[susannahParticipant]

Good Luck on the Bendamustine Dai

Love
Suex

[susannahParticipant]

Hi Tina I dont know what I would do without this site you are the only people who understand what im going through. There are so many questions I want to ask but then I think do I want to know the answers. I feel myself start to panick when there is just the two of us especially at night. Who do I ring if anything happens 999, the district nurse, out of hours GP, I keep thinking because Michael is terminal no one wants to know. Did you feel anything like this with Patrick? you dont have to answer Tina it must be hard for you
Thanks for the Hugs
Love
Sue

[susannahParticipant]

Hi All Thank you for your replys, Christmas wasnt to bad i kept myself very busy so didnt have time to think, but New years Eve not so good. Went to bed about 10 o clock just lay awake then listened to all the fireworks going off thats when it hit me, Michael was sound asleep (mophine Induced) I just let the tears roll, time is passing so quickly I keep asking myself why did his consultant tell us how long its torture.

Love to all

Suex

[susannahParticipant]

Dear Mary Thank you for your reply, it must have been so hard for you. I cant imagine what pain you are feeling, my heart goes out to you
Love
Suex

[susannahParticipant]

Dear Dai So sorry your in hospital again lets hope they clear the C diff altogether this time, and you start the Bendamustine with a clean slate

Take Care
Suex

[susannahParticipant]

Dear Keith What a few ,weve had a few of those with sepsis, terrifying
to say the least,.Take care of yourself

Thinking of you

Suex

[susannahParticipant]

Hi All thank you all for your replys, i feel so much better when ive been on the site. Tina and Eve if you read this post im having problems with my emails.
Michael had to have a blood transfusion yesterday the ambulance fetched him in his weelchair, as he struggles to walk now, but he seems quite well today very tired though.His pain ismostly in the lower back and hips, he has had his morphine increased again and he seems to be a little better,although I know he doesnt always let on what pain he has.

love
Suex

[susannahParticipant]

Hi Eve Thank you for replying to my post, its 5pm here so i would think its about 4am there and hopefully you are both fast asleep.
ive never heard of a driver?
And your so right about making the first move with people, I spoke to my neighbour yesterday and she came round with some homemade scones today, which i might ad she has never done before, and we just looked at each other and laughed and then we both cried.
I hope Slim is keeping well you both so deserve it after the year you have had

love to you both

Suex

[susannahParticipant]

Dear Tom you are such a lovely man,thank you for my hugs.
Tina and Gill you have both been through so much, it really does help when I read your posts.
Managed to get some fresh air today, even if it was just to fetch a news paper, but it did clear my head a little.
Regarding Michaels pain. his GP is now in control of that, well hes on mst and top up oramorph. I have to keep a diary every week of his top ups and take them to his GP who then ups the mst.We only have contact with the hospital if he needs a blood transfusion, they are sending the phelebotomist (Probably spelt incorrect)once a month to take his blood.I do manage most days, but I dont think Christmas is helping. I do have contact numbers for the district nurses and the macmillan nurse for when I need them but I keep thinking i wont, perhaps im in denial.

Love

Suex

[susannahParticipant]

Hi Charlie My husband has had 3 DVTs first caused by Thalidomide, he was given clexin (think thats the right spelling such a long time ago)injections, he then went onto warfrin, which he has taken through all the trials he has been on apart from the last one which was very new and they did not know how the warfrin would react to the drug so he came off it. But had no problems at all

Best wishes
Sue

[susannahParticipant]

Hi Dai

Sorry to to hear you have had to stop Revlimid. I hope the Bendamustine
works well for you

Good Luck
Love
Suex

[susannahParticipant]

Hi Thank you all for your kind replys. Michael has been getting alot more pain recently, but he has coped really well. The worse thing is the panic attacks he cant let me out of his sight. He cannot walk very far but ive managed to take him out in the car, at first id take him to a coffee shop but his appetite has almost gone although he has a craving for dark chocolate bounty bars. I keep having wobbles myself, usually when hes in bed and im sat alone, I can cry as much as I want then without having to appologise to anyone
I just wish his consultant hadnt put a time limit on him, we both new time was running out and there was no more treatment. And this last trial, well it was just that a very new trial but hopefully will help you all on this sight some day
Love
Sue

[susannahParticipant]

Good luck Keith fingers crossed
Love
Sue

[susannahParticipant]

Hi Keith Im sorry to hear of your news, just wanted to let you know michael was on Bendamustine trial this time last year,his PPs did go down but unfortunately he had to come off the trial because of his platelets and he could not have a transfusion because of a condition of the trial. pomalidomide was never an option. He has just stopped the MUK three trial which is very new (only 3 people on it) his consultant told us they are recruting every few weeks, so this will be another option if the bendamustine fails, which of course im sure it wont.

Thinking of you
Sue x

[susannahParticipant]

Hi Tina its lovely to hear from you,how are you?

I keep thinking im ok and then I burst into tears, my brother sat with Michael today while I went to the dentist, and then to the shops, just wandered round like a lost sole. Ive always been such a strong person were michael is concerned but I can feel myself loosing control.
I have a question that keeps going round and round in my head that i need to ask, 2 weeks ago his blood results were all good then out of the blue last Wednesday his consultant told us 3mths his PPs had only gone up by 5 so what was she looking at that made her so sure of his prognosis, am I wrong to ask this question the next time I see his consultant? or am I gripping at straws expecting a different result

love to you all

Suex

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