Hi alice
I’ve been to my surgery today and been seen about my lumps. She said they are nothing to worry about which was good news but she did say I had thrush so have been prescribed some medication for that. I had no idea. So was good that I went.
Regarding the telephone consultation my consultant is aware of my hearing but as he isnt English I struggle. I dont have anyone else to report to regarding my ET illness…just that consultant. I will deffo have a chat with him at my next appointment/consultation.
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I am so glad you have been to your surgery and seen about your lumps, you must be so relieved and you also got your thrush diagnosis and a prescription for medication. I realise your problem with your phone consultations and as you say you will wait till your face to face appointment. Take care and keep updating us.
Really glad you managed to talk it through with your GP @Emmaco, do you feel better and reassured?
That sounds difficult for you, I do hope your next consultation offers you some more comprehensive answers to your questions as it’s so important that you feel as informed as you wish to be about your circumstances.
If you felt it might be useful for you to do, you might want to get in touch with haematology department just to see if you have a clinical nurse specialist or key worker assigned to you, as some people have these points of contact but don’t realise! Apologies if you’ve already done this!
Take care, Alice
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Hi there
Yes I saw a health practitioner and she was very good. So feel loads better now. I am feeling anxious and very worried about everything at the moment. I need to step back and chill…just feel on edge.
Yes I think you have a good point there about finding out if there is nurse specialist or someone that is assigned to me. I haven’t tried that so could be worth giving them a call. Many thanks.
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Hi all, glad to have stumbled across this thread. Hope everyone is well.
I’ve been having a few problems with getting my haematology team to commit to anything on paper in the past - it took three years of me nagging for a BMB to get one and my diagnosis and now they only ever write Thrombocytosis on my blood forms. My GP seems none the wiser and on contacting both the GP and consultant this week both have told me that of course I don’t need a shielding letter. This may be the case but I feel like they are totally under playing my condition and it feels like I may be putting myself at risk. Anyone else in the same situation?
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Have you any people you can share these anxieties and worries with? Otherwise this is the right space to be able to share all your anxieties and worries. Whilst we are in isolation perhaps we need to share and get support in different ways. We await hearing what it is like to be you. Stay safe.
Hi @Loverlygal, it is great to hear from you again, a medical person once said to me that I was the expert on my body. From the start the NHS guidance was that people with blood cancer were in the vulnerable sector. So many people have had trouble getting or not received and NHS letter. Sometimes the medical profession do not seen to realise all the significances of having an NHS letter, emotionally and practically. I look at it that I would prefer to be safe than sorry. How are things with you at the moment? Take care and stay safe.
@Loverlygal I’m glad you found this post too! It sounds like a very difficult and confusing situation for you!
Have your haematology team explained why they believe you don’t need a shielding letter?
You might find it helpful for you to talk through [our information](https://bloodcancer.org.uk/support-for-you/coronavirus-covid-19/coronavirus-blood-cancer/ and that of the government with your clinical team and see if they can explain their position to you? Although they may be very busy at this time, it is really important you feel comfortable with the information you are being provided with.
Have you got much support around you for getting things like groceries etc?
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So sorry you have had such problems with the professionals as that must be both confusing and upsetting - do your haem team specialise in MPNs? It would be certainly be good to share the information on this site with them and the experience of many of us MPN patients who have had it confirmed that they are in the bracket of shielding - do keep coming back here to let us know how you are doing as we are all in this together, all the best
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Hi @Loverlygal just checking in to find out how you are? I hope the information from my colleague, Alice, was helpful?
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I know my reply is very late regarding this but thought I would share my experience.
First of all I must stress that each person with ET must be considered as most likely needing to shield (gov guidelines ) unless you discuss with your consultant if you feel otherwise.
We are all different due to age , type of treatment, current well being , blood results and other underlying conditions .
I am an almost 67years old female, retired nurse , who had investigations for high platelet levels over 30 years ago ,with then no treatment other than iron to correct anaemia.
I have stayed fit and well with no formal follow up until recently ( 18 months ago ) after my mum died -aged 90 - after a very active full life abd only being aware of her having ET and receiving treatment aged around 88!!!
Her consultant recommended I get further checks and last year my levels had spiked, very high !
I was still fit and well but commenced Aspirin, statins and Hydroxycarbomide last September.
I saw my consultant in March this year just before lockdown and asked all relevant questions about my risk levels with covid . I must stress that my levels were reducing and all other blood results were within normal levels . I was told that I was at very low risk , little more than anyone else my age and that as long as I strictly adhered to the general government guidelines and was sensible I didn’t need to shield but avoid crowds .
I then received an NHS shielding letter about 3 weeks into lockdown ! At which point I was totally confused ( as I had also spoken to my GP earlier who also agreed I should be fine ) and I was also a bit concerned.
I took extra care ( started to do click and collect rather than go into any shops etc )
Then after a further consultation with a triage nurse at the hospital and speaking to the consultant haematologist again I was informed that the letters had been sent out en mass from haematology as the majority of patients did indeed need to shield .
I was again told not to worry too much and that I didn’t need to shield but I did need to take care , as we all should .
Having gone through this communication blip I now still “ click and collect “ rather than shop in store where possible , grab the odd very advance online shop ( odd ones now available if you trawl for them across all supermarkets) , managed to secure a local mikman who can leave extras and our local butcher delivers ( some small greengrocers now deliver too )
To all Diagnosed with ET but without a letter and concerned about supplies and worried about shopping -
There are many small local shops and even indoor market traders willing to deliver to your house , many do not charge a delivery fee ( however you may pay a higher rate for produce-offset by it having to travel for it) but I’ve found it’s almost always lovely and fresh )
Most supermarkets are operating click and collect from their car parks in a very safe way.( our Tesco was great ) Even some of the little local shops are happy to do similar by taking an order and payment by phone.
Another tip for anyone wanting to send parcels and nervous of queuing in a sub post office . Checkout the courier companies some you can pay and print the label at home and do a very swift drop off at a local shop, some collect from your home ( cost isn’t as high as you might think )
I’m keen to stay as independent as possible and found with a bit of effort, searching and phone calls you can get things safely . If you think you should have had a letter and would like one for priority reasons , even at this late stage you can I’m sure chase it up.
I hope by now you and others are pretty much sorted .
Good luck
Brenda
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Hi Brenda, welcome to our forum, great to get to know you and I am glad you have found it useful already. How are you coping emotionally as my emotions have really been heightened since I have been shielding, an example is I get so excited to actually get an on line grocery delivery lot and so angry at what is said on the TV sometimes. How are you coping and do you think your nursing back ground is a help or not?
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@Brenthebaker Hi Brenda, wishing you a very warm welcome to our forum! 
It’s brilliant to have you join us!
And I’m so sorry to hear about your mother, I hope you are okay? Like you say, it sounded like she had a very full active life.
We really appreciate you sharing your experience, and taking the time to write something so thoughtful and detailed- thank you so much!
Be sure to keep an eye on our social media channels and our website for any new updates and information about the current situation, we will work hard to keep you all as informed as possible.
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Hi Erica,
I think my circumstances are different to yours as I am managing to do click and collect shopping as well as online delivery when I can get one . Yes it’s quite exciting getting a delivery slot I must admit . It has changed the way I shop and to be honest I may continue to make use of local small businesses as they supply very good produce and most do deliver to the house .
As for my nursing background - it helps in some ways as having been a theatre nurse for many years I consider myself competent when it comes to taking care being out and about. In the early days of covid before lockdown I actually insisted in doing our shopping as I felt safer than letting my husband do it !
I can instinctively back my way through doors after elbowing any handles down and tended to treat the whole process as if I were at work.
I was wary of the touch screens at self checkouts and the credit card machines and had a good system for unloading shopping when home .
I also watch others behaviour like a hawk as to what they touch and how they behave ( again linked to how I would have at work )
With regard to my condition of ET my nursing background did hinder a little as not being up to speed with medical things ( I have an obvious bent towards surgical - and paediatric too)
I had initial reservations about taking Hydroxycarbamide .
I had bone marrow tests Confirming ET and oral iron for anaemia years ago but as no treatment at the time and my platelet levels weren’t very elevated ( GP never had concerns at all ) I kind of shelved it in my head and didn’t think about it .
My mum was diagnosed , aged 88 , with ET with a JAK 2 mutation. She was fit and healthy but it was discovered during a short hospital stay with Acute abdominal pain which turned out to be cholecystitis. She was anaemic and underwent various tests .
She was commenced on Hydroxycarbamide ( had undergone 2 successful hip replacements) and after this she had investigations and surgery for a bladder tumour ( not unwell with it )
Just before her 90th birthday she declined a bit , was more “weary “ and had a couple of falls , her memory was affected too which though diagnosed as early Alzheimer’s never seemed to fit somehow .
She continued to stay independent at home until a vague episode took her into hospital . She never improved after that and it was diagnosed that she has mutated to acute leukaemia .
Mums family had a history of people living to “ a good age . Her mum to almost 90 , her brothers into their late 80s and one brother still active and swimming in his early 90s
Part of me had a possibly illogical thought that the meds led to the mutation ( anaemia mum had initially wasn’t too bad for her age but platelet levels were quite high) the memory loss and tiredness and would she have been better without ?!
Myself and my sister ( at mum’s consultants request ) Were tested for JAK2 mutation both of us negative but my platelets spiked high in January 2019 .
I at age 66 started to worry that I too might mutate and not live long .
Illogical I am sure as my consultant kept trying to reassure me .
I initially waited in the hope my levels would fall naturally ( they had in the past ) they did a bit but not much so I reluctantly started medication in September 2019
I very reluctantly started medication at a very low dose ( my choice) and gradually Increased. I currently take 1 tablet mon-sat and 2 tablets on sundays .
Levels are gradually falling .
My consultant has been very good and very patient with me!
As you can see my nursing background didn’t help as I was overthinking way too much .
I feel much better about everything now as it’s been explained to me that I’m on a relatively very low dose, that age plays a big part and mum may well have mutated due to the condition rather than the medication.
My sister who also has only very slightly elevated levels sometimes but hasn’t been further investigated agreed that she wouldn’t have asked as many questions as I did!
Apologies fir such a long reply .
I’m fine with it all now , don’t tend to think much about it all , apart from taking care Re covid 19 of course but I’d do that rigidly as an ex nurse anyway .
Take care and hope everyone stays safe
Brenda
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Thank you Sue ,
I have replied to one other kind lady who messaged me but fear my message was a bit too long . I hope you can read it on here too so I have no need to repeat.
I’m using my mobile phone to message and find the links and different chats etc a little difficult to navigate . Maybe I’ll do better when I get used to the layout
Kind regards Brenda
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Don’t apologise for the long message at all @Brenthebaker! Thank you so much for sharing these experiences on here, I’m really glad you found this forum. It’s really good to hear that your consultant has been patient with you and that you feel able to ask lots of questions. Take care Brenda and keep posting
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Hi Emmaco
First of all I trust all went well with the birth of your daughter’s baby.
I hope it helps you to know that you are not alone in your experiences and mine are very similar .
I also have ET and have known about this for many years but only recently aged 66 started on Hydroxycarbamide due to a very high platelet spike .( higher than its been for years)
I thought I’d share my experience with you as it sounds so similar .
I am now fully retired but Pre covid was very active helping with 3 grandchildren ( We moved house a couple of years ago twice within a year ) and enjoyed swimming and walking . I had struggled with weight issues for years - managed to lose almost 1 and a half stone gradually and yet after lockdown I’ve regained almost half a stone which is very disheartening so I can relate exactly to how you feel .
Also my youngest daughter who lives over an hours drive away had her first baby this year in January. We have had the most awful experience ever due to covid.
New baby had tongue tie and various niggles with feeding and sleeping , now it’s just sleep issues ? Due to reflux . Plus he was in need of a scan for other things ( thankfully that’s all now ok )
I had been helping them by staying over - then lockdown came and I’ve been unable to touch him since late February!
We have only recently have seen him and the other 3 grandchildren at social distance.
I thus fully appreciate and relate to what you have been going through.
Having a new baby grandchild that you can’t touch or cuddle and seeing them ( by pictures , videos and video calls only ) has been heartbreaking .
It sounds like you are fully shielding and I don’t know your full medical history , but having spoken to my consultant I take as much care as is reasonably possible but he has reassured me that my approach of being super careful ( only do click and collect or online shops now or have home deliveries) I have , for my sanity as well as my physical health , now “ shaken myself up a bit “ as I too was feeling very lethargic and now with great care I go to our allotment, usually by car but more recently as the risk is getting a touch less , I walk there.
Fully avoid any touch contact with other people and keep to the 2 metre distance if I chat to anyone .
We have now had social distance meets with both daughters ( on separate occasions ) and although it’s so hard keeping at distance it’s been amazing to see them.
I have no issues with any of my blood results ( other than my platelets ) and no other underlying health issues.
If your condition is holding you back in any way from seeing family I’d advise talking to your consultant about how much risk you are right now .
Really hope you get to see your new baby even if it’s at 2 metres away .
Take care and try to keep positive and active . I’m coming out of my downward dip and really hope you are too .
Kind regards Brenda
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Hi Brenthebaker…
Thank you for your message. It’s good to hear others stories. Firstly my daughter still hasn’t had her baby…she is a week overdue and so tired and fed up so added anxiety at the mo…I dont know if the weight issue has anything to do with the chemo but I did lose weight from eating more healthily and so it’s most probably what I ate and how much…I do hope your daughters baby is ok now…I cant imagine what its like to not be able to see them…I am shielding but I do pop out for food/medication…i need to do it for my mental health…i do think it’s hard to keep motivated in this lockdown…so it is good your getting out to your allotment…I will support my daughter all I can as she is a single mum for first time…thank you for your message. It’s good to hear others experiences…I think once baby grandson has arrived and I’m back at work…hopefully next month… I’m sure I will relax and bounce back.
Many thanks
Emma.
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@Emmaco Hi Emma, I hope and your daughter have been doing okay? As you say, I can only imagine the upcoming arrival of your lovely grandson must give you something to look forward to
Please do remember, the support line team are always here if you ever need further advice and guidance around shielding safely, or would like to talk through anything else. Your treatment team are also a very good point of call for more specific advice to your individual circumstance.
It sounds like this has also had an impact on you emotionally, and understandably so! how have you been feeling today?
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Hi there
Yes I’m not bad today thank you. Feel for my daughter at the moment. Shes feeling depressed with the pregnancy now. Shes a week overdue and shes not had the easiest of pregnancy. It upsets me to see her struggling. Shes had the sweep today and is booked in next week for induction. Shes really not looking forward to labour. It’s her first child. But yes I am looking forward to meeting him. Yes it has had an impact on me in many ways. Financially…physically…emotionally…mentally…I moved house in march at the start of this virus too so had alot to deal with. I am settled in my new home now. Just need to get back to work. I work for the nhs on a psychiatric ward for female adult rehab. I miss the staff and patients.
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