Hi Eve
Did I read somewhere that Slim is going in for a transplant?
How are you coping?
Love Teresa
Hi Helen
On reflection I am sure you are right it is about having some control over an otherwise spiraling out of control life. I do hope they get your gut problem sorted out before you go off on your vacation, you lucky thing. Do as much travelling as you can, We did,( including 2 trips to Sydney to se his brother in one year!) and are so happy we did especially now that Peter has relapsed. Peter was 57 when he had MM he is 65 now so you have lots of travelling years ahead especially if you don't relapse as he has.
You can be as cranky and grumpy as you like and even scream it all helps.
Trouble with having your head in the sand MM comes along and bites you in the bum!!
Looking forward to a new photo complete with new hair do
Love Teresa
Hi Eve
I have now had time to calm down and reflect. Yes I was mad at Peter and told him I didn't agree, but it is his pain, his logic was wait until he is put on chemo for the myeloma and see if that works and keep the radiation for another day.
I am so glad you have had the same thoughts mad angry feeling the burden then I guess, like me feel so unfaithful about moaning about your partner to others. That is where I love this site I am not telling anyone who knows him but can get a sense of release even if there is no escape.
Thank you so much for answering. Men with a shrug of the shoulders!!
funnily enough when I told the children my son agreed with my husband wait,and my daughter agreed with me, take the radiation, funny old world
Love Teresa
Hi Helen
I am so glad your appointment is so routine and you get a good walk and a coffee with your daughter I just hope the sun was shining and the weather good for you. It is so great to get out of the hospital atmosphere and get fresh air.
We had our appointment yesterday and an x ray was taken today we were in again to see the pain doc. I was soooo mad you can not believe!
Peter has two broken ribs (a bit like Dai) caused by the myeloma and was offered radiation 5 days low dosage and another treatmewnt if the pain came back. He refused!!! He wants to wait and see what the oncologist offers next week. Anyway we did come away with new prescriptions for Fentanyl(Abstral)pills and Duloxetine (Cymbalta)pills in case you know them, and to wean off some of the other pain meds( hydromorphone,)I know it's his pain and his decision but I have to watch this pain and do everything for him I feel as if he is not helping himself!! I think I should not post this as I should wait until I am not so mad.
Anyway the alliums I have are the classic Ambassador I don't know the femma I will look it up. Also I am going to try the quirky Karataviense tiny withy basebasll sized blooms.Mine are in the garden not in a pot and alsways look great after the green leaves have died back they spread like crazy and have to be divided.
There I feel better after that flower chat.
I am so glad you have a healthy dad at 90 you look young in your photo so assuming you are the baby of the family.
Take care and how did the occupational health report go?
Love Teresa
Hi Dai
How sarry was that. You were at the clinic this afternoon so I hope you will let us know how you got on.
Love Teresa
Hi Jean
what cutsie pie little girls. I hope you get your grandson Love Teresa PS I bet your bathroom looks great if you have any spare energy mine could do with a good going over
Hi Andy
My goodness so young and so full of medical terms.Good luck with your blood work tomorrow. When Peter had his 11 phials taken today he said don't drink it all at once to the young guy that collected it for testing boy some people just don't have a sense of humour the look he gave Peter could have turned him to stone!
Glad you had a few Easter drinks and that you are feeling alright. Does that mean good or just ok?
I think remmission may be a long way off this time, so many years(7) on all these meds and the poor old body getting older by the drug.
I hope your cycle of Dex/Rev has pushed you into remmission and you are not a challenge to the medics anymore
The SCT isn't a fun time so hope you don';t need it too soon.
Luv Teresa
Hi Eve and Helen
Sorry it's a combined reply.
Yes deep breaths did help I went to a yoga class on Monday night in readiness for bad news at the hospital today. I couldn't stop yawning but the yoga instructor said that was good showed that I was letting go and relaxing. Didn't realize I had so much relaxing to do, the whole class yawning!! I guess my batteries are recharged now.
I have two grown up children and two young grandchildren they all live here in Toronto thank goodness they didn't leave the country.
Anyway Helen you are right that is the way of gardens they do their own thing no matter what we try. If I knew how, I would send you a pic of my aliums when the are out.Last year the leaves were very brown but the flowers were still wonderful so this year I have started to water them even though they are only just popping through the earth.
Like your parents we hide everything away and only use the shower/bath chair, it gets a bit depressing looking at it all.
Hope your dad is ok and the valve replacement worked he must be young to go through that.
I hope your clinic appoinment today went well?
Peter's liver function blood test showed signs of coming down now that he is off all trial meds. An x ray to try and get to the bottom of this new pain mainly ribs. Next Tuesday a talk about alternatives. Tomorrow the pain doc to try different pain meds ah well it's cold and windy here so hanging around the hospital with a good book may be the best way to go.Luv Teresa
Hi Helen
I hope the snow didn't affect your planting. Maybe it was just a light snow and no real deep frost to go with it so all is well?
I have alliums and lillies in my garden and they have been there for years. I only have summer flowrers in pots so no planting out for me until the end of May.
Yes we were so upset that the trial only lasted three treatments not even one cycle. Not sure what is next as Peter's pain is almost out of control now and sleeps a lot and can't move around too much. The blood results which showed that his liver function was up was the cause of it ending. The blood has been sent to the central office in USA (the trial was Glaxo sponsored and their offices are in USA) and we will find out on Tuesday after Easter what happens next.
So we are just practising with all the equipment the O,T delivered on Thursday night and are trying to laugh at living in what look like a very old folks home!!
Ah well deep breaths and stay calm
Luv Teresa.
Hi Andy
I hope the Rev/ Dex combination works for you and you get to the Stem cell transplant stage, but only after a long remmission on Rev Dex. first
I don't know what dtpace is but it required 5 night s in the hospital so may be you can tell me what that is?
Hope you are abel to enjoy Easter
Luv Teresa
Dear Mavis
I am so sorry to hear of all the trials you are going through but glad things are getting slowly sorted out for you and Gordon, I am thinking about you and wishing you well
Love Teresa
Hi Gill
Yes thank you I feel safe to donate now. I am from London Marble Arch and some of my family are still in London. Even though I am sad for all children I guess the London ones feel closer to home.
Eve,
my heart goes out ot you and your daughter.
Luv Teresa
Hi Andy
So sad to hear your treatment has stalled a bit, does that mean you have to wait for the Stem cell transplant as things aren't going so well for you on other treatments? What treatment were you on that has stalled
You haven't had MM for very long and you look young so I hope it goes into remmission quickly for you.
Our 4 years of remmission have ended and now the AKT trial has failed after only 3 hospital visits not even one cycle!
It is such a horrid thing to have to live with I really hope your treated gets sorted out quickly and you get the sct that you want
Luv Teresa
Hi Gill
I would love to help but am not so good on the computer
I followed the links and it came up Virgin something or other is this safe to give out my credit card?
I get so sad when I see the children with cancer. I was 55 my husband 57 when our lives changed due to MM
Anyway if you don't reply I will wait until my son visits and ask him
enjoy France
Love Teresa
Hi Gill
Thank you for the welcome I really needed to talk at the begining of this new relapse after so many years of going it alone. I am so happy I have found this site. One can't moan to family friends or neighbours I think they would soon get fed up with it. Also I have found out so much info from reading all the notes on other subjects.
Not so clever on the computer but I love the happy faces people include.
Well we have had snow and it has melted and now we are sunny and plus 10 so I may fertilize the grass if I can get my act togwether long enough
Love Teresa
