Encouragement and support please

Well I have had a rotten morning and really need to have a boost. It's not mightily serious but here I have been jogging along nicely thinking I am doing really well and discover that maybe it's not as I thought. Had a visit with my haemetologist and thinking she would be so pleased my hematacrit is staying low and therefore don't need a venesection again this month (only needed one in the last six months after regular two monthly ones for over two years), however she is concerned at how very large my spleen is and believes this could be why the figures are low and suggests very firmly that I must have a bone marrow test. Help! I am such a wimp and terrified of this and also what it all means. Have I moved on a stage. I feel well except for the drenching sweats and fatigue. I do wish I were a brave soul and take all this in my stride like so many seem to do. She also suggested that now might be the time to see if Claire Harrison will see me (depending on the bone marrow biopsy of course). I am only a short train ride from St Thomas's. It all seems so serious suddenly - can you boost me up please. I am not a youngster at close on 67 but fully intend to still do lots of living. Thanks to anyone who has the time to reply.

31 Replies

  • Ay Up Linds - Ive also had a few dodgy outcomes to appts over the years just when Ive gone thinking how 'chipper' Ive been and to be fair its tends to knock you for six and make your head swim a tad taking it in. So I can empathise. . What I can tell you is that a swollen spleen in MPNs is commonplace as you may be aware, mine has been pretty big for a few years. And I guess there is some logic to the bone marrow aspiration given the symptoms you describe but this doesnt mean you've moved on a stage - Im a tad unsure just what you mean here.

    Please try not to spend too much time fretting about the biopsy as it's a simple procedure as these things go and those doing it should take every care to make as comfortable and pain free for you. . Ive had it and to be honest Im thinking of asking for another as its been some time since my last one. Im sure you will be ok. .

    And my outlook is there's no point crossing a bridge until you get to one and actually need to. I find this helps me to take each step at a time and not jump to the foot of the bridge before I have the facts/outcomes. However like most things it doesnt work for everyone as we are all different in how we cope.

    I wish you good luck with everything and if your test result leads to an appt with Dr Harrison from what Ive heard and read you know you are getting first rate care and attention. Cheers JR

  • Hello JR. I thought I had replied to you but not being very good at computers fear I lost it, so.......here goes again. Thank you for taking the time to reply, it means more than you can imagine. I feel so different having read your support I am glad I asked for help. Thank you xx

  • Hi Linds,iv had the dreaded bone marrow tests twice .if you agree to go onto a trial drug ,we must have a complete check up once a year, but it's not as bad as we imagine ,you can have gas.n .air.and a friend to hold your hand ,it's only a short time ,think positive ,Clare Harrison ,is so lovely ,approachable ,easy to talk to and she is such a dedicated lady to our cause,feel lucky to have the best on your side.send you my love twinkly....xxx

  • Twinkly if you get another thank you it's because I messed up on the computer, however, it would be double gratitude for your love sent through the ether. I am so glad I asked for help as I have been floundering until now. Friends try to understand but it is truly only those who are living the same concerns that say the right words. xx

  • Hi Linds, well I think you are in the right place for a boost from the lovely people on this forum, and I see that you have already had 2 very encouraging messages. I am sure you will be ok having the bone marrow biopsy, I would advise you to take someone with you on the day of the test for some support, it doesn't take very long to have the biopsy but it can be uncomfortable and a bit painful, but it depends on your pain threshold, you will be given a local anaesthetic which should help. It also sounds as though your haematologist is looking after you, and if you do get a referral to Prof Claire Harrison then you will be in very good hands indeed. I am sure everything will be ok, I don't think you are a wimp at all, you are just naturally worried and we can all understand that feeling, but we are here to support you, it's just a shame we can't give you a big hug, but rest assured we are all sending hugs to you. Maz x x x x

  • Maz, as always your wise words hit the spot. I am so glad I asked for support because I feel so different now (I confess to one or two tears of relief). The hug is powerful, thank you. xxx

  • Hi Linds.

    Sending a big hug to you and hoping that the bone marrow biopsy finds no changes at all. If you are reasonably close to St Thomas' then I would encourage you to get a referral to prof Claire Harrison. She is my consultant and a really caring and supportive lady.

    Fingers crossed that all will be ok.

  • Rubyrubyruby, thank you so much for caring and taking the time to boost me. I truly don't know what I would do without this support. I don't have the appointment yet for the marrow biopsy but when the result is through I will make sure to let everyone know. Tomorrow is another day and I hope it is a good one for you x

  • Hi there, yes, go ahead with the bone marrow test. I had one and it was a bit uncomfortable to be honest, but I had someone with me. However, my partner had to have one for a completely different reason and I went with her and she didn't feel a thing. I don't know why. As others have said, Claire Harrison is great so look on it as a chance to see the top person. I don't think it means your condition has necessarily deteriorated because I think she works hard and tries to see as many people as possible. Meanwhile, try and focus on things that are within your control like doing a bit of exercise (it takes effort but overall I think it helps to combat fatigue) and eating well. All the best.

  • Hello PVPVPV, it is great to start the day with a message from you. Funnily enough I decided already that a good walk to kick all negative thoughts into nothingness would be the right way to tackle things this morning.. I am feeling much more positive and more like myself to my husband's relief. I have made a list of all the good things that came out of yesterday's visit and actually how fortunate I actually am. Best wishes to you and thank you x

  • Hi Linds. I hear you load and clear . I also had a referral to Prof Harrison when my specialist couldn't decide if I had PV or MF . Prof Harrison is so personable and as you know the best in UK. I was terrified of th BMB but the fear was worse than the procedure. As you said it is the thought of the outcome that makes things worse. I believe that the advances in the medical world are moving so fast that we will soon see a huge shift in outcomes for MPDs already their are great outcomes from many of the trials . Take a look at some of the studies on line it certainly helps me stay positive and that is more than half the battle. I am in my 40's and plan to be around in my 80's :-)

  • Hello Titatagg, you did understand me very well. Thank you and you are so right about the medical advances - it certainly helps to be positive. In fact it is vital. I wish you well into your 80's x

  • Hi Linds, I had a BMB to confirm my ET. I was very nervous about it, but found that the worst thing was when I overheard the doctor saying he needed a bigger "thingy" (technical term!) as I have quite a bit of "padding" around the back of my pelvis where they took the biopsy from!! It was soon over and I had gas and air whilst they were doing it, and a cup of tea afterwards! Hope all goes well. x

  • Hi Lizziep, I know I have sent you a reply but somehow it's got lost - again! Thank you for being there and I did laugh at the 'thingy'. I use that term a lot. It is strange because one always thinks they may be the only scared one, but, in reality - we all are. I shall look forward to the cup of tea x

  • Hi

    I must admit i did not find my bmb too bad, a little uncomfortable. Ive had much worse since, my transjugular liver biopsy was much worse.

    With your blood levels staying low, have you had an endoscopy to see if you have anything going on? I have gastric varices caused by pressure caused by my enlarged spleen, these bleed a little and keep my levels low, i have PV but never had a venesection.

    I remember reading somewhere that it is a risk with an enlarged spleen and everyone with one should be checked for things like that. Im not an expert though, im sure Prof Harrison will know better.

  • Hello Paul 42 - you have no idea how touched I am as each time I turn on my laptop there is another message of support. You are a truly great lot and I am so pleased to be part of the fellowship. It was mentioned about bleeding somewhere but only three months ago I had a total colonoscopy and all clear. I will wait and see if Prof Harrison requires more investigation. Thank you for your care though, it means such a lot x

  • I am praying for you and lifting you up may God bless you with His love, compassion, peace, and healing blessings. In Jesus name I pray. Amen

  • Thank you from the bottom of my heart x

  • God bless you. xx

  • Hi Linds, I had a bone marrow biopsy for ET a few years ago and I'm very nervous with any medical procedures, I was sedated and the process was over very quickly. Medical staff were very understanding and I got the best cup of tea ever when it was all over. Good luck and very best wishes to you. Anne

  • Hello Anne - best wishes to you too, thank you for taking time to reassure me. I am overwhelmed by the number of people who have contributed - truly am. I will never forget the support x

  • Hi Linds, like you I have never had bmb yet but I have a number of invasive injections into bones in relation to my arthritic and inflammatory tendencies. For me the fear is worse than the actual event and trying to relax as much as possible is always worthwhile. Like others have said, wait until you see if you need to cross the bridge or not and try not to worry about what could be. You will cope with whatever the future holds because you will have the support you need from us all on this forum. Support for any medical procedure is a good idea. I wish you all the best and send enormous hugs to you Its good to have one another on this forum! Best wishes Aime x

  • Good evening Aime. Wow those injections don't sound pleasant and I will do my best to relax with deep meditation if I can - I am practicing now. I hope you have recovered well from your two ops of a few months ago and I do thank you for the words of support. As I have said above, the response has been remarkable. I am beginning to feel none of this is that bad and must put it down to experience by joining the bmb club! I think I will have a t shirt printed afterwards - what do you think? Take care x

  • Hi Linds, yes recovering well thanks, scars healing slowly as that seems to be related to my PV but looking better. The T shirts sound a fun idea! Maybe we should get one each with "I've got PV, ET or MF with funny logos on them!!"

    I started a new job this week which involves more travelling so pretty wiped but not sure if its my PV or just the change of hour and job. Take care x

  • Hi Linds, I had my first bmb in Sep and the worry was worse than the procedure. Also you will be in the best of hands with Claire Harrison and she is very lovely too. The best of luck and let us know how you get on. x

  • Malachy, hello! Thank you - I must say I am looking forward to meeting Prof Harrison as she sounds quite special. I did hear her talk at a forum at St Thomas' two years ago but I was newly diagnosed and not taking everything in as still a bit shell shocked - bit like now. It does not take much to knock ones equilibrium does it. It is kind of you to write and I will certainly let all know what the outcome is after all this care. x

  • Totally agree with what most say, the worry is worse than the actual procedure. My nurses where really good, one did the procedure and the other held my hand and chatted to me, really took my mind off it, i'm a bloke aswell lol so you know he we like to exaggerate :) so it cant be too bad.

  • Oh you made me chuckle. Nurses are really good with men though - my husband always manages to make new best friends. Actually now I just want to get on with it all and prove how jolly well I am. The strange thing is that since they have stopped the venesections I am becoming more and more my old self and I just don't quite understand it. Thanks for the support and I hope you are doing well Paul x

  • Yes im doing well thanks. Ive never had a venesection for my PV. Got my own little venesection factory going on inside me with my gastric varices, thats why i wondered if thats what you had :)

    I dont know what its like but im sure a venesection isnt that nice so thats maybe why you feel more like yourself...:)

    I think understanding these things is like trying to get blood out of a stone, my consultants scratch their heads with me, because having varices is serious but actually they are keeping me in check, all i take is occasional iron (which in itself is not good for PV but works at the moment for me)

  • If and when to do see cliare Harrison you will be in very good hands she is lovy!I've had three BMB yes very uncomfortable I take a flannel to bite on it really helps its the only way to see whats going on in the bone !best wishes

  • Hello Westlieght - thanks for the support and I will remember the flannel. Very kind of you to take a moment xxx

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