[JohnoParticipant]

Hi Again

Just phoned the hospital, as instructed, it appears a room is ready and I spoke to the Doctor who told me she has prescribed the drugs ready. I am to phone the ward at 11 am on Sunday just as a final check but it looks all set.
We already keep a bag ready for admissions but we will spend tomorrow checking and getting ready. Judith and I both have iPads so we can use FaceTime which is the same as Skype really but I find easier. By the way we had a take away curry last night and will probably have a Chinese tonight!
John

[CarolsymonsParticipant]

Hi John

Enjoy your food while you can….soon you will be revolted by the sight of anything related to food! Having said that, although I was unable to eat for a few days I still didn’t lose weight! I did lose a bit when I came home, but have put it all back on! I do hear of other people losing weight however. Last blood test 3 weeks ago has me with a normal light chain ratio and no paraprotein detected, so I am still a happy bunny 2 months after transplant. Hope your results will be the same!

Carol

[JohnoParticipant]

Hi
It’s Monday now, admitted to Southampton General Sunday as promised. Had a saline drip all night and til 11am today then given the Melphalan, now I feel really rough, stomach pains, generally rough. My peripheral neuropathy is really bad. Tomorrow it’s Velcade and Wednesday stem cells. I’m being hydrated with saline and potassium.
John

[CarolsymonsParticipant]

Hi John

Be prepared…things will get worse before they improve, but it is doable. Not sure about the Velcade as well as all the other drugs they hit you with. They will give you lots of anti nausea medication too, both orally and through your IV line. I had to have some potassium during the days I was unable to eat and blood (yuk!) and platelets at various times while I waited for the stem cells to do their thing. I am just past 2 months after transplant and return to work tomorrow on a phased return. I am looking forward to seeing my staff again…..it is boring being at home all the time! Never thought I would say that!

Carol

[HelenRParticipant]

Good luck John! I did the harvest in 2012 but not SCT – they’ve been on nice and I’m now expecting to do one later this year. So I’ll be interested to hear how you get on!

Thanks everyone who’s written on here, I feel like I’ve heard all the medical side effects before in great detail but hadn’t thought through practical/ emotiinal issues like frequency of visitors. I was in hospital for 4 weeks when first diagnosed though, so you’re reminding me what it’s like – very tiring seeing people for any length of time, sometimes nicer just to watch telly!! Also realising how it might be hard for people on the outside…

Also yes that thing of people coming to check on you at all hours of the night… Very reassuring in one way but total nightmare in another! Not much privacy…

Oh well, I’ve also been telling myself that I’ll forget it as soon as it’s over. 🙂

Helen

[JohnoParticipant]

Hi
It’s Tuesday evening, I’ve had the Melphalan yesterday, seem OK today eating OK. Had a drip all day and Velcade injected into the line about midday. The drip has stopped so I am now free to hobble around the room.
Tomorrow about mid-morning I get the stem cells back. I will let you know how it goes!
John

[rebeccaRParticipant]

Hi John. just keeping crossing the days off your calendar and every day will not only seem like one day less to go but also a big achievement just to get through it – be proud how strong you are and that you are a fighter. Have read on the US web sites about the mix with velcade and that it is a very effective combination but not heard of hospitals using it over here yet – yet another plus point in your favour.
Stay strong

RebeccA

[PerkymiteParticipant]

My wife and I used Texting. We found it great for keeping in touch. We could say good night and good morning and lots of other silly little things people say to each other when they have had 50 great years together, whoops it was on 47 years when I had my SCT. Really recommend it.

Kind regards – vasbyte

David

[JohnoParticipant]

Hi
Had the stem cells yesterday, it’s now Thursday 3rd April, it took 7 bags! Very interesting to watch, the bags get wheeled in in a big flask with liquid nitrogen, they then take them one bag at a time and put them in a small ‘bain Marie’ from there allow them to gravity feed into my Hickman line.
Took a while because of the number of bags, about 2 – 3 hours. Feel good today, no sickness or nausea, still got the pain in my back and legs of course. Everyone tells me that when my ‘counts drop’ I will feel rubbish.
I will report back as we go.
John

[JohnoParticipant]

My wife and I both have iPads so we are using FaceTime, works brilliant and it’s free!
John

[keithmtParticipant]

Hi John

I had my SCT 3 days ago, preceded the previous day by Melphalan. Feeling pretty low at the moment with a swollen mouth (not sore), zero appetite (Carole’s right, can’t stand the look of food at the moment), very tired as well.

I took the option of staying home during the first of my 3 weeks post SCT and I’m trying to avoid giving in and turning up at Royal Marsden before Sunday.

Best of luck with your treatment, the encouraging news is that so many people on this forum get through this stage so we should both focus on the end-game when we’re feeling rubbish.

Positive vibes to you.

Keith

[JohnoParticipant]

Hi Keith
I’m in Southampton General, I wasn’t given the option of staying at home. Apart from feeling really tired and pain from the neuropathy I’m not too bad. The doctors said I can expect diareah but I am still suffering from my constipation! Let’s see how it goes over the next few days.
Best of luck
John

[mattkboParticipant]

Hi John,

I had my SCT in December ’13 and it was tough at times but with a lot of support from my Family, Doctors and Nurses I got through it and so will you. Just take it one day at a time, don’t rush it, you’re in the best place. When I look back now it seems like no time at all.

Take care and good luck.

Matt

[JohnoParticipant]

I’m marking the days off on a board, trying to get home for the 19th, our anniversary. Apparently my white blood cells and platelets are dropping and that’s why I’m fatigued. Still eating ok at the moment though.
Thank you all for your replies and support.
John

[rebeccaRParticipant]

Just remember John there’s a big plus point when you do hit rock bottom – the only way is up, up and home!

[Author]

Posts