Starting stem cell harvest next Monday.

Hi Terry, Best of luck with your SCT.

The best thing I ever did was take in my Laptop and Mobile. Most of the time you are just waiting for things to happen and my Laptop was a God send. Plus the wife and I text each other, which meant she could check on what was happening at any time, but most of all we could say good night and good morning to each other every day --ahh who’s a big softy then!

Have you checked that the hospital has a Wireless connection you can log into? If not you can buy a dongle from PC World for a month.

How you will feel is not an easy question to answer. Some get very sick others breeze though it like a walk in the park. You MAY get diarrhoea, sickness, sore throat and mouth. I had the sore throat which was pretty bad and then I had a real bad infection when they took the Central line out of my chest (used for taking blood and putting in medicines etc..), otherwise a doddle

Kindest regards – Vasbyte

David

Hi Terry good luck for Monday it wont be a walk in the park butit doesnt last for ever and to be drug free and have a long remission makes it worthwhile. I agree with David a laptop and phone are essential to stop boredom and you wont feel so isolated Perhaps you could ask if you can take your own pillow in hospital pillows are horrible npoisy things!! A mug for your cuppa as plastic ones arent nice and it means you get more tea too Moist toilet tissue in case you have diarrhoea, also a lip salve. You will probably sleep a lot just go with the flow and dont try and stay awake listen to your body it knows what you need to recover . Your taste and appetite may be all over the place so get friends and family to bring you any tasty snacks you fancy , the next day it might be something completelt different . I craved jelly one day pickled onions the next!! The real recovery is when you get home just take things slowly and try not to get frustrated at not being able to do much sometimes it happens quickly and others take longer to get their strength back Take any help offered people are very good and feel better and less anxious if they can help Keep posting if you feel up to it Bridget

Hi Terry

Well it depends how they do it ,my hospital gave a cannula in each arm one takes blood out then it passes through a machine scoops out the cells then back in to body in the other arm so i had 0 movement had to keep both arms straight for hours !! others have a hickman line or similar and would be able to move i think.

Just take them in and a walkman i suggest

I had 2 days on the machine about 7 hours on each session and managed 5.2 mill and didnt have the chemo pre it.

For me i felt a bit wiped out but how much was down to the harvest and how much was down to end of treatment and bit worn out anyway im unsure ,think i felt more myself after a couple of days?

Good luck and wishing you a plentiful harvest

best wishes
Sue

Hi Terry, First of all Good Luck with it all, and now for the movement? do you know what you are having fitted? I had a Femerol Line inserted (groin area) and that had if I remember four other tubes coming out of it and with those they gave took and did everything, Harvested My Stem Cells, returned them and gave me a blood transfusion and two lots of platelets, it was pain free and no digging for veins all the time.

Just get used to "Running" to the Loo in the dark and not forgetting to pull the plug on anymachine that you have conected to you as its a shock to be pulled back onto the bed Lol.

Tom "Onwards and Upwards" x

Hi

Yes, just going in for the day, and wanted to know how much free movement I would have. I guess it just depends on how they want to attach me.

Really hope I only have to go on it the once.

They also suggested I don't travel there by train and tube, so having to pay for a blumin taxi from Chelmsford to Bart's, nice.

I really hope they give me a date for going in on Monday, just want it over and done with.

Terry

OPPPS SORRY Had a senior moment when replying to your post. You were asking about a Stem Cell Harvest and NOT a Transplant. Sorry.

Sue, who clearly read the question, has given the correct answer

KIndest regards - vasbyte

David

Haha sorry me too I should have read your post properly sorry Good luck with the harvest Bridget

Hi Terry,
There seem to be any number of plumbing systems used to harvest us. I had an aphoresis line that went into my neck. It worked very well and all samples, transfusions and everything went through the two tubes. In my case I could do anything I wanted within the extent of the length of the tubes connecting me to the machine. I could have used a laptop or an exercise bike if I'd wanted to. I was never bored however because there was so much going on and the staff are so friendly that the time flew by. I had four sessions of four hours and got enough cells for one transplant but about 400k short of the second.
I'm about five months down the road after STC and I'm feeling better than I have for a very long time. I hope your harvest goes well and the stem cells are sloshing around you in abundance.
Has anyone mentioned the smell of sweetcorn yet?
Best regards,
Andy

Hi Terry
I didnt have the chemo priming either, just the gcsf injections, then I had a needle in each arm and lay flat on my back for 5 hours the first day and an hour the second day. They got enough cells for 2 scts. I took a book but couldn't read as couldn't bend my arms to turn the pages! I could not get up to go to the loo either, but had thought this through before and only had one cup of coffee before I went in. I took 2 bottles of water with me and sipped one during the procedure and gulped the second when finished. I did listen to an ipod for a while but like Andy the nurses were busy and chatted a lot and kept me amused! It all went quite quickly. I was very tired and washed out for about 3 weeks afterwards. They don't give you a transplant date at our hospital until the harvest is completed but it is about 4 weeks later.
Good luck with it
Helen

HI Terry,
I had a solid cannula in my left arm so couldn't bend it at all, but an 'ordinary' cannula in the right so that one I could move. A possible side effect of the harvest is low blood calcium which can make you feel 'muzzy headed' and gave me tingling in my arms. They give calcium to treat this but it ruined my ability to concentrate so I didn't read any of the things I had taken to pass the time. The nurses stay close by and chat and provide drinks and snacks and there was TV. I managed to use my phone allright. Good luck, hope you get a good harvest.

Alison

Hi Terry

Like the others I wish you a successful harvest. And to think, I used to think harvest was about bringing apples and pears into church!

Hope you get enough for two SCT just for your comfort, but really hope that the first SCT, when it comes, will last for years!

Best wishes.

Mavis

Hi Terry
I was on the machine for two days and with the needles in each arm and having been asked to lie flat ant to try not to move around and disturb things I couldn´t do much other than snooze and chat to lovely hubby in between.
The only difficulty I had was a lack of calcium but they gave me an injection and a couple of glasses of milk which did the trick.
On the first day I said I wouldn´t bother with the local anesthetic in my arms but the machine kept stopping as my vein didn´t like the needle being left in for so long. The second day I had the local and it went a lot easier so wish I hadn´t been so brave on the first day.
Hope everything goes well - we shall all be thinking of you. Let us know when you are going in for your SCT if you are able so I can include you in my prayers.
Love Carol xxxx

Hi terry I'm assuming u had your harvest yesterday. Hope all went well. I was in barts too and they are fantastic. I was one of the lucky ones who breezed thru it. One bout of diarrhoea, one bout of sickness and no infection. They kept telling me I was boring but even if you do have any side affects they are constantly monitoring you and give you drugs which will help you. On the days my mouth ulcers hurt a little I had their build up shakes which I can recommend. Good luck. You will be home before you know it. Kay x

Hi all

Firstly, thanks for all your posts, very much appreciated.

Well, I ended up going in for two lots, which apparently is the norm. I do wish they would communicate properly in the first place, as I could have made alternative arrangements for going in, but as it was, I ended up having to pay for two return journeys by taxi from Chelmsford to Bart’s, which wasn’t cheep.

I got 6.? From the first day, and am waiting to hear what they got from the second day.

Does anyone know how much they need to get in order to have enough for two SCT’s?

It may sound like I’m complaining, but goodness, it was very tedious. Having to wait for three hours for blood tests prior to going on the machine, then another 3 hours after the machine finished for the follow up blood tests. They never mentioned any of this prior to going for the treatment, and I wish they would have done.

Hey ho, it’s done now, and have been given a date of 05 March for admission for the actual treatment.

That gives me a week and a half to enjoy good food and wine prior to my lock down. ?

On a side note, speaking as someone who has only stayed overnight for one week in hospital last year, I felt incredibly blind in hospital for the last two days, with a weird variation in how nurses interact with me.
Its such a shame that some people see the blindness first, then remember the person behind the disability. There were however, a couple of excellent nurses who were just completely normal with me, and saw the blindness as a secondary issue. ?

Hi terry. It is a shame they did not tell u about two day stint. Me and my friend stayed in the hostel over the road free of charge and it was really nice. They wanted 8 million from me for two transplants but got 4 which was enough for one transplant. I am at barts for last time on 19th march. Would be happy to pop in and say hello if u wish. Enjoy the next couple of weeks that's what I did. Kept telling my partner he had to take me out for meals I'm in Brentwood so not far from you. The boredom is the only thing in hospital but I took my laptop and iPhone. They were invaluable. Best wishes kay x

Hi Kay

Thanks for your reply.

As you have already been into Bart’s, could you help with the following. I was also intending to take my iphone and laptop with me. I asked yesterday if they allowed access to their wireless network, and the nurse thought that they didn’t, and I would need to buy a dongle, or obviously connect through my iphone. Did you ask the question, and if so, did they give you access to their wireless network?

As for your offer of a visit, certainly, pop in, anything to break up the boredom is very welcome.

You mentioned living in Brentwood. Well I know it very well, as I’m based there in the Town Hall. I work for Essex County Council as a social worker, so Brentwood is my stomping ground.

Terry

Hi Terry

Am pleased you got them little blighters out but am sure 6 wont be enough for two SCT? but hey ho you never know.

I found it strange that you had to make your own way to hospital?? I went into Scunthorpe General and had my Femoral Line fitted, stayed in Hospital over nite and was transported to Leeds (seacroft hospital) by Car and brought home free of charge, collected enough of me for two SCT in one sitting (three hours total) but they put them into three bags so it worked out they gave me too many and left none for a second Transplant But hey I have no need to worry as I wont need another the first will work for years and years Lol

Good Luck with the forthcomming Transplant terry and keep strong

Tom "Onwards and Upwards" x

Hi Terry it seems wrong in this age of wireless technology that wifi access isnt available especially when you are stuck in hospital. If your home broadband is with BT they have wifi access all over the place and its free , you can download a map to see which is the nearest London has loads Good luck on the 5th you will be home before you know it love Bridget x

Bridget, You were kind enough to send a reply and I can't find it on the site. In fact I am having a lot of trouble finding anything! Bad day? Senior Moment or is the site playing up. Sylvia

Good luck with your harvest i will be celebrating 13year birthday in march since my stem cell transplant.keep positive and stay well ,
Lin h

Hi Sylvia the gremlins manage to hide a few posts on here just like they hide things in my house!! I cant remember where I posted it either ! Its good to hear from you though Stay well love Bridget x