[meganjaneParticipant]

Hi Chris,

I will certainly post about the kyphoplasty once things move along. Phil has finally managed to get his consultant at Bart's to write a referral to a neurosurgeon for him so depending on how long the waiting list is Phil should hopefully hear something in the next few months. Phil has been asking about kyphoplasty since June/July last year but it was low on the list of priorities for the doctors and the consultant but it has been high on our list of priorities!! Although the pain is not dreadful it is constant and if Phil stands or walks for more than ten minutes the pain gets worse. We have heard great things about the operation so although I am trying not to get my hopes up too much I am hoping it will help with Phil's back pain, i.e. get rid of it 🙂

Megan

[jmsmythParticipant]

Hi Chris

In December when cells were harvested they told us that the stem cell co ordinator would come to talk to us, but she was called away. Every time we have been to the hospital we are told that she will be in contact very soon. We are still waiting. I wanted to,phone her but as Frank is having second thoughts he told me not to. We go to,hospital on to,or row week and I am going to ask nurse to put Franks file I with the consultant. To be honest Frank does not even want to see her. As you say Chris the waiting is terrible but I'm really beginning to get angry. I read on forum about people being given dates weeks ahead. We were told that they will not know when a bed will become available until that morning. Mind you in December a registrar told us he would be called before Christmas and last month we were told that the unit was not that busy and that he would make an appointment for February but he would be in before then!!!! Sorry for the rant Chris but the longer this goes on the more Frank is turning against it

Hope you are doing well Chris
Love Jea x

[jmsmythParticipant]

Hi Chris

In December when cells were harvested they told us that the stem cell co ordinator would come to talk to us, but she was called away. Every time we have been to the hospital we are told that she will be in contact very soon. We are still waiting. I wanted to,phone her but as Frank is having second thoughts he told me not to. We go to,hospital on to,or row week and I am going to ask nurse to put Franks file I with the consultant. To be honest Frank does not even want to see her. As you say Chris the waiting is terrible but I'm really beginning to get angry. I read on forum about people being given dates weeks ahead. We were told that they will not know when a bed will become available until that morning. Mind you in December a registrar told us he would be called before Christmas and last month we were told that the unit was not that busy and that he would make an appointment for February but he would be in before then!!!! Sorry for the rant Chris but the longer this goes on the more Frank is turning against it

Hope you are doing well Chris
Love Jea x

[FOXLEYParticipant]

Hi Jean,
What a miserable time you are having and of course you suffer just as much as Frank and again it is so difficult to complain when you are in the midst of it for fear of even worse treatment being given.
Just hang in there and reassure Frank that it will be worth it in the end.
It is now 11 weeks since my transplant and apart from having more aches than usual for a fit 69 yr old and some loss of stamina I feel OK. Thank you for asking and good luck with the next appointment.
Chris

[jmsmythParticipant]

Chris Frakn is also a fit 69 year old. We have been told that they won't do the STC after 70 which Frank will be end of April. At the time he said it was discrimination and as long as he was fir he would fight for a second SCT. Now I'm fighting him for the first one.

Take care Chris and go from strength to strength
Love Jean x

[FOXLEYParticipant]

Hi Jean,
Please don't worry about some sharp cutoff at 70. I got the distinct impression from The Christie clinic that the decision about whether to go ahead or not is taken very seriously indeed with the best interests of the patient at heart. Existing level of fitness plays a very significant role in these deliberations I was told. Mind you they do everything to put you off during the consent interview, which in my case lasted about 30 minutes.
Chris

[tomParticipant]

Hi Jean and Frank

Hey yopu two are going through it aint you 🙁

Its the wait it allows our bloomin brain to run riot when we have no drugs to take and just waiting 😐
Lets hope its soon sorted and that elusive bed pops up soon.

Love Tom Onwards and Upwards xxx

[VickiParticipant]

Jean and frank,

Firstly what a lovely picture, is that a grandchild there :-). So lovely. Time to put the Vicki head on and get someone to be a bit organised……question when and where's the bed. It's giving frank too much time to think and you too…..we have a friend of the family who was due to have sct same time as Colin but due to one thing and another , cold, infection etc he hasn't had it yet and it's playing havoc with their minds…..but there seems to be health reasons. Why has there not been a bed for frank. As frank is fit I don't think the looming 70th will make any difference but the time delay or worry and doubt will.

Keep at it and in the meantime, enjoy your grandchild?
Vicki and Colin

Ps Ali how's your mum doing? Colin has appointment at hospital next week 20th to get bmb results and he's had the paperwork through to consider the randomisation options, he doesn't know which one he's got but he's dreading taking revlimid or the other one again due to the side effects. How's your mum doing on it?

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