Hi Sandra
Welcome (but sorry you had to join us – Best of luck with the transplant. I had mine done at St Jame´s Leeds and they allowed me to take in both pillows and duvet (my husband also brought in a kettle which we kept discreetly tucked away in a cupboard but they knew I had it and understood as my room was so cold and the drinks were always tepid by the time they reached my room.
Regarding the ice please ask them beforehand if they can give you anything – even if it´s just plain icecubes as from what others have told me it´s well worth while doing and I just wish I had know about it at the time I had mine as it does seem to have saved them an awful lot of the side effects.
Anyway, I know we shall all be thinking about you and wishing you well.
Love Carol xxx
Dear Min
Thank you so much for sharing your loss with us – I look at my darling husband who cares for me and now understand better why he is at times fussy and overprotective (in my grumpy independent eyes anyway).
Having lost my first husband of 21 years to cancer I have been where you are. Two things – keep breathing and keep taking that white tablet – or whatever else it takes to get you through.
You have been so brave and strong – please look after yourself now at least for a little while.
You are in my prayers.
love Carol xx
Hi Chelle
Only just read of your rotten news and I am so sorry that it´s taking a while to find the right treatment for your husband and obviously taking it out of your both in different ways. We all understand that it´s very hard to remain positive – at times all we can do is keep going whilst we let the doctors try and figure things out on our behalf. I was pretty down when Velcade didn´t work for me as I thought it was the answer to everything and even Revlimid was very slow but I had my transplant in Feb of this year and am in remission at present.
Although I can´t offer any medical advice I do send my support and prayers to you both.
Love Carol xxx
Hi Bridget
So sorry your having so much pain – hate to think of you putting up with it if there is something the Hospice could offer above what you already have might it be worth a short stay? Would it mean going in for very long to see if they could help? I know how you feel – I wouldn´t want to be away from home either but perhaps if it´s 48 hours or so could you put up with it until treatment options become clearer?
Anyway, you know what´s best for you – spoil yourself as best you can. Whatever works for you is the best way.
Prayers and very best wishes
love Carol xxxxx
Hope your feeling better soon Dai. Fingers crossed that your feeling better soon and you get to enjoy your holiday.
Carol x
I simply don´t understand why adults who are fighting a life threatening condition are now allowed a record of their treatment progress.
Whilst I was undergoing my conditioning chemo prior to sct I asked my specialist for a photocopy of my prescription which included my monthly blood results including neutrophils etc. etc. I was on such a complicated tablet routine that I needed it just to know what what tp take each day and when. My specialist was quite happy with this and understood that it was a useful memory aid given that I did everything myself at home. This was provided free so I can´t see why we can´t be given a copy of our results automatically – after all in our pct we are supposed to get a copy of any letter sent from our specialist to our GP which can be quite technical so where is the difference?
Carol xx
Hello Everyone
Just a lne to thank you all for your lovely messages following my good news – a zero paraprotien level. You have all been so encouraging and just wanted to say that the last year has been made so much easier having such a support network to turn to. Nice to know that we are all welcome whatever our news is – good or bad.
I have got into the habit of popping in here most days and can´t imagine not doing – the kind of support given here just isn´t available from anywhere/anyone else and it is invaluable.
Prayers and good wishes to those who are struggling at present.
Love Carol xxxx
Hi all – a little bit of GLOOD NEWS!
Re: Myeloma 11 trial
We saw the specialist yesterday who was really pleased (pp still at 0) and has reduced the revlimid from 25mg to 10mg so I am hoping that some of the side effects reduce. I have lost quite a bit of weight so I am hoping that will stop now and my appetite improve. I don´t have dexamethasone so at least I don´t have all that to contend with just now thank goodness.
I hesitated to write with good news as I know there are many that don´t have such good news at present but on reflection I think that we have had quite a lot of sad news and perhaps a bit of good news might help to cheer us up – well I hope so.
Take care all
Carol xxx
Hi Dai
We have something on those lines and maybe everyone does. Anyway, we got a folder when we first started treatment which logs all visits and treatments – it also provides a brief intro to chemo,basic glossary etc. To be honest I haven´t really used mine as it was just yet another thing to cart around (and lose on bad days) but I can see the advantage of it.
Does everyone get this do already?
Cheers Carol
Thanks for the good wishes for tomorrow – we have crossed fingers, toes and everthing else!
If the Specialist thinks it´s wise for me to go so far we are thinking of investing in a horse transporter but my husband would have to drive down to Cataluña where our place is and I would have to fly. I did ask if I could go down with him and help but he thinks that would be ever harder as he would spend his time worrying about me getting proper rest breaks etc. Obviously with horses the quicker he can make the journey the better. Fortunately they are ex competition horses so are well used to travel but even so once they are in a box with a hay net it´s better to keep going a while if you can.
Anyway have a lovely break away. Hopefully we shall chat again when you get back.
Love Carol xxxx
Dear Julie
Thank you so much for your promt an informative reply.
I do understand how difficult it is to compare the two lifestyles as our house in Spain is also mainly on one level but rather big. Basically I can do what I want when I want there and my husband is proposing that we take our horses on holiday with us as we have facilities for them there. I am seeing the specialist on Monday so will ask advice. To be honest, it might help my recovery to be away for a while if only to get a rest from business and family pressures.
Regarding how I felt as I was approaching the time it was decided I needed to start treatment – thats rather difficult as I think I had actually begun to be accustomed to always feeling awfully fatigued as anemia had always featured high on my list of symtoms – headaches, short of breath lack of energy and sleeping lots. Also, I had suffered from pain in back and ribs for quite some time so had just found ways of doing jobs etc. that didn´t agrivate that. I was very tired but I´m not sure that I felt any worse than in the previous three years when the paraprotien levels started to rise – I really just started treatment because my Doctors felt that I should and as they are the professionals what else can we do? They have looked after me really well and I also like the team who care for me which helps a lot.´
I know the facilities are excellent in Spain but I found that I struggled wo translate everything for my husband (who struggles with Spanish) when I was ill or attended clinic. It really did just put an extra burden on me at a time when energy levels were really very low. I certainly would never move back to Spain permanantly as I have felt so much more at home here and would have struggled to adequately express myself during my transplant when at times such as infections etc. I was quite unwell.
Anyway, don´t know if any of this helps but I am certainly looking forward to a couple of weeks sunshine after all the rain we have had of late and being guaranteed good weather to play with my horses when I am well enough.
Best Wishes
love Carol xxx
Hi Bridget
So very sorry to read of your rotten news. You are most certainly allowed a good long rant because I know having read your posts over recent months that the minute your short lived (by my standards) rant is over you will brace up, buckle down or whatever expression suits and once again face whatever you have to with determination and dignity.
Sorry too because being on Revlimid myself I can well understand how much you were looking forward to a little rest from it just to gather your forces a little.
Lots of luck for next week.
Love Carol xxxx
Thank you Dai – perfect.
Do you think it would be good to hear from people who are enjoying some of the ·good new· times or perhaps setting themselves a goal, big or small and how they get on? It would certainly help keep me motivated in trying to achieve my own little ·daily/weekly etc. goals. It can´t be all doom and gloom or this stupid illness is winning.
Carol xx
Hi Sally
As usual all the lovely people on this site have given you some excellent advice but I just wanted to say a quick hello. All I can say is that I thought I appreciated my husband before I started treatment last year but having got through the transplant and a slow recovery I have felt so sad for anyone who has no one to support them through this awful time. – if it wern´t for you your dad would be in an even worse state as your mum is making things more difficult for him.
Your a lovely caring daughter and you have probably already realised that to help your dad your going to have to bite the bullet and get some professional intervension in order to ensure your dad´s care. There may be times when your dad simply isn´t well enough to care for himself and you simply can´t do everything for everyone so please do get dad`s GP, Macmillan, his specialist all involved and aware of the situation so they can formulate a plan to help you and your dad – you both deserve and need it.
So sorry that you and your family are having such a difficult time.
Best Wishes
Love Carol xxx
Hi Meera
I don´t have any knowledge of plasmacytoma I´m afraid but I did see a mention of it under one of the other topics. I´m sure you will get plenty of response from people with experience of this as soon as they see your post. I´m sorry your struggling with the tiredness – I am very tired and stuggle to even do the housework let alone look after a 9 month old!
Also, it may be worth ringing the Myeloma specialist nurse on this site who will be able to give you some informed advice.
I think we all understand the anxiety of not knowing what is coming next and it´s not always an easy thing to talk to loved ones about it either – as we don´t want to make things even more worrying for them. I find that keeping busy and physically active as I can does help lessen the anxiety and also helps me get a good nights sleep. Also, I try to keep everything as normal as possible but let myself rest when my body tells me its had enough – although with a little one at home I know that it´s not easy – hope your getting some help.
You may never develop MM and if you do the outlook has changed dramatically over the last few years – very positive news now and better to come!
Sorry cant offer better medical experience or advice but wishing you good health and fun with your little boy.
Best Wishes
Carol xxx
