This topic contains 18 replies, has 13 voices, and was last updated by 
CarolBradley1 12 years, 7 months ago.
Hi, what a relief to find this site.
My dad was diagnosed with mm yesterday after months of excruciating back pain.
We were told not to look it up on the Internet, which straight away made alarm bells ring for me, so the minute I got home I did just what I was told not to, and after feelng pretty scared I came across this forum which holds so many different hopeful stories. Obviously it's far to early for me to post about how he's responding to treatment.
In November 2011 he first started with back pain and the GP would just send him away with pain killers and muscle relaxants, but for the last couple of months he rapidly went down hill, lost so much weight, wouldn't eat, dehydrated, nose bleeds and his back was in so much pain he couldn't leave the house, he could barely walk, so he phoned the GP for a home visit which was refused, I then tried to speak with the GP to explain how bad things had got and the GP said "I know your father very well, if he wants to he will make it to the surgery for a appointment" I then tried to explain the pain killers were not working and he needs reassessing, to which the GP replied " and when you get him to me, he will be" then hung up on me!
I felt at a loss and didn't know where to turn. The next day he then started displaying signs of confusion so I rang the nhs direct who told me to phone his GP (ARGHHH), but that is what I did, yet again the GP wouldn't come and see him, but left a prescription for me to fetch for antibiotics, the receptionist then told me the hospital wouldn't accept him for back pain, I felt that they wasn't listening, it wasn't just back pain anymore.
4 days later he was still getting worse both pain wise and other symptoms, to the point of actually crawling to the toilet (wheres the dignaty in that, when he was such a proud independant man) so I actually went into the gps surgery and demanded he come out, Finally he did and straight away sent my dad to the hospital where the tests began, he is anaemic, and his spine has started to collapse, he will start his treatment next week.
I'm not sure if I'm just venting my anger at the GP because I don't know what else to do, but surely some routine tests should have been done before now?
Sorry for rambling on
Hi Neelie
Well I thought my husband was treated badly by his doctor,but I think your dad,s case beats it.the surgery will now bed over backwards and everything will be by the book from now on,you will have to take my word for that.I was lucky I found a young Canadian gp in the practice that listened to me.She is now are designated doctor,plus I asked my own gp for an explanation,not happy with answers would have just prefered an apology,but I think it made him sit up and think.
Myeloma is only 1% of Cancers and a doctor will be lucky to come across it once in his lifetime roughly 3,000 cases a year in uk,and if you are unlucky you might have a rarer form,which is Kappa light Chain.
Lots and lots of learning for you to do.and more reason why the gp should listen to the patient,.
Your dad is in the best place and you will see an improvement in no time,my advice would be for you to contact Ellen on this site who will send you lots of info and give you good advice.
You are very welcome to rant away,we have all done it,and understand just how angry you are feeling,(it,s the t shirt bit ),so consider this as a fully fledged up member,welcome to are world.Eve
Thank you for your time replying eve,
It's hard to have faith in the nhs when they won't listen (minority I admit).
I read that in the average gp's working career they may only see 1 maybe 2 patients with myeloma,
I'd never heard of it personally but I knew something wasn't right with my dad and I think the doctor should of realised this to and done some blood test or something.
I am now in two minds whether or not to complain, I know the GP could not of prevented this happening, but I just feel so let down by his manner and lack of 'care'.
He comes across as because he has the title 'DR' he is the most important one and we have to just go along with what he says.
I'm glad that you and your husband are now receiving the help you need, fingers crossed for my dad.
Hi Neeli as I read your post I found myself getting angrier by the minute There are several people who have had to wait over a year as has already been said gps are unlikely to see a case of myeloma Thankfully M.M.U.K is working very hard to make gps and other professionals aware of myeloma. I also had to wait over a year for diagnosis , many many visits to doctors and crawling to hospital for pain relief When eventually I was diagnosed I had lost 3 vertebrae and was at immediate risk of paralysis Before any cancer treatment could begin I had to have back reconstruction surgery to put plates and rods to support my spine I also had over 90% bone damagethroughout and waqs very poorly. The first thing they will loookat is pain relief for your dad which will make a world of difference After some initial tests such as a bone marrow biopsy possibly a 24 hour urine test to check his kidneys. Dont be alarmed if it seems to take a while to get results the info they get will give them a complete picture of your dads needs When athey have all the info they will have a team meeting to produce a plan for treatment He will also have a specialist nurse who is often easier to get hold of than the consultant and they will be more than happy to talk with you as well . I think I had better stop as I am rambling a bit , old age !! Please rant away on here as much as you like we all do !! Ask as many questions as you want someone will know The nurses on the info line are great too very knowledgeable Keep in touch and please pass my good wishes to your dad love Bridget x
I'm so sorry to hear about what you had to suffer before you got any answers, I feel selfish now to be complaining about a 6 month wait.
Thank you for the helpful and encouraging reply.
Best wishes for you Bridget x
Hiya Neelie.
First of all welcome to the forum. Not that it's a forum that one would choose to be a member of but we are where we are. You'll find it's a good supportive group with good advice.
I had to wait 18 months for diagnosis from first going to the doctors with back problems. Nearly a year spent going back and forth for pain killers and anti- spasmodic tablets. Then I really hurt my back at work last may foolishly I went home and then to the doctors instead of being taken to hospital from work. Anyway 5 months later finally at hospital I had a full spine x-ray the revealed damage to my spine top to bottom. All sorts of tests were ordered and 2 days later I was called and told to get to haematology ASAP where I was diagnosed with advanced mm 3 days before my wedding. It's been a roller coaster since then.
Don't be scared to ask any questions no matter how trivial you may think they are there will always someone able to answer or advice. Either a carer or patient.
I hope your MM journey turns out well
Andy xx
Hi,
Sorry to hear about your Dad. I am well aware how under the radar myeloma can be but even I am pretty shocked by the low standard of care given to your Dad, even if your GP was ignorant of myeloma, like you say he should have carried out some blood tests etc. I am sure that you wont be feeling like it right now but you could complain to his local primary care trust. You dont say how old your Dad is or which hospital is going to be treating him but I am sure he will now be in safe hands,and get the appropriate treatment underway to reduce the pain etc
Wendy
HI Neelie
What terrible time your dad has had but it does not surprise me I went to my docter because I could barely stand up and could not breath she said just a virus take two paracetamols my husband took me into A&E NEXT MORNING WITH DOUBLE PNUEMONIA AND KIDNEY FAILURE I nearly died while in hospital I had 7 units of blood and after test diagnosed with MM she could not of diagnosed MM in the surgery but she should have seen how ill I was
so many GP dismiss things as just back ache or a virus It fills me with horror that GP will now be in charge of the budgets
Best of luck for your dad
Regards Jo x
Hi NeelieAnd Dad
First of all That aint no rant trust me lol, and next a warm welcome into the site that now part belongs to you 😀 pull up a chair and have a seat as its gonna be a long ride am afraid.
Now your dad is confirmed as an MM sufferer am sure it wont be long before they stop his pain and get Dad sorted and into remission.
Take one day at a time and am sure it will all fall into place. Need to know anything ask away and if you need or feel the need to rant rant away (but make it a better rant than the firs one lol 😀 )
Give me regards to your Dad
Love and good luck
Tom "Onwards and Upwards" xxx
Hi Neelie
What an awful experience, your poor dad. I think a letter to the practice asking how this decision was made is in order. I had my blood taken a year before diagnosis because I was anaemic and was told the results were ok and stop worrying about them! Turns out 12 months later when they were repeated, the telltale signs had always been there. I have had a grovelling apology from my practice since then and as Eve says they can't do enough for me now. I didn't make a complaint just asked the questions as I didn't want to change docs or really antagonise them but I did feel I neede to make the point.
I do hope your dad gets on ok from now
Love helen
Hi Neelie,
The positive is that your Dad is now in the right place with the right people to take care of him… and they should have been doing so for a long time before this. It makes their job a little harder (having to plot exactly where your Dad is with his mm and the appropriate treatment to bring it under control) and your Dad had to put up with a lot of unnecessary suffering… all because of the ignorance (understandable) and the unwillingness to investigate (unacceptable) of your Dad's GP.
As you can read, that is not an unusual pattern with most GP's who encounter the early stages of MM. They assume hat their patient is suffering from stock problems and treat accordingly… but alarm bells should be ringing when it perseveres. But no… if it doesn't fit then they turn to the next stock problem and proceed.
My GP was also a friend (musically) and he suffers from a bad back… so I had his version of sympathy and he treated me accordingly… even when I was sleeping upright in a chair for the best part of two months. Eventually it got so bad, with back spasms that I wouldn't wish on any person in the world, that he sent me for a scan, where I was diagnosed with secondary bone cancer (tumour on my spine, crushing 2 vertebrae onto my spinal cord). But he only sent me after I had collapsed onto the floor and couldn't get up and ended up in casualty… where a wonderful young asian doctor gave me morphine and admitted me for tests… the senior nurse told my wife that they would wait until they got me in the ward, get me examined by a 'proper doctor' and then send me home with some decent painkillers… I ended up in hospital for four days… I had none of the tests suggested by the young doctor (including an MRI) and Janet, my wife, had to cut me out of my clothes after two days… they just fed me pain killers and had two physios barking at me to get up and move around… well, there's nothing new here… I was sent home two days later… where my GP sent in a chiropractor… who saved my life.8-)
The chiropractor got me to lay on the bed and he examined my spine… and refused to treat… he got me a decent pair of crutches and a Zimmer and visited my GP at his home. Two days later I had my MRI and the rest is history. I was saved by what some people refer to as a quack… and an expensive piece of technology… the medics had their chances and failed me miserably… as they did your Dad.:-(
My back story (no pun intended – but its a good one:-D ) your Dad's story and several others here, are the negatives… the positives start right now for your Dad… look at Jo (Badger) and others with horrendous tales that meant they wee in deep… in bad trouble when diagnosed… wherever, whatever, they are still here… they survived the indifference and the problems caused by that indifference… the medics found the root of the problem, found a suitable course of treatment and they were under the wing.8-)
As will be your Dad. So speak to him… get him to agree that you will never forget (how can you) but the positives (however unlikely that may seem) start here. Being positive is the key… my mantra was 'Whatever It Takes' (Tom's 'Onwards and Upwards' and David's 'Vasbyte', South African for 'Bite Hard')… which they still maintain to this day.:-)
Your Dad needs to focus on getting much, much better than he is right now… and that will happen… but he must be positive and concentrate on doing that… you have to create a positive aura at home… don't allow negativity to cross the threshold… even when it is disguised as loving concern… only allow conversations about his treatment and plans for getting him to his Stem Cell Transplant and the remission beyond… but that is to come… for now breathe.. take in what the medics are saying and look after your Dad… with love and positivity and the determination to surround him with nothing but the same.8-)
With best regards to you, yours and especially your Dad.
Dai.
WOW! 😀
Thank you to all of you for your kind words,
It's amazing how reading your replies have helped me to see things in another light.
I've always strived to make others happy, give advise, or a listening ear, and it was kind of embarrassing for me now to be the one needing somebody to help me out and give me a ray of light, but you have all managed to do that and I'm grateful.
It's currently snowing here, but I feel so warm and comforted knowing I'm not alone (even though I wouldn't wish for anybody to have to be here).
Many thanks guys 🙂
Hope you are all well (as can be), you will all be in my thoughts
Neelie x
Hi Neelie, Unfortunately your story is not a rare one with regard to MM. I had MM 2 years prior to diagnosis and it was only breaking my neck getting out of bed one morning in July 2009 that brought about the diagnosis of MM.
I have found that the Doctors most favourite saying is ?It is all in your mind? and another nice little saying they like to use is ?Worried well?. Having said that there are some really dedicated Doctors out there and we should not let the few bad apples taint our view of them all.
At the time I came out of hospital, the Surgeons having fixed my broken neck, MyelomaUK was doing a Doctor Awareness Campaign asking everybody to deliver an A4 MM Diagnosis chart to our Doctors with a covering letter. I knew there were 36 Doctors in the Taunton area so I addressed one to each Doctor and then dropped them around to their Surgery and it was placed in their pigeon hole so I know they got it. The best bit was that the next time I went to see my Doctor he said that they ?the Doctors? had discussed it.
All the very best of luck to your Dad.
Kindest regards ? Vasbyte
David
Hi Neelie,
Where is here? What's your Dad's name and where is he being treated?
Being nosey.:-D
Dai.
Hi Neelie
Its really good to rant ive only been a member on here for a little while but its been a great place to come to have a rant, or get information. There is always someone here with kinds words and support. Your Dad is now in the right place and im sure he will be getting the best care possible. My advice would to always write down the questions you have for the specialist nurse and the consultants, because you forget and theres always so much information to take on board. Stay positive and dont be afraid to ask for help. Our specalist nurse was a great point of contact for us, and so was the ward sister both going beyond what they needed to. 🙂
Everyone is always here to offer support or just for a chat.
Love
Nicola 😀
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