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Share your story: your experience of being diagnosed

I had a SCT eleven years ago, and with surgery that I also needed before I started chemo, and then RT, it took a long time to recover, and I picked up a lot of infections for a while. Take care

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How scary getting a diagnosis of something when there was so little information available. When I was diagnosed with Hodgkin’s lymphoma 13 years ago I stayed away from the internet as I did not know which sites to trust. Now we are more educated about the internet it is so much easier. I am pleased that you have a fantastic team to support you

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@Maple I echo the sentiments of @Erica in no way are you are fraudulent, but of course, you can’t help how you feel. And it’s so encouraging that you feel comfortable enough to talk about it on here. As Erica says, what we can see on the inside is just as significant as what we can see on the outside. I can only imagine how hard it can be when people don’t always recognise this, but hope this has given you a safe place.

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@Pisces56 ah very true! this is why we place so much important on the literature we provide to you all, and are always keen to hear your feedback. As you say, where there is less information, there is likely to be more uncertainty, it’s only this will cause someone much worry

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@Willow I can only imagine how tough it must have been not having a CNS you could put questions to. I hope the support from your GP was helpful at least. It’s sounds like such a significant moment in your life, understandably so! it’s only natural it is something which will stick in your mind. I’m so pleased that you have support within our online community

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Thank you Su for your kind words and understanding. I am very grateful for the support of Blood Cancer UK and this patients forum. It helps to know that we all have unique understanding of what it is like to live with a blood cancer. As I often say, it is a “hidden” condition which can often make it hard for people to accept. I have lost count of the number of times people have said … “But you don’t look unwell?” Not at all helpful when I am exhausted and in pain a lot of the time! Take care everyone and don’t give up!

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Thank you also to Erica and Pisces56 for your kind comments and understanding. It is good that we can share on this patients forum and support one another. Take care everyone!

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Hi Willow, @SuBloodcancerUKand @Pisces56 I get enraged by the comment ‘oh, you do look well’ when I am feeling absolutely rubbish ( a polite word for how I am feeling). I am also guilty of putting the ‘I am fine’ mask on.

During lockdown I am getting more calls from my parents (86 &90) and now give minimum information, but my dad’s favourite “You sound good” is back in his repertoire. Perhaps I should pepper my conversation with a few cries of pain :joy::joy::joy:

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I also regularly get people commenting on how well I look when it’s quite often taken every ounce of energy I have to get out in the morning. I must admit I’m finding an upside of the lockdown is I can work at my own pace quite often and don’t have to expend energy travelling into work.

Take care and stay safe everyone.

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@Maple your words rang true to me as I felt quite fraudulent when I went into hospital for my second stay. I was on a liver ward with a group of very ill patients and I just had a DVT in my leg - granted my leg was double in size, but it still felt a bit wrong to be taking up a bed. I found out I had Budd Chiari and ET blood disorder after a work trip to US where my stomach ballooned. I looked bigger than when I gave birth to my kids, so it was clear something was wrong! It took 8 weeks for them to work out I had a liver clot and that it was linked to an MPN. In that 8 week period I couldn’t walk, so was crawling around in agony, couldn’t leave the house and was struggling to breathe as was full of fluid. Was rushed to A&E as well as my potassium levels were so high they thought I might have a heart attack! I now have a stent and on lots of different drugs for my blood. Work were great at the start but then just wanted me back full time, so I’m now out of work at the worst possible time to be unemployed. But everything happens for a reason so I see it as a positive for me to move on and do something better with my life. I work in PR so am very good at doing ‘jazz hands’ and people telling me how good I look and that they wouldn’t know I had been unwell (again that makes me feel like a fraud, feel like you need a viewable symptom for people to appreciate your illness) These forums are what make things better as I realise it’s not just me that feels this way and to hear how other people are dealing with it.

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@Lou We really appreciate you taking the time to write this. As you say Lou, I can only imagine how difficult it must be to have already gone through so much but feel like you didn’t get the all the support you hoped for from your workplace. And in addition, dealing with the reactions you described from other people. I’m so glad to hear how much you get out of this forum, and am sure as well, sharing your experiences will help our other lovely forum members too

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@Lou, you have really had some scary and agonising times, I think those times can feel so lonely and isolating sometimes, my husband cannot take it and often says something to make it better (more for him !!) or ignores what is going on and sticks his head in the sand, it is not his fault, that is just how he is made. Yes, perhaps sometimes we understand as family, friends and work colleagues are unable to. Keep letting us know how you are doing.

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@Erica That’s so kind. The only upside is my kids both managed to ace their exams. My son got 3 A stars at A level and my daughter did well in GCSEs. He’s doing medicine and it made me laugh as in his first exam the question he got wrong was on INR and Warfarin - I mean come on!! He was kicking himself!!!

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@Lou, you must be so proud of your children.

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@Lou well done to your children! they sound like superstars :smiley: !!

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It is so comforting when our children do well despite having to deal with so much at home. My youngest is living by himself, and working at home during lockdown, so I was most worried about him coping. He was a teenager when I was undergoing treatment and nothing was hidden from him, but it seems to have given him the resilience needed to cope. Congratulations on the exam results, and I am sure your son will do well, and will be very knowledgeable about warfarin and INR now

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@Pisces56 Such lovely words to Lou, I hope you and your children are doing okay @Pisces56?

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Thanks Su. They are all adjusting and being kept busy with work and children. One son commented this morning that although there has been less traffic on the motorways, the accidents have been worse, meaning even on days off he has had to deal with phone calls about problems. We had a lovely video call with his young family this morning. One daughter has started talking, and the other walking since we last saw them. Hope the team are all finding ways to relax during a very busy time xx

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hi @Pisces56 hope you’ve been doing alright since this last post? And so sorry to hear about your son’s work, hope he is managing okay? So lovely that you had that video call :slight_smile:

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