[juliewelmanParticipant]

Dear Carol,
After a lovely break in the Isle of Wight we had our grandchildren for a week which was great fun but totally tiring. Well how did you get on with your appointment? Hope everything was good. We were planning to set off for Spain in about a week but now the husband was rushed into hospital last week.He is now home and recovering but I am putting our plans on hold for a week to make sure things are o.k.Do you have any plans to set off for Spain? My youngest son is there at the moment. It is the 1st time he has driven himself in Spain so I was quite nervous but he is coping fine and enjoying the freedom.Look forward to hearing from you.
julie

[juliewelmanParticipant]

Hi Mavis,
I was told about PP levels during my appointments at Castle Hill Hull.This is where I attend clinic and will have treatment although the stem cell harvesting is to be done at Jimmy.s in Leeds.I find it rather confusing as I see different consultants at each appointment and I am told different things. It has taken me this 4 years to glean as much information as I now know.I have been told such conflicting information from originally that I would do well to survive 5 years to 4 months ago being told that I may never need treatment so I always believe the good ones and forget the rest. The truth is that no one can predict how a patient will do as this is such an individual disease.I don't feel the same way about it as I originally did when I really thought I was counting off the months I had.I now make the most of all the time between appointments and squeeze in as much as I can.If I carry on like this I will die of exhaustion not myeloma.
Julie

[juliewelmanParticipant]

Hi Carol,
I would like to send you good wishes for your appointment tomorrow and hope everything is going well.It was interesting to hear that were tired, breathless and had headaches in the years before you started treatment, as I have all those symptoms but I am told that I am not amaemic. I was in the months after diagnosis but I had lost a lot of blood during surgery and after a 6 months course have never been anaemic again.
I was wondering how you plan to get your horses down to Spain for a holiday as I find travelling with a lively labrador hard work.Where abouts are you in Spain? We are near Altea in the Costa Blanca.
We are just heading off tomorrow for a short break in the I.O.W.
Thinking of you.
love Julie

[juliewelmanParticipant]

Only joking Ted but I don't live that far from you. I am in North Lincolnshire. I am often in Leeds as our son is at university there. My husband had his kidney transplant in Jimmys and that is where I will go for stem cell harvest when the time comes.
Julie

[juliewelmanParticipant]

Hi Mavis,
I was diagnosed in Nov 2007 with the spinal cord tumour and tests showed I had myeloma. I had the tumour surgically removed with a good degree of success but have been left with weakness in my legs due to nerve damage.My paraprotein levels at that time were 22. Within a year they had risen to 28 but now seem to be stable and last reading was 27.I was told that treatment usually becomes needed when levels reach about 30, but that this is not set in stone and if all other levels are o.k. it can be started even later.At the moment all my other levels are normal so they do not expect any deterioration in the next 6 months so not to go back until Feb.I have started to feel reallt tired but don't know if this is the myeloma. The consultant was not worried by it. What are your levels at the moment? What kind if tumour did you have?
Julie

[juliewelmanParticipant]

Pity you don't live near me Ted as it would be great to have help with my computer skills.
Julie

[juliewelmanParticipant]

Dear Carol,
Good to hear from you. I have had a long think about your question about whether I feel better in the sun in Spain.
It is hard to judge as our lifestyle in Spain is so different from home.Our Spanish house is all on one level and quite compact so I spend a lot of time stretched on the sunbed resting and reading whilst the husband waits on me so obviously I don't get so tired. I do take one of our labradors with me so have regular short walks which keeps the bones moving.My husband has even more medical problems than me and had a kidney transplant 4 years ago and he definately feels so much better in Spain.I really feel that he wouldn't be here now without his long holidays in the sun. I think you would be better to wait until yiou have recovered well from your transplant before venturing to Spain although we know from past history that the facilities in Spain are fantastic.
i would love to know how you felt as you got nearer to the time of needing treatment. I know I am definately not feeling as good as I was a year ago but thuis could be for other reasons. I was 54 when diagnosed so classed as young to have this problem. That makes me feel good .
Hope this helps.
Julie

[juliewelmanParticipant]

Hi Ted,
I was diagnosed 4 years ago and so far have not needed treatment. I have been feeling increasingly tired over the last few months but my levels are remaining stable and I have been told I can now wait 6 months until next checkup.Like yourself I have read of others all undergoing treatment and I feel a bit out on a limb. Every timeI go the clinic I seem to see someone different and I have received conflicting information of outlook.I am grateful that I do not need treatment yet but find living with it hanging over me quite difficult.It is hard for others to understand how you are feeling when there are no outward signs.I was only diagnosed as I was found to have a spinal cord tumour which was completely unrelated to myeloma.The surgery has left me with some permanent damage so my life has changed significantly. On the plus side I have finished work and spend a lot of time in Spain in the sun and my husband spoils me.
Julie

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