[TinaParticipant]

Sue,

Haven't heard from you for a while, how is Michael doing on Bendamustine? and how are you?

Tina XX

[susannahParticipant]

Hi Tina Sorry for not posting for a while, the last few weeks have been quite hard. I have been going to work wondering if there will be a job for me by the end of the day, I work in local government, and everyday people are being made redundant, thing is I wish it were me, and then I could spend more time with Michael. I find it hard not to post positive news, especially about a new treatment, but Michaels treatment doesnt seem to be working. His consultant took him off Thalidomide a few weeks ago because it has made the PN in his feet much worse, she lowered the dosage of Bendamustine, but he is still getting the side effects he had when on the high dose, one of them being unable to control his bladder, which has really upset us both. Then 2 weeks ago she gave us the news that his PPs had not moved at all, so we will learn next Friday if the drug company will let him stay on the trial.
Michael stays very positive, and at the moment hes the one keeping me going
he never complains and like Patrick always manages to make me laugh

Thanks Tina for caring Patrick was a very luck man

Sue x

[susannahParticipant]

Hi Tina Just read my post back and it doesnt make any sense, shows you what frame of mind I am in at the moment, it should read, I find it hard to post negative news!
Its a good job I dont know how to put a profile picture on the site, I think the black square box says it all!
Sue

[TinaParticipant]

Hi Sue,

Good to hear from you again and so sorry to hear you have the added strain from work. I expect they won't consider voluntary redundancy?
Although Patrick did not suffer with the side effects experienced by Michael on Bendamustine he did have similar effects after the huge amount of antibiotics taken with so many infections – it really is so very upsetting and I know you must feel helpless at times. If his PP levels are not moving you can say this is positve news? I hope Micheael gets to stay on the trial. I will be thinking of you both.
Thankyou for your kind words- always guaranteed to make me cry!

Take care
Tina XX

[eveParticipant]

Hi Sue and Tina
I have also been wondering how you have been getting on with these trials,and wondering about a few other people on here who are not posting at present.I think it is sad,that you feel you do not like to post with news that is not so good,this to me is what this site is about,be it good or bad,people are on here for help and to help.Tina was not posting much when I first came on here.I caught the very end when your husband died.It is good that Tina has stayed on to give people some insight to treatment and to care about people who are going through the same journey,.

As Tina says pp not moving upward,lets hope this is a good sign and given time,side effects slow down once the body gets use to it.
I know its upsetting,Slim was decorating the carpet with urine bowels and bladder for a short while,the carpet had to go,I put it down to him being so ill,rather than something like spinal cord compression,and he is ok now.
Keep posting if it helps you.Eve

[brochoParticipant]

Hi Sue I am sorry to hear that Bendamustine isnt doing the trick for Michael what a disappointment Have they said whats next for him yet? The side-effects sound awful and make me feel ashamed for moaning about being sick and losy headache for just one day ! As Tina and Eve said at least his pps are the same , hopefully you will get some good news very soon . The last thing you need at the moment is work stress could you you volunteer for redunancy? I hope things get better for you both very soon love Bridget x

[mhnevillParticipant]

Hi Sue
Like everyone else I do hope things turn the corner for Michael and for you re the work situation. It always seems crazy that they don't let people who want to, go, rather than folk who are desperate to keep working.

Keep in touch.

All blessings to you both.

Mavis

[susannahParticipant]

Hi All Just wanted to thank you all for your support. Bridget dont ever think you are moaning I think youre all such brave people who go through so much

love
Sue x

[BADGERParticipant]

Dear Sue
sorry Michael isnt responding at the moment but you never know it suddenly could so fingers crossed for him we are all thinking about him and hoping for good news soon
Love Jo x

[GillParticipant]

Dear Sue

Please do not stop posting becuase your news is negative. Surely this site is about supporting each other through all the ups and downs of this s***y disease.

It is great when there is a posting with something positive but I think we would all be living in cuckoo land if we thought that negative things were never going to happen.

Fingers crossed that Michael turns the corner soon and that you get a huge redundancy payout (or are they doing last in first out doesn't cost them as much?)

Fingers crossed for some good luck coming your way

Gill xx

[susannahParticipant]

Hi Gill and Jo Thanks for the kind words. I agree what you say about sharing things, trouble is im more of a i will do anything to help kind of person, not good with words. So if any of you want your garden doing, house cleaning, dog taking for a walk, shopping then im your man (so to speak)

As for the redundancy, well ive been there over 25years so im not at the top of the list!

Suexx

[tomParticipant]

Dear Sue

Sorry to read Michael is not too good at the moment, I like all others hope its not too long before Michael turns the corner and onto a smoother road, Hugs for you Both ((())))

Tom xxx

[Author]

Posts