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End of remission?

So I’ve been in remission from Myeloma for the past two years but over the last few weeks have started to get back pains not unlike the ones I had before my diagnosis though not as severe. This week the pains have been worse and I contacted my team for advice only to be turned away and told that it was nothing to do with them. I then booked in for an appointment with my GP and tried to bring the appointment forward as the pain got worse. I faced scepticism about whether my problem was deserving enough to have my appointment brought forward but they eventually did it and I spoke to a GP on Tuesday afternoon. She expressed the opinion that it was not her responsibility but ordered some blood tests. I was told that my problem wasn’t urgent enough to have the tests done at my GP’s as they normally only do them for over 75’s. The alternative is to use the central blood test booking line to have them done at another GP practice. They are now so busy that they no longer take calls so you have to register online for a response within 2 days and an appointment likely to be almost a month away. I feel once again that I’m facing a brick wall of unhelpfulness like I did at the time of my diagnosis. Nobody wants to take responsibility and nobody wants to help. If this is the start of my condition resurfacing then a month’s delay really isn’t going to do me any favours. I find myself once again frustrated and fed up by the dysfunctional nature of the NHS and the lack of care from any medical staff that I come into contact with.

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Gosh @Franko I’m really sorry to hear of the brick walls you’re facing! How frustrating and worrying for you, please do give us a call if you want to talk this through. Have you ever tried talking to Patient Advice Liason Service (PALS) about the difficulties you’ve had with your hospital team?
Don’t be afraid to be persistent with your hospital team - as you know, it’s so important that the symptoms you’re experiencing are investigated. As you’ll know Franko, if you feel very unwell seek advice from your GP, NHS 111 or go to the nearest A&E as soon as possible. Please do give us a call if there’s anything we can do to support you, or if you just want to talk things through with us.
Hopefully others on here will have some pointers that have worked for them?..

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Hi @Franko how absolutely horrible and frustrating for you.
It was also hurt me to feel so uncared for and pushed from pillar to post when I am in such pain.
@Alice_BloodCancerUK has given you such good advice, but when you are feeling so rough perhaps the last thing you feel like doing is having to pursue your options and be persistent.
Also the more you get stressed and tense up perhaps the worse the pain will be in your back.
I also feel so yukky on pain killers and there are always side effects of one sort or another.
Take lots of special care of yourself and please do keep letting us know what’s going on for you.

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Hugs @Franko emma and Alice have both given sound advice. I think PALS is a great place to start, but really the only thing I can say is be persistent. Ring everyone again tomorrow and stress you are feeling very unwell and now it’s causing you anxiety too. Push them.
Xxxx
Hugs again

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Hi @Franko you have my empathy in that situation but you have to persist if you can as my grandmother used to say creaking gates last longest because they make the most sound and no one ignores them. I did not follow her advise some years ago when I could not get a blood test because the phlebonomist was off sick at our Drs surgery and the nurses would not take blood from the back of your hands (I have rubbish veins in my arms) so I was sent away to wait 10 weeks for a blood test by then I had convinced myself that the weight loss and night sweats swollen stomach etc were just pre menopausal so thought no more about it after I finally got a test over 3 1/2 months after the GP ordered it, went to work and came home to find 17 calls on the answerphone from the out of hours Drs asking me to go immediately to hospital which annoyed me intensely after all the delay so I refused to go until someone told me what was going on and ended up hearing my Leukaemia diagnosis alone over the phone. My spleen was very enlarged and wbc astomomically high so I ended up as an in patient having to have an extended period of various chemo before I could actually start on TKIs which one normally takes for CML. The Haematologist said the delay made a significant difference to my treatment and short term outcome and made achieving remission much more difficult. The team at the hospital are brilliant but GPs still hopeless I have been prescribed medicine incompatible with the TKI so the hospital sent the GPs a check list which they lost and one locum advised me to wait for an unrelated Op until I had finished chemo apparently unaware that most CML patients are on TKIs for life. So I would up the nuisance value if I were you, you know your body best don’t be fobbed off. I send my very best wishes.

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Oh @Ismo hearing your Leukaemia diagnosis alone on the phone must have been such a shock and so scary, that is not caring.
That is a good philosophy from your grandmother, another lesson is to listen to your grandmother !!
Take care.

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Hi @Franko , I’m so sorry that you have been faced with such indifference to the resurfacing pain. I’m sure I read in one of the myeloma hand outs that your oncologist should know from careful blood monitoring when further treatment would be needed before you even have any resurfacing symptoms. It sounds as though that’s not been done? @ChrisCKW and @Alice_BloodCancerUK are definitely giving good advice. PALS have helped me before and persistent phone calls are certainly the way forward. I would also add that turning up to A & E for the pain might bypass the brick walls you are encountering. Once they know your situation you may receive better care as they are far more knowledgeable than GP’s. Of course you have to weigh up the Covid risk there at the moment. Hope you get some positive action soon. Virtual Hugs to you xx

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Hi @Ismo you really weren’t treated very well at all and to have all those messages on your phone, what an awful shock for you. My GP’s were useless and didn’t diagnose my myeloma. I had to consult a private doctor after about 7 months of GP incompetence and severe pain. I had to leave work as my back hurt so much. I complained to PALS and received an explanation with a comedy of errors. I’m still thinking about making a claim against them, really to recoup the charges for the private consultations and tests. Hope things are under control for you now.

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Hi @franko. Everybody has given such good advice. I can feel the frustration and worry in your post - I felt it for you just reading it.
I really hope you get somewhere with this very soon. It’s definitely needs a bit more urgency and support from your team.
Please take care and let us know if you get any further with this.

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Thanks Alice. I’m afraid I haven’t got much confidence in anything to do with Lewisham Hospital as they’ve mistreated me all along since before my diagnosis. I was initially admitted to their A&E 3 years ago and they refused to investigate the problems I was having. They put me in a wheelchair in their waiting room even though I couldn’t sit and my back completely collapsed and cut off all the feeling in my legs. I was left screaming in their waiting room and when I told them what had happened, they called me a liar and told me to get up and walk. Eventually they put me on pain relief but not before a complete misdiagnosis by the duty doctor who said my problems were due to a bowel problem leading to pressure on my spine and he booked me in for bowel surgery that night. I only escaped having that done because the surgeon decided to come and see me and realised at once that it was complete rubbish. They then sent 3 physios to see me who forcibly dragged me up off the bed in what was effectively assault and tried to force to walk and told me I had to go home whether I agreed to walk or not as there was “nothing medically wrong” with me suggesting that they thought I had mental problems and was making the whole thing up. NHS 111 were equally unhelpful. I rang them and they told me they had to run through a set questionnaire rather than ask what was wrong. None of the questions were relevant to me but they left me hanging on the phone for 20 minutes answering them before saying “your answers suggest that you should consult your GP”. So as you can imagine I’m not terribly enamoured with any of the options that are open to me.

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Thank you Erica as always :slight_smile:

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Thanks @ChrisCKW and @Ismo . @Ismo you sound like you’ve been through the wars too. That’s absolutely awful. I used to think that cancer patients got treated better as whenever you see them on TV they are being comforted by a nice, friendly caring nurse and a sensitive doctor. It came as a big shock to realise that that wasn’t the reality.

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Thanks @Lyn99 that’s absolutely true. I have bloods done every 3 or 4 months for my consultant and usually I get a phonecall saying “your bloods are fine, let’s speak in four months” lasting about a minute, but given his complete indifference to me I’m not confident that he would pick up if things changed. Thanks @Nichola75 I’m still waitin for my callback to fix up the blood test appointment. It’s worse than useless.

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Oh @Franko, that’s just such an absolute horror of events. I’m so sorry that this happened to you. I guess its faintly comforting that you have had regular checks but I can see why you doubt the results. I wonder if you can get hold of the last blood test results yourself to check the status of your bloods at that point. I don’t know how the chains really work but the amount of para proteins might give a clue as to what’s going on, PALS might be able to assist on that one or your Gp surgery I think should have the results. Do you have any maintenance therapy as that should slow any progression down. I’m hoping that it’s just a bad back for some other reason but I can understand the anxiety you must be feeling and the desperation to get some help. I hope work are being good to you. I wish you lived nearer me in Swindon as the GWH have been very attentive. Could you go to a different hospital? just a thought…xx

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Thanks Erica in retrospect it was pretty traumatic but a the time I was just furious that I had had to wait so long for a blood test and now they expected me to go instantly with my suitcase to the main hospital 25 miles away. They just kept saying your wbc is high it could be an infection and I said well why not give me an antibiotic then I,ve got classes to teach tomorrow so in the end one of the haematologists came to the phone asked me to sit down and told me what they had found and we agreed I should go in the next day after I had spoken to the college to arrange cover. He told me afterwards that he hated having to tell me over the phone but could think of no other way to get me to come in as no one could understand why I wasn’t feeling absolutely dreadful. I think I couldn’t believe it could be anything really bad or the GPs would not have let me wait so long for a blood test- wrong!

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Thanks @Lyn99 you certainly had a rough time. yes things are better and I had the support of a great Macmillan nurse throughout the worst and a Haematologist who wasn’t afriad to get tough with me when I was being difficult about side effects but the GPs well when I was discharged from hospital and saw my GP she chatted on about Leukaemia being on a watch and wait regime and people often reaching an old age before the Leukaemai needed treatment which puzzled me a lot as I was still taking a fairly high dose of Hydroxicarbomide (?) and knew I was to go onto Imatinib soon. All was explained when she handed me a leaflet which as I got home I realised said “You have just been diagnosed with Chronic Lymphatic Leukaemia” I rang the hosital to make sure this was wrong and they surprised me by contacting the surgery so I ended up with an an apology from the Practice manager saying the GP had mixed patients notes. I decline to believe she had a CML patient following a CLL patient I think did not bother to read the letter from hospital much more likely.

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I am so sorry you have had such a rotten time @Franko your time in Lewisham hospital sounds traumatic. The trouble is barely adequate medical staff are just like barely adequate teachers - they resort to labelling people and if you get a label as difficult then they only hear what you say through that filter of “a difficult person”. Tricky, one way is to change tactics I was being difficult about some side effects and questioing the consultant which she clealry found very challenging when she was called away and my sister who was visiting me said “Burst into tears” and I said why I am cross no one is listening not sad she said the Dr thinks you are challenging her judgement, burst into tears and she’ll see how worried you really are. It worked . Re the blood tests you should ask for a copy of your results and ask someone to explain then to you then get a copy every time you have a blood test they are your results you are entitled to see them. Our Haematologist always offers them now, some patients don’t want them but I’ve turned mine into a spread sheet as my response to TKIs is unstable and if you have a blip it is comforting to look back and see oh that happened before when they reduced the dose etc Just a few thoughts, but probably @Nichola75 has the right response in sending you positive vibes I wish you very best of good luck and determination you will get through this and you will be heard but I hope your fears are unfounded when checked out.

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Hi Frankie, I have had to have some blood tests recently booked through an online booking service but when I expressed concern that the 3-4 week booking times might not allow me to get my tests done in time to satisfy my consultant the lady taking my blood gave me the contact for a helpline connected to the blood test booking system and said “ Call him if you have any issues getting a test done sooner. He is great and he will get you an earlier time.” I suggest to get back to them and ask who you can phone who does the helpline in your area.

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I am angered by your experience as I have a similar one and am not at all impressed by the response of the NHS or my GP practice. I have CLL and have been in remission for past 18 months since when I have serious fatigue and tiredness like ME or long Covid is described (haven’t knowingly had Covid).
Talked to my haematology team and they say bloods are ok so nothing to see here, can’t help you. Go to my GP who says bloods are ok so nothing to see here, but it’s my age, I’m 86 year old male. Ask if the bloods would indicate my condition he says no. I am at a loss to know what to do now and know that the Covid pandemic has seriously affected NHS to deal with non-Covid conditions.
Have a feeling that at my age I’m expendable.

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@Catcher My email notifications sent me here and I was just browsing and I empathise with what you say. I’m 77 so don’t expect to be feeling like a 20 yr old but I’ve been feeling weak and generally ill for the past week or so but without anything really specific. I can’t see the doctor and just say I don’t feel well all over! It’s hard enough getting any treatment when you can at least give them a clue. With a history of Breast Cancer 3 years ago and CML for the last 18 months and the side effects from Imatinib it really could be anything.

I feel like it’s a case of wait til I collapse completely and then if my deaf, disabled husband finds me on the floor I may get something sorted.

I have nil faith in the NHS nowadays due to the way my husband was treated recently. Briefly, he was sent home from hospital with a “temporary” catheter as he couldn’t pass water when they took the catheter out just before his discharge. It took me 3 months of chasing up and being pushed from pillar to post before he got a Trial Without Catheter appointment during which time he had 2 trips to A&E for severe bladder pain (who just gave him paracetamol after leaving him on a trolley for 4 hours without food or drink - he’s diabetic - and sent him home). Finally the TWoC appointment came, I took him to the hospital and left him there having found out that it could be a long appointment and by the time I got home he had rung to say come and pick him up! They had just taken out the catheter, did no tests at all, and sent him home with a measuring jug to record how much urine he passed!! Any District Nurse could have done this at any time. Luckily he was fine which is even more frustrating that he’d suffered for 3 months for nothing. Grr! I can feel the anger rising in me again and it’s not helping my current situation.

Sorry for the ramble/rant but sometimes it just bursts out. xx

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