Some advice on experiences please

[AL7]

Hi folks, hope you’re all well and having a good week. I’ve been reading bits and pieces on the Blood cancer UK website for a little while and to try to get my head around things. As far as I can work out, I was actually diagnosed with Essential thrombocythemia (ET) years ago (high platelets was picked up on a routine blood test and I was transferred to the haemo department who’ve been monitoring me ever since), but I was basically just told I had high platelets and needed to take aspirin every day for it and I assumed it was just a quirk related to me. The first time I clocked that I had a cancer was in a letter summarising a telephone appointment with a different haemo than I usually speak to, that referenced b cancer symptoms - pretty poor way of finding out that I have a form of cancer right?! Anyhoo, I’ve been being monitored every 3-6 months for years now and the appointments almost feel pointless - it’s been a while since I saw the haemo in person, my last call lasted under 2 minutes and I feel so abandoned by them and like I don’t really have anyone to ask about what is normal, what to expect - along with feeling like a bit of a fraud because, as it’s been described by my GP “it’s a cancer but not a cancer”. I guess I also find it sort of funny that I’m 40 and I’ve done the Race for Life every year since 1996 (not done one this year yet but I’m pretty tired at the moment so not sure if I will), to then find out that I’ve had this condition for maybe over 20 years!

Bit of an offload there!

Does anyone have any guidance or thoughts they could share on what I should really be expecting, or looking out for or doing?? I try to stay active (walking when I can, netball twice a week and a bit of zumba if I can), eat relatively well and all that jazz but the advice I got from my doctor was “if you have a catastrophic bleed, go to hospital” which is just ridiculous, and I feel like I should be looking out for more!

Really appreciate any thoughts or suggestions, I just feel a bit lost and given how many people in my life have been impacted by cancers, a bit reluctant to talk about it with a lot of people in my life. Thanks ever so much and hope you all have a good rest of the day.

[Nichola75]

Hi @AL7 and a big welcome to the forum.
I can only imagine how you must have felt when you found out. It must have been really horrible and you’re mind must have been in a spin.
I can imagine you have so many questions after this. The first thing I would suggest is writing all your questions down. The support line will be able to talk this through with you and I have also copied in the @BloodCancerUK_Nurses as well who I know will respond to your post.
Are your medical team aware of the way you found out? I think you have every right to ask for a face to face appointment so you can talk things through and ask the questions you have.
It can be really difficult to have those conversations with family but I hope once you do that it helps to share things with them. For now though, this is a place where you can say how it really is for you. We all understand and it’s a safe place where you feel less alone.
Please take good care of yourself and keep us updated on how you are doing. The link to the support line is below.

[Nichola75]

Blood cancer information and support by phone and email | Blood Cancer UK.

[AL7]

Thanks ever so much, it really means a lot to me to have this response so quickly, thank you. I think I’m struggling with knowing that because I’ve been in the system for so long, they assume I know what it is all about without really having any of it explained to me - it was made out to be something so minor that it just didn’t even cross my mind to ask any questions because they seemed so relaxed about it. Which I suppose was good in one way because at least I’ve missed out on some worrying, it’s dropped like a ton of bricks now though, and wasn’t even my haemo who explained about it being cancer, it was my GP! It seemed like they couldn’t understand what the problem was because I didn’t have b symptoms, not getting that it was the first time the word cancer had been used in updating me.

I’m not sure where to start with on questions, so thank you for sharing the links - my haemo mostly just asks how I am, rattles through some numbers and then we wrap the call up. I’m sure she must be under so much pressure and workload but I do feel a bit lost. Sounds like getting in touch with the support line is a good place to start with what I should and shouldn’t be doing to take care of myself.

I wonder about telling my work and whether that’s something I should be doing too?

Thanks so much again and take care.

[Nichola75]

Hi again.
I think it’s really useful to tell work. They have a duty of care to you and although you may not have any physical symptoms it can have an effect on your emotional wellbeing. I didn’t tell everybody initially, just my managers. Further down the line I have shared with others but all of that is a personal decision.
Definitely give the helpline a a call. They are great and will be able to support you in thinking about the next steps.
You’re right, not knowing has meant you have had some time not worrying but as you said, now it has hit you hard. Just hearing that ‘C ‘ word is so tough, I remember it like yesterday!
It’s good that you are not experiencing any B symptoms
I think the unknown is scary so it’s really important you get to ask those questions.However, try to google too much (I know that’s hard) Use this site and other reputable ones.
There are lots of forum members with Essential thrombocythemia (Essential thrombocythemia (ET)) who I know will be able to offer lots of support and share experiences.
Take good care of yourself and be kind to yourself. It’s a lot to process.

[Erica]

Hi @AL7 I am so glad that you have found us and @Nichola75 has given you a great response.
I was diagnosed with another blood cancer 20 yrs ago and my experience was that the words blood cancer were not used until quite a few years later. I was also not given access to a specialist nurse who I could contact with any questions I might have.
I have also found that telephone appointments can just be factual on the side of the consultant, if I have not build a relationship with them.
My trick now is to be ‘pleasantly assertive’ and at the beginning of the call tell them that I have some questions to ask and I also to ask for clarification if I do not understand something.
I am also having regular blood tests which is usually called either ‘watch and wait’ or ‘active monitoring’. It is to see if there are any trends or anomalies in the results.
I feel a very lucky girl and long may it continue.
I am now 74 yrs old and the fittest that I have ever been in my life, I am a Pilates girl and a great walker.
Yes, I do manage my fatigue and I have learnt to do that over the years.
I would say keep doing what you are doing and have fun.
@Nichola75 has given you the Blood Cancer UK support line details and I have also found our forum to be a safe place to say how it really is for me.
It is personal choice if/when you tell family, friends and work, you know your situation best.
Be very kind to yourself and please do keep posting

[Duncan]

Hello there @AL7, welcome to the forum! I’m really glad you found it and have been reading around. Aren’t there a lot of really lovely people on here?! I see you’ve been offered lovely advice already by @Erica and @Nichola75.

You’re not alone in your diagnosis and you’re not alone in having poor communication from a doctor, but I’m really sorry you’ve been living with this blood cancer and not been guided through what to expect. I had a similarly dismissive haematologist, and for me it felt like a waste of my time. Thankfully I was able to change doctor and now have a really thorough, friendly and caring haematologist. Seeing him in half an hour actually!

Although I was diagnosed last year with Polycythaemia vera (PV), a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET), I survived a heart attack caused by a blood clot many years ago. At no point was there any mention of testing for its cause and off I went taking daily aspirin and blood pressure medicine for many years. Since I got diagnosed with Polycythaemia vera (PV) after a blood test caught a JAK2 gene mutation, I’ve been able to focus on ways to live with the risks of experiencing another “catastrophic bleed” as your doctor called it. I take a cytoreductive chemotherapy pill daily called hydroxyurea which disrupts the gene mutation that causes my body to overproduce blood. I also had monthly phlebotomy to reduce the quantity of blood my body contained but now my blood cells are back in their normal ranges and I only need the hydroxyurea to maintain that.

Essential thrombocythemia (ET), like Polycythaemia vera (PV), is a chronic form of blood cancer, and has been considered a blood cancer for many years. Your doctors may want to catch up with the global consensus that MPNs like ours are indeed cancers. However, being chronic means it’s a slowly developing type and the good news is current research shows we can live into normal old age with these blood disorders and are likely to die of something unrelated. Good news right?

I’d say you’ve been given incorrect information by doctors about what is a risky blood cancer and that it’s within your rights to seek better care. You can always ask for second opinions, and in fact maybe you could ask PALS to assist: What is PALS (Patient Advice and Liaison Service)? - NHS

Perhaps you’ve read all you’d ever want to read about Essential thrombocythemia (ET) but the Blood Cancer UK information is researched thoroughly and really helpful: Essential thrombocythaemia | Blood Cancer UK

And perhaps you’d like to read more about our family of blood cancers, MPNs: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Being young and active is really in your favour as some of the best ways to reduce side effects of our MPNs is to get daylight every day (to regulate our circadian rhythms and thus sleep) and exercise in whichever way that energises you. Yoga, Pilates, tai chi and other stretchy types of exercise can benefit energy levels when our blood cancers and medication cause fatigue. I love to hike and do yoga multiple times per week. Our dear forum guide @Erica is a keen Pilates person. Eating healthily is good for us too, and I find foods that are easier to digest make me feel better than big heavy meals. Some people prefer smaller more frequent meals to decrease food coma feeling.

Please keep us posted about how you get on! Keep looking around the forum for others with Essential thrombocythemia (ET) and MPNs and you’ll find it can be tolerable.

[Heidi_BloodCancerUK]

Hello @AL7
Welcome to the Forum - this is exactly the place to offload, I am pleased you found us.
I am so sorry you weren’t told your Essential thrombocythemia (ET) diagnosis was a blood cancer, and having recently found out, this is causing confusion and upset. It is quite understandable that you are feeling lost, I think any of us would feel the same in your situation.
I’m sorry you are ‘short-changed’ with your Haematology team, giving you only 2 mins of their time. I appreciate that all staff in the NHS are busy but you deserve more than 2 mins, and feel able to ask questions and have more support.
Sometimes it’s hard to know what questions to ask though, as “You don’t know, what you don’t know”. If no-one has ever taken the time to go through your diagnosis properly or told you what to expect or report back, you wouldn’t know what to ask or mention to the Haematologist.

Please do call the support line tomorrow if you feel you want to discuss your Essential thrombocythemia (ET), your appointments, your team, lifestyle considerations (although it sounds like you’re doing all the right things) or anything else.
Our line is free and confidential, and open from 10am - 4pm: the number is 0808 2080 888.
We’d be more than happy to chat with you (for longer than two minutes ) Have a good evening. Heidi.

[Iain]

Hi @AL7
As a retired health and safety officer within Local Government I feel I should advise with regard to informing employees re your health and you/their work.

Under the Welfare Act etc Cancer is a disability. As such the employer must make appropriate risk assessment of you and your work tasks, as may be affected by your condition. They should make reasonable adaption to your tasks and duties.

Basically they owe you an additional duty of care but------If they don’t know they can’t respond and comply. In fact silence hands them a defence if something were to happen eg. “Your honour, I didn’t know he suffered from such bouts of fatigue and imbalance”. “If I knew I would have given him other duties”.

Obviously the choice to inform is yours, your relationship with your employer and colleagues may influence your decision.

If concerned I’m sure BCUK, Macmillan and alike can advise.

Hope all goes well,
Iain

[AL7]

Wow, thanks ever so much everyone, I feel incredibly lucky to have had such kind and helpful support straight away, I really appreciate you taking the time to respond to me so helpfully, and I really appreciate all of your advice. I wish I’d messaged on here sooner!

I didn’t realise that there was a possibility of changing doctor and I’ve put that on my list for when I call the helpline, along with a few others that your comments have prompted for me about how I’m feeling and best ways to manage it.

Thank you for the thoughts on telling my employer too, I think the thing that’s put me off is the way the doctor has spoken/behaved about it, as if it’s a minor thing and because the C word is so loaded, I’ve been really reluctant to “make a thing out of it”, if that makes any sense. Maybe I’m being a bit overly cautious or worried about other people’s reactions on that front.

I feel like I have so much more to learn about my condition too, thank you for sharing all the useful links, I have a lot of reading to do to feel less in the dark about it all. I feel a little like I should have been asking more questions sooner than now but feel so relieved to have plucked up the courage to message on here.

Thank you all so, so much, I’m so grateful to be here! Hope you all have a super rest of the day!

[Heidi_BloodCancerUK]

We’re all so glad you did post on here @AL7, as there will be many other people like you with Essential thrombocythemia (ET) or other blood cancers, that are feeling or experiencing the same things that maybe don’t post, but will be reading all the comments and advice. It can make a huge difference psychologically to others, knowing they are not alone in what they are thinking and going through and someone else has been brave enough to ask the questions.
This Forum is a wonderful space to ask the questions that you may not want to ask your Haematology team, or just to ‘sound it out’ before asking your team. There is no such thing as a silly question on here.
I learn so much from the Forum, it gives me great insight into the world of blood cancers from a patient and carer perspective. All of our users have such broad knowledge and experiences they share, that it would take decades for anyone person to try and learn it all and tell others. I am forever grateful to all that contribute, it does help me become a better nurse, being able to reassure others they’re not alone, or give tips that I have read on this Forum.
Do keep posting and keeping us updated on how things are for you. This is a safe space and you don’t need to be having a great day to post, we know there are some bad days too, when you want to ‘clear your head’ and just share your burden with others that totally get it.

Wishing you a brilliant day too

[Iain]

Hi @AL7 @Heidi_BloodCancerUK @Nichola75 and all.

Just a footnote to adaptions an employer may need to facilitate or be flexible in regards your need for medical visits and alike.

I was fortunate when working to have a role that allowed flexible working and salaried, not everyone is in that position.

For me I could give blood samples at GP or Infirmary in the morning and be report writing in the evening. No taking it out of holidays; tagged as ‘absent from work’ and all that agro; loss of pay etc.

And remember, not all Unions are ‘lefty fanatics’, they can provide good support if you are a member.

Now its gone midday so where did I leave that bottle opener

[Jules]

Thanks for sharing your experience. It’s really tough to feel like you’re being left in the dark about your health, especially when you’ve been living with a condition for so long. It is understandable that you are feeling a bit lost and isolated, and that’s completely ok.

I think it’s great that you’re trying to stay active and eat well. It’s important to look after yourself physically and mentally. While a “catastrophic bleed” might seem like the only thing your doctor is focused on, there are other things to be aware of, like fatigue.

Have you considered asking for a referral to a haematology specialist nurse? They might be able to provide more information and support. Glad you have found this forum where you can connect with other people living with Essential thrombocythemia (ET). Sharing experiences can be really helpful.

You’re not alone in feeling this way, and it’s okay to seek more information and support.
Stay strong.

[AL7]

Hi everyone! Hope you’re all well and having a fab week. Thought I’d jump on for an update. I’ve been thinking a lot about the fatigue, which I think I’d just linked to not sleeping well or needing to be a bit more healthy. I’d also wondered if it might be that I was perimenopausal but having spoken to Heidi on the support line, it makes so much more sense that my body is working harder to make extra platelets and so is just that much more tired!

I’m planning to handle my next haemo appt (in January) a bit differently, and have started a list of questions to cover. The last time we spoke she thanked me for sending through my tracking list (I’ve been suffering from rhinitis/sinusitis for about 7 months so was keeping a list of symptoms/headaches etc.), but she assumed my GP was handling it although she did say she would chase up with them … I’ll let you know if I hear anything!

I spoke to my friend in our HR team at work at the end of last week to let her know what the situation was, got some advice from her and she was really lovely - funny how the anticipation is often the worst part. She’s asked me to send an email with an explanation of the situation to my boss and my team HR person so they have the info the need relating to my condition (planning to do a lot of copy and pasting from bloodcancer. org .uk!)

I also told one of my best friends. I’d been avoiding this since I found out as she lost her Dad to cancer and I know how loaded a word it is for her. It was pretty emotional but I was definitely better placed to handle it having been on here - knowing that it’s chronic and with the likelihood of a normal lifespan for me meant that I could reassure her and be strong for us both. Thanks folks!

Really appreciate all the suggestions for getting out, particularly during the day and staying active. I’ve been making an effort to get out in the daylight when I’m working from home - in the past sometimes I just haven’t left the house when I’m at home so the support and encouragement from you all on here has nudged me into getting out in the sun!

@Jules - please could you share some more info about requesting a special haematology nurse? I don’t think I’ve had a nurse involved with my care since I was first sent to haemo about 15/20 years ago - do you know how I could do that please?

Huge thanks again to everyone, I hope you’re all doing well and having a great week.

[Erica]

Wow, @AL7 you have really achieved a lot in a small space of time, I am impressed.
Yes, please do keep updating us how you are getting on.
Be very kind to yourself and yes, you really show how things have have changed over the last 15/20 yrs.

[Duncan]

Hey there @AL7, so good to hear how you’re getting on. Like @Erica notes, your achievements are already really impressive. This is quite the feat considering all that you’re dealing with so don’t forget to rest too, especially with that fatigue you’ve described. I’d try to “rest and resume” activities when fatigue takes over as pushing through just makes it worse in my experience and adds extra stress. Stress really affects my energy levels and so I’m practicing not letting myself get so wound up and letting stuff go rather than waste energy on all that. I found my fatigue reduced over a few months as my high blood cell numbers also reduced with treatment.

So glad you have a friend to talk this through with, highly recommended! Uncannily I also shared my diagnosis with a best friend who also lost a parent to the big C, and with hindsight I think it’s been helpful for us both to share good news about living with cancer rather than it automatically being all doom and gloom. You’re so right about “cancer” being such a loaded word, and you’ll likely find yourself having to be strong for others many more times as you tell them about your diagnosis.

Sharing with trusted others also means they’ll be more likely to share with others the potential for positive prognoses with blood cancers such as ours. Sadly, some folks just can’t talk about it. I’ve lost relationships with loved ones since my diagnosis as they couldn’t cope with my cancer. Please don’t feel like it’s your job to support others though—now is the time to seek support for you. I also recommend therapy if you can access it, it can be such a great space to let rip and not have to worry about upsetting others!

In fact, something I’ve noticed since diagnosis is that others understandably don’t know how to talk about blood cancer and use lots of battle language, like fighting it, battling through it, winning against the gene mutation… I personally don’t use that language and instead think of these MPNs as something to live with, a blood cancer to tolerate, a chronic blood disorder that unfortunately does not have a cure or remission… yet. But science progresses and CRISPR technology is looking promising which gives me hope.

As for getting daylight and activity, I am really so chuffed that you’re seeking this out! I know how easy it can be to stay sat in front of our computers when working at home, but regular little bursts of activity are so good for our bodies and minds, let alone getting our vitamin D boosted or even simply taking a break. Here’s the research that inspired my new morning routine and getting back into yoga when my fatigue kicked in, should you be interested: Cancer-Related Fatigue: Causes and Current Treatment Options - PMC

Trying to think of other stuff I would have benefitted from hearing after diagnosis… I’d say keep posting good stuff and the not so good and you’ll find folks here who can empathise. Sometimes it’s pretty uncanny how similar the experiences of other survivors can be, other times it’s like learning a whole new language and can be hard to take in. But do please let us know how you get on @AL7 now that you’re part of the forum family!

[Jules]

Hi @AL7
Clinical Nurse Specialists (CNS) in haematology offer support, advice and guidance to people with cancer and other blood disorders. Each hospital will offer a different services and approaches. The hospital website will tell you more and if they offer these services and then you can add this to your list of questions to the doctor.
At my hospital all of the CNSs are experienced cancer nurses. They provide:

• a contact point for me at any stage

• information about my illness and treatment

• help with physical symptoms such as pain, fatigue or nausea

• someone to talk to about worries or problems

• advice about treatment and the side effects

• advice about relationship, fertility or sexual issues

• support and advice for family, relatives and friends

• signposting to other sources of support and advice.

They also worked with other health professionals, GPs and carers in the community to support me.

The Haematology Department also has a Macmillan Support Worker who works with the CNS Team.

[AL7]

Hello folks! Sorry for having been a bit quiet, time does run away! Thought I’d jump online with a bit of an update. I’ve let our HR team know about my condition via an email, having spoken directly with my boss and updated him first. I’ve not heard back yet as the main person is currently on leave but I’m expecting it will all be pretty relaxed which is nice. My boss was really supportive and asked how I was feeling and about what practical support work can give me, I think it’s more of the same really as it’s been fine working in my blood tests and telephone appointments so far but I’ve said I’ll keep them in the loop.

It’s been rattling around my mind whether I want to get in touch with PALS about this all. Just seems crazy that I’ve had this for so long and the actual telling me what it is has been missed over and over. I supposed I’m grateful that I’m still on the list for regular blood tests and check ups but I’m not sure I have quite enough energy to have a fight about these things. I do think I will ask about the specialist nurse at my next appointment though!

Anyhoo, other than that I’m mostly ticking along, been a bit more tired recently but it has been busy. A bit worried about managing all of that in the winter, although my boss seems ok for me to manage my working from home days around getting out in the daylight. Is there anything in particular anyone does when the shorter days set in?

I hope everyone’s doing well and getting to enjoy the sunshine when it’s about! Take care!

[Erica]

Hi @AL7 Your employers sound really supportive.
I am glad that you have a good relationship with your specialist nurse.
To be really honest over the last 20 yrs I had not ever thought about the shorter days and the impact it might have on me.
When I was working I used to go for a walk lunchtime to get exercise and fresh air.
I await others thoughts.
Look after yourself and please do keep posting how you are doing.

[Duncan]

Hello there @AL7, what a great update! I’m really pleased to read about how it went with your boss, sounds like they’re great and empathetic. Fitting in all the appointments can often seem like the main task of living with these Myeloproliferative neoplasms (MPN), so well done juggling all that.

I totally know what you mean about feeling grateful for treatments continuing despite the lack of contact from doctors. Living with Myeloproliferative neoplasms (MPN) can feel, dare I say it, almost normal… when it’s going well. However, I’d suggest, from my non-medical but lived point of view, to watch out for physical changes and early signs of any infections and let your specialists know.

It’s common to develop dry skin and take ages to recover from injuries and infections with Myeloproliferative neoplasms (MPN), unfortunately. When I get little finger cuts or bump into things it takes longer to heal these days. Perhaps slower recovery is the case if you take chemotherapy? If you’re taking aspirin to thin your blood and no other medicine then that would be my ideal! It likely means you’re at low risk of clotting events.

As for winter, I think you’re wise to think ahead. I used to get terrible SAD during winter and thankfully I read about natural daylight bulbs and put them up everywhere and then the SAD wasn’t so bad. Friends of mine in Scandinavian countries all seem to use tabletop SAD lamps—I have strong memories of a close friend eating cereal while leaning into a massive daylight lamp!

I’d also say, as your boss is so agreeable, see how you get on at work and rest from and resume activities when you feel fatigued. Pushing through fatigue just seems to make it worse and takes longer to regain energy afterwards, in my experience at least.

Personally, I find doing some stretchy yoga-type exercise helps when I have low energy, and some postures can even be done in a chair! Love @Erica’s fresh air lunchtime walks too, highly recommended. I love hiking in woods and nature therapy generally. Any kind of movement is good, just get the blood pumping around and it’ll likely feel weirdly invigorating!

Hope this helps! Enjoy the sun where you are too and beautiful full moon