[VickiParticipant]

Hi all,

Once again thanks for the advice re the lollies, and recounting your experiences. The info about the hickman line really helped Colin so thanks!

Mari, I hope you and Stephen enjoy your holiday! Colin and I were too apprehensive to travel anywhere as early on he had some cracking infections and a really bed rigour where I had to call an ambulance as we did not know what was happening. That un-nerved us as we only bit the bullet this last weekend since he was diagnosed, to go to Cornwall (and I was worried about that LOL!).

Peggy, good luck and onward progression to SCT (looking forward to it would be pushing it I know!).

Teresa, thank you for your kind thoughts and words, they are appreciated. I hope your husbands pain is under control now!

Stay well all

Vicki and Colin x

[tomParticipant]

Hi Vicki and Colin and all you others on this thread 😉

Please take a look and see if I posted on here?? am sure I did but did I click send or just move on to another post?? or is it in cyberspace?? hey ho al do another for you Vicki and Colin 🙂

Great news that you have dates and a plan for when it all should/will get done and I hope it stays to plan 😉 its gonna be a scary thing all this lot but apart from the growth injections giving rib and back pain (for about two/three days intermittent) the treatment will be "Pain Free" 😀
As for the Ice Pops I took in two boxes (asda I think) and dint use them all. one tip is when in having SCT they will/should give you mouth wash and they tell you how often to use it ? well I say that every time you pass/go to bathroom get a good wash with it the more the better.

((Wow this post seem longer than the first lol))

Love
Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Tom,

Thanks for the advice, much appreciated. Since Colin has been off treatment waiting for the big one, in the first 4 weeks he said he felt so tired and was a bit disappointed that he did not feel better. Well touching wood, how that's changed this week! He said he felt something 'change in his body', he's been back to near normal, tired by 9pm but I put that down to the fact he has gone to work full time this week, and he looks so much better (hopefully not tempting fate)….I've got a cracking cold so I hope he doesn't catch that, bad timing over the next few weeks!

I hope this is a sign of things to come…..like the special nurse said you will feel much better by the time you come in for SCT, then we make you feel poorly again 🙁

Hope everyone is doing ok,have a great weekend all

Vicki x

[foxy555Participant]

Hi Vicki

I really hope everything goes ok for Colin. It all has happened so quickly – or so it seems. I feel for you so much!! I will be going through the same thing with Pete in a few months time. At least you will be able to give me good advice!!!!

We have just come back from 7 days in Menorca – not good!! On the third day of our holiday, the pain in Pete's back, that was eased with the radiotherapy treatment came back with a vengence!!!

All I wanted to do was come back home, so frightening to see him so poorly, so far away from home!! His ankles and legs were also swollen, has gone down abit now.

He does have his monthly assessment on Tuesday and hopefully learn more.

Vicki, do take care, you know we shall be thinking of you both!!!

Lots of love

Ann and Pete

xxxx

[tomParticipant]

Hi Vicky and colin, hey I get tired and I aint having any treatment am sure its just a MM thing or old age (well for me anyways lol) and yep the Nurse is correct she will make Colin Poorly but trust me its well worth it 🙂 as for your cold well Elaine kids and grandkids had all that even when I was at my lowest and thank the lord none was passed on;-)

Hi Ann and Pete, shame about your holls and Pete getting poorly I had same last year. good luck for tuesday

Love
Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Tom and ann

Apologies for the late reply. Just got back from hospital. Colin went in today to get his line put in, and all seems to be going well so far. 3rd lot of gcsfs done and pain seems ok, apart from in his back. In good spirits. We'll see how the harvest goes as long as the line is in the right place! Colin should be coming home sometime tomorrow.

It's been an interesting weekend. I'm so paranoid about bugs when Colin comes home, I've changed the carpet in the lounge and dining room, and got the 3 piece cleaned…..what did I get for my effort, an allergic reaction to the chemicals used on the sofa and ended up with swollen face, eyes and a rash! Nearly gone now!

Ann so sorry to hear about your holiday, at least you got some sun but very scary, you were both brave to go!.good luck for tomorrow , I can't say things get any easier but we are learning to deal with it better, with the odd blip of being overwhelmed.

Keep well, and Tom thanks for your support and humour, it really helps.:-)

Vicki x

[tomParticipant]

Hi Vicki your more than welcome 😀 gosh I wish I could Blush?? Lol.

I hope Colin got home today? as for the paranoia about infection and stuff I went out and about the same week I came home after my SCT and folk knew not to come near me if they were diseased ha ha.
Keep fit and rest often Vicki am sure you need it also

Love and Hugs

Tom "Onwards and Upwards" xxx

[KeithH17Participant]

Hi Vikki, joking aside you can never treat the possibility of infection too lightly. the first 2 months are crucial and if you can get past that without a problem then you have been extremely lucky. I got very bad infections during and after both my transplants and I was ultra careful. My wife was very thorough and cleaned everything with disinfectant and would never go out without a good supply of antiseptic wipes for wiping door handles and shopping trollies. Also one of the main causes of cross infection is money which passes through ever so many hands so try to remember not to touch your face and mouth and wash your hands regularly and always before meals. Remember one infection can spoil and set back the recovery and maybe even force you back into Hospital and none of us want that do we?

Best wishes to you both.

Keith.

[eveParticipant]

Hi Vikki
Hope Colin is home and resting,I think we all go a bit over the top when we realise,some one you care about could become seriously ill,so we do are best to keep everything clean.It is a bit of a worrying time,just do your best,and make sure food is thoroughly cooked.Love Eve

[AliParticipant]

Hi Vicki and Colin

Just wanted to wish you luck for stem cell collection today, let us know how Colin gets on!.:-)

My Mum has got her date for SCT – next Wed 1st Aug unless a bed becomes available sooner – oh goodness – I dont think any of us expected it quite so quick, but as she had to wait a very long time for stem cell harvesting etc after her initial treatment they pulled out all the stops it seems!

Anyhow – happy harvesting!

Love Alison x

[VickiParticipant]

Hi Tom, Keith, eve and Ali,

First of all Ali, hope all goes well for your mum 1st august onwards.:-) And again thanks for all good wishes!

It has been a very disappointing day :'-( . The harvest did not go ahead. The number in colins blood count was 5, when it should be 10. We have been asked to go back tomorrow for another go. Colin said my face was a picture when the doctor told us. To be honest I wanted to round up every doctor, nurse at any hospital to find somebody to make that number be 10. I feel scared and colins his usual self of trying to be controlled. I can't see how one injection tonight will make the huge difference between 5 and 10. I thought I read in one of dais posts that they would consider doing it at .8?

The doctors and nurses did not seem phased, and said in fact it was common for this to happen but when you get yourself in to the mindset it is a huge come down when nothing happens. Sorry to be negative.

Does anyone know, is the gcsf a cumulative effect? Do they build up in your system? To date Colin has not had a lot of pain although he is already on strong painkillers for his back. It's the only time I have felt like I want him to be in a bit of BEARABLE pain!, if it means those stem cells are mobilised! Let's hope for s better day tomorrow. The doctor has also said to keep Friday free.

Suppose we should enjoy the sun this afternoon, but to quote that song, it's raining in my heart at the minute. Will try to be brighter tomorrow 😀

Vicki

[HelenParticipant]

Hi Vicki
Yes GCSF is cumulative, but some people are slower than others at mobilising, its all about individuality again. They will just keep going until his cd34 is high enough to start collecting, might even give him the magic mobozil that Steve had last week, they won't give up, just ask Dai about long drawn out collections!
Keep your chin up, even though it's so disappointing, you are getting there.
Love Helen

[VickiParticipant]

Hi Helen,

Thanks for the information. That's good to know. It's so hard because we were dreading the SCT and now they can get the stems cells we are willing them on! It is a very individual condition which we should know but now;it's just all the twists and turns that can catch you out!

Hope you are keeping well,

Vicki (and Colin) who is sleeping now because he is shattered and got no sleep on the overnight stay in hospital due to a very poor man who was very disorientated! And very noisy!

[tomParticipant]

Hi Vicki and Colin

Well thats a bugger am sorry to hear Colin didn't get any 🙁 but I know its easy for me to say but dont worry it will all come to fruitition soon, they just wont stop and it all adds up and will stay in the blood stream waiting for the rest to mobilize 😎

All the best and hope the little blighters are soon out.

Love and Hugs

Tom "Onwards and Upwards" xx

[ElizellenParticipant]

What an anti-climax for you both, Vicki

I am keeping everything crossed that those pesky numbers soon get to an acceptable level.

Love to you both
Eliz
XX
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