Hello @BloodResearcher can you give us a little more about your experience and what youâd like us to provide you with? Are you looking for support, information about a the blood cancer that affected your relative or how you can help to improve outcomes? Or are you interested in the carers perspective, sorry Iâm not sure I fully understand what you mean by your post, thank you
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Thought itâd be a good idea to restart this âIntroduce Yourselfâ thread! Welcome to all those new here, do feel free to introduce yourselves and tell us a bit about yourselves when you feel ready 
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Been lurking in these forums for a while but thought Iâd come out of the shadows and introduce myself.
I was diagnosed with Hodgkinâs Lymphoma a couple of years ago, and went through 8 cycles of ABVD chemo and then radiotherapy. Chemo is never great, but I seemed to lose the luck lottery big time, and hit every possible problem along the way. Every possible side-effect hit me really bad, and I only had about 2 days out of each 14 day cycle feeling relatively human. I also had all sorts of other issues with blood clots, a very near miss with sepsis, PICC-line issues, and then a bunch of other post-treatment complications.
It was all worth it though. The treatment seems to have done its job, and Iâm in a good partial remission at the moment (lymph nodes havenât shrunk enough yet to be called a complete remission).
I luckily got most of the treatment out of the way before covid hit, but Iâm still obviously quite immunocompromised, and like many other people on here have been quite isolated because of the risks.
Itâs funny, even two years on, Iâm still processing and coming to terms with what happened. I donât yet feel like I have any closure on this episode of my life - partly because blood cancer doesnât seem to have a specific âendâ like other (solid-tumour) cancers do, and partly because covid destroyed any hope of any definitive end of treatment celebrations. Iâm guessing others also feel this long lingering tail of blood cancer too?
Anyway, just wanted to say hi, and to increase the number of Hodgkinâs related posts on here and there donât seem to be as many as I thought there might be.
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Hi @muppet I am so glad that you have emerged from the shadows to introduce yourself.
Although it sounds as if you hard a really tough time going through treatment I think you were very lucky to go through it pre Covid times but then like so many of us have been
quite isolated because of the risks.
Itâs interesting that you say that even 2 yrs on you are still processing and coming to terms with it all. I think I was too.
Yes, we can never say we are cured and as you say you missed out on any end of treatment celebrations. 17 yrs on and I also have a little celebration on the anniversary of when I was diagnosed.
I am a very visual person and I think âthis long lingering tail of blood cancerâ is so descriptive, thanks.
I really hope you will participate more on the forum as I am sure that I will learn so much from you.
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Iâm really glad you came out of the shadows to. Iâm sure your post and experiences will really support others as well as is being able to support you X
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Hello everyone, I just wanted to come on & introduce myself as the new support service officer. I have loved being able to access this amazing space for peer to peer support and can really appreciate the value that it adds to the blood cancer community. Some really current topics being discussed amongst such a confusing and worrying time.
Looking forward to what this forum can do for our blood cancer community.
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Hi @LauranBloodCancerUK.
Lovely to meet you. The forum really is a great place! 
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Hi @LauranBloodCancerUK, thanks for taking the time to introduce yourself so glad that you have joined the brilliant Blood Cancer UK Support Services and that you have been on our forum and reading our posts, isnât it a lovely supportive place with absolutely wonderful people contributing.
I look forward to hearing more from you, look after yourself.
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Hi, my name is Jules.
I have been a member on here for quite some time, but this is my 1st time posting. I have to say that i have found the site very informative, & love reading all the supportive post.
I found out that I had an abnormal WBC 5 years ago, but have been feeling fatigued & unwell on & off for a few years more than that. I have been having my bloods checked every 3 months (none during covid until recently) since the abnormalities were brought to my attention.
Although my blood test are showing very mild changes, I am now experiencing swollen, painful glands, pretty much all over, strange bruising & other horrible symptoms. My gp has ordered yet another ct scan (long story), this time of my thorax, Abdomen & pelvis.
Because my blood tests have been coming back Borderline, I think the Drâs doubted me when I kept going back with symptoms, until my glands started swelling up & I became unwell over the August Bank Holiday that is.
She has explained that the scan is to check if any of my deeper glands are enlarged.
Can anyone give me any clues on waiting times for these types of scans atm please?
Thanks.
Jules
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Hi all, My name is Vij. Iâm 39 years old and was diagnosed with Polycythemia Vera (thankfully shortened to just Polycythaemia vera (PV)) last year.
I had a sister who died from a more aggressive cancer a couple of years ago so have gone through (with much pain and a not so nice ending) the supporting role for someone with cancer, and now going through a different kind myself.
I found myself quite anxious about it particularly because despite my cancer not being curable, my diagnosis wasnât instantly confronted with urgently going into hospital and having treatment or chemo⌠the type of things often associated with cancer. Instead it was a series of blood tests and venesections (withdrawal of blood like a donation) and doing my own research to find out this is pretty normal.
My blood cancer being pretty rare so not so much information available and only starting treatment (interferon) in June 2021⌠itâs been tough talking and speaking to people who are going through or at a later stage to this diagnosis to offer insight, support and advice but this forum has helped me massively as a place to go to.
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Thanks so much for @JulesB for posting on here.
It sounds as if you have been feeling very unwell and painful symptoms for a very long time.
You ask about waiting times for scans and I think it is so dependent on your NHS trust, patient need, trained medical staff, equipment etc. Funnily enough my husband, who hasnât got blood cancer, had a CT scan on a Saturday recently and waited about 3 weeks for it, which we thought was quick.
Yes, the not knowing and waiting is a really anxiety making.
I think it is worth writing down all your fears, thoughts, questions, practicalities, symptoms, family history, allergies so you ask everything you want to. I have learnt to be pleasantly assertive and really stress my symptoms and the effect on me.
We are here for you as is The Blood Cancer UK support line.
Please do let us know how you get on and in the mean time really look after yourself
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So glad youâve posted @JulesB and introduced yourself. Itâs good to hear that you were persistent with going to your Doctor and telling them about what youâre experiencing. As you may know, waiting times have increased lately due to many factors including staffing, waiting lists and prioritising patients. Scan waiting times can depend a lot on the hospital and also depend on whether the GP has requested your scan as urgent. You might find it helpful to read through this CRUK page Cancer waiting times | Cancer information | Cancer Research UK Donât be afraid to give your GP a call if you havenât heard within two weeks, or if you have any questions or concerns. If you want to talk this through with us Jules weâre only at the end of the phone on 0808 2080 888.
Sorry youâre going through what may be a worrying time for you - how have you been coping, have you got much support around you?
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I am trying to be proactive and make choices that put me back in the driverâs seat as much as possible. I have always been self sufficient and self reliant⌠at my age now its a bit hard to start and be anything else⌠This is a good thing though because with no family here and doing this on my own can you imagine what a mess I might be .Sorry to hear of your diagnosis, & welcome to this community.
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Hi @Alishan12 I like your attitude and I am sorry that you do not have any family support.
You have us on this forum for support now and I look forward to hearing more from you.
Look after yourself and take care.
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Hi I am new to the forum trying to find my way round the site .my name is Ian ( smiddy ) I have ET JAK2 âŚI am on hydroxycarbamide 500mg 3 every night except 2 one night a week .my platelets keep going up and down, worried that itâs not working
Also i am concerned about explaining things to family and friends .I feel they donât think its a cancer
Thank you hopefully someone here will understand
And give some advice⌠many thanks âŚIan
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Hi @SMIDDY
I found early in my diagnosis that I had to prove I had cancer which caused unnecessary stress and anxiety and I made to feel like a fraud.
I guess if you asked people about cancer their association is most likely going to be chemo, baldness, hospital and dying. And when youâre not falling under these categories, doubt from others creeps in especially if you act and feel ok.
I find my condition (diagnosed for just over a year) a bit of an invisible cancer but I am still learning about it and trying to get my head round it.
Looking around you may feel alone and no one quite gets it or understands, some of it is ignorance, some of it maybe a lack of understanding and knowledge, but this forum is great and may give you the support and advice you need to get through those darker days.
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Hi @SMIDDY. @Rammie18 gives really good advice. It is really hard as it is quite invisible.
You sound really worried about your levels. When is you next consultant appointment or check up? I think itâs really important to write all of your questions down, whatever it is. Please keep us updated on how you are doing. Itâs such a supportive forum and we all understand how you are feeling
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Hi Ian welcome! Sounds from your comments you may be newly diagnosed? It is hard to know how to explain things to family and friends when you are diagnosed with an âunheardâ of condition ! As Rammie says people tend to associate cancer with acute solid tumour situations with heavy intravenous chemo - and when you donât fit in that bag they are dubious 
But genuine pals and family will learn a little as you start to explain a few bits - take it as and how you feel comfortable as there can be a fine balance between letting others know whatâs happening with you and dealing with by condition and treatment and opening up a little but knowing you can get some comments that donât always rest well on our ears, albeit well intended. I think something like âi have a chronic blood cancer that I am learning to live withâ can help and a bit of detail like âit means my bone marrow and blood doesnât function well like yours so it does effect quite a few things in my bodyâ and letting people know you take an oral chemotherapy, lots of chemo treatment these days is by oral capsules and your particular one is for permanent ongoing use. I have found a few simple but straight details to friends and family help. I have ET diagnosed 15 years ago had 13 years on HU and now 3 years on Peg interferon so I have empathy for your situation all round and you will find support and care here on BCUK. In case you have not come across it, do use MPN Voice our specific charity who are so supportive, their forum is on Health Unlocked and they run very helpful patient days, currently online, that also are very supportive. All the best, keep us posted on how you are getting on
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Just reread your comments Ian and note the up and down platelets - your consultant will keep an eye on that - do know that platelets do go up and down naturally in anyone, so many things effect platelet levels and so for us with ET does not necessarily mean treatment is not working - itâs the benefit of regular blood tests and a quite normal situation of your HU dose being tweaked up and down - sometimes just one more capsule in a week makes a big difference - so your consultant will keep an eye on levels and dose and should tweak up and down as and if needed and that is very ânormalâ in our treatment. Itâs a funny thing in MPNs that there is no one size fits all as to doses of treatment - some will be well controlled with three capsules a week, others it takes 3 day, itâs very individual and doesnât mean either scenarios are worse than the other. Do keep asking your consultant (or specialist nurse if needed between appointments) anything that concerns you so they can give reassurance, they will aim to keep your counts within or near normal levels but you will find that can vary quite a bit at different blood tests and doesnât mean your chemo doesnât work and a little tweak on dose will assist for next time, which is the normal way that HU is used and prescribed. All the best
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Hi @SMIDDY welcome, I think others have said it all.
When I was newly diagnosed I couldnât explain to others what I didnât understand myself.
I also think hidden conditions are difficult for others to get their heads around.
I used to get so angry when people said âoh, you do look wellâ.
Also I think people expect that you get something wrong with you, it is treated and then you are cured and life goes back to normal, most blood cancers are just not like that.
Donât you worry I certainly understand you, you are definitely not alone on here.
I have also found this forum is a safe space to be able to share what it is really like to be me.
I look forward to hearing more about you.
Look after yourself.
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