[alanjamesbyrneParticipant]

hi all ,sorry if this is in the wrong place ,I’m due to start tests for stem cell harvest 20/1/15 ,and my pet hate bone marrow biopsy on the 28/1 ,hate that one oncoligy 3/2 to discuss results of tests and the next plan of attack,,I know I have to have a big dose of chemo, and a 3 week stay in hospital isolation ,not looking forward to it,but onwards and upwards ,don’t know yet what I can and cannot take to hospital with me ,but would prefer my own bedding and comforts ,I believe I get free wifi ,and tv ,exercise bike ,ensuite ,a little scared but that’s understandable,I will be gladd when it’s all done

[keithmtParticipant]

Hi Alan,

I was in your position last April and whilst we’re all different, my process was much less stressful than I anticipated.

First off, if (like me) you’re not a big fan of the biopsy process then ask for sedation. Let them know in advance as the effort for them is slightly more, so you won’t get it on the day if you leave it until then to ask. The Royal Marsden where my collection and transplant was done were more than happy to do this.

My preparation for stem cell collection involved having daily injections for a few days. Being a wimp, I got my wife to do them although they never hurt, even when I did the first few.

I was told my stem cell collection might take 2 days to get enough but as it turned out, they collected enough for 2 transplants on day one. Just a word on needles (can you spot a theme here ….. yes, I am a wimp when it comes to needles), i was warned a couple of time that they use a big needle for the cell collection and honestly, I hardly felt a thing.

Anyway, the collection was followed by a big dose of Melphalan chemo which itself was followed by my stem cells being put back in. The next few days were amazing as I felt like a new person but eventually the chemo kicked in and I was admitted as planned.

The next few days were rubbish to be honest but the Royal Marsden were just brilliant at looking after me. Having been told I might be in for 2-3 weeks, my bloods had recovered well enough to be let home after 6 days!

So, what I’m trying to say in all this ramble is that don’t be too daunted about what’s in front of you, just take it a day at a time and ask for help from people when you need it. You’ll be fine.

Just to close my life history, last August I went into complete remission and just today I have been for one of my 2 monthly test results and I’m still all clear and enjoying life to the full.

All the best for your upcoming treatment, let us know how it goes.

Keith

[alanjamesbyrneParticipant]

Hi Keith ,and thankyou you have help put my mind at rest ,I’m not worried about the injections ,it’s the pain from the bone marrow biopsy,got an idea this one won’t be the last ,next time I will ask for sedation ,I’ve been positive all the way through ,but just lately dobut has crept in ,I know it’s the fear of the unknown ,the other thing I hate is the Mri scan ,for most people they listen to music ,but I wear 2 hearing aids which I have to remove ,I just find it a bit scary ,I know a wimp ,my wife has been fantastic ,even though I jump down her throat a lot ,I don’t mean too ,it’s the stress levels ,I find it easier to talk to people like you ,that has done it ,and I thank you once again ,for taking the time to explain ,good luck to you and your remission,Alan

[alanjamesbyrneParticipant]

Sorry Keith ,one other thing I hate is my taste buds everything I eat and drink is terrible ,been back on chemo for a week after 2 weeks off ,and taste buds are crap again ,I’m lucky I live half a mile from the hospital so nice and easy for the wife ,Alan

[keithmtParticipant]

I know what you mean about taste, I had a similar experience. I don’t think there’s much you can do about it except find those things to eat which aren’t as bad as other things. I found sweet things best.

As for you jumping down your wife’s throat let me leave you with these thoughts as I also had my occasional “moments”. First off, it’s not her fault that you’ve got this rubbish disease and whatever she does or says it’s because she’s desperately trying to do something to help. Secondly, what she is going through is, in some respects, worse for her than for you. I know, because I’ve seen it from both sides. Not only is she extremely worried about your condition, treatment and outcome, but she has absolutely NO control over anything and all she can do is try and help where she can. You jumping at her will make her feel dreadful so PLEASE tell her you understand how she feels and ask her to understand if there are times you are edgy. You need her help to get through this.
As for MRI, I’ve only ever had one for a back injury and for some reason I found it really relaxing and fell asleep. I know that’s not the experience for some people.

Sorry for rambling again.

[alanjamesbyrneParticipant]

Wife is fine ,I didn’t jump down her throat that much, lol just been talking to the hospital about a general  anasetyic they said they could not do it as my blood was to thin after chemo,but would give me gas and a sedative,to help ,what a load of rubbish ,my blood would be the same if I have a local ,or a general ,I just think it’s to much hassle for them ,I didn’t get gas or air last time or a sedative,only a local ,I think there short staffed ,I will try again when they ring me back

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