[VickiParticipant]

Hi Mandy

Colin had his SCT in November 2011. Like you he had a really rough ride during his induction treatment. He was in and out of hospital with infections and temperatures, virtually every month for 7 months. Antibitoics etc etc. It was a really long haul. However that said the trial was worth it and he got to SCT and remission!. He also had anxiety attacks, terribly in particular before SCT. He couldnt breath, very emotional etc.Lots of tears- but i think part of it quite rightly was fear, some I expect tiredness as a result of getting to that point and the constant struggle to believe you can do it. It is hard to watch a loved one go through it but you are like anyone else- struggling to come to terms and battling though. You can do it. I dont know whether its good to be on trials or not- we picked that route so it must be so, Given the volume and strength of medication you are bound to be ill- on or off trial. You can be forgiven for being out of control!. You have a damn good reason- go for it- you have come this far 🙂

Vicki and Colin x

[VickiParticipant]

Hi jacqui,

Yes we go to EJU, and we are now moved to a Wednesday afternoon clinic. All good today and they want to see us again in two months. Colin's back is still bad so thinking what to do next, but they are referring to back specialist. :-). Glad Geoff is seeing Nicky. Colin sometimes says its like a dream (nightmare more like :-(), being in this situation….but we just plough on. Psychologically it is hard,even after sct because they are so weak and forlorn, so it's hard to buck up!. But it does come x. Tonight we went out for an early evening meal, what a luxury and so nice just to go out :-). You will get there too. We saw a former colleague of Colin's today who had leukaemia 16 years ago and is ok now….different condition but positive outlook if you can keep it going is bound to help x

Take care and keep us posted!

Vicki and Colin xx

[VickiParticipant]

Dear sue,

Our thoughts are with you and Keith. He is a man of great strength and fortitude, who has and is a great comfort. Should this be a final journey, peace and tranquility will await x

Vicki and Colin

[VickiParticipant]

Oh jacqui, what a dilemma! But if that is what Geoff wants, go with it!

Colin was very very emotional leading up to sct….and like Geoff, although he wouldn't admit it, his nerves were bad too. He had some terrible panic attacks. He saw the clinical psychologist before he went in for sct. Colin was very anti that before but I persuaded him to give it a go and it helped a lot. Her name was Nicky……ask Sian about her. She also visited Colin a few times whilst he was in having sct. She was great. It helped us both 🙂 we are still waiting Colin to turn the corner and feel like himself….he has reduced his morphine based tablets for back pain as advised but he's got bad back now! So other tablets awaited! He is just fed up as he wants to be back to normal….we have hospital appointment Tuesday for check up! Always scared 🙂

Keep us posted….best to get it over with….come on Geoff, you can do it 🙂

Vicki nd Colin x

[VickiParticipant]

Hi Ali,

Glad to hear your mums out of hospital! 🙂 its difficult isn't it knowing who to contact. I asked the consultant when we had our first visit after sct and she said continue to contact them for now. So last week when Colin was really really tired we phoned the chemo helpline and went in for blood test. We felt a bit guilty as they are so busy but they said it was the right thing to do. I suppose after the shock of having this illness in our families we always feel safer ringing the hospital! That said I am sure there is a cut off point where it's business as usual to the Gp, but I don't know when that is. I can understand your mums confidence being knocked. Same for us, we haven't been away from home in a year….too scared in case we need the hospital. Also we are still waiting for Colin to feel like normal and turn that corner? For your mum I'd feel safer on a cruise because there is excellent 24/7 care…..I so hope she enjoys it, where are they going?

Hope you are ok Ali….life seemed so simple looking back, before this mm and I wonder whether we'll on have simple worries again! 🙂

Vicki and Colin x

[VickiParticipant]

Hi jacqui and jeff

How are things? Did you get some reassurance?

Vicki and Colin x

[VickiParticipant]

Tom,

Good luck. It's strange, but when Colin got,told we were going to,sct it was a huge boost but scary too. It's what had been worked for but when it came to,it we were scared. You can do it as you've got this far 🙂

Vicki and Colin x

[VickiParticipant]

Hi Helen,

Yes colin has started to take it easier, a little less tired but is sleeping when he needs to. Got back pain at the moment, he's reduced his meds due to it being morphine based and the pain specialist is going to give him another drug which is not morphine based and can be Taken long term. I do worry about any pain as I always link to mm but we have the hospital appointment Tuesday so fingers crossed! Glad to hear you got your parking space back…..hr must have felt guilty because you got the note as well 🙂

Jean and frank, glad to hear he is coming along well must be a bit better having a g and t!. I think it will take a time for frank to put on weight but s long as he is eating a little and often then that is ok . As above Colin is a little better, but I can't stop worrying. His back is bad and he is tired…..I worry About myeloma coming back s so many have relapsed so soon. Fingers crossed for Tuesday 🙂

Vicki and Colin x

[VickiParticipant]

Eve,

Translate attitude for leaving no stone unturned to make sure slim gets the right results. I don't care either…..bet the hospital staff think I am mrs 20(no 100) questions but that helps me to help Colin. Hope you and slim are getting some good nights sleep.

That helps so much, take care both 🙂

Vicki and Colin x

[VickiParticipant]

Mary and Charlie,

Relax!!! Just be thorough with cleaning like normal but taking care of handles and surfaces as they are where bugs get transmitted most. Neutrophils are the immune system getting stronger and normally hospitals say 0.5 and patient can go home. It's just like when you are having treatment, the neutrophils go up and down. When they are lower you stand more chance of picking something up so if food was after sell by date, bad egg or some thing you stand more chance of food positioning, hence just being careful.

You asked how to cope, you just do but is bloody hard, no two ways about it…..but you can do it 🙂

Vicki and Colin x

[VickiParticipant]

No more need for a onesie then Tom ha ha

Vicki and Colin x

[VickiParticipant]

Hi Ali,

How's your mum doing? Hope she is feeling a lot better. Isn't she due to go on holiday soon?

Best wishes….Colin less tired but now his back is playing up. He is cutting down on painkillers due to pain specialist advice due to being morphine based, they are planning to put him on something else. He says its muscle pain…..but I always worry wot if?

By the way my labrynthitis seems to be ok 🙂

Tell your mum the suns shinning so she can't be in hospital for nice weather!

Vicki and Colin x

[VickiParticipant]

Ann

As you can see a huge support on this site….wishing you all the best with your treatment 🙂 Colin has never said why me but it does make you wonder, but then why anyone. You and your husband have had a tough time, so you ae due some good times now!

Ann and Pete, glad you guys are doing well. Hope Peter is making a slow but sure recovery!

Peter, we are not so active now by any means! We don't go far at all, at the moment Colin is less tired but has reduced his back medication due to the advice of pain specialist (getting off morphing based tablets), but now his back is going into spasm. If its not one thing it's another. At least the sun is shinning!

Vicki and Colin x

[VickiParticipant]

Hey Tom

Hope you are feeling a lot better, can't get the imagine of the onesie out of my mind :-)you and Cheryl cold both would have one!!

Vicki and Colin x

[VickiParticipant]

Good luck on your 100 day assessment and well done for doing so well, so far 🙂

Vicki and Colin x

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