Hi my name is Dean, I’m 47 years old and 2 months ago I had no idea I might have blood cancer!
Everything is happening so quickly but also not quick enough. I’m finding to much information but at the same time don’t have as much as I want to answer all my questions,
I don’t know why I’m writing all this on here but maybe hoping somebody has been through something similar and it really is going to be just fine like I keep telling everyone else but just can’t quite believe it myself???
So this all started at 8:50am 2 months ago when I had a blood test at my GP’s for a sore I had on my tongue a year ago and I thought it was coming back, it actually turns out my tongue is fine but at 16:00 that afternoon my Doctors receptionist phoned and told me I had to go to hospital immediately. I spent the next 7 days in hospital, having 2 fluid Iv drips, 2 blood thinner injections to my stomach, a chest X-ray, an ultra sound and 3. Venesections before they would let me leave and since then I’ve had another 7 venesections, a positive result for the Jak-2 mutation test and I’m going for a bone marrow biopsy next week. It’s been a pretty scary time and apart from the amazing nursing staff in planned care at the hospital who have been bleeding me and giving me as much information as they can find out, I’ve had no one go through anything with me. I assume it’s because they don’t know for certain yet what it is as the specialist who saw me for about 15 minutes to basically book me a biopsy say my jak2 results hadn’t come back yet and he would see me in 3 months did send me a copy of the letter he sent to the head of the haematology department! It said that if I feel ok I can go back to work but he does suspect that I have Polycythemia Rubra Vera or another type of blood cancer and we are waiting for the test results to confirm. So everything until now has been a whirlwind with family, friends being shocked and upset when they hear but with me saying don’t worry it’s all good I don’t feel ill and now we know what it is we can sort it out or at least control it.
It is easy to be positive for everyone else but as everything slows back down to a normal speed I’ve now got a week to wait until the biopsy and then a month until I see my specialist again,
I suppose the reason I’m typing this post is to
Just try and deal with this crazy situation and not have anyone try to help me make sense Of it as it just doesn’t but I will stay positive as from what I see on this forum if it is the diagnosis they think I really don’t have to much to be upset about
Welcome to the forum!
I am so sorry though to hear about your diagnosis. I have a different blood cancer so have no real insight into what you are going through other than remembering how scary those first few weeks and months were . It’s difficult to process all of your thoughts and feelings especially when trying to be positive for others .
I would encourage you to take time to process and be very kind and patient with yourself as it’s a lot to deal with and it sounds like you are having lots of treatments and investigations that can be incredibly stressful and wearing on you
Am sure there will be someone on here to offer you more insight and helpful suggestions due to them having a similar or same diagnosis
Take care of yourself and let us know how you get on
Hi @Dean211077 welcome to our forum. I am so glad that you have found us and posted. @DottieB has given you a brilliant response and what really came over to me reading both posts, + my own experiences is that it does not matter what blood cancer we have I expect most of us relate to the wonderful way you wrote your post.
I was 53 yrs old when I way given my diagnosis by a gynaecologist out of the blue.
In those days, 21 yrs ago, the words blood cancer were not used only leukaemia.
I felt in a bubble with the world going on around me as normal.
I could not explain to people what I did not understand myself.
There was very limited information out there and all I saw was a 5-10 yr life expectancy.
Yep, I remember all the tests and forever awaiting answers, appointments and information I could understand.
I still have not learnt medical lingo.
The nurses were so caring, but I was just so scared.
I have a default smiley mask.
My mind was jumping to the ‘what if’s’, I will never see my son married etc, etc,
I wrote my will and funeral music.
I now realise if I have tests that the person ordering them needs all the results back to give them an overall picture and some tests, even blood tests, take a lot longer than others.
I think as @DottieB says time we need to give ourselves time to process things, make sense of crazy situations.
Everything you say in your post makes complete sense to me, you have had the most enormous shock, this was not in your scheme of things.
The Blood Cancer UK website has a lot of information on it.
I will not copy you any links till you have a definitive diagnosis.
The Blood Cancer UK support line is there for you on 0808 2080 888.
If you have fears, questions and practicalities perhaps write them down to ask at your next appointment and if appropriate take someone with you .
Be ever so kind to yourself and really look after yourself and please do let us know how you get on.
Thank you @Erica & @DottieB for being here and your words of support & encouragement.
I know right now I need to step back let the dust settle and see where we are when the diagnosis is certain but honestly this is harder than going in every other day for venesections because at least then we were doing something proactive and in that situation I find it easy to be positive because I’m fighting back but now all I can do is take an aspirin a day and create excel spreadsheets and graphs of the results I’ve managed to get from the nurses and study the trends hoping I will suddenly wake up one morning and have found a cure .
I’m sure in fact I know I’m not the first to feel this way and I won’t be the last but it’s good to just let it out and hopefully having this data saved so early on should help as I progress???
Thanks again to the forum for giving me the outlet I needed and hope everyone else is finding it helpful
@Dean211077 your experience reminds me of my diagnosis in 1999 at age 38 although I did not have the hospital stay or so many venesections. I guess you had a high red blood cell count?
It seems that a bone marrow biopsy is what defineftly confirms a diagnosis.
With ongoing treatment for Polycythaemia vera (PV) I was able to live a normal life for 24 years.
Please keep in touch and let us know how you get on.
Hello there @Dean211077, welcome to the forum that none of us would ever want to join! But here we are and I’m so glad you found us.
I wanted to respond as so much of what you’ve shared is familiar to me, uncannily so. You’ve come to the right place as there are many of us around the forum who live with Myeloproliferative neoplasms (MPN) like the Polycythaemia vera (PV) it sounds like your haematologist suspects.
In 2023 I was diagnosed with Polycythaemia vera (PV) and like you I also had no idea as I had no symptoms. Sounds like you were thrown right into a whole gamut of testing and being kept in hospital for a week which would have felt terrifying for me.
Much of the testing and procedures you mentioned are typical for testing for Myeloproliferative neoplasms (MPN) but I’ve not read that other forum members have gone through all that in such quick succession—I get the impression the ultrasound and venesections and so on usually occur over weeks, rather than all at once. I’m noting this as it’s a lot to take in and tolerate and I hope the anxiety you feel fades as you come to accept what you’re experiencing. It’s a lot, isn’t it?!
Like dear @Erica and @DottieB have said, and I see dear @Jonpd is typing too and will no doubt share invaluable advice, do give yourself time to try taking this in. Going suddenly from cancer-free to a potential diagnosis is a big life event so treat yourself kindly. I remember the space in between getting my positive JAK2 gene mutation test result and then the final diagnosis feeling like the longest moments of my life.
What may help now is to keep yourself busy doing distracting, pleasant activities. You’ll know what sort of stuff occupies your mind best. I got into watching whole series of favourite TV and films! Keeping active and trying to stick to previous routines might help distract or vent that pesky anxiety too. I found hiking really helpful.
Maybe bear in mind that anxiety appears at stressful times and is an ancient process our brains and bodies engage to protect us and keep us vigilant against perceived dangers. Personally I can’t think of a more dangerous feeling time than awaiting diagnoses.
Sorry if I’ve gone on but I really feel for you @Dean211077. Maybe continue looking around the forum for others living with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET). Do consider calling the lovely specialist nurses at BCUK who you’ll see commenting and supporting us around the forum, their number is 0808 2080 888 like @Erica shared.
Do please keep us posted about how you get on, we’re here to support you.
@Jonpd thank you for getting in touch I’m sorry you went through this as well but it is good to hear you have continued to have a good life for such a long time after diagnosis. Can I ask if you ever found out how long you may have had before diagnosis?
And yes I think you can say my numbers were a little high, from the first GP blood test that got me sent to hospital my HB was 267 (g/L). Compared to my target now of approx 160 (g/L). and my PCV was 0.78 (L/L) this took 5 weeks to get down to 0.475 (L/L) but after 4 weeks just on aspirin it was back at 0.546 (L/L). During those first few days in hospital it seems pretty much everything in my blood was high but I don’t get those results anymore just HB and PCV so can only plot those two on graphs
@Duncan Thank you for the response you definitely didn’t go on it was really helpful. I know finding out is best so I can control it but honestly all the symptoms I had I just thought was me being lazy it was even a family joke about how much I could sleep when not working and my family just thought my bright red head and ears was sun burn from working abroad now I’m being told these are symptoms and I need to
Learn how to live with them but I’ve had them as long as I can remember I was already living with them they now just have a really shitty name
I remember being in between diagnoses with the JAK2 gene mutation and whatever it ended up indicating was really hard. I’d say don’t google stuff just yet, although your haematologist has already said what having the JAK2 mutation usually means.
When you do come to have more diagnostic information try to stick to official blood cancer research from places like BCUK and MPNVoice, basically medically up-to-date information. There’s a lot of totally inaccurate search results at the end of a quick google, for example telling me I had a prognosis of 5 years!!! I think until recently many people were diagnosed with Myeloproliferative neoplasms (MPN) in older age and their prognoses were based on having less life ahead, simply from being older. Not so relevant when these disorders are found in our 30s and 40s.
What I will share that might be a relief should you be diagnosed with Polycythaemia vera (PV) is something my lovely haematologist reminds me at low points—those of us with Polycythaemia vera (PV) are much more likely to die with it than from it. We can live relatively normal long lives with slight adaptations, as dear @Jonpd has kindly shared.
For now though you’ve got The Wait to tolerate so I really hope you take it easy, expect some difficult feelings to bubble up, and have some loved ones to share this with. Sounds like you have a sense of humour too which cannot be underestimated as a great way to manage these uncertainties.
And now you’re a member here so you have an amazing breadth of support and advice right at your fingertips, you only need to ask. Really glad you found us @Dean211077!
@Dean211077 I had symptoms for probably about 2 years prior to diagnosis. The symptoms were headaches, visual disturbances and from time to time just generally feeling unwell. The visual disturbances were the most alarming symptom. I did from time to time take the painkiller solpadine which I guess unknowingly thinned my blood.
My GP initially thought the headaches were migraines. Eventually I had a various blood tests and had a call from the GP to say that I needed to go to haematology the next morning. They did tell me I had one of the highest red blood cell counts they have ever seen.
Since my first venesection I did not have another visual disturbance.
Aww @DottieB you sweetheart I’m still awaiting test results, which my lovely family doctor will call me about. I’ll share more once I know, but I’ve been practicing patience and keeping active and not forgetting to treat myself after every medical appointment! Thank you for checking on me, it feels very caring.
Oh @Duncan I am sorry to hear that you are still awaiting results.
When I am awaiting results it really brings it home to me what others go through on our forum and perhaps that is why we can relate to and support others and why our forum is so valuable.
I can remember my mother saying ‘patience is a virtue’, she used to say a lot of sayings which I now realise are annoyingly true!!
I do not make a ‘patient patient’
Be ever so kind to yourself and keep treating yourself, you deserve it.
Thank you so much @Erica, it feels like I’m only ever a wise and caring comment away from your support. It’s very comforting.
I love that saying, patience really is a virtue! I use it often thanks to my mum. Kids I’ve worked with over the years perhaps use it too now, finally understanding why I said it so often to them!
Speaking of patience, yours must surely be very effective after tolerating your own health concerns, no?! I’m so in awe of how you’re managing long-term stuff with what you’ve shared recently—all whilst still being so supportive of us here.
I hope your recent bumps and self are healing well dear @Erica and hopefully it hasn’t put you completely off your strolls. I’d come and walk beside you if I could.
When my test results come through I’ll let you know
I won’t add anything to what the other members have said, you’ve probably had enough for now. This is just to add another voice to let you know you are not alone and we are all here for each other. Best wishes to you and your family.
So I’m in a taxi after a crazy 30 minutes running round my house in my pants because I slept through my alarms finally on my way back to work .
Hopefully the not so perfect start is not how it will Continue but even if it is running round in
my pants because I’m late for work is still better than sitting around at home in my pants over thinking things .
Now Having spent the time in the taxi to read back through the messages from @DottieB@Erica@Jonpd@Pedro@Duncan I feel incredibly happy to have found this forum but also very rude that I am so lost in my own life dramas that I haven’t even thought about let alone asked if you are all doing ok . As I messaged @Erica on another page I’ve never been a fan of or on anything like this forum before but also I’ve never been waiting for a diagnosis like this before so please forgive me if I have come across as selfish or rude by not showing more interest in all of you but I’m really glad I’ve found this forum and I hope to find out more about you all in the future .
Hi Dean211077, don’t worry about doing the right thing on here or not. Everyone is supportive and understanding so it’s virtually impossible to do the wrong thing. This is the only forum/social media type thing that I do too and I’m sure that’s probably the case for others too.
Waiting for diagnosis is difficult, I can only advise keeping yourself busy and to do things you like doing, I’ve found not trying to think of something as counterproductive. When you know more you can work out what to say to work etc. Others will be in a better place than me to tell you how this went for them, as I was retired when I was diagnosed. I hope you remembered to put some additional clothes on, hate to think of you in a taxi just in your pants.
You are not and never have come across as selfish or rude @Dean211077.
We are here for you and perhaps if the future you might, if you would like to, be here for others when you really remember and relate to their thoughts and feelings.
I am equally concerned and have a vivid mental picture of you in your taxi in your pants, hopefully with an armful of clothes and your packed lunch.
I reckon that sleep is so important and probably what you needed.
If you need it there is a lot of information on the Blood Cancer UK website about just diagnosed and money and work etc.
Please do keep posting, take it steady and a tip from me, keep communicating with your employer.
.
I’m still awaiting test results, which my lovely family doctor will call me about. I’ll share more once I know, but I’ve been practicing patience and keeping active and not forgetting to treat myself after every medical appointment! Thank you for checking on me, it feels very caring.
.
but even if it is running round in
. As I messaged