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arghhhhhhhhhhhhhhhhhhhh just had phone call at 8.30 am from hospital hello mrs Clarke we are just looking through your letter from your GP about your appointment this afternoon and realise you should be seeing a different consultant we can book that for you around the 9th March is that okay………big pause intake of breath at my end and then I think I politely told her no it is not okay why have you only just found this out on morning of my appointment? And NO I will not come later in March my stress levels will not stand another two weeks after all the crap appointments with NHS you have thrown at me I would like to come this afternoon have my blood test speak to whoever you have got and come home. arghhhhhhhhhhhhhhhhh.
thankyou for letting me rant roll on 3pm
hugs Helen x
Oh bless you – why do they do this!!! You have every right to rant……
They tried to postpone my appointment like this ( for first results from bmb etc. Answers to the big “have I got cancer question). Actually they left a message on my answerphone on Monday afternoon saying “Do not come to clinic this Wednesday – we have rebooked you for next Wednesday…” I went ballisitic – husband had taken day off,( & couldn’t come the next week) appt booked 7 weeks ago etc etc etc. In the end I rang the consultant’s secretary & said- like you – I was coming as booked & would jolly well sit there till someone spoke to me. She put the phone down on me!! Then she rang me back ( all sweetness & light) & said (grudgingly) the consultant in charge had said ” well you’d better come along then.”
By then my Gp had offered to fax a letter to support me being seen as booked as he was equally horrified at their behaviour. Trouble is, as patients, we’re loathe to complain officially because we feel vulnerable… & then they get away with it!
I’ve been keeping everything crossed for you – do hope all went OK
C x
Three hours to be seen got there at 1.45 finally in at 4.40 pleasant man who got the full force of a red-haired angry lady when he said the blood test we have just done doesn’t include your paraprotein the only thing I wanted to know I am fuming how can they treat people like this…I need a Costa and a huge chocolate muffin xx
So so sorry to hear this.
Have you got an appt for the paraprotein to be done – you can always ask your Gp for this.
Have another chocolate muffin for me…
Love & hugs,
C x
Oh no-what an absolute pain!!! I hope you can soon get the test done.
R x
I have now calmed down costa and muffin and I feel as normal as I can.
The day was unbelievable but I did get blood forms that I can take to my GP to have my bloods done there three weeks before my appointment so they will have information in two months when I go again…this Dr likes to see you every two months …I cannot do this every two months it was awful how can a surgery run so far behind it beggars belief…he did tell me from the blood test they took five minutes before I went in that my HB was 14.3 and platelets were spot on “so it would be a buggar if the paraprotein had changed too much from 30th September ” his words…I said all I wanted to know was that and you cant even give me that peace of mind and help me get out of my negative mindset ..he said I would just have to wait for these results to come..they make it sound like it is the easiest thing to push it to the back of your mind..he tried to tell me he has patients asympotmatic for over seven years but can’t tell me I could be one of those because we are all so different but someday you do find peace in your mind about it…I wish that day would hurry up.
I have hated every minute of these last few weeks and this day has given me no answers so still in the same miserable place you will know what I mean ,
thanks for all your kind words hugs Helen xx
This is so awful for you – not to get the answer you wanted ( current pp) after waiting & worrying.
I hope you can do something nice -for yourself- tomorrow ( Thursday) because you deserve it.
I know it’s not much consolation but it is good news that your Hb & platelets are good – long may that last….
Love & hugs,
C xx
Hi Helen….have just seen your posts re your appointment and blood tests . I really doThe mental and emotional anguish you go through. You cannot just put it to the back of your mind. I have had my latest blood tests done on Monday ready for my appt with the Haematologist next Weds 4th March and I am having a real struggle mentally this time. I don’t know if it will always be this way with us feeling like this but its like having the sword of Damocles hovering over us. It really is not much consolation at times for people to say “it may never happen”. I hope you get good results Helen but I know exactly how you feel. It really does help to let it all out on this forum as we really are all in the same boat.
Sending you love & hugs
Yvonne xxx
Hi Yvonne, its mad isn’t it you try to keep yourself sane but then it hits you and then not to be told was like are you for real. He tells me he wants me to do this every 8 weeks Prof Cook said 3/4 mths so Im confused on that front as well cos 8 weeks is not blocks I want to live by 3/4 mths gives me time to try and forget 8 weeks is nothing so that made me really disappointed as well, But my GP bless, newly qualifed, new to our surgery was given me by my retiring GP so that he would learn about myeloma and be able to pass it on to the rest of the surgery, bless, the poor thing is having a right load of arghhhhhhhh dropped on him but he takes it in his stride and is very knowledgeable about it all ..it must be his bedtime reading hehehe ..Hope all is well for you next week big hugs Helen x
Hi Helen,
It is really difficult Helen. I have been going to hospital every 10 weeks but you’re right….. we’re living our lives in these blocks of time. Its no joke. It is really hard to be “normal”. We are on this rollercoaster though and we can’t get off it so we’ll just have to hang on in there……
Take care xx
I have my bloods taken every 4 months and only see a Consultant once a year and, as long as there appears to be no significant rise in my results, that’s fine by me. They normally only see you more frequently if your results appear to require it and, from other posts, I think our results are quite similar, though other factors will be taken into account.
I see the Consultant next in March and I’ll have my bloods taken at the surgery. In March I’ll be given an appointment card with my appointments set out and two blood test forms for each appointment that I get done about 10 days before each appointment.
My results are edging up but I would probably only expect them to crank up the appointment cycle if I have a couple of significantly adverse test results.
<i>hi graham, that’s what I was hoping for every 4 mths, unless when this paraprotein one comes back and it has changed significantly my CBC blood tests are the same as last August and September so it wasn’t what I wanted to hear just wanted abit of peace of mind for me and then I could be more sane for the family. It’s been a rotten couple of days and I hate feeling like this because there are a lot of other people out there with more worries than I should have so today I’m off to chop more of the hedge down should keep me quiet for a while .hugs Helen </i>
MGUS is probably a lot more widespread than is recognised simply because there isn’t any general screening for it. Of course if you have MGUS it’s far better to have it monitored than only realise you have it when there is a medical crisis, as it’s very difficult to treat you after myeloma has done damage to your bones or organs, and there are many people who have only been diagnosed after this has taken place.
I’m not trying to ‘sell’ it to you as a good thing, but with MGUS you aren’t at risk of plunging into the abyss without good warning and there’ll be every opportunity to deal with any health issues that crop up, if and when they ever do.
Of course, having appointments cancelled on the same day is bad practice and you are right to be annoyed, but that may be down to the fact that you have just joined the ‘process’ and haven’t been absorbed into the system properly. Once you get going it’s like being put on a set of railway tracks and trundling along, hopefully for many years without any problem. If I get my results, which has been a problem, then I don’t feel that I need to see a Consultant as long as the results remain steady.
Even if my PP’s went up by as much as 10 I wouldn’t be concerned as long they asked for another test in a month or two. The point being that they’re looking for an underlying and ongoing change in our results. When it reaches a certain level then they’ll start treatment, but if it looks as if there is something changing, and not just moving up and down, then I presume they’ll try to ‘nip it in the bud’.
4 monthly blood tests is ‘bog standard’ and checking more frequently has no benefit and may suggest that they have reason to think it’s necessary for some reason, and it might be worth asking why if that’s what they intend. Whoever told you that tests would be more frequent probably thought they were reassuring you.
Hi everyone, got my paraprotein result just under two weeks waiting stayed at 8 after the useless hospital appointment so GP says to sit back and chill he knows that’s easier said than done but at least I have confidence in him hugs Helen x
Hi Helen,
Glad you got your results at last !! Its not good you had to wait that long as the mental stress is hell. Its reassuring for you though its still not easy. I had my appt with Haematologist last Weds. My paraprotein had crept up again slightly and because I told her of bone pain in my arms, legs & ribs she sent me to have more xrays straight away. Now awaiting results. Other than that see her again in 10 weeks. That will be 1 year of living on a knife edge. I’m sure you feel the same Helen but we can’t get rid of this problem with our blood so on we go.
Take care
Hugs
Yvonne xx
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