Hi All,
hope everyone managing with this covid pandemic and all had their jabs. Not been on for a while but have landed bk in hosp with pain in left side of stomach, which has turned out to be an enlarged spleen. They are now discussing whether I get treated here in local hospital or will Beatson take over. So sore, just wondering if anybody has had this problem.
As always take care and keep safe.
Carol xxxx
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Oh @ladicaz I really hope someone will be able to help you but it really does sound so sore and I am sorry you are back in hospital.
Please let us know if your treatment will continue at your local hospital or Beatson and how you are doing, take care.
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Thanks Erica, will do xxx
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Hi @ladicaz. It’s lovely to hear from you. However, I’m sorry to hear you are back in hospital. How are you feeling in yourself? X
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Rotten Nichola, having to have liquid morphine but hoping to find out more tomorrow. Pain is excruciating. Thanks for asking, xxxxx Carol
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That all sounds horrible! Hope the morphine takes the edge off. Keep us updated tomorrow X
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Oh @ladicaz thanks so much for updating us but I am so, so sorry that you are in excruciating pain. I do hope that you will find out more today.
Please do stress to them how bad the pain is.
If you feel up to it please let us know how you get on.
Take care xx
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Hi all, just to update you, I got home on thursday, Beatson are taking over my treatment got app on 7th July. Still getting a bit of pain but meds helping, just taking it easy, hope all keeping well as can be expected, love to all, Carol xxx
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Oh @ladicaz I am so glad that you got home on Thursday and Beatson are taking over your care.
Sorry that you are still in a ‘bit’ of pain. Yes, you take it easy, you have been through a lot emotionally, physically and practically and pain is so wearing. We await hearing about the 7 July appointment. Look after yourself.
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Take good care Carol - really glad the meds are helping and that you’re taking it easy.
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Lovely to hear from you. You make sure you take really good care of yourself and keep us updated x
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Hi all,
well seen specialist and he suspects that my essential thrombocemia has now went to myleofibrosis, I have to go on 14th july for bone marrow sampling and bone marrow biopsy, then to go back on 4th aug to get result. I am feeling so apprehensive but what will be will be. Hope everyone doing well.
Carol xxxx
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Hi @ladicaz, lots going on for you, please let us know how you are getting on at each stage and really look after yourself.
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Hi @ladicaz. Good to hear from you. Lots going on so make sure you take care and keep us updated when you feel up to it. I hope the procedures go well x
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Hi all,
Definitely myleofibrosis, also got scarring on bone marrow, have score sheet to fill in once a week so that when I go back if scores are high going to change my meds, so it may help shrink my spleen, Feeling very fatigued. Hope you are all keeping well and safe.
Love
Carol xxx
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Hi @ladicaz. It’s lovely to hear from you. I know that’s what they thought it would be. How are you feeling about it all. I hope you are resting X
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Hello @Ladicaz. Thank you for sharing. I feel for you and hopefully I can reassure you a bit. I too have myelofibrosis, having originally been diagnosed with a disease that had features of ET and myelofibrosis. In 2015 my blood counts gradually dropped and bone marrow tests confirmed that the disease no longer had any features of ET. I was started on Ruxolitinib in 2017 and it has helped to reduce my spleen size and helped with other symptoms also. Like you, one of my biggest issues is the fatigue. My consultant told me recently that fatigue is very common with myelofibrosis and that it was sensible to rest when I start to feel the exhaustion overwhelming me. It takes time to get the correct balance of rest and gentle exercise, but we each know our own bodies. It is hard to deal with especially when people tend to comment on how well you look but have no idea how exhausted you feel! Thinking of you. Warm wishes. Willow
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Hi @ladicaz thanks so much for posting when you feel so fatigued.
Your body and you have and are going through so much emotionally, physically and practically I think it is so natural to feel so fatigued and as @Willow says it takes time to get the correct balance of rest and exercise, I also believe in fresh air is good as well.
@Willow also raises my pet hate of people saying ‘oh, you do look well’ and you are feeling so rough inside.
It will take a long while to replenish your batteries, be so kind to yourself.
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Hi all,
Thanks for all your kind words about my diagnosis, also want to let you all know am in hosp being treated for a heart attack, so feeling more fatigued.
Take care and stay safe everyone,
Carol xxxx
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Oh @ladicaz. You must be exhausted both physically and emotionally. All I can do is send you extra special wishes and hope for a speedy recovery. How are you feeling in yourself? Please keep us updated - when you feel able to, on how you are doing. Lots and lots of love X
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