Jane's Rainbow: for all needing support & comfort

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 08 Jun 13 - 12:25 PM

My thoughts at the very moment are with the two ducks I just saw waddling up my street. They were carrying a canoe and had life jackets on. 10C, real wet and darn windy.

QUAAAACK!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: frogprince
Date: 08 Jun 13 - 11:36 AM

Checkin' in almost every day, swabbing a little of the deck at a lazy pace, and noting those to whom I will be sending good thoughts.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 08 Jun 13 - 11:24 AM

Checking in & wishing well to all those good Folk who visit, but choose not to post. You are most welcome, nevertheless.
                                           With Love,
                                                          Nigel.
                                                          xxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 08 Jun 13 - 06:20 AM

Me too, maeve... me too. >;-|

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,Maeve, away from home
Date: 08 Jun 13 - 01:38 AM

Refresh...Holding each one here in my thoughts.

Maeve

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 06 Jun 13 - 04:12 AM

My apologies, Paws. I missed your obit thread About Terry Conway. Regardless of the fact that you didn't know him well, another sad passing & I am grateful you've brought it to our attention. He may be gone, but his Music will live on.
                                           With Love,
                                                          Nigel.
                                                          xxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 06 Jun 13 - 04:02 AM

Sincere condolences & loving thoughts to Terry's Wife, Family & Friends. Another good Musician gone to the Great Concert in the Sky. Paws, thinking of you too. From your post it sounds like you knew Terry well.
                                                 With Love,
                                                                Nigel.
                                                                xxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 05 Jun 13 - 10:06 PM

still here.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 05 Jun 13 - 09:51 PM

My sympathy to Liz. Nigel, whatever treatment you pursue, I hope it helps more than it hurts. And Pete, I hope Tommy continues to do well.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 05 Jun 13 - 03:08 PM

sorry to hear that.good to hear that there is lots of support.how valuable are loving friends.
wishing you wisdom virginia tam as to best treatment.   
tommy is doing well at present,thanks wendy.   blessings   pete.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 05 Jun 13 - 11:44 AM

Condolences, Ts&Ps, Paws.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: catspaw49
Date: 05 Jun 13 - 09:02 AM

Good thoughts and condolences to her and those who knew him best. Tough news for you Paws......so sorry.


Spaw

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 05 Jun 13 - 09:02 AM

sending love & good wishes her way

sandra

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Wolfhound person
Date: 05 Jun 13 - 08:52 AM

Unfortunately, I've just heard that Terry, a fine Northumbrian singer and composer, died last night in hospital. His wife Liz has an excellent local support network, but I'm sure a few extra thoughts for her won't come amiss at this time.

Paws

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 05 Jun 13 - 07:19 AM

Able Seaman Paterson checking in. A very warm welcome to Tamara; a good place to 'sling your hammock'. I can empathise very strongly with your situation. I was diagnosed with PMR some years ago & for the last two years have been trying to 'taper off' the steroids, which, whilst they relieved the PMR symptoms, have caused permanent or very slow to recover from damage (Diabetes, Osteopœnia, Fatty Liver, Depression). So far, I've made three attempts, each of which takes months, because the tapering has to be done so gradually & each attempt has failed as I approach the lower end of the dosage. All the symptoms return & I'm back to square one. As this third attempt to rid myself of steroids has failed, the only alternative seems to be immuno-suppresants (chemo), the thought of which does not exactly fill my heart with glee! As you probably know, PMR can disappear just as quickly as it appears, but in a minority of cases, it hangs around, sometimes for life. I am resigned to the fact that I may have to take some sort of medication 'in perpetua', if so, then I want any side effects to be as few & benign as possible. Tamara, the only advice I can give you is ask questions of your Doctors. If you don't get the answer you want, ask again, be persistent, explore as many options as possible. I wish you good fortune as you venture forward on this rather bumpy, bendy road. Post again when you're ready, there is much wisdom & experience to be found aboard 'The Rainbow'.
       My Dear Pat, I echo the words of encouragement expressed by so many over the last few days. Through all the medical complexity of your condition, I am always struck by your refusal to allow it to overwhelm you, although I suspect there must be times when it feels like it could. Your outlook remains strong & positive & as ever, peppered with humour. I have learned much from you about facing & dealing with adversity. Continue striving, my Dear Pat. You are precious & much-loved,
                                                                With Love to You All,
                                                                                              Nigel.
                                                                                              xxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 05 Jun 13 - 05:31 AM

and mine

love & hugs

sandra

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 04 Jun 13 - 11:24 PM

Yer in my, thoughts, VTam.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 04 Jun 13 - 10:18 PM

Keep it UP, SPAW.

Virginia, more good thoughts on the way from me, too.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: billybob
Date: 04 Jun 13 - 07:05 PM

Tam and Spaw ,Frug,Terry and Nigel and Ann,Pete and Tommy,thinking of you, it is rather late at night so...
lots of love,sleep tight and sweet dreams
Wendy xxxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 04 Jun 13 - 04:44 PM

This is a perfect place for your request, Tamara. Welcome on board!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: VirginiaTam
Date: 04 Jun 13 - 04:25 PM

Is this the place to insert a little self anxiety about impending treatment for a stubborn illness?

I have been recommended (pending results of bloods and xray to ensure i don't have TB or lung fibrosis) for anti-TNF therapy as my autoimmune conditions (RA, Sjogrens, PMR) are not responding to chemo, anti-malarial and steroid cocktail.

The potential life altering /ending risks are daunting. These being cancer, lymphoma, heart failure, blood abnormalities and (peculiarly for American patients) multiple schlerosis.

I now have to decide if I want to risk one or more of these potential threats and which biologic treatment to try out of the 5 offered. 4 are self inject and 1 is hospital infusion.

I'd be grateful for any good thoughts here, as well as, experiences with this type of treatment first or second hand. Perhaps they should be put on the "So that's why I feel like crap" thread, even though it has been dormant for some months now.

Thanks all.

Trembling Tam

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,pete from seven stars link
Date: 04 Jun 13 - 03:09 PM

ditto from me too.been away for a few days and catching up .blessings on all    pete.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 04 Jun 13 - 12:18 AM

sending love & good wishes to Paws's friends, Liz & Terry.

spaw, as gnu, kat, Alison & Janie said. love to you all

sandra

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 03 Jun 13 - 11:06 PM

We can do more than stand it, Pat.

Early on when you first posted about your diagnosis I did some reading up, and suspect others have also. Let us know what you need from us, and I expect that need will vary. You already know this is a crew along for the full ride, ready to laugh, cry, stand up and shout encouragement, or simply ask if a mate wants mustard on their hotdog. Some one among us can find a chorus that will fit, and the wind from our voices will always be sufficient to fill the sails.

Love you. Janie.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: AllisonA(Animaterra)
Date: 03 Jun 13 - 09:09 PM

Like Spaw I have been reading more than posting, but I don't have his excuse. I am a quiet sailor on this good ship, and am just checking in to nod and smile and occasionally burst into song.

Loving you all so much...

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: katlaughing
Date: 03 Jun 13 - 08:48 PM

Pat, I am no good at loosing best friends, but I love your style AND YOU

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 03 Jun 13 - 06:59 PM

Spaw, buddy... ye trow it an we'll clean it up. You vent at will. Please.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: catspaw49
Date: 03 Jun 13 - 05:43 PM

Hi Crew! Sorry if I haven't been around although I have been reading. I am so impressed with the way we all continue to sail on and that others have come in including a good friend, Frug. He was duly warned and pleaded with when he wrapped himself tightly around his dearest Sassy as a caregiver but obviously didn't get the message. I am happy too that it finally hit him to take care of himself before it was too late. Frank my friend.....I expect better of you in the future and suggest you stay aboard the Rainbow with us as your advice and counsel can be a great assist!

I was enjoying the way things have been developing here and happy to see how it has become even more with the age. Nigel and Janie have warmed me with some really beautiful thoughts and I can see the vessel and crew just getting better.

I'm just falling into a pattern right now where I have 2 weeks of feeling at half-assed followed by a week of chemo which is okay except the damn shots are rough. 15 shots in the stomach , 3 a day, is not pleasant. Then I go way downhill with excessive pain from the shots, nausea from the drug and the pain combined.....after about 9 or 10 days we're back to fair, another few days to pretty good (Almost there now), and then I get my 2 weeks of A#1 okay.

It pretty much sucks but it is the deal and I'm happy we're making progress. Of course that too is the frustration in a way. This is a "quality of life" treatment because the MDS/Leuk has no cure. I'm not bitchin' here(well damn Spaw, it sure seems like it!)but it would be more tolerable if I had any expectation of a good outcome!   It is sorta' like going to the Doc with a broken leg. The Doc gives you a hammer and tells you to smash your hand once a month.   You say, "Will this fix my leg?" Doc says, "No, but it will take your mind off of it until we amputate it"

Enough with the bitching! My numbers keep going up although the weekly number may drop after chemo, it gets better as the weeks go by and I go into each new chemo treatment with better numbers than the last.....DEFINITE progress. Hemoglobin still low but very close and platelet count has only a short way to go to be in range, low but in range!

More later if you can stand it.....LOL


Spaw

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 03 Jun 13 - 12:24 AM

Got it, Paws! Liz and Terry!

The inmates are taking over the asylum. Wait . . . . No . . . . The crew is taking over the ship, and it is not a mutiny but a peaceful new arrangement of equality. All Hands on Deck!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 02 Jun 13 - 05:54 PM

Paws... yupper.

Nigel... ya mighta been the cappy on accounta you were the one that laucnhed this tub but I always treated and respected you as part of "the crew"... as one of "us". As in...you an me are just the same poor guy rowin a dory in a big blue sea ceptin that there are a lotta hands on the oars. I can't speak for anyone else but this has been said many times above... thanks.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Wolfhound person
Date: 02 Jun 13 - 04:36 PM

I've just heard from Liz that her husband Terry, who I mentioned earlier has mesothelioma, is in hospital and has been put on the Liverpool pathway.

They both need any spare good thoughts you all might have for a while, to add to the many supportive friends already rallying around in their community.

Paws

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 01 Jun 13 - 08:09 AM

Do us a favor, Frug, and take good care of yourself going forward. No more close calls like that, eh?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Pete Jennings
Date: 01 Jun 13 - 06:59 AM

Amen to that, Nigel.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Nigel Paterson
Date: 01 Jun 13 - 06:16 AM

There is much here deserving of comment, but I'm going to restrict myself to reflecting on Janie's post of 29th. I have referred to 'Jane's Rainbow' as 'our' thread for a while now, but, in truth, it's been almost as hard to 'relinquish the captaincy' as it has been to let Jane go. I felt it remained my responsibility to keep the thread alive; drive it along. I now understand, completely & utterly, for the first time, that my stewardship (Thank you, Janie) is a burden from which, as of this moment, I am relieved. I become one of the Crew; one of many, getting on with my daily duties. We have no rank, no special privileges. What we DO have is each other. Janie expressed it so eloquently: " The wonderful magic is that when called up, the ship and crew will appear immediately to any who summon it, not on the distant horizon from whence it might take days to join, but right here, right now, whenever that now is".
       I apologise for underestimating your Love, Determination, Loyalty & Compassion.
       I/we are in the very best of Hands,
                                                            With Love,
                                                                           Nigel.
                                                                           xxxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Sandra in Sydney
Date: 01 Jun 13 - 05:34 AM

Lucky you! You've just found out why carers/parents/health professionals need to keep in good health so they can help folks.

I assume someone in the health field has suggested you make more regular visits to your doctors as well ask taking these medications?

keep looking after yourself so you can look after your wife.

sandra

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 01 Jun 13 - 05:29 AM

I hope you equilibriumiate rapidly and are fully equal soon.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,Frug
Date: 01 Jun 13 - 05:22 AM

Hi folks - just had 10 hours recovery sleep. To fill you in .... as many of you know for nearly 2 years I have been nursing Sassy through her recovery from major head trauma. A consequence of this has been that i have been less than assiduous in attending to my own health. several times last year I was asked if I had Asthma as I was wheezing. I put it down to a chest infection and did nothing. 6 weeks ago whilst having a small break with the family I experienced major breathing difficulties and on visiting the Doctors a long standing and deep seated infection was identified. Several courses of antibiotics and steroid treatments, whilst improving the situation did not resolve the issue. Chest X rays showed fluid build up outside the lungs and an enlarged heart and raised a potentially overactive thyroid ... also the GP noted an increased level of an enzyme which is a precursor to a heart attack. hence the visit to A and E. Thankfully, and without going into too many details, emergency treatment had a dramatic effect for the better and an imminent heart attack was averted. I am very lucky and although very knackered. I am now in possession of appropriate meds which will control things whilst I try and achieve equilibrium.

Spooky eh?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: ChanteyLass
Date: 31 May 13 - 11:52 PM

Hey, Frug, I'm sure there's a hammock on board with your name on it. Sorry about the scare!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: frogprince
Date: 31 May 13 - 11:00 PM

Bless Frug's little heart : ), and may all the crew sleep well.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 31 May 13 - 10:55 PM

Glad to see you took gnu's advice! (in this instance, anyway:>)

Keep us posted, eh?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: billybob
Date: 31 May 13 - 07:07 PM

Sleep well Frug,
the crew will look after you while you sleep

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,Frug
Date: 31 May 13 - 06:00 PM

Zzzzzzzzz

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 31 May 13 - 05:52 PM

Get thee under the sheets!

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: GUEST,Frug
Date: 31 May 13 - 05:41 PM

Just checking in here for a bit of quiet time. Just released from hospital after 24 hrs in A and E following a cardiac scare. Move over folks I need a little sleep!!

Frank xx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 30 May 13 - 07:37 PM

T&Ps to Skipy.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: billybob
Date: 30 May 13 - 05:37 PM

Healing thoughts Skipy
xxx

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 30 May 13 - 05:26 PM

Mudcatter Skipy has had a stroke. Kindly add him to your thoughtful moments- I will picture him singing as he regains the power of speech. There's a thread upstairs.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: maeve
Date: 30 May 13 - 07:22 AM

Nigel- We hereby declare you to be on guilt-free leave. Check your PMs, eh?

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: gnu
Date: 30 May 13 - 06:43 AM

Janie... I got teary eyes.

Subject: RE: Jane's Rainbow: for all needing support & comfort
From: Janie
Date: 29 May 13 - 11:11 PM

Ah Nigel, this thread can sail itself, doesn't need a captain or a helmsman. It is guaranteed to sail on, a full complement of crew aboard. There may be times when it sails below the horizon, but is sailing nonetheless, a full crew aboard. The wonderful magic is that when called up, the ship and crew will appear immediately to any who summon it, not on the distant horizon from whence it might take days to join, but right here, right now, whenever that now is.

There is no "duty" to what this thread represents. You do not need to feel like you have to be a steward. Jane's Rainbow is here. It will stay here.

Love never dies and this thread is a testament to all the different ways of loving, caring, joining, holding, and letting go that encompass what we humans experience as love.


Remember, Nigel, that you are wrapped in a virtual circle of care and concern, as are all the rest of the crew. There is no pricetag, and no duty attached to that.