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How am I supposed to feel

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@Vindicatrix thank you it is hard at times I just think its one thing after another… But being on here I can see I’m not the only one. Its really nice to see how people are dealing with their diagnosis. I don’t know it’s sunk in properly I think I’m still waiting for that to happen maybe it’s why I wonder what all the fuss is about… I’m just not used to it… I’m one for just going out and doing not having obsticles put in the way… I think this is my biggest issue… Accepting the obsticles and finding ways to deal with them not just with the blood cancer my back aswell… I’ve already had counselling for that and cope much better than I was… The dental thing I find funny my dentist worrying I’ll bleed too much my haemotolgist worried I’ll clot all in all hospital. It is… I did always wonder why I don’t bleed too much when I cut myself now I know… But now I always have that worry of making sure I get my daily. Exercise even if my pain is so bad I can’t walk far at all I always think I’m risking a blood clot if I don’t get out so go get some fresh air then sleep when I get back as I know i will… I will always do what the professionals tell me to do as I know they are looking out for me even if I can’t accept what is happening to me… I’m just going through the motions… I feel like it’s happening to someone else but I’m doing what I’m told needs to be done…
I’m looking forward to doing all the things I didn’t used to enjoy before lockdown… I miss my Sunday morning coffee in morrisons… I miss Saturdays being dragged around the shops just so we can get my partners son out of the house and he loves shopping so it’s a bonus… I miss the car booting… So many things I took for granted I now can’t wait to do again… We’re finally. Starting to make plans for this year albeit later in the year when things are better and fingers crossed I’ve had my back op…
And today I spent sometime on myself for a change the bath I wanted instead of a shower went out of the window because of the paim but I spent all afternoon doing my nails it was lovely and relaxing…
I can see I’m not alone and its making me less stressed about how to deal with things as I know i can ask questions and get the support I need from people who actually.know how. I feel…
Ellen

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Hi @Calabria and a great big welcome to posting on our forum and you have shown what I have found is the great value of our community forum - support.
Yes, blood cancers can be slow to be diagnosed and it is an issue that Blood Cancer UK have been really highlighting and campaigning about.
I do like your philosophy and I am a pilates girl too and I also believe in living life to the full, my diagnosis has definitely made me reflect on my life and what I want to do and who I want to do it with.
I look forward to hearing more from you.

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Hi @Ells, you have inspired me to post after a few months of skulking around reading other people’s comments! To be honest, I thought I was reading about myself when I read your first post.
I was diagnosed with ET (triple negative) in April last year following a heart attack whilst waiting to see specialists about a high platelet count, but getting cancelled due to COVID. The heart attack did the trick though! I am now on hydroxycarbamide and aspirin and a load of other medication following the heart attack. Having read about the symptoms of ET, I think I had it for about 3 years prior to diagnosis.
It has been a difficult time emotionally and I don’t think the constant worry of catching COVID helps. I also find other people’s reactions to my diagnosis can be quite extreme and I have now given up telling people unless they ask me directly even though I know they know and are desperate for me to say something about it! I suspect this would be less of a problem if I was shielding and not seeing anyone.
I went back to work about 5 weeks after my heart attack and have worked full time since. My consultant said I didn’t need to shield, but there is so much conflicting advice it is very confusing.
I have found focusing on healthy eating and exercise has helped me immensely and I definitely think it has reduced the symptoms of the condition and the side effects of the medication, particularly in relation to the fatigue.
It was so helpful reading your posts, so thank you!

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Welcome @ClaireS to this forum. I am so glad you have found us and thank you for bravely sharing your story. What a lot you have been through! It must have been, and still is, such a shock. I have a different MPN (myeloproliferative neoplasm) as they are called but I identify with your comments regarding other people’s reactions. It is tricky and not easy to handle. I wonder if you have found the MPN Voice website? It has lots of helpful advice and information. Please continue to keep us updated on how you are doing, as and when you feel able. Warm wishes. Willow

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Hi @KlrS, I am so glad that you have posted and thanks for giving us so much information about you.
I am not surprised that it has been a difficult time emotionally for you. You have had so much to get your head round, firstly there was Covid, then your heart attack, and then your ET diagnosis. I don’t suppose you really had time for the fear and shock to settle before all the other emotions and thoughts came rushing in. My emotions still seem to be all over the place, I shed a tear or two at a song playing on my walkman on my walk today.
As for other people’s reactions, I honestly think that everyone flounders and does not know how to be and what to say.
Yes, isn’t it helpful and sort of a comfort to relate to other’s posts. I find the forum so supportive.
I am not medically trained but take care and stay safe, it cannot be easy though working full time and seeing people.
I look forward to hearing more from you

Hi @KlrS in glad I inspired someone to come in here and seek some comfort too… I know how you feel… Sheilding I was told was technical but I got the letter… Not that I really needed it I’ve not worked for 2 years because of my back issues and at this stage now I doubt I ever will do however I’m now comfortable with that side of things and just concentrating on getting my op and seeing how things pan out… As for people’s reactions my sister constantly feels sorry for me which is something I just don’t need and everyone else who knows either doesn’t know what to do or panics as they’ve heard the word cancer and thinks the worst… So I have to try my best to explain something I’m struggling with… Not many people know I’ve not plastered it all over Facebook… If people ask I tell but other than that I really don’t care… But omg I bet going back to work after a heart attack was bad enough let alone having to deal with this on top… I did look up what I could do to help myself and try my hardest to stick to healthy eating and walking hard as it is… Fatigue is the worst isn’t it… I don’t know how you manage to work with it… I used to get really tired at work in the afternoons and never knew why however after my diagnosis I realise that it’s probably this that was the reason…
You are more than welcome… I’m so pleased I could help…

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Hello Ellis,
I have triple negative ET and am on hydroxycarbamide, aspirin and statins. I’ll be 68 in July .
I can also relate to how you must be feeling.
Initially I felt very low about having a chronic condition that could be managed but not cured. I confess to being somewhat irrational in my thought processes surrounding my more formal diagnosis and treatment. This happened to me prior to lockdown so I can only imagine how hard it is to be diagnosed in lockdown.
In my case anaemia and a higher than normal platelet count was flagged up several years ago after I had my second daughter so about 33years ago ! but once the anaemia was treated and stable ( I had no other problems that I was aware of ) nothing more was done until after my mum died in 2018 when a recheck revealed I had “spiked” a much higher platelet level .
I hope you can take heart from the fact that my mum had jak2 ET not diagnosed until she was in her 80s and she lived until age 90 .
I’m aware that you seem to have had a few more complications than myself and that each and every patient can be very different from the next due to varying factors ( age , other health conditions etc ) but hope that you’ll feel much better hearing that you aren’t alone in feeling this way and that once you come to terms with things and manage to share your feelings I trust you’ll slowly start to worry less. It’s all to easy , been there done that , to sit overthinking things and do too much “ what if”. One day you’re ok the next you panic!
I now have an amazing consultant who is very pragmatic with advice. I’m much more positive now ( for info my levels are just over 500 now hopefully be less next time - I’ve had a slow steady reduction over the last year )
My advice is to have a list of all your concerns ready to ask your consultant. GPs can’t usually comment and even any specialist nurses who are usually absolutely excellent at explaining conditions, treatments , drug side effects etc , can’t advise you in respect of questions around shielding etc. Haematology consultants are the ones to ask ( if your appointment is with a registrar they also may not be in a position to give advice ) the consultant can however assess you as an individual. I found that mine was happy to go through any concerns with me and put things into perspective too. Ask your consultant again about shielding too because as another person has said there is conflicting information out there in respect of shielding and ET. In my case my platelet level is reducing and my treatment isn’t affecting my immunity in any way ( all my other blood results are ok) so I’ve been advised I don’t need to shield but obviously do need to take all other precautions seriously.
If you do have to still shield when things are lifted a bit more , maybe try a drive to a nice spot away from crowds to stretch your legs with different scenery. I’ve done a lot of “pottering” in and around home and kept reasonably busy as though not shielding I take note of covid infection levels in my area and act accordingly . There are ways to keep safe while still keeping sane.
I hope you get your surgery sorted out soon.
Take heart that my mum went through two hip replacements when in her 80s and we were convinced she had lived with ET for many years before her diagnosis. The surgeons being aware of your condition is a bonus. Sure there will be others on this forum that can give you positive feedback after having surgery while having ET too.Hope you get your surgery and dental work sorted soon.

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Hi @Brenthebaker thank you so much for your kind words… It is a shock and you’re right thoughts can be so irrational at times… They always ask any questions and my mind goes blank… We have decided its very difficult to tell at the moment what ailments I have are to do with my back and what are to do with the blood cancer. The symptoms are so similar so I seem to be going between the gp and haematologist to try and find out… All I’ve managed to do is find out I strained my knees walking which I thought was hilarious considering I don’t walk far at all… Covid levels are high where I am so all I do is a small walk most days to try to reduce my chances of a blood clot and help my weight… Which on the bright side I’ve lost 2 and half stone only. 1 and half to go another struggle but I’ll get there… Pottering is something I’ve learnt to do over the past 2 years since the doctor signed me off sick with my back and told me to do exactly that… I’m on aspirin and anagrelide(probably should be on statins but they decided before I was diagnosed not to give me them as I’m on alot of medication already they didn’t want to give me anymore and here I am with more) … which has helped get my platelets down for the op it’s taken a year to do but at least its working finally something is normal about me :joy: I do get low like you about the condition knowing there’s nothing really we can do to get better… It took a while to get my mum to realise I wasn’t going to recover it was just going to be managed… We certainly know I’ve had this for at least 7 years probably.longer as I moved and they don’t have my medical records from MK to verify it. Omg your mum got diagnosed when she was 80 I have read there’s no reason why we shouldn’t have a normal life which is a good thing and she certainly did… I hope i live that long I’m half way there now so really want to get my other problems resolved soon so I can live a little better than I am at the moment. I’m planning to see mum soon it’s always a good boost for me a few days with her we have a good laugh and I always chill she never let’s me do anything while I’m there… We’ll have some nice short walks together as she cant walk far either… I hope too things get sorted I hate waiting… Thank you again for you kind words and support it’s very good to hear how people with such similar I don’t want to say stories but can’t think of the right words are coping… Xx

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Yes Ells, I do think we get very irrational about things. I also understand you saying you not working out which symptoms relate to which conditions.
I have days when I feel weary and it’s easy to blame the ET but then when I chat to friends during lockdown , that don’t have ET or any medical issues, I hear that they too have “ off days “ and that feeling like this might not be down to any medical reason at all ! - which is actually fully understandable considering the last 12 months we have all been through.
I hope you enjoy your time with your mum - a good laugh is definitely brilliant medicine.
I’m sure once your back issues are sorted you should start to feel so much better overall and once you can start to do more normal things the ET will just fade into the background .
I rarely think about mine now apart from when my appointments crop up or I get the odd email from this forum. Once you’re confident your platelet level is well managed I hope you can shelve it to the back of your mind too .
As I said I was about 33 when I was first aware of having a “platelet issue “ and at going on 68 I’m still here and still ok. If it gets too much and you start to get irrational just take things day by day and try to distract from it all . Good luck.

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@Brenthebaker that is probably quite true we’re all easily weary with being limited to our activities… I know my tiredness has alot to do with my meds and I do have an explanation to the tiredness I was experiencing at work everyday which I couldn’t explain when I was working that is. I still get extremely tired and just drop off but that is something I just live with… It has been a very tough 12 months for all of us and how we’ve got through it I’ve no idea tbh… Oh yes laughter is always a brilliant medicine not that I don’t get it at home but being with mum is always a good break.
I’m hoping once Ive had my op ill have some mobility back so at least I’ll be able to do more for myself so my frustrations won’t be so high… I think the consultant is happy my platlets are OK as I’ve now finally gone to a 3 month appointment for the first time since being diagnosed… Which is a bonus… Last year was the first time I’d ever been told there was an issue and it had been going on for a considerable time then to be told what it is and it isn’t curable all in a short space of time I guess is alot to take in and get your head around… I’m being told by everyone to take things day by day and I think you’re right definitely distract I’m at my happiest when I’m not thinking about things :blush:

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Hi @Ells how have you been doing the last few weeks?

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Hi @Alice_BloodCancerUK I’ve not been too bad I’ve had my moments… But I am trying my hardest to be alot more positive about everything and it does seem to be working to a degree… I’ve had my first appointment at the hospital for the dentist which went well so just waiting now for the appointment to have the tooth out… I’m still struggling to get my head around things and all the fuss being made around every little thing needing doing but as my partner keeps telling me now thry know there is a problem they want to make sure I’m OK… My problem is I don’t do the fuss thing… I feel tearful but not had any days where I’ve sat crying all day so some positivity.
Thank you for asking how I am it is muchly appreciated… I do hope you’re all doing well too… :blush: Xx

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It’s great to hear from you. It’s just a whirlwind of emotions isn’t it. It sounds as though you are really aware of your thoughts and feelings thougnwhich is good. Just take care of yourself on those down days. Your partner sounds great!

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Hi @Ells, great to hear from you, it’s OK to have your moments, I can burst into tears at the least thing sometimes.
However your husband seems to be giving you great advice.
I am glad that you are being looked after, I know I hate feeling fuss is being made about me but perhaps this is care not so much fuss.
I hope your tooth extraction goes as it should.
I went out for my daily exercise today and the sun was out and also different coloured blossom is opening up. It was glorious and really took me out of myself, just what I needed. When I was first diagnosed I wouldn’t have noticed those things at all.
You have got support on our forum and if you would like to talk you can contact our Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Look after yourself and perhaps you and your husband have some treats.
Please let us know how you are getting on.

Hi @Nichola75 yes it is. I am trying to be more aware of them and what going on with myself… And trying to take more care of myself thank you… My partner is great I don’t know what I’d do without him :blush:.

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Hi @Erica he is giving me great advice although I do have a habit on not listening but am trying to change that.
You’re right it is more care than fuss it just seems to me unnecessary as I’ve lived with this for so long without all the “fuss”
I hope it does but as the dentist said to me it’s down to him to worry about things not me I just need to turn up on the day.
I have started to notice more things on my daily exercises I have days where I will just wander around the garden while the kettle is boiling rather than go out but it works for me with my back… But I’m noticing things in the garden too it is nice to see and nice to make plans for the garden to make it look good for the summer… My poor partner will have his work cut out lol… I plan he does… It’s how we work in not good with plants I only have to look at them and they die haha…
Thank you… The support I’ve recieved so far has helped me alot and got me to think about things differently… I’ve treated us to some dvds so we can spend some evenings together… We’ve been talking more the last few days properly about everything which is helping alot. I’ve spent the last week at mums it’s done us some good to be a part I think being together constantly since Christmas we’ve annoyed each other a little. Lockdown has not helped. As mum’s in our bubble and we’ve both had out vaccines I decided to spend some time with her to give us a break… :blush:

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Wow @Ells, it sounds as if you have done a lot of thinking and you really have a great insight into yourself and your relationship.
My poor husband has had me here shielding for a year now. My insight is that I need to look at my behaviours and not his.
We are not great at honest communication and each have our clearly defined roles and routine.
I am also not known for my green fingers. We now live in a flat but I can kill house plants off. I really tried so hard with a poinsettia at Christmas but it was bald by 12th night.
I think laughing at myself and apologising immediately helps my relationship oh, and appreciating his ‘funny’ little ways !!!
Has anyone else got any handy hints.

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@Erica I’ve tried really hard we both have and we both know spending some time apart every now and then does us the world of good even though we miss each other loads.
Its been the same here I think I drive him crazy but I’ve tried to be considerate although I know i haven’t been at times. Alot has happened and it’s been hard on us both which has affected us both and led to him being off work with stress… He’s learning to open up to me and I’m having to learn to listen and not interrupt him its such a bad habit of mine… I am having to look at myself more and change a few things to help us we are both making changes which is great. Neither are we I’ve always found it hard to open up but I do try and he’s improved alot recently I’ve learnt to let him come to me and now I know where I need to improve he’ll probably tell me more… He’s agreed to help me when I’m failing and not just end the conversation…
Oh yes I’ve killed many plants over the years so now I choose and he does all the work it’s a great system I think he’s not so sure :joy:… Mum bought me a plant the other year for my birthday it was dead within 2 weeks I just couldn’t keep it alive… I do laugh at myself and apologising definitely helps… I tell him i him and his ways it is why I fell for him in the first place… Where other critise him for how he is I stick up for him. He is a little over weight and he knows it but digging at him isn’t going to help I’ve told him many time I don’t want a stick thin man something to snuggle into is lovely instead of bones… He’s been there for me when I gained weight after not being able to work and been so supportive i gained 4 stone and managed now to lose 2 and half stone he told me today how proud he is…
I think the handy hints for me is to stay right away from plants lmao

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Hi

It has been inspiring reading the latest posts on ET. This is not the first time I have posted. I was diagnosed last year with ET and like most people it came as a shock. I’m only on Asprin at present. Last week I got my newest blood results back . My platelets have gone up a little but not to much. All my other results were fine and my cholesterol was lower . I was very pleased . I continue to be positive and I am still eating well and exercising every day. I to am lucky as I have a great husband who supports me .
I sleep a lot and I think that helps. Thank you to everybody who shares their experience’s it helps .
:grinning:

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Hi @Macymae123
You were diagnosed last year too… I would only be on aspirin if it wasn’t for trying to get my platelets under control for an op… One of the haemotolgists I saw said to me they wouldn’t intervene until I was 60 unless they went over 1000… I’m still trying very hard to stay positive I sleep alot too its funny I’m being sent to a sleep clinic as my doctor thinks I have sleep apnoea… So I’ve decided to research all the meds I take as they don’t believe the amount I’m on would affect me being so tired and dropping off so much is connected and then on top of that I have this condition… My poor partner doesn’t know what to think anymore it’s just one thing after another just lately and I swear it’s one particular medication that’s causing the sudden dropping off issue as the problem started at the same time it was upped to the maximum dose… My partner shares my views on this latest problem we now got to wait and see what happens in logging everything until I go to the clinic… Take care of yourself and I hope your platelets go down soon… :blush:

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