ET - Feeling tired, isolated, abandoned, invalidated, and like there's no end in sight

Hi people,
Sorry if this is a bit depressing & long. I normally just get on with things and patiently find the good but am struggling lately. I have ET (diagnosed 18 yrs ago, Watch & Wait), I have a lot of fatigue, headaches, dizziness, vertigo, bone pain, insomnia, all sorts, none of which GPs ever seem to realise are common with ET. Most argue with me and tell me ET isn’t a blood cancer, or I have no COVID risks or I’m mistaken to think there are any symptoms. Because I also have health anxiety, I’ve even had doctors tut and huff and say “Do you actually have a diagnosis?” (they hadn’t transferred my medical records properly). Needless to say, such attitudes don’t help my health anxiety!

I went against their advice not to shield (& am very glad I did now!), I had to fight tooth & nail to get my third dose, with one GP reducing me to tears over a 40 minute phone call, likening my ET to “any other chronic condition”. When I tried to offer research from BCUK and elsewhere, she refused to look because she “can’t be expected to research everyone’s conditions.” I got it sorted in the end (different GP) and got the 4th dose/booster no problem but it all feels so exhausting and so invalidating. I realise ET “isn’t as bad” as a lot of other blood cancers (and I’m hardly new to it) but I’m made to feel practically as though ET isn’t real, especially since I’m Watch & Wait!

I am a totally single, unsupported parent of a child with autism, which is another reason for me to stay well. My ‘light at the end of the tunnel’ has been these anti-virals being introduced, which I felt would let me do things like go to the dentist with some confidence that if I got ill I would most likely be okay - only now I’ve found out I don’t qualify. This is great news in that it means I’m not as vulnerable as some other people, but I also feel sideswiped, abandoned and MORE vulnerable since now there’s nothing to fall back on and it sounds like vaccine immunity wears off relatively quickly. I know there’s the PANORAMIC trial but that doesn’t feel like something I can rely on.

So I’m going to keep shielding and hoping the anti-viral scheme is expanded to include people with ET who are not on CAR-T or SACT. Which is okay most of the time - I write, read, disco dance for fitness, and try to use the whole thing to get better at living in the now, appreciating what I have around me and finding joy in small things and home. I’m well set-up with deliveries etc and am reeeally lucky in so many ways. Just after 18 yrs of ET and 2 yrs of pandemic, I sometimes feel so utterly exhausted by it all. I end up in tears just trying to wash up.

Sorry for the moan. I realise the pandemic has been hard for most and awful for many. I don’t think my woes are any more than anyone else’s, and I’m sorry to complain about ET. I’ve often been told “if you’re gonna get blood cancer, ET’s the one to get.” It just really feels lonely & alienating from time to time. “ET” often feels about right.

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Hi @Chapsticks I am so glad you felt that you could tell us how it is for you so honestly.
I certainly did not feel you were moaning, although we are all entitled to a good moan too.
You are never alone and isolated with your forum family on here.
18 yrs on watch and wait, I have been on watch and wait for 18 yrs too with Chronic lymphocytic leukaemia (CLL).
Then we have basically been shielding for 2 yrs, which is so, so isolating and lonely, especially when I feel the world is getting back to 'normal with the restrictions easing.
I can still replay the day of my diagnosis as if it were yesterday and I get anxious before and during all medical appointments.
I am glad that you managed to get your 4th vaccine/booster, I find everything is such a battle,
You say that you are struggling lately and that you also have health anxiety. It must be tough for you with all those symptoms and I find that fatigue make things all the tougher and for me everything gets all too much and yes, the tears come from nowhere…
It sounds as if you know yourself well and have some coping skills.
I found that counselling helped me, my GP helped me find local services and I believe Macmillan Cancer Care do offer it sometimes.
Perhaps it might help you to talk to someone on the Blood Cancer UK support line, when it is open tomorrow, to explore what you could do now and should do in case you were unlucky enough to get Covid. I always like to have a plan.
How old is your child and what are they getting up to, autism cannot be easy for both of you?
I have also heard it said of my Chronic lymphocytic leukaemia (CLL) the same ‘if you are going to get a blood cancer Chronic lymphocytic leukaemia (CLL) is the one to get,’ grrrrhh is all I shall say.
Thanks so much for posting and please keep posting and letting us know how you really are and be kind to yourselves.

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Thanks @Erica , I really, really appreciate your kindness and your understanding. It sounds like we’re in pretty similar boats, both 18 years, both shielding, both with the best cancer around apparently! It really can feel like a battle can’t it, I totally agree, and yes the fatigue just makes that so much tougher, it’s probably no surprise we dissolve in tears from it all at times. I think the fatigue is one of the very worst aspects, it can feel so very endless.

I get anxious in medical appointments too (embarrassingly anxiety makes me cry too, I even cried as soon as I sat down for my 4th jab! They were lovely about it though). I think the thing about everyone else getting back to ‘normal’, and hearing that from end of March people won’t even have to isolate if they test positive, has really got to me too. Especially at the same time as finding out I don’t qualify for the anti-virals – I’ve ended up feeling a bit hopeless and alone, like it’ll just be me left here - which I know is ridiculous. I will pick myself up again and regroup. I have a headache tonight and my insomnia’s been worse lately, neither of which helps. I have zoom appointments with a counsellor every week, which does help!

Generally I do very well, I have lots of coping skills & in my life am usually the person helping others! I think it can sometimes be easy not to reach out in that case though, not wanting to bother anyone when I know I’ll gather myself back up again. But that can feel pretty lonely too, since I can end up feeling a bit invisible. So I’m very grateful for this forum and for your reply!! That’s a good idea about exploring on the support line what I could/should do if I did get Covid.

Autism can be hard for sure. My son’s just turned 17, which makes things quite a bit easier. Luckily he was already home ed (school & he were sadly a very bad match) but he does lots of courses and keeps in touch with people online, which actually works out well for him since he can relate better without the intensity of face-to-face eye contact, body language, facial input etc - which has been great for his social skills (which had been very poor because of bullying at school)! Luckily we get on really well too, or I’m not sure how we’d both have managed!

Anyway, I just wanted to thank you so much for your reply - it really does help so very much knowing others are going through the same sorts of things and I’m not alone. I’m really grateful!

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Hi @Chapsticks I think lack of sleep really plays with my mind, body, thoughts and emotions and distorts me.
Yes, isolation is relentless and lonely and I am so glad that you have lots of coping skills and counselling.
I was brought up to be the strong carer of others, but I have found that it is actually a strength to ask for help and show my vulnerability sometimes, although I wish I could control when I burst into tears, but it often seems to bring out the best in others.
The one good thing about Covid is that it has opened up so many online opportunities and new ways of communicating with others and learning on line and I am glad that your son has really taken to it.
I am also so, so grateful for our forum and the support line. Please let us know how you get on if you ring them.
I expect one of your coping skill is to try and keep it in the the day, I am definitely trying to.
You are not invisible on here, please keep posting, we will all get through these times together.

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Hi @Erica - yes so many online opportunities, I’ve often thought we’re very lucky this happened now and not twenty years ago - it’s been an absolute lifeline for everything from communication & community to education, entertainment, food, work and more.

Anxiety-wise, creative writing gives me something that involves my whole brain and is both enjoyable and has a clearly defined end-product to work towards, which encourages the feeling that there’s still progress and movement in my life. And I’ve various management techniques for particular situations (such as going for vaccines!) plus all sorts of ideas and methods of not just coping with long-term shielding but trying to use it to the good. But as you say, sometimes things can also clamber on top of me, especially if there’s some sort of trigger - in this case I think it’s finding out I don’t qualify for the anti-virals, which has been a bit of a beacon in my head for a while and now feels dashed.

You sound like you also have lots of coping strategies in place for both anxiety and for things like the fatigue, I’m glad you do. I hope you’re doing well with all of this, I’ve noticed how much dedication and care you have when it comes to offering much-needed support to people on here and I hope you have time for yourself too!! Yes, we’ll all get through together eventually! Thanks again.

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I think the years have passed more quickly than you think :grinning:
20 years ago I was definitely ordering groceries online from sainsburys, as that was after I moved here to Cornwall,
and before that, I was working from home, as I had online connections to work, in fact, I was working from home, online, from around 1990, which is when I am sure I also had my first personal compuserve e-mail account - we were numbers, not names then.
and compuserve also had online chat forums

1989 we were using vaxnotes, which was similar discussion format to this, the guy who developed it left Digital , where I worked, and went to Lotus, where it morphed into lotus notes.

in 1996 my mobile phone could do e-mail, excel and word, and browse the internet - Good old Nokia communicator, I was working for Nokia at that time.

Which even more annoying, when in this day and age, I currently have no mobile phone signal where I live - the technology should have been rolled out by now. :unamused:

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@heatherthomas - sure, I was lumping all the activities in together and including the quality of internet connection and the range of things available online. In 1997 I still had an AOL 54K dial-up modem so slow you could make yourself a cup of tea every time you wanted to load a page! I used to wonder how on earth people talked about “surfing” the web at that time, mine was more like paddling!! Anyway certainly 20 yrs ago Netflix and a lot of other streaming platforms were a long way from launching, no Zoom, no Skype, and education possibilities were far less comprehensive than they are now. Amazon & Ebay both pretty new too. My point was really that the internet has been a real lifeline for me & my son during shielding and that 20 years ago the digital world was not nearly so well developed. I reeeeally appreciate the fact I can watch more or less anything I want, read books on Kindle without cluttering up my house with yet more books, arrange things, speak to my friends face-to-face, order a wide range of foods, etc etc. It makes shielding feel much less difficult than I think it would otherwise :slight_smile:

I worked for a phone company too lol, phones4u - that was probably 1998-1999. Even by then only the most expensive phones we sold could connect to the internet and most of those were still very basic in terms of what could be accessed. Definitely nothing like today!

Ah yes, I’ve lived in lots of places with no mobile signal - very annoying! - hope you’ve managed to find/set up a workable alternative or if not that you get connected before too long!

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I’m a book person, and definitely bought books from amazon online on the late 90’s, and I think it was around 2002 they started everything else
The rainbow pc monitor could be used as a dumb terminal too, so was faster.

I don’t do netflix, or skype, or kindle, and I’ve only done 2 zooms, which were a bit disastrous, as most of the others couldn’t get it to work.

With the mobile phone, I worked for Nokia, so being able to use the communicator, meant I only had to carry that around, on and off planes, rather than a pc, so was really really good, and I never noticed the lack of facilities to access.

I now have superfast broadband, so use my laptop, a big monitor, a proper keyboard, a mouse, and a great printer, it’s just rather annoying, that most things to do with covid, want to text a code to your mobile, and don’t use e-mail instead - so I’m on 119 a lot, as they are the only ones who can override the requirement for a mobile phone signal - but it just takes forever.
I am convinced that’s why I don’t get the automated stuff too, like texts for covid jabs, and the rapid PCR etc etc.

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Hi @Chapsticks, we’re so sorry to hear you are going through a tough and challenging time. We can only imagine what you must be feeling and going through with your own health and and being a single parent of a autistic child. You have done the right thing in reaching out to an amazing community here who have given you so much advice and support here and will continue to do so. Our supportive service team are also here if you would like to speak to someone over the phone. Are you getting any other support from other services for you and your autistic child?

With regards to antiviral treatment, the criteria has been amended to include people

  • have any type of blood cancer (including chronic blood cancers, MPN and MDS) and have had cancer treatment within the last 12 months (aspirin is not a cancer treatment) - except people with CML who are in the chronic phase and in molecular response, or who are on first or second line TKI treatment. So you may be eligible. You can find out more about the antiviral treatment on our webpages here: Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK.

We also have some information on ways to manage fatigue which you may find useful here: [Blood cancer and fatigue | Blood Cancer UK](https://bloodcancer.org.uk/support-for-you/living-well/fatigue/.

Please don’t hesitate to contact our support line if we can be of any other support.

Best Wishes
Bav

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Hi @Bav.BloodCancerUK - thanks so much for your reply, it’s much appreciated. I haven’t had cancer treatment so definitely don’t qualify for the anti-virals and am just hoping the scheme will be expanded at some point to cover W&W MPNs. Of course it’s great to know I’m not as vulnerable as those who have been given access to them, I’d just assumed as the anti-virals drew ever nearer that they would be accessible to everyone with blood cancer, and I had rested something on that without noticing - so learning I won’t have access has left me feeling more vulnerable than I did before, not less, since I now know I won’t have that back-up.

Added to the news that from March 24th people will be able to mingle freely even if they’ve tested positive, and I had a pretty low weekend! I feel like every time I build to an end-in-sight, it seems somehow to get pulled away. Which is perhaps a reminder to keep coming back to what I have but I’m sure absolutely everyone everywhere appreciates that can be hard at times!!

That said, I’m generally pretty good at coping - I have lots of physical, mental & emotional management strategies, enjoy being at home and have lots to do. Plus I get on really well with my son, which is a huge boon for both of us!

You’re right though that it brings its own set of challenges managing health while being a single parent of a person with autism, it can sometimes be quite a complex balance to navigate! Autism support tends to focus on things we don’t really need such as educational interventions and carer breaks so we go without support. My bigger concerns with his autism are to do with things like what would happen to him (a) if I had to go into hospital or (b) if anything more final happened to me, since people generally struggle to understand his needs and presentation (which to me seem so simple, but he’s my son!). But I have friends who are aware of the situation and I know they would do everything they could to help, which seems about as good as it could be :slight_smile:

Anyway, just wanted to thank you for your reply!!

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Hi @Chapsticks, you have a lot of different things to deal with and you sound as if you have done so well to develop different
ways to support yourself. My husband also has ET but it is me who has been very anxious about him since the start of the pandemic. For you it must be particularly hard dealing with both ET and anxiety. As @Erica put it it is insensitive of people to imply that someone else had a cancer that’s ’ the one to get’. It must have been so frustrating to be given the news about the antivirals, I do hope they change the criteria as surely everyone with blood cancer should be able to access these treatments if they need to. Also you are a carer for your son which brings extra worry. It is
great that you have a good relationship with him, I bet you are a wonderful mum. It’s also good that you have close friends who are supportive. Take care of yourself.

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Hi
Well I think you’ve made some very valid points with which I am E T sufferer can certainly identify.
I am sorry to hear you are feeling so low but can I just thank you for helping me feel less alone with my symptoms.
Last week as the result of an injury I had a visit to the local GP surgery who I really can not fault.Sadly my usual GP has at last taken some long over due leave.so I had an appt. with the locum GP .
She examined my injury and suggested Physio. all fine then I asked can you tell me about the 4 th booster for Covid given my Blood Cancer? Yes she countered but is ET a blood cancer? No she didn’t know about 4th booster. She would contact my consultant haematologist, I can’t say O have any faith in him.I take it she got through as when I left gales of laughter from the GP!
Later a call from the surgery to say my condition ET should not deter me from daily activities and no mention of 4th. Jab.
I give up and just hope someone somewhere knows what’s happening and what ET patients actually go through.
Stay strong and safe. :crossed_fingers:L

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Oh @Lelly I am so so sorry that you are still bashing your head against a brick wall.
You are not the only one look after yourself.
I will copy this to @BloodCancerUK for you
.

Hi @Kirsteen, what a lovely message - thank you so much and yes I really hope they change the criteria too. Just knowing it was there as a back-up would be such a huge comfort whenever I do have to leave the house for appointments etc. Fingers crossed!!
I can totally understand your anxiety for your husband, it’s so difficult thinking about what might happen to the ones we love, and it’s already been such a very long challenge and holding anxiety for that long can be exhausting! You sound like someone who cares very deeply, I hope you’re finding ways to take care of yourself within that too!!

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Hi @Lelly - Thank you so much for your reply, it really is good to feel less alone!! I’m so sorry you’ve experienced these things too! At times I feel like ET must be one of the most invalidating conditions a person can have: a blood cancer that no one seems to know or believe is a blood cancer. I’ve literally had only one GP so far who knew it was a blood cancer (and that was only because he’d recently been to a haematology conference, at the end of which they’d said “Don’t forget the MPNs are blood cancers”). EVERY SINGLE OTHER GP I’ve had has told me it’s not a blood cancer. Cue me telling them all about the arguments over the decades and the genetic research that eventually proved it was, leading to the WHO classifying it as a blood cancer in 2008 & everyone else in 2009 and blah blah, and eventually they look it up (usually with tuts and huffs as if they think I’m completely wasting their time). It feels humiliating, and far more exhausting & upsetting than it would be if they just blimmin knew!!

I reeeeally related to your 3rd dose story too - mine resulted in me lodging an official NHS complaint about my surgery. My usual GP isn’t great either but like you I spoke to one who wasn’t usually there, who just wouldn’t have it, even though I was citing vaccine efficacy studies, explaining exactly why it was on the list for 3rd dose, and offering to send all evidence plus the joint statement from the British Society of Haematologists and Blood Cancer UK saying we should have the 3rd dose. In the end, after 40 mins, she refused to talk to me and ended the phone call (though I managed to get her to agree to get one of the Senior GPs to call me the following day). When the other GP rang back (also not my usual GP), he actually ASKED to see the evidence!!! I couldn’t believe it, I was so happy!! So I sent it and within an hour of that phone call I had my 3rd dose booked - it was such a relief. I expected it all over again for the booster but they were helpfulness itself. For now I’m going to stick like glue to the GP who has at least shown a willingness to look at the evidence.

It shouldn’t be this hard though, it’s upsetting having to go through this with health professional after health professional, especially when it’s something like this where literally our survival could depend upon it. I find it really scary that my health is in the hands of people who almost don’t seem to think I have anything!

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Oh @Chapsticks as you say it really is upsetting and such a stressful, time consuming battle when we have conditions that we are living and dealing with and often one of the main side effects is fatigue.
Blood Cancer UK has be informing and campaigning about the awareness of all blood cancers for years now but the problem is the majority of the medical profession might not come across a case of the rarer blood cancers during their careers.
That is why Blood Cancer UK changed their name to reflect it’s commitment to all blood cancers.
You show the psychological effect it can have on a patient so clearly, thank you.

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Hi @Chapsticks

I’ve just read your post and a lot of it resonates with me: the ‘good cancer’ thing, being worried about seeking medical help (when you feel like your conditions are often dismissed it makes you avoid speaking to someone for fear of disappointment/conflict), being on watch and wait, struggling to get records sorted and home educating. It’s particularly difficult though when you are having to shoulder all this as a lone parent and also supporting a child with autism. I’m glad that you have managed to get a better doctor and have also been able to get the jabs, but it doesn’t stop it from being mentally exhausting! I have found that the patient support line/email at BCUK has been a real help for me when I’ve not had anyone else to discuss my issues with and I know that I won’t be dismissed. I’d really recommend speaking to them as it sounds like you could do with a chat with someone. Take care x

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Hi @Lelly, there is a document on the blood cancer website entitled, ‘For the attention of GP practices and hospitals: Third vaccine doses for blood cancer patients’. This letter states that all patients with blood cancer including ET should be offered a third dose. If you get in touch with the blood cancer team they can send you a link for the letter so you have it to show your GP. Although it’s your 4th dose that you haven’t been given, it sounds as if your GP or vaccination centre didn’t record your third dose correctly as a third primary dose in the first place .So I just wandered if this document would help you to be able to access the fourth dose. There is also a similar document on the MPN voice website entitled, 'Third vaccine dose for patients with Myeloproliferative Neoplasms which also mentions ET. I hope @BloodCancerUK are able to help you with this.

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Hi @Chapsticks , it has been such a challenging couple of years for all of us. My husband also has prostate cancer and had radiotherapy for this in September as well as having ET. Like yourself I have be finding my own ways of coping with my anxiety. I do a lot of walking and also do fitness classes such as Zumba online. I have also done some group activities on zoom and keep in touch with close friends by phone. As you said this forum is also a good way to connect with a group of supportive people who understand.

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Hi @Kirsteen as you might know I am a walking and Zumba girl too.
Now I do a Pilates DVD every day instead of my Zumba.
I have always had trouble with meditation so I am now trying 10 mins of stretch exercises which I usually do some form of after my pilates DVD’s.
I want to de-stress at the end of my day.
It actually stops me being on the laptop too much in the evening too.
Enjoy your exercise.

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