We have all had our diagnosis made in different time scales and none is ideal. I had the shock version where I went in for suspected appendicitis and came out the next day with a leukaemia diagnosis. That was a terrific shock but I did not have the horrendous wait for another appointment. What I have found is that progress in research and practical ways of dealing with us all are improving every year. I had a series of hip marrow samples taken initially but since then the improved kinds of blood tests have meant I have not had another. I did not find it upsetting but I know a few folk hated it.
My hint to keep on top of it is to buy a plastic A4 folder with plastic insert pages. You can keep all together, stuff it in a big handbag when you go for appointments, put a couple of blank pages in and a pencil for when you want to make any notes or keep your question there. Have a front sheet and jot down dates and phrases the doctors say that you want to remember. The one thing that is guaranteed is that your brain will be racing so much that you will be planning for things that have not happened and may never happen, doubly so as a young Mum. This will help tie you down to what is real and help you keep track. My heart goes out to you. Hang on in there. It will all become clearer.
Gosh so many replies, people are so supportive. I may be repeating what has already been said.
You can call up your test results in your GP online system. I have found it helpful to always been in the know.
I had high platelets so could immediately suss out what could be wrong.
I have ET and five years down the line I am “fine” and forget about what is going on inside most of the time. I have a very active life, went this week to Tate B, planning a trip to Canada to see my little grandchildren now. Am off to a school reunion today.
Take a chemo type drug. Only poss side effect is that I am a bit weary at times, but that might just be getting older as I am 74 and doing activities every day.
So there is a lot of life out there after diagnosis.
Xx
Wow @patmroberts How great to hear what a lot of fun you have.
Planning a trip to Canada to see your little grandchildren sounds absolutely wonderful.
It sounds as if you have also learnt to manage your fatigue as well.
Please keep posting your adventures !!
In the words of Rod Stewart Live the life you love and love the life you live.
Hi
I took a routine blood test and then was phoned and told to go to hospital immediately, a bit of a shock. I was then told that the diagnosis was non Hodgkins lymphoma and I would be in hospital to get the protein cleaned out of my blood and then chemo. It was a fast learning curve.
My advice to you is to ask questions all the time but more than that, keep positive and realise that these things can be put into remission or cured in some cases.
The chemo has not been the best but friends and family are supporting me and I get up in the morning with the determination to make it a good day and that means keeping busy until I get tired and then I rest for a bit. So far, I am 5 chemos in, it is working. Yes I get bad days but the good days outnumber the bad when my head is in the right place and I really do believe that makes all the difference. You have to be in control of how you feel and master it. You will get days when your resolve loosens and the way I deal with that is to tell myself ‘to get a grip’ and be positive to people who ask then you have to keep it up. Not easy but from my experience it makes all the difference.
Good luck and as my Consultant said, ‘Keep the faith’.
A great big welcome @ivanj and I really like your attitude, but I realise it is not so easy for some people especially in Covid times and perhaps without support.
What a shock your diagnosis must have been, as you say a fast learning curve.
I am glad that you have had the support of family and friends I find it really does help.
As long as the good days outweigh the bad days is the progress we are looking for.
We are here to support you on our forum and look after yourself and keep posting.
Welcome to the forum! That was a very fast moving journey and must have been a complete shock, great to see you got through it and great to have you here 
Hey Erica I’m literally calling everyday but no luck with moving the appointment forward 
so I’m taking it as it’s meant to be the 13th and hopefully it will be a lucky 13th 
hope your doing ok x
Thankyou so much for your great tips! I’m so sorry you’ve had a bit of a shock in the beginning. How are you doing?
Yes my heads all over the place I’m just trying to get through day by day at the minute because the longer I look at my blood results the more I have no idea what they mean and Google can only take me so far! But I am very grateful for your advice and taking the time to write a reply to my post x
Hiya wow Thankyou for replying! Yes that’s what I’ve seen on my results high platelets, high wbc, high crp, high neutrophils, high lymphocytes, high eosinophils, low mcv and low mch and I’ve googled way too much! I know no one here is a doctor and can’t tell me what they all mean but I appreciate you sharing your story with me. It’s so lovely to hear your living your best life and doing things you love! Thankyou so much x
Thankyou for replying to my post! Wow you’ve been on quite some journey! I love that keep the faith from your consultant! Honestly I appreciate your help about how you deal with everything! I think because I’m literally in the unknown I’m not dealing with that too great I have mental health illnesses aswell and other physical conditions and I’m just kind of losing my mind a bit. But this forum has been amazing and I Thankyou so so much x
Hi @Mumlife You say that you are losing your mind a bit, I think everything you say is so natural, most of us have had those feelings and thoughts, you are doing brilliantly.
Yes, you know Dr Google might not be the best idea and you also say you have other physical conditions that perhaps means it is even more complex deciphering your blood test results.
The 13th is getting nearer and nearer, have you written down everything you might want to ask, although it is difficult to know what to ask till you know more.
Hang in there, we are all here for you and so is the Blood Cancer UK support line, their details are above.
Look after yourself and please keep posting
Hi
I think worry is part of the condition for us all, a good deal of worry is caused by the Stone Age methods of communication used by the nhs. I had to wait three months from the blood test til I saw a consultant and had the diagnosis confirmed. I had been guessing the diagnosis from the information on the blood test form. I can worry for England, but I find going out for a walk, doing something in the garden, laughing with friends, reading trashy novels good distraction therapy. I don’t really know how I cope, but somehow I do, but I do get bad days like everyone else. Funnily enough having a claustrophobic MRI scan worries me far more than my blood cancer. I had to have one last Saturday. I have to take diazepam to get through MRIs, how weak is that? Take it one day at a time, try not to worry about things you can’t change, make your life as stress less as you can, we are all thinking of you.
Marylin
Mumlife,
I saw my son and his young family this week for his birthday and thought of you.
I do not know the age of your children and whether they are at school or not but the pace of life with little ones is relentless. I hope you are hanging in there and beginning to think more clearly.
Big love
Grandma Jo
Only 74? You’re a spring chicken compared to this one in the same situation!
Hey everyone… You’ve all been so amazing to me and so helpful and caring! I hope your all doing ok x
I had my appointment today with the haematologist and I don’t know I think I expected to in and have answers straight away which of course wasn’t the case. He told me a range of different things but I did find out I’m quite anemic so on iron tablets now. However he wanted me to have more bloods done but these ones would be more detailed than the previous ones including looking for things like ET, leukaemia, bone marrow disorders, autoimmune disorders and something about a Janus Kinase 2 which I’ve started to read about. He said its unusual for my bloods to be like this for someone my age so he wants to make sure he runs tests for everything which I am very grateful for.
I feel even more in limbo now and I went and had my bloods done and for the first time in my whole life I passed out and was quite sick. I feel ok now I don’t know if it was because of how many vials there were or if it was because of the anxiety that had built up but they were great with me and made sure I was ok before going home.
Thanks again for all your replies everyone I’ll still be waiting I guess.
Hi @Mumlife
Oh I’m so sorry you haven’t got complete answers yet, although it’s good news your consultant is being very thorough. You must be going through the wringer though, and yes, it wouldn’t surprise me if your reaction to the bloods was partly the anxiety you’ve been enduring. You have had an horrendous time. I think most people would be finding themselves having ‘moments’ from the stress at this point. You’ve done amazingly well to hold it together for so long.
Have you got many people you can talk to face to face? Or perhaps talking doesn’t help quite yet? I didn’t discuss my situation with anybody but my husband until a couple of weeks into things - the thought of doing so felt like confirming to myself the situation was real. And what do you say when you’re not quite sure yourself of the full situation? And sometimes you just need time to process what you do know.
I hope they’ve given you an appointment in the very near future to follow up on these next bloods, and that you told them your anxiety is rising with the lengthy waits.
And I hope you’re managing to look after yourself during this stressful time, with enough good food and fresh air and family time, and anything else that keeps you steady and well.
Thinking of you, and hoping for quick answers now.
All the best Xx
I really feel for you. I think the waiting is just awful and I wish I could fast forward for you. You need to make sure you really take care of yourself. We are all hear for you x
Oh @Mumlife it sounds like more questions than answers but I am impressed how diligent your consultant is being.
I think you are doing so, so well, but perhaps stress and anxiety takes it’s toll more than we think.
I am not surprised that you passed out and were quite sick, I find stress and anxiety always comes out somewhere.
A long time being in a hospital is also so stressful and feeling in limbo is horrible and the waiting for answers is never ending.
You say that you have young children, but have you got family or friends that you can talk to?
You also mention your natural anxiety and I expect you are putting on your Mum Mask with your children.
You have the support of your forum family so please use us.
Be kind to yourself and really look after yourself as I am afraid it is the waiting game again. xx