[MariParticipant]

Morning All,

Day two of the harvest begins, another jab of mozobil and bucketfuls of GCSF, so he was straight onto the machine this morning. They managed to harvest 0.8 million yesterday and they need at least another 1.2 million over the next two days, so I feeling hopeful that they will get them.

It seems that whilst a second harvest is not impossible, it is much more difficult. We dont know how low his platelet counts are today, we will find out later.

With regard to the holiday, it's still touch and go, but I have found trains right down to that bottom corner of France, and we don't live to far from Ebsfleet, so it is doable, we shall just have to see. Of course my lovely stubborn husband will insist upon travelling alone and sending us ahead on the plane, but thats another dicussion for later. I am sure this stubborness has been a great help in getting him through his treatment so far.

I hope all is well in your worlds this morning,

Much love Mari xxx

[eveParticipant]

Hi Mari
I know110 for Platelets is low,but Slims have never been above 50,so I have given in worrying when he walks into a door or knocks himself,apart from wrapping him in cotton wool,I cannot do any more,and my attitude is if internal bleeding is the danger,why is no one very concerned.!!!!

I would agree they need to be very stubborn just to get them through all this treatment:-PI Eve

[tomParticipant]

Good Afternoon you all 😀

Well done that Steve, I know you are hanging on to them Steve but now is the time to give them over Honest the hospital will look after them till you are ready to have them Back Lol.

Keep shoveng those stems out into your bloodstream.

Tom Onwards and upwards x

[AliParticipant]

Hi Mari

We are all rooting for Stephen! Tell him to get a wriggle on lol.

Yes, I do think you have to develope a certain strong will and determination and like you say its that that sees you through.

Fingers crossed it all works out in your favour Mari – get packing!

Love Ali x

[MariParticipant]

Late night last minute post, evening all, and thank you for all your support, it is really appreciated,

Well he managed 0.82 miliion yesterday and 0.85 million today so he is nearly there, just 0.32 needed tomorrow. They are pleased that he has been increasing each day, but there is some bad news associated with this good news. If he increases again tomorrow they will have him in again on Friday. The thought of four days on the machine is doing his head in but if there are stem cells to be had they want to get them all, which of course is better for him in the long run. It does mean though that his platelet count is likely to be too low to allow him to fly, the holiday may not be cancelled but possibly on hold for a day or two, I am sure we will work it out,

I hope everyone is sleeping well, I am off to bed myself now,

Love Mari xx

[AliParticipant]

Hi Mari

Good news that the Stem Cells are being collected for sure. Its so mind numbingly boring being hooked up (as a watcher of this on Monday I can tell you I felt so drained!) and im sure that the prospect of a 4th day will not go down too well with Stephen – (you should have brought him 50 shades of grey to read lol)

Will you still be able to run with plan b? Stephen taking the train?

Well, Mums had a few "events" happen. Firstly her hair…was coming out just when she ran her hand through her hair. So, she decided she would sack it before it quit completely. She came round to borrow my hubbys clippers, but my lovely hubby set too and shaved her head (I said I would do it but possibly it would have been too upsetting a job) I dont know many son – in -laws that would have done that. Im still amazed by my very brave Mum, my hero.

Secondly she thinks she has another thrombosis, maybe its because she had to stop taking her clexane injection for a few days during the harvest? She goes to clinic on Monday, so we will find out then. I so understand the bad news associated with good news thing. Rollercoaster? Queasy?

Much Love Ali x

[eveParticipant]

Hi Mari and Ali
I hope you do manage to get away,will do you both the world of good,school brakes up soon,so that will be a rest for you Mari.

I agree Ali your mum is very brave,must be holding a lot of those emotions in,SCT is not only body draining it takes you in to another world of emotions,so your mum is holding her own,by taking control of small things like deciding about her hair,plus I agree with the son-in-law bit,I do not think if you did it you would be able to keep your emotions under control,just remember some times it,s harder for the person watching .Love Eve

[DaiCroParticipant]

Hi Mari & Ali,

As someone who spent 5 days on the harvester plus 2 midnight returns to the hospital for Plerixafor injections my sympathy levels are muted. I was more than happy to spend the time on the machine and the midnight flits, even though I was tired and each trip was a 40 mile round journey. I don't mean to sound harsh but my mantra was 'Whatever It Takes' and if it takes 4 or 5 days to ensure that I can secure my SCT then so be it. A lot of boredom and patience now for a chance of a few extra years life seems a fair trade to me.

All the very best of good fortune and if it is of any comfort my Professor said he would of carried out my SCT at 800,000 (I finally achieved 2.1M).

Hi Ali,

Your husband sounds the very kind of close family your Mum needs… and she is proving to be an independent and very brave person indeed. I agree totally with Eve too… the carer is under just as much pressure having to watch and respond… so take care of yourself as well.

Dai.

[HelenParticipant]

Hi Mari ad Ali
Watching and waiting is very hard, I do hope you make it to holiday Mari.

Ali, is your mum back on Clexane now? If she thinks there is another clot she shouldn't really hang about, get her to ring the hospital for advice.
I shaved my own hair off, I caught sight of my thinning locks in the mirror and the clippers were in the cupboard, weeping buckets,I shaved my head. I went back into the sitting room to a deathly silence, no one could think of anything to say for a minute then my husband asked me if I wanted more tea and it wasn't discussed for a week. I have photos, and now it's beginning to feel like a distant memory.
Love Helen

[AliParticipant]

Hi Helen

Mum did phone the daycase unit and she went down this pm (after a morning of shopping with me) she had bloods done and no sign of thrombosis showed up but the doc says it could be a small one? also could be an infection so she has some antibiotics just incase. She is back taking the clexane now. Potassium levels are a bit low so shes to eat bananas and drink orange juice, apart from all that and the fact shes got swollen eyes and dry itchy patches on her face shes fine! lol.

How brave of you to shave your own head, that must have been distressing. Mum has not yet looked at herself and she is adamant she will not. How very british of your hubby…more tea? If it werent such a sensitive subject I could have a small giggle.

Hi Dai

Yes my hubby does come up trumps at times and he has his uses:-) I hope you are feeling a little better today.

Hi Eve

I watched and collected up the hair and poured us a lovely glass of wine (a rarity for me as I dont usually drink – Mum raised an eyebrow!) Dad stood guard watching for the kids coming in from their friends house. Mum then put a scarf on and when my youngest boy came in he looked at Gran, then looked away,looked again and said "Gran, you look like a lady from a foreign country!" then he continued with his playing. It lightened the mood:-) How is Slim doing?

Love Alison x

[eveParticipant]

Hi Alison
Kids are lovely,I could use a few sayings to describe Slim at the moment,but I do not think it would go down well on site plus,I do not think people (except Tom ) get my sense of humour,what I found very funny is my 2 granddaughters came to see Slim,and on the way out,asked there mum could they kiss him,they are 14 and 10??.I thought it reflected Slim so well,8-)
my other grand children also visit,there questions vary,they all ways want to know has grandad still got a bone in his leg,as that is the standard excuse for aches and pains;-)
That,s what I love about kids lol

Children take things in there stride,so tell your mum just to be normal around them,I think David described these situations once, if things are talked about,you kick the elephant out of the room.Love Eve

[tomParticipant]

Hi Everyone
Well its week end again 😀 and am told that the sun will be shinning this week end :-S 😎

Eve you know i have your sense of humour and i think some one has mine :-/ as my young bride (Elaine) says I have no Sense :-S ((am sure she dunt mean it lol)

Now as for kids, I think kids know more than they let on, when I had my SCT and lost my hair not one of our Grandkids (and I had four at that time) said a word about it :-0 but when it started to grow back our Granddaughter squealed out loud gosh your hair has come back "Fluffy" lol.
And our Grandson said is your bones better cos they have been poorly havn't they Granddad (gosh i could have cried).

So for me its like "Sex Education" No need to hide it but no need to shove it at them all the time, If my Gradkids asked we told them a little so as not to frighten them.

Well Informed Kids are Good Kids 😎

Have a great week end you lot

Love
Tom "Onwards and Upwards" xxx

[VickiParticipant]

Gosh, hi to all and what a series of events.

Mari, I hope Stephen gets the right number of cells, and you both get the holiday. You will both need it! Colin is due to go for harvest Wednesday and gcsfs start tomorrow (apprehensive). We were told today that SCT has been brought forward a week so he is now duemin on 14th august.

Ali, your mum sounds a hero, as does your hubby. I am still debating about doing the head shave for Colin…… Not sure I can do it. We'll see nearer the time. I hope your mum is feeling a bit brighter. When is her SCT due to start? Children can be a real godsend and can be relied upon to make us laugh, and ask the questions no one else dares! Helen, very brave to cut your own hair off, but hey great style again now.

We've been manically trying to get lots of jobs done before Colin goes to hospital. I am sure I read somewhere no DIY for a while after due to dust, fumes etc. Hope I am right otherwise we are DIY SOS for nothing

Looking forward to this next phase with trepidation. We saw consultant yesterday and did not realise how serious it was at the outset. It nurse out bone marrow was 95 percent plasma at diagnosis, now down to 5 percent which we are told is good. All other bloods are ok, just need Colin to part with his stem cells

Vicki and Colin x

[MariParticipant]

Hello Vicki, Colin and all,

Good luck with Colin's harvest next week and for his transplant from the 14th, I am sure it will all go to plan.

Steve did manage to get his 2.1 million by hook or by crook, so we are very pleased indeed as you can imagine. Today his platelets were at 50 and that has been considered good enough to fly, we are also extremely relieved at this news. So a little break before he is back in on 20th Aug.

Interestingly he is due to get his Hickman put in place in 20th, melphalan on 21st and Stem cells back on 22nd, we were surprised that they would pack it all in together so closely. He is getting the rest of his work up on 8th August.

Thank you all for your support and good wishes, I hope you can all enjoy the sunshine this weekend,

Love Mari xxx

[jmsmythParticipant]

Mari really good news – well done Steve. Have a brilliant break you both deserve it. Enjoy

Love jean xx

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