[teds31Participant]

Hi all, Sorry I haven't been on for a while ,had a busy time ,fortunatly not with the old MM. My computer classes (teaching) have been keeping me very busy. I get where you are Solo but you mustn't feel a fraud its not your fault that there is no treatment yet, I have felt very much the same over the years,I asked the consultant at my last visit and he just said enjoy it while you can,some one on here (cant remember who) had been in slumber for 15 years,so lets hope we are the same. Update for Tom and all,I am much better seem to have got rid of the cold :-/ didn,t have to go to the Docs,seem to have lost a lot of faith in GPs which is a shame as I have always had a good relationship with all mine,but we now have what they call telephone interviews, they are intended to filter out unneccesary appointments but I dont like it I think you should be able to sit opposite the Doc and have a face to face conversation.I'm sure I dont make appointments that I dont need ,in fact I dont go when I should and that annoys Anne (wife),what do you all think do you all have these new ideas. Ted.

[tomParticipant]

Hi Ted

Well am pleased you have got rid of that Cold it hung about for long enough:-S

As for the Dr's >:-( I have what I call a vetting Receptionist 🙁 who seems adamant that I dont need to see "Her" Dr:-0 once when I needed to see "Her" Dr, I have to phone after 8 am to get an appointment 🙁 and she says to me "May I ask why you need to see the Dr?" to which I replied "Yes you can"::::::::::::::(long silence he he) :::: "Ok why do you need to see the Dr what is the problem you have?" she asked, I said " I have an Errectional Dysfunction seeing as you asked 😎 " I replied (I know its nawty ha ha) "I will get the Dr to phone you back she quickly replied":-D now thats the way teach them Lol.

Hope all is well with you lot

"Onwards and Upwards" Tom

[BADGERParticipant]

Tom

you are so cheeky you always make me laugh I agree about the Docs mine are the same its always" we can only make 48 hour apps, can I have one no we are full up phone back tomorrow its an emergency whats wrong with you thats my business and so it goes on. The road trip to scotland was good only two days rain which was in the highlands it rains sideways there its just as if a bucket of water is chucked over you. I love the new photo it makes you look cheekier than ever
Keep Well
Love Jo xx

[tomParticipant]

Hi Jo

Yep thats me am afraid a "Cheeky Chappie" 😎 And am pleased I make you laugh cos Laughter is the best medicine for us and it gives us less wrinkles Lol.
I have said before I can get into see my Consultant faster than I can my own GP 🙁 pleased you had a good trip to Scotland, its a beautiful place ( other places are also just as nice 🙂 ) I know what you mean about the sideways rain been there and done that am afraid :-/

As for the photo I chose that one as it didn't show my teeth as much lol.

Love

Tom "Onwards and Upwards" xx

[soloParticipant]

Hi Mavis,thankyou for your reply.im sorry to hear about your tumour i hope things are much better for you now.I didnt realise so many things could develope from mm,i am very lucky so far.I went to my g.p with fatigue and was diagnosed from there.My paraprotein is 41 but stable.I have a positive attitude and am always busy.I am trying to find out what i can about mm. I wish everyone all the best and hope you all stay well x

[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

[brochoParticipant]

Hi Solo welcome to our lovely group I do hope you dont need treatment for a very long time to come !!Tumours are quite common in myeloma , they are usually reduced with steroids as they are blood filled When diagnosed a very large tumour was found which had destroyed 3 of my vertebrae so my back has been reconstructed with rods and plates Since then I have relapsed 3 times and each time there has been a tumour on my spine Acombination of steroids and radiotherapy have got rid of them Ted I find the idea of GP using telephones to consult and diagnose a very dangerous one Like you I have never made unnecessary appointments and this argument just doesnt hold water!! Tom my pet hate of all time are receptionists who want to know why I want to see my doctor and I never tell them!! Hope you are all well going to have a rant now about govt ruining our nhs !! love Bridget x

[CarolBradley1Participant]

Hi Julie
Smashing to hear from you – but so sorry for the news about your poor husband. The expression never rains but pours springs to mind – you both sound to be taking things as much in your stride as you can though and I hope you can go forward with your plans soon.

We went over to Spain to check out the house last week. Also, my husband, Keith, wanted to see how I coped with flying, heat etc. I was quite poorly that first couple of days but that was the Revlimid effects building up and I had to stop taking them. I had already talked to my specialist about the neoropathy etc and she thought I might have to have a rest shortly so not unexpected. I´m starting to feel better now – poco a poco.

Regarding going back to Spain again – because there is so much work to do (there was a flash flood last summer and no one had had the heart to tell me) there is a great deal of work to be done. Fortunately the house is ok structurally but much of the padock and outbuildings are wrecked as is the driveway and gardens. Also, whilst we have been away neglect and thieves have taken their toll and the whole house needs redecorating and refurnishing. It´s going to take a couple of weeks to organise and as Keith (hubby) and I don´t want to be apart for so long we are seeing the specialist on Monday and will ask if my levels are still good enough for me to be away a couple of weeks. We just consider ourselves very lucky that the flood couldn´t reach the house and the Keith is a builder so we are not faced with such a large bill as he will just employ a gang of local builders to work for him and he can keep an eye on things.

Keith is taking a couple of horses down for me so that I´m not tempted to try and work whilst he is busy (he knows me too well!) and has bought me a lovely 15 year old school master who is much calmer than my youngster who is coming too. Luckily these horses are past racers and competition horses so they are fairly used to travelling and Keith will take his time travelling and use the stable facilities etc.I will just fly out when they have arrived, hopefully all in one piece.

Well, that´s the theory and plan Julie – lets hope it all pans out. Keith is planning to set off towards the end of next week or the one after.

How are you feeling in yourself after the upset with your husband ?(I always find that emotional upsets affect the MM more than anything but hope you don´t).
Anyway, I am crossing my fingers that everything improves for you both soon.

Take care and please do keep in touch my email is carolbradley@live.co.uk -feel free to use that if you prefer.

Love Carol xxxx

[teds31Participant]

Right its good to know its not just me that hates the telephone consultations, drives me mad,when you have something as serious as we have the Doc should be looking at you and offering advice not on the phone in their tea break. hi Solo you were lucky (if thats the word) to get diagnosed like that ,I was also lucky I went to the chest clinic and they took a blood sample and it was found like that. I was asked to go to my GP and give another sample and it said on the ticket Bench Jones ,so I looked it up ,my that gave me a shock. Take care all. Ted.

[soloParticipant]

Hi Bridget,sorry to hear about all the problems you have had,has it affected your mobility?Every one has been through such alot.Have you had stem cell treatment?I am told my pp is quite high and although i havent got the same amount of energy i havent had any major problems.
Hi to everyone you all sound to nice to have such an unpleasant illness take care luv Barbara x

[soloParticipant]

Hi Ted , is your bence jones still monitored by watching papaprotein levels if so is yours very high?

[teds31Participant]

I'm afraid I dont know :-S I go like most people and have blood and urine tests every 3 months or so,but wheather they are BenchJones or not I cant say, the last time anyone told me my paraprotein levels was some time ago and they were 17, that seemed low but the consultant said they dont always mean alot (seems to be a problem with our illness ) he tried to explain it with a bucket with a hole in it and someone trying to fill it, but I cant now remember how it went,maybe some one else has the story ,some thing to do with how fast you fill it and how fast you can loose it through the hole. Well if that hasn't confused you nothing will. Sorry I really dont mean to be silly, its not always a subject you can treat with respect though.:-)
Ted

[mhnevillParticipant]

Hi Ted and everyone

I wanted to see my GP before I go off on holiday next week. Last time I got fobbed off with a telephone appointment and it was my firest time at a new surgery. Anyway, they can't look in your ear over the telephone so I took the dreaded route – on the phone at 8.00 am on dot, dressed and readyin case offered early appointment, which I hate. After about only what seemed like 100 redials I go through to the long queue just after 8.12am. I said to my husband, "I'm glad it wasn't an emergency!" Did get to see Dr at 11.00am and duly got two lots of new medecine. Then exclaimed "thank God for the NHS!!!" Dread to think what my medicine bill is!

Take care one and all.

Mavis

[teds31Participant]

OH!! have a nice holiday Mavis, hope you are going to some nice weather we have just had a teriffic thunder storm ,wouldn't have liked to be on Scarbro beach in that lot.I suppose we all suffer when it comes to trying to get Docs appointments and the cost of drugs must be sky high.Anne (wife) has had a a lot of back pain for a couple of weeks ,we didn't bother with the Docs just went and paid to see a physio, she is much better after 3 visits,I realise some people could not afford it and we have insurance, but the wait for NHS is far too long. Ted.

[eveParticipant]

Hi Ted
Must admit never heard of phone appointment !!!. We can ring after 1pm for app.now have a doctor just for extra app and surgery has very early app and late app at 7am and up to 7pm twice a week.
it is getting past the reception desk is the big thing,for eg: my husband has injections which he does himself,my doctors do not like having to supply them,,so theres the receptionist telling me in front of people,that they will not supply them,told here thanks I like everyone knowing my business:-( ,after hospital rang them up,no problem,It,s the cost £15 a day,but in the grand sceme of thing peanuts,he has them for blood clots in lungs after pneumonia
Ted I think the doctor ref to bucket leaking,he means how much gets into blood stream,while contained no treatment,damage comes when cells are high in blood!!it takes calcium from the bones into blood stream,thats when kidney,s can be effected,some times that is the first outward sign,called hypercalcemia (spelling?)feeling sick and vomiting.AKF
hope that,s some help,Eve

[Author]

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