Hi Jan – thanks for your reply. I have also noticed that some of the questions are a little bit more probing – I have used ‘Now I can Travel’ for my last few holidays and they were very competitive. Even got an annual policy to cover the states and a cruise in the Caribean last October so I was rather complacent this year and on the strength of it booked another cruise – but am having major problems. They said my white blood count was too low – so when it increased I rung them again – but the they said my platelets were too low at 139!!
Yesterday was just a phone day sat ringing around – most people wouldn’t quote even though they advertised themselves as providing cover for cancer and more serious illnesses. When I did manage to get a figure they were around the £1000 mark – which is beyond the pale!! I have looked at the Macmillan website and there are a few options to have a look at – but will have to wait while after the weekend. I feel relatively well at the moment but I am in a clinical trial so I do take chemo orally along with other things. Once again thankyou for your reply and if I get any joy will let you know – have a good weekend!!
Lizzie
Hi – you lovely people out there – not been on for quite some time. Had my stem cells replaced on the 9th may – spent rather a gruelling time in hospital – went back to Hallamshire on the 21st August to be told I am all clear – a trace of paraproteins – too small to measure. Yippee!!! Does this mean I can say I am in remission? The consultant never used the word and I was so teary all the questions I wanted to ask went out of the window!!
Also has anyone any telephone numbers/ websites for holiday insurance – my husband definitely deserves one.
Love to all
Keep strong for our never ending fight
Izzie
Hi Rebecca
To-day is day 16 and they were going to let me home but unfortunately have had three temperature spikes of 39 degrees and they like you to have at least 5 days at a normal figure, makes sense because if you go too early you end up coming back in. So that said Monday at the earliest – which I am quite happy with. I do feel better – no pain – just tired which I can cope with. The treatment I have had has been excellent – nothing too much trouble – praising you all the way for the way I’ve coped – sometimes we all need a bit of that!!! And think sometimes we are too hard on ourselves.
Hello to everyone out there who sent me there good wishes – much appreciated and certainly spurred me on.
Izzie
Hi Rebecca
I knew I could reply on you to give me good news – you are always so positive and I truly believe it stood you in good stead for your excellent recovery – will see what tomorrow brings – i am taking a day at a time and trying not too dwell to much but it is already day 10, they can’t keep me forever! Just hope no problems crop up that could throw a spanner in the works.
Love
Izzie
Hi All
Thought I would be on this forum everyday – but due to being indisposed – so too speak – couldn’t be bothered. Must feel a little better – as you said Keith 2 days after the chemo felt fine – but not anymore. I have no appatite and have not eaten for three days but still manage to be sick – also the tummy trials have now kicked in ( to-day is Saturday) so waiting to see how long I am going to ne ill with that side of things. The staff have been marvellouse – changing medication – suggesting alternatives – I have seen more consultants and doctors in the 10 days I have been here than ever I did when I was initially treated as an outpatient.
Do any on you think I am through the worst of it? As I said before I am not the most patient of patients not sure if it harder that what I thought or not as strong as I imagined – the jury I out on that one. What did you say Helen – that’s its a roller coaster that we are on – I can’t think of a more apt way to describe it!!!!
Love to all
Izzie
Hi Mavis
Thanks for your reply. I am in hospital at the moment – had the dreaded Melphalan Thursday – sick virtually straight away and they gave me an injection which helped considerably. Stem cells returned on Friday – felt queasy so they gave me another injection. I feel OK at the moment – just starting to feel a little tired.
Thanks for the reminder about the Zometa – I had heard that before and must remember to ask – although I am on a clinical trial so wondering if that makes a difference?
Thanks again and my very best wishes
Izzie
Dear Helen
Just read your news and your consultants visit. You do have a lot to think about but it looks like they are ‘not allowing the grass to grow under your feet’ and have got you sorted out with a new line of treatment. Please let us all know how this is going when you get started – I know what you mean about being off the drugs. I have not had the chemo/steroid regime for some time – am only on strong painkillers for the dreaded neuropathy – so felt I was just started to pick up. Now in hospital for the SC relacements this afternoon – and all the medication starts again – how they all interact with each other – I don’t believe they truly know – but we have to leave it in their ‘capable’ hands. Hope this regime does not take it out of you too much and is more than tolerable, I know I have thought sometimes ‘is it worth it’ but I try not to dwell on this negative thought too much and must truly believe that it is worth it! We didn’t ask for it so the powers that be must have thought we had the strength to deal with!! Gosh I,m doing a lot of rattling – I will put it down to the medication – ha ha
Good luck and my very best wishes
Izzie
Hi everyone
As you know go in tomorrow for my chemo – stem cells on Friday. Just been to-day for all my last minute blood tests and the like – asked them what my paraproteins were – as have not been on any medication for a while – since I was waiting for my admission date. They told me that my pps showed a trace – too small to measure. Feel thrilled – hope this is a good omen – was worried that they would be slowly creeping up. Best bit of news I have had for ages!!
Truly amazing that one small piece of good news makes one feel so much more positive – ready to take on this bloody awful cancer that we have. Anyway just wanted to share it –
Love to all
Will keep you posted
Izzie
Hi Maureen
Thanks for your reply – much appreciated – since I will be in hospital for at least a couple of weeks – I don’t think I will be off this forum – not much else I can do. I think I will be boring everyone with a blow by blow account and asking you all for advice – just waiting for it to be over and done with so I can get on – just feel like I’ve been stuck in
Limbo for the last 12 months.
Thanks again and my very best wishes
Izzie
Hi Tom
Thanks for your reply. I was also on velcade and remember initially having minor pins and needles – the medical staff asked me about it and I said that it didn’t really bother me and to be fair at that particular moment in time that was the only problem I had. Little did I know how serious it would become and the fact that I had to stop velcade because it caused my blood pressure to drop dangerously low – so I assumed the minor pain that I had been having would also cease – which was not the case. If it had been explained to me more fully ie that the velcade can damage the nerve endings in you feet and hands I would have sought help sooner! That’s me all over – tomorrow is another day and it will probably be better then. I am my own worst enemy! You do seem quite fit – I have suffered with fatigue so that combined with the pain of neuropathy makes walking difficult – and I know the lack of exercise is not really helping. Just hope these new painkillers that I have got to-day – Oxylan – will sort it.
Good luck to you also
Best Wishes
Izzie
Hi Rebecca
Thanks for your reply – I did get your email with telephone number (thankyou) but to be truthful do-not go anywhere because of the fatigue – it just wipes me out. Not sure if this is because of the constant pain of the neuropathy or just me. I had occasion to ring Hallamshire for something else and thought I would mention how I felt – and they were very sympathetic and said – everybody is different – probably just the way I am. But I felt just like someone else on this website (I forget who) who said she didn’t feel like she was in remission because she felt so ill. I feel the same – Hallamshire told me I had achieved a very good partial response – paraproteins down to 1.9 – but I still feel rubbish.
I have read about you saying you are back to normal and must admit to feeling very jealous – I suspect you were very fit before you had Myeloma?
Best wishes
Izzie
Hi DickB – Thanks for taking the time out to reply. I can’t remember how long I have suffered with it – but it does seem an age – I like you find moving about is better – although I have serious fatigue problem – which doesn’t help – so am in a bit of a catch 22 situation. Hopefully will look back on this episode and wonder what I was making such a fuss about!!
Best wishes
Izzie
Hi Helen – Thankyou for your reply – comforting to know that someone else felt the same way I do now – thought it was just me. Hopefully – you no longer have it? Been back to GPs this morning for another type of painkiller – so fingers crossed – this may be the one – in which case why didn’t she give it me in the first place! Sorry – having a bit of a rant – but that’s what pain does for you.
Will let you know
Regards and Best Wishes
Izzie
Hi – forgive my ignorance – but I am no computer whizz kid – viewed as a necessary evil – possibly because they do-not do what I want them too. Trying to send a private message – just keeps telling me that an error as occurred – am I doing something wrong. I have put on the user name – but no topic. Any ideas?
Many thanks
Izzie
Hi – I live in South Yorkshire – half way between Doncaster and Barnsley. I was initially diagnosed at Barnsley hospital but they did not have any clinical trials so I opted to go to Doncaster. I had the majority of my treatment there as an out-patient attending once a month for a bone strengthener administered intravenously, blood tests and to collect medication. When my paraproteins came down I was then transferred to the Hallamshire at Sheffield with a view to having stem cell therapy. My stem cells were removed early March and I am just waiting for the phone call to return to the Hallamshire to have my stem cells put back in!
I suspect you could do the same ie have the majority of the treatment at Rotherham and then to Hallamshire but your consultant will obviously be the best person to ask. Anyway hope this has helped – Good Luck.
Best Wishes
Izzie
