Hello ! I got diagnosed with Essential thrombocythemia (ET) (watch and wait) at 54 years old in December 2022. I have also been diagnosed with another chronic illness after covid/long covid damaged one of my organs…I used to be very active but alas no more.
I’m just feeling very low as I have no family at all and no friends. I live with my partner and our dog and work part time in the same establishment for over 30 years and they have been very supportive. I put on a front at work being Mrs Bubbly but if I didn’t go to work I would never speak to anyone at all during the day.
I seem to be putting on weight at the rate of knots and not eating loads, my balance is wobbly at times, I get really scared that I may fall, hurt myself and then won’t stop bleeding due to the blood thinners I am taking, when I wake up I’m so stiff and takes me a while to move, my brain used to be so sharp but now I get confused or just forget simple things.
Anyway I just felt the need to write this and couldn’t tell all this to my partner as he wouldn’t know what to say.
Hoping this community may help me when I’m feeling sad and lonely.
A warm welcome to you @MB1969, so glad you’ve found us. I’m so sorry to hear how you’ve been feeling and what you’ve had going on with your health, it sounds tough. I’m sure there will be people on here who can relate to the feelings you speak of. Have you spoken to your haematology team about how you’re feeling and how it’s affecting you? If not, we’d really encourage you to do so, so they’re aware and can support you. They may be able to refer you to psychological support within the hospital if that might be useful for you.
We have a webpage which talks about small things we can do to help support our wellbeing, and it also links to blogs written by people affected by blood cancer about their mental health, in case you want to take a look - Blood cancer: mind and emotions | Blood Cancer UK.
Also, in case you might find it useful to watch, we recently held an Ask the Experts Q&A session on anxiety as part of ‘Mental Health Awareness Month’. You’d be so welcome to watch it through - Ask the Experts Coping with Anxiety - YouTube.
Take care, Alice
Hello @MB1969 (Mrs Bubbly), I am 73yrs old and In have had another blood cancer for 19yrs and other conditions.
I also have a ‘smiley default mask’ that has served me well in some ways since childhood. I was brought up thinking that people only liked/loved ‘smiley’ people and if they really knew what was going on behind the mask they wouldn’t like me.
I have a husband that goes round with his head in the sand and is quite happy working in his study.
I find just a bit of fresh air and gentle exercise really helps me and also with my confidence after a fall I had, perhaps just walk a bit extra over time. Maybe your dog would enjoy it too. Also a dog gives you the chance to speak to others, perhaps just a ‘hello’ ‘nice day’ but it all helps and is a start.
I speak to everyone when I go shopping too, no wonder my husband disowns me!!
Well, you will never be alone again as you have your forum family around you and I have found that this is the one place where I can really say how it is for me. The Blood Cancer Support line is also there for us to speak to on 0808 2080 888.
It is natural to feel sad sometimes otherwise you would not appreciate the happier times.
Since the shock of my diagnosis my thoughts and emotions have been all over the place. You have had so much going on and change since Covid times so be kind and spoil yourself (or selves).
It must have taken you a lot of courage to post on here and it also shows that you want more out of life and are willing to do something about it.
Please do keep posting as I would like to hear more about you.
Look after yourself
I was so sad to read your post. When we have a lot on our minds, as you do, it’s so hard and draining putting on a front, and we need friends not just for the good times, but for a shoulder to turn to and as a sounding board to sort out complicated feelings and situations.
I’m sure as a consistently bubbly colleague of 30 years in your workplace, that there are people at work who are very fond of you, and who would gladly have a coffee and a chat about your worries. But perhaps you are an introvert, and prefer to take time to make meaningful and deeper connections with people, as I do, and therefore find the workplace isn’t the environment for that? In that case, environments that offer opportunities for one to one connections are a good place to hang out, and perhaps to try something new - and maybe make a couple of new friends, for eg. an art or language class, or support group for people with your condition, or a dog agility class (you may well guffaw at rhe last if your dog is anything like mine.)
I don’t have the same blood condition as you, but I would suggest you seek out an opinion from a doctor or nurse about sometimes being unsteady - that does sound potentially problematic if you fall. I cant offer any other advice on your condition though.
However, I am the same age as you, and what does jump out at me are your stiffness, rapid weight gain and fuzzy brain. Sounds like menopause stuff to me! I had these symptoms (and more) and HRT patches have helped my joints, but the weight is a constant work in progress, and the less clear mind - well, other factors like chemo and smart phones also come into that with me. But it might be worth speaking to your GP about this to see if they think this is menopause-related too (perhaps it isn’t) and to discuss your options. With a health condition like yours, it is always wise to speak to a doctor if you have noticed any niggly health issues or changes at all.
In terms of other support, we’re here; you could phone the Helpline, or perhaps look up a Facebook support page for people with your condition. But you can definitely message us here whenever you like. Consider us your new friends. X
Hi @MB1969 ,
So sorry to hear how you are feeling. I think it’s a lonely place sometimes when you feel poorly and your thoughts run riot. You’ve already had some great advice from the wonderful ladies above but just wanted to say hi. I too had a myriad of strange symptoms after COVID which no one seemed to have any idea what was going on. Everything from long COVID to menopause, MND!! , Lupus and amyloidosis were mentioned and investigated along with the skin issues, cysts, violent reactions to various medicines, skin peeling, urinary infections and shaking I was experiencing. I went from healthy happy person to someone so disabled through various issues and I found that very difficult to deal with. I was finally diagnosed with monoclonal gammopathy of unknown significance (MGUS) and I’m on watch and wait every three months. I can understand your loneliness, but you have now found this wonderful place, where we all ‘get’ the way you feel. You are definitely not alone. This is a safe place to say exactly what you need to say and someone will listen.
Thank you Alice for replying so kindly, I took your advice and have just finished watching the You Tube video which I found so informative and helpful in the way that two other blood cancer patients have felt and also the way they deal with things.
I will also speak to my haematology consultant next month re my concerns.
@AllyBally Thank you SO much for taking the time to reply to me and what an awful time you have also had with everything and sending a virtual hug to you.
Such a wonderful community and the replies have lifted me today and feel I’m not as alone as I may think I am, also reality that other people are going through the same and even worse.
I’m so grateful that you have taken the time to reply to me and made me laugh with the dog agility class (my dog is an elderly strong minded female) so there’s no chance !
After reading your reply I’m going to get out of the house tomorrow, go to the local library and see what activities/courses they may have. I like the sound of an art class, I also enjoy reading so good place to start.
When you have no one to talk things through with, sometimes you need a suggestion or a little push and I “thank you” for that and for also being so kind
Yes, my dog wouldn’t get very many millimetres off the ground, ha ha - it wouldn’t be the solution for me either. But your energy to go to the library and perhaps an art class is actually inspiring me to seek out something creative. I love reading too, but I’ve had difficulty concentrating since leukaemia/the menopause/the pandemic all happened at once. But something creative would fill that space. Thank you too!
I hope things feel a bit better for you very soon. Let us know how you get on with everything. X
Hi, there’s an app called MEET Up, you sign up to groups in your area and meet up and make new friends, or if you don’t fancy any of them and your an organiser you can start your own I joined 1 for chats coffee and cake , the 1st couple of time was scary, but it’s been a year now and we meet up at least once a week, it keeps me sane
Welcome @Lynnrobo you have already shown one of the great values of our forum by sharing your experiences.
I look forward to hearing more about you.
Please keep posting and take care of yourself
@Erica Thank you so much for replying and yes my emotions are all over the place and they get heightened when you have no one to discuss it with. This forum and the replies that I have received today have helped more than anything.
I have decided to try to do something new and either go to the library and see what activities they do or there is a local sew shop (walking distance for me) which have quilt making lessons so a bit of interaction with people and learning by keeping the brain going at the same time.
It means a great deal to me that you took the time to reply and I hope you are coping too with your diagnosis.
Hi @MB1969 ,
You are very welcome…looks like you have had lots more replies and comments as well. Thankyou for the virtual hug, sending some back your way , take care.
Oh @MB1969 what a really great idea, I think people sharing a like of something is always a really good start.
I also believe in just smiling at others on my walk and I was thinking yesterday that many smile back and it just gives me a boost.
We will await how you get get on, please do let us know and really look after yourself
Hi, have you looked into menapause? Putting on weight is a symptom (I’ve put 2 stone on in 2 yrs as is feeling low. I’m a similar age to you, and also have Essential thrombocythemia (ET). should you wish to take hrt, I believe it’s perfectly safe for us so long as you don’t take the estrogen as an oral tablet, have a look at the balance app. Take care x
, take care.
as is feeling low. I’m a similar age to you, and also have Essential thrombocythemia (ET). should you wish to take hrt, I believe it’s perfectly safe for us so long as you don’t take the estrogen as an oral tablet, have a look at the balance app. Take care x