I was diagnosed with jak2 and ET last April and told that I probably had this for at lesrt 6 years… The problem I’ve got is despite doing everything I have been told I need to do to help myself I find I get really emotional at times today being one of those days as I’ve had to rearrange a dental appointment due to sheilding. I really don’t know im supposed to feel and I really haven’t accepted my condition at all and not sure how to do that. I’m wondering if anyone can help me with this please. I would greatly appreciate it.
A warm welcome to the forum @Ells It’s so understandable that you feel emotional - I can only imagine how tough it all must feel at times. It must have been such a hugely overwhelming time for you being diagnosed in April last year, especially with everything else going on. You’re certainly not alone in your feelings around not knowing how to feel and how to accept your condition.
Just in case you want to have a read through, we have a page on little things people can do to support themselves in coping through difficult times - https://bloodcancer.org.uk/support-for-you/living-well/mind-emotions/ and we also have a section for people newly diagnosed - https://bloodcancer.org.uk/understanding-blood-cancer/just-diagnosed/
If you want to talk anything through at all or if there’s anything we can do to support you, we’re only a phone call away on 0808 2080 888.
Really glad you’ve found this forum - I hope that chatting things through with others who can relate and have been through similar feelings will be a source of support for you.
Thank you @alice I will have a read of those things and maybe I will start to accept things better… Being diagnosed during lockdown hasn’t helped when I’ve had to find out for myself about sheilding and been told.its technical but I’ll take that I get the letters. I don’t work anymore due to my back issues which is how I found it I had blood cancer during my preop which has delayed my op. It just feels more like one battle after another to me all the time… I haven’t accepted anything well…
Hi @Ells a great big welcome to our forum, I am so glad that you have found us.
The question of how am I supposed to feel is I think that there is no right or wrong and you have also got Covid times to add into your mix. A doubly whammy.
I have noticed in Covid times my emotions have been all over the place and I can burst into tears at the least thing.
When I was diagnosed I just went into shock and I felt that I was the only person in the world in my situation, I sort of felt in a bubble with the world going on around me.
Nothing other people said was right.
Everything you have said sounds so natural to me and I was diagnosed before Covid times. What a shock as you must have had to contend with you back issues and op and then you get diagnosed with a blood cancer.
There are similarities in our stories as I was diagnosed whilst having a gynae op, I have had extensive teeth extractions and I have osteoporosis and curvature of the spine, I have fractured several vertebrae and I was 5in taller.
Have you got any support from others and have you got any medical appointments planned?
Yes, take care of yourself but also spoil yourself as well, even if it just having an extra long soak in a bubbly, hot bath and keep posting so we can support each other…
Hi @Erica I’m glad I’m not the only one who’s emotions are all over the place. I have issues trying to explain to my partner why I’m crying as I just don’t know most of the time when I’m like it. Like today I think it was purely having to rearrange the dental appointment due to sheilding. I do feel the same as you do. I saw something on Facebook recently with someone who had been reviving treatment for cancer they rang the bell in the hospital as her treatment was complete it’s what they do. I was in tears for hours over that I was pleased her treatment was complete and happy for her but on the other side of that so upset that I would never have that. Nothing.my.partner says is right it’s frustrating for both of us. My partner is trying so hard to keep me safe aswell which is hard on us both. I don’t go out except for a daily walk away from everyone which I have to do or my treatment stops for this as I’m very high risk of a blood clot my mother has had one. It’s all just so tough at times one medical problem after another.
I am waiting for my back op as I’ve only just gone back on the list it’s taken this long to get my platlets under control. I’ve had the mri now so the consultant knows how much worse I’ve got. Mine is bulging discs I’m having fusion surgery I’ve also got arthritis in my back.
That’s another thing I’ve got hospital to have a tooth out at some stage as my dentist can’t take it out… It’s so stupid a year ago I had a tooth out no problem now I’ve been diagnosed i can’t have it done as I’m too high risk it has to be at the hospital so far I’ve been waiting 6.months 3 lots of antibiotics I’ve had while waiting. My mum is very supportive and is fully aware that she can’t possibly understand how I feel but tries really hard. Any information I have she has as she wants to help me as much as she can. She’ll be here to help look after me after my back op aswell. I’m hoping to Aww her soon now we’ve both had our vaccinations. Thank you for your words they mean alot. I think I’m way overdue for a bubble bath I’ve been showering alot more after my lletz biopsy in December… I hope you’re keeping safe and looking after yourself too… I will keep posting in pleased I finally found some courage to post on here… I kept looking and not doing anything…
@Ells, yes, it must have taken you a lot of courage for you to post on here.
Since my diagnosis I do not deal with what stresses me well, like appointment making, it is all to much and yes, I dissolve into tears, also anything anything to do with people’s health problems sets me off. Yes, it does feel like one thing after another at times.
My mother died of a brain haemorrhage, as did her mother, so I was relieved to exceed the age they died.
My dentist at the time would not touch my teeth extractions so I was referred to a specialist dentist. He worked with my GP and consultant and I was given antibiotics before, during and after and I really felt well cared for so I have stayed with him.
It sounds as if your partner and mother are trying so hard, we don’t get handbooks to help us out, in hindsight I would say just keep talking honestly about how you are both thinking and feeling.
I really enjoy my daily walk in all weathers, there is always something to see, I am rather nosey.
I spent the rest of the morning diverting from one job to another to avoid doing a certain job.
Spoil yourselves with your partner and take so much care, stay safe and keep posting.
@Erica it did I’m not one for talking about my feelings I find it very hard to open up. I’m like you and not dealing with stresses very well at all. Omg how upsetting for you to have that worry and the relief you felt. My dentist was worried I would bleed out my consultant was worried I would clot so between them I’ve been referred to my hospital they have a specialist dentist there I’m just waiting for the first appointment which is next month… The dentist I’m with has been lovely it took me some time to find this one as I have a fear of them so an totally terrified of having to go to the hospital to see someone else…
They are trying hard I’ve said to my partner today I can’t tell you how I feel if I don’t know myself how I’m feeling… He’s been so worried about me today its been a constant flow of tears… He’s not one for opening up to me he has people he talks to. I think he doesn’t want to worry me he knows I’ve got enough on my plate. But I do worry about him aswell it must be hard for him having to live with me lol. The majority of the time I’m fine I laugh it off I joke about my back and work through the pain I’m in today just isn’t a good day and it’s seems with every bad day I have it gets worse tomorrow no doubt ill wake up and be totally fine again…
I really enjoy my walks too I’ve taken just lately to pushing myself just that but harder to go sit in the graveyard to look at the flowers there some beautiful colours. I’m the same with fliting between jobs partly to avoid ones and partly due to forgetting what I was doing in the first place. We have been spending more time together well we were until my partners son had an unexpected extended stay with us as his mum got a positive covid test while he was here with us so we’ve been looking after him while she recovers… He’s very hard work as he’s autistic and had adhd. He’s a lovely lad wouldn’t change him for the world but hard work none the less. Weve not had much time together for the last 2 weeks… But we’ll have more time when he goes home again on Wednesday… All of our routines have gone out of the window lmao not that I really have one. I have a list of things I’d like to do around the house I will get it done I just need more hours in the day to give me a fighting chance haha…
I’m looking forward to a good spoiling I can see a movie night coming up
Hi @Ells. I’m so glad you posted. It’s not easy taking that first step but this is such a supportive place to be and I can see already that @Erica has shared her experiences with you. It’s just a roller coaster of emotions isn’t it. Four years on and I still struggle to accept my follicular lymphoma at times. Just try not to be so hard on yourself. Take each day a day at a time get support when you need it and just look after yourself. It’s so early on in your diagnosis and I these challenging times it’s a lot to deal with. Definitely spoil yourself tonight. If the tears need to come just let them flow. What movie is on the cards tonight?
Hi @Nichola75 thank you. It is very much a roller coaster. I thought that people were just meant to read about it understand it and accept but clearly not. I clearly am being hard on myself and thinking that I should of accepted this by now. And I need to take a different approach to it all… It’s definitely challenging times on the last lockdown announcement I knew it was coming but when Boris announced it I was in floods of tears… How stupid I’ve not been out of the house only for my walks and to have my blood taken since all of this started so what difference does it make really…
I will do… I’m not sure we have alot of them I think a comedy might be a good idea…
@Erica @Nichola75 @Alice_BloodCancerUK after my massive downer Monday I slept all day Tuesday much to my surprise and have slept alot this week… I’m feeling alot better now and would like to thank you all for your support… I am going to look at things differently from now on and have spoken to my partner and mum regarding the support and advice you have given me so hopefully we can all get through it better…
That is good news @Ells, they say sleep is a great healer when your body needs it.
You also seem to have done some positive reflection on the way forward.
Please do let us know how you and your family get on. Take care and stay safe.
Hi @Ells . I’m glad you are feeling better. Just don’t put any pressure on yourself to feel a certain way. You take care x
They sure do i was clearly more tired than I thought.
Yes I’m back to trying to be more positive about things and much happier about life again despite the pain…
Of course I will do. You take care and stay safe too
@Nichola75 I won’t do. I will try not to let what is going on around me affect me like it does…
Im not sure I’ll ever get used to this but I’ll keep doing what I’m told to, to keep myself safe and well.
You take care too xx
hi @Ells and welcome to the forum. It’s great to see you here. You came to the right place as we’ve all had a mass of emotions, especially during the last year when we’ve had to contend with Covid as well as our illnesses. It’s only natural for you to feel this way. I hope that you have people around you to help support you and as others have said the support line at the lovely Blood Cancer UK are always amazing as well as the people on these forums.
I was diagnosed with ET Jak 2 about 20 months ago. I had been unwell for a while but my GP failed to diagnose or refer me to a consultant!
I spent 3 weeks in hospital with multiple clots in my kidneys, spleen , liver and aorta. I take hydroxycarbonide and riveroxaban. My platelets are now 350!
I am grateful for all the care I have received- my consultant is wonderful and my specialist nurses I can contact at any time- they are helpful and supportive.
I live a normal life as possible and find pilates helps I am grateful this cancer is manageable which is a huge bonus! I feel lucky and happy good times are ahead! I suggest you talk more with your consultant or specialist nurses who are there to help- you are not alone!! Enjoy some exercise and live life to the full. Good luck!
Hi @Calabria and welcome to the forum. Sounds like you had a rough ride before you finally got diagnosed! It’s great that you now have such a supportive medical team around you, I know some people aren’t as lucky. It makes the whole journey a lot easier doesn’t it. I love your positive attitude, and yes, I’m sure we are all looking forward to a brighter 2021!
Hi @Franko thank you… It’s coping with these emotions when they just appear from nowhere is the issue. My poor partner doesn’t know what to do with me. He thinks he done something wrong and I can’t explain it to him as I just dont have the answer… I’ve had more of a chat to him now telling him what been said on here so he’s got an idea… It might be easier in him next time I just have an off day… It was very helpful to me knowing other feel the same way. I know I’ve got some where to turn and people who understand…
Hi @Calabria my gp doesn’t really.understand anything about it so when I asked about sheilding he went straight to the haematologist to find out… How great your platlets are down that low mine are now down to 419 its the lowest mine have been I’m 7 years possibly longer who know quite funny really who knows how long I’ve been like this
. It’s amazing it can go undetected for so long then bam everyone is panicking over you, and you think we’ll you just don’t what to think… I just think the care I get is fantastic you’re right about that but the fuss sometimes I feel like say this time last year when you didn’t know you would have done this no problem and I would of been fine but now you won’t omg…
I don’t have a specialist nurse I’ve only ever seen/spoken the haemotolgist… Exercise I’m trying to but back issue prevent that however I am trying my hardest to not let any of my health problems get in the way too much… Thank you xx.
Hi Ells, i do appreciate the position you are in, and you are getting some really good and genuine advice from other members. You seem to have an awful lot on your plate at the same time, and given that, I can understand your need for some help. I can only speak from personal experience, but once you have had time to get over the shock of your diagnosis, and all that it implies, and accepot it, you will begin to see things more clearly, and your mind will start to calm down a bit. Another thing I have found is, that it does not take much for things to overcome one, hence the emotional episodes regarding your Dental appointment. That is perfectly natural Ells, most of us have had them at one time or another, so please don’t get too depressed on that issue. Being in touch with with fellow sufferers helps an lot, so please, keep talking. Finally I would say, be aware of what is happening to you, and why, accept the professional advice you are getting, then live for the day. There is an awful lot of good things happening around you, enjoy them. You are not alone, all the very best. Ron