else and with people who pretended they didn't speak English if you asked them a question. The taxi drivers weren't interested in carrying tourists. Lifou was more like the tropical island idyll. Coconut trees, sandy beaches, lovely people, coral atolls for snorkelling. Everyone who had been before said that Vila was beautiful and it was devastating that it was so damaged. They all said the people were beautiful and friendly and welcoming. It sounds as if the best way we can help them is to visit them as tourists and spend our tourist dollars there to help them rebuild.

As for the cruise itself. It was rough the first two days because we sailed into the cyclone but I thoroughly enjoyed that. The entertainment on the ship was varied. There were seven different bars. From an English pub to a cocktail bar to a karaoke bar. There was an outside deck big screen movie theatre. There were live stage shows. Of course, the casino. Lots of trivia comps. Lots of spa and fitness things. I had a facial, scalp massage, relaxation massage, reflexology, manicure and pedicure and an eye treatment. The food is excellent and the table service makes you feel pampered. (All included in the price) You can dress for dinner or be smart casual...its up to you. Then you can sit by the pool and sip a cocktail or eat a NZ ice cream. Room service menu is limited but quite cheap. The wine list is also limited but still good although a bottle of chardy that would probably be $16 at the bottle shop is about $30 on board. Cocktails are between $12 to $15 each. We had a mini suite so we had a dressing room a cabin with twin beds and a bathroom with a toilet, vanity and shower with fold down seat, and double glass doors onto a balcony. It came with a safe and a fridge and lots of wardrobe and drawer space. We were given a fresh fruit bowl every second day and chocolates on our pillow every night. We were occasionally surprised with canapés etc delivered to the cabin.

You HAVE to budget for substantial tips for the staff. They work 12-14 hour days, 7 days a week, 8 months a year with no days off then they have 4 months off with NO pay. They are mostly Phillipinos and I suspect are not paid anywhere near our Oz award wages. They depend on the gratuities to get them through the four month lay off with no pay. And no, they have to pay to use the laundry facilities, for bottled water etc, etc. no perks for them. It made me realise what a wonderful country we are lucky to live in.

Spoke to my GP today. He gave me a blood form today with a rule 3 exemption which means I can have a blood test done whenever I want one without having to get a request form from him. He has agreed to monitor my condition while I'm not having treatment and to respect any decisions I make. He's also agreed to provide pain relief if or when the time comes. I'm still not decided. Maybe I'm just tired and ill feel differently later. Never say never.

[Cheryl C]

Yes - It's very sad what's happened to lovely Vanuatu. Fortunately, places in the warmer climates are quicker to respond with new growth, but I think it will be a long time before things get back to "normal" there if ever. Most local people are already poor, rely on their gardens for food, etc and this will be a giant set-back.

Glad you were able to be pampered on your cruise, Chirley. You obviously have many happy memories to reflect on. How fortunate you didn't suffer from sea sickness.

I do hope your break from drugs and other treatment does you good. It's very brave of you, but then I think sometimes the relentless routine can be a stressor in itself.

I don't have anything to deal with compared with your usual regime, but was just thinking today that it would be nice to take a month off having an infusion. I tried going 3 months once and my globulins dropped right back and I started to feel unwell but I reckon I might be able to go 2 months OK.

[Chirley]

Cheryl, two months off would be a great break. Even if you only delayed the infusion by two weeks and had six weeks off. Sounds good to me.

I have other stuff going on in my life that is rather stressful so I can't really escape anything for very long. As desperate as it seems, I've considered euthanising my little dog (when I left her in someone else's care on my cruise, they treated her badly) and just packing a bag and catching the first taxi out to the nearest train station and go wherever it takes me. I'm sure I could rent in some small town somewhere until I died. I just crave peace from everyone and everything. I can't tell you the last time I woke up in the morning without some do gooder, sticky beak, pain in the proverbial....letting themselves into my house and start fluffing around with things in my kitchen or lounge or even worse just coming unannounced into my bedroom as if I have no rights in my own home. It's not as if I haven't told them (and yes, there's more than one) not to do it. I've set boundaries, I've explained how it makes me feel, I've begged, I've yelled, I've done everything I can think of to stop this invasion of unwanted do good ers but they keep on coming and undermine every bit of dignity, privacy and respect I've ever had. I moved out of my parents home when I was 17 and I lived by myself for the next 40 years. I enjoy my own company. I HATE waking to inane, loud, nonsensical chatter about something as stupid as who was wearing what at the Oscars....I mean really...who gives a s##t! They're actors for Heavens Sake...who cares! I swear the sheer banality of the monotonous drone from daylight to after dark is enough to drive me demented.

I can't stand hospital treatment any more and I'm not getting any peace at home. The more I withdraw from people the more they insist on smothering me. Any suggestions?

[Cheryl C]

Thank you Chirley. I should be able to try this in May as we will be away for a couple of weeks and I can just put off the infusion till we get back - that will put me 3 weeks over.

Just lost all of a long response to your frustrations so this will be briefer since I have in-laws arriving soon.

I think my best advice re getting out of the bedlam (which I totally resonate with - can't stand noisy inane conversations, and privacy is vital to me too) is if you can afford to go to a health retreat. They are usually pretty switched on with people's need for quiet and privacy. I know of three but none are in Queensland. They are:

Cedarvale - http://cedarvaleretreat.com.au/ (I know the GP there - he's very caring)
Highwood - http://www.highwoodhealth.org/ (Have visited and eaten there - the food was excellent, but then I am vegetarian). They have a GP attached.
Misty Mountain - http://www.mmh.com.au/ (Have watched their health dvd's)

This is the best option I can think of, my friend. My first thought was you should buy a small campervan and take off, but I imagine that would be too hard for you.

I'm praying that you will be able to work out a solution to these difficulties, Chirley.