Been unwell for about 18 months. Exhausted. Run down. Sweaty. Chest pain. Gastro pain. Irregular bleeding. (Thought menopause had started) Blood tests in June showed low Red blood count. High white blood count. High lymphocytes/lymphocytosis. HJ bodies. Target cells. Large platelets. The list goes on. I’ve had 3 lots of antibiotics as I’m constantly unwell. Scan showed swollen lymph nodes. All tests have been repeated, and some more including flow cytometry/immuniotyping. I had a telephone appointment booked with the specialist which has been cancelled and replaced with an urgent face to face. I am assuming this is not going to be good news.
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Hi @Maycc8 I am so glad that you have found us.
I do not know what sort of news you will get.
However this time gives you the opportunity to write down all your fears, thoughts, feelings, questions, symptoms, practicalities, family history, your medical history, medications, allergies etc.
I need to write everything down because as soon as I walk into a medical building my mind goes blank and this is your opportunity to cover everything you want. If any medical language is used ask for clarification till you do understand.
We are all here for you and the Blood Cancer UK support line is also there if you would like to talk to someone.
Please let us know how it goes and look after yourself
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Thankyou. I actually thought I was just anaemic until a gp receptionist mentioned your site
I think it was meant as a helpful suggestion but very much a slip up on her part.
I have to say I am now extremely worried as last time I saw the specialist she was extremely vague.
I am dreading tomorrow for what she might say or even for another long wait with no answers.
I shall let you know. Thank you again.
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Hello @Maycc8
I’m so sorry you’re going through such an anxious wait - I know from experience it’s very frightening.
Although not great you were referred to a blood cancer site before any sort of diagnosis, this IS a great site for support and advice.
I hope you can distract yourself a bit before your consultation, and get some sleep. My only advice at this stage is not to do too much Googling, because it’s very easy to come across frightening stuff that isn’t actually relevant to you. I did that at one point, and regret it.
Hope you’ve got someone to lean on there, if you feel you need to share the burden - but we are here too.
Thinking of you.
Best wishes
Fullofbeans
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Are you taking somebody with you @Maycc8. Take a notepad and a pen and ask anything you need to. If you need to talk things through before the appointment give the helpline a ring.
Waiting and not knowing what’s coming is so hard. I’ll be thinking off you tomorrow. When you feel up to it please let us know how you get on. In my thoughts X
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I actually slept really well last night for the first time in a year. I felt a sense of calm. Now at the hospital waiting. Apparently there’s at least an hour delay. I’m going to grab a coffee on receptionists advice. I can’t bear to see upset people coming out of each room. This is not a happy waiting room today, you can feel the fear and tension. Everyone is avoiding eye contact. I haven’t prayed for a long time but today I find myself silently doing so. I’ll be back to let you know as I know. Thank you for your kind words.
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Oh @Maycc8 thanks for posting from the hospital, that waiting must be so scary and never ending, especially with that extra hours delay…
Sending you supportive vibes and please let us know how you get on. xxx
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Been thinking of you today X
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Left in limbo. Heamotologly Specialist says she doesn’t think I have lymphoma. First time it’s been mentioned. I’ve now been referred urgently to breast clinic for ultrasound and biopsy after telling me at last appointment that the lump was nothing to worry about. She checked neck and groin, lymph nodes still swollen. Bloods taken again. I asked her to print out my last 2 rounds of results which she did eventually. She did say some results are too high, others low, some borderline. I’ve lost some weight. She told me she is doing a watch and wait (??) and I’ll see her again in 12 weeks. She told me to keep taking pain killers regularly. She makes me feel like I’m wasting her time. And I’m sore and covered in bruises because it took 2 plebotimist nurses 4 attempts to get the blood. Sorry for sounding miserable. I’m just so tired and worn out. I hope you all had a better day.
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Oh gosh, @Maycc8, what an horrendous experience you’ve had today. I’m so, so sorry. You must be worried out of your mind, and frustrated beyond belief that you have no answers yet, and with more appts and waiting to come. You really have been unlucky.
I hope your other appts are very soon.
Did you feel you were able to ask what you wanted, and did you get answers to any questions you had? (apart from, ‘What’s causing these blood anomalies?’) I hope so. I hate to think your whole appt felt in vain.
I"m glad you slept well last night. I hope today doesn’t interfere with future sleep.
If you want to talk though, there’s always someone here.
Thinking of you. Wish I could give you a hug.
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Hi @Maycc8, you can be honest with us and I think you are entitled to feel miserable, tired and worn out.
You are also sore and covered in bruises having gone through so much with all the attempts to get bloods from you.
Watch and Wait or active monitoring at regular intervals is fairly common and I have been on it for quite a few years.
I feel it is good news as I want to delay treatment as long as possible. Research and trials are coming up with new kinder, targeted treatments all the time.
However it is scary being left in limbo, and not knowing.
Perhaps it is now the time to really be kind to yourself you have had an exhausting day.
Keep posting how you are, please, especially when you have your breast clinic appointment.
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Hi @Maycc8, you have wonderful support here on the forum. It must be difficult to hear that you have to have further tests when you were previously told there was nothing to worry about. It’s reassuring to know they are doing further tests and investigation to rule out everything and to try to find out why your blood results are the way they are. As Erica mentioned watch and wait is a common process, the important thing to take away is they will be monitoring for any changes. Watch and wait can sometimes be hard to get your head around, we hope the information here helps: Watch and wait | Blood Cancer UK. If we can be of any further support, our Support Services Team are always here: Blood cancer information and support by phone and email | Blood Cancer UK
Best Wishes
Bav
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Hi @Maycc8 ‘watch and wait’ is the best position to be in as things currently stand for you. I was being monitored for 3 years before I had to have treatment, others have been on W&W for several years. Whatever your diagnosis, it appears it is chronic rather than acute.
The forum has been a really helpful place for me, hopefully it will be for you too. Regards, Ade.
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Hi @Billy1mate I really agree with everything you say.
How are you doing?
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It must be really dreadful not knowing what to expect @Maycc8 . I do hope you get some clarity soon and can get on with your life one way or another. We’ve all faced similar circumstances and had to put our lives on hold. Keep checking in with us and let us know how you’re doing.
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