[GayeParticipant]

Now stop this girls – worrying about where Wills has got to. He's getting married in the Spring so no wonder you can't find him – he is in the arms of another. Put this wanton lusting away and tell Wills to sod off back to Katie. Winter is for gorging and putting on the blubber – Spring is for prancing around in the daisies, sylph-like along with the litle lambs and licking your lips at the thought of a lovely lamb chop, Jersey Royal spuddies and fresh mint sauce. I am slavering already.

Dear Thunderthighs of Bedfordshire, AKA Brocho and Bridget. You must get a grip because my back pain just cannot take all this laughing. The vision of a ciggy-smoking mother whale in the middle of Luton is just too much for a sensitive soul from Essex. Aaaargh.
Love, Gaye xx

[GayeParticipant]

Hello Sean – Get on to MacMillan as soon as you can and get all the advice you need. As for the Blue Badge I applied for one and got it very quickly with the help of Macmillan. For a long time I didn't use it because I was still mobile enough but I am so glad that I have it now. Also I have been registered as disabled for some time and receive DLA which has increased as my mobility has decreased.

I am sorry that your SCT doesn't seem to have worked and that is a blow. Even more reason to get your financial affairs and everything else that affects your life into some order so that you can take away all that worry and concentrate on dealing with your illness. Don't hesitate Sean. MacMillan are there for all of us with cancer. Do keep us informed if you can. Good luck.
Gaye x

[GayeParticipant]

Thanks David and Bridget. I will keep you up to date. David, Pomalidomide is a derivative of Revlimid (Lenalidomide) and is taken orally along with dex. Although it is in use in America it has still to receive its licence in Europe but I think third stage trials are going on soon so hopefully it will be available in the not too distant future. It felt strange knowing my application was being heard around a table miles away in America but thankfully they agreed.

I am glad you are doing so well David and Bridget I hope you can start your RT soon to get some relief from this poxy pain!

Lovee to you both, Gaye x

[GayeParticipant]

Dear Keith – yes I have experienced that before and am now. My main pain was in my lower back and now it is in the left ribs. Also my back just aches most of the time. Apart from that I am fine ……………….!

I'm down to have some RT wich I imagine you will too Keith. Oh happy days!

Good luck with your tests and hope you have a caring and gentle doctor when your BMB is done. Enjoy your cricket – it looks like England have it in the bag!
Lov, Gaye x

[GayeParticipant]

Dear Jayne – I too am a patient at Barts and it's likely that we have been at the same clinics but not known it! They have a very good day unit which will certainly be open tomorrow morning as well as a myeloma nurse specialist who you can contact. Failing that go to your consultant's secretary and request an earlier appointment. I have had excellent treatment there and they are always very helpful. If you need any more info on Barts or just want to chat my address is wright.gs@virgin.net. Would be happy to help.
Love, Gaye x

[GayeParticipant]

Dear Jayne – you are very welcome to this website and although I am a patient and not a carer, you will find invaluable advice from those who know all those feelings you described. I think one of the best things you can do initially is to contact Macmillan and find out about financial assistance (and other services they can offer) – it can be a real worry and there is help available.

How long are you from your next appointment? Can you ask to bring it forward due to the symptoms? I think we have all learnt on here to be as pro-active as possible rather than wait and see. Once you know what you are dealing with the better it is to cope. If you are both in denial you won't be the first or the last – we have probably all gone through that at some time or another.

I hope that other carers/family members on this site will be able to help you. We have a saying on here started by our Tom which says Onwards and Upwards. One that has always been helpful to me is One Step at a Time because that's how I can deal with living with myeloma.

Love Gaye x

[GayeParticipant]

Wonderful news Mari! Go, go, go!
Love, Gaye xx

[GayeParticipant]

Dear Amelie – well we are certainly learning a lot about you and what a great way of raising awareness of myeloma as well as giving pleasure with your music. I wish you good luck!

I was very interested with the comment that Denmark is far behind other European countries in diagnosing cancers other than, say, breast cancer. We are often told in the UK that we lag behind most of Europe with survival rates because our diagnosis is often not early enough ie are the GPs not aware enough of all the different cancers? In this thread you can see that some of us were literally diagnosed by a simple blood test very early on whilst others went undiagnosed for many, many months. It does seem to be a lottery but I think it will long be the case for myeloma whilst it remains a rarer cancer. Thankfully in our case here we have Myeloma UK doing battle on our behalf and for that I think we are all very grateful.

Love, Gaye x

[GayeParticipant]

Happy Christmas Shirley – you are on your way and that is great. It won't be long before you are back home and looking forward to the future. Keep going girl!
Love, Gaye xx

[GayeParticipant]

Dear David – Happy Christmas to you. I can't remember having any tooth problems after transplant so I can't help you but there is bound to be someone on here who has. It may just be waiting for nature to take its course as your taste comes back. I hope you can find an answer.

Love, Gaye x

[GayeParticipant]

I am so sorry to hear your very sad news Roz. I hope that Michael is now at peace and that you will have the strength and love of people around you to help you through this very sad time.

Best wishes, Gaye x

[GayeParticipant]

Amelie – I don't know about a simple blood test to detect MM but my own GP first became suspicious of mine through an unrelated routine blood test for possible thyroid problems. He obviously was not happy with the result and suspected myeloma. A second blood test was taken and shortly after MM was confirmed by the hospital. I had no symptoms of myeloma and that is the problem. Because back pain is a big part of myeloma, doctors tend to treat the pain at first rather than looking for the problem and it can take ages to make the diagnosis. It is as much about GPs awarenesss of myeloma to make the connection between back pain and I would say that most GPs don't see many cases of myeloma throughout their careers.

Mine was very easy to diagnose initially by blood tests. My GP did not suspect it but found out quite accidentally looking for something else!

Good luck with your presentation Amelie.

Gaye, x

[GayeParticipant]

Dear Sharon – this is why myeloma and where it breaks out never ceases to amaze me. Yes, it truly is a bummer in every sense of the word. I know what you mean about the children and it being their time. So, I have hope are not getting too much discomfort from your plasmacytoma and enjoy your Christmas.
Love, Gaye x

[GayeParticipant]

Sharon – I do agree with Bridget about your news being a complete bummer but whatever your consultant feels about future treatment, I know he will have your very best interest at heart. We will be here supporting you.

My plasmacytomas grow on my head so I always know when activity is increasing before the docs do!

Do have an enjoyable and peaceful Christmas.
Love, Gaye x

[GayeParticipant]

Dear Sarah – I have had two SCTs and the second one was harder to recover from. In my case it was Hb levels but they never came back to 'normal' levels and I have been on blood transfusions ever since. So he is not alone and let's hope that all the counts will start to rise sooner or later. Remember the treatment is not so powerful as the first and his recovery may take that bit longer. Hang on in there Sarah – I can understand Gordon feeling depressed but I had mine 3 years ago so I hope that will give you a belief that it does get better.

I wish you all a peaceful Christmas.
Love, Gaye x

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