Letter Arrived to Confirm if Vulnerable etc, C... - MPN Voice

MPN Voice

10,445 members14,398 posts

Letter Arrived to Confirm if Vulnerable etc, Covid-19 & Hydroxycarbamide...

pontygirl profile image
8 Replies

Many are uncertain of our positions during these Unprecedented Times..

Had the Txt few days back to say I’m Vulnerable 😱

Letter arrived today from my GP Practice on behalf of NHS ENGLAND...

Spells it out clearly what those of us more or less knew..

For me personally, it makes for sad reading.. Never ever think of myself as Vulnerable!

However the letter is informative about where help can be obtained if needed..

Especially if one needs help collecting medication from the Pharmacy etc..

They have put a website address and telephone number to get assistance with Grocery Shopping and Meds..

Also referenced “ Every Mind Matters Website “ for those struggling with the situation..

The letter confirmed that those classified as Vulnerable, their details are passed to Sainsburys in particular..

I had already registered on the Government Website for my info to be passed to Sainsburys etc..

I personally am concerned for all the people who are putting themselves on the Front Line, to help others..

Covid19 doesn’t discriminate about age, we have young people dying sadly!

It’s not just us older folk at risk, in my opinion...

I don’t want my daughter’s or son’s collecting Scripts or Shopping on our behalf..

I would prefer it to be me that is exposed, in this situation..

My adult children have a lot of living to do and we have young grandchildren that need their parents...

Thus far, I simply purchased a little extra back in early January and slowly built upon it each week.

My pantry always has a good stock of basics, often forget I’m catering for just hubby and myself.

No longer is there 6 in the home, I love to bake etc, I had to when raising 4 children & Nursing 30 hours a week whilst they were all young....

Like Judy and others, we basically just need fresh veg, fruit, milk & bread and that I added to my youngest daughters Delivery from Sainsburys..

I wouldn’t want her getting the shopping herself in any Supermarket...

Too much we don’t yet know, about Covid19...

This Vulnerable status gives us the opportunity to get a Delivery Slot once a week..

Neither do I want my husband going shopping, he is just over 70 years. He had Surgery last Monday and a Triple Bypass October 30 last year..

Which brings me back to wishing I could have remained independent.

So it’s a little shopping from Sainsburys, and baking at home etc for however long it takes..

All in all the Letter is both Informative and Sad in a sense for me personally..

I intended to take up some role back in Nursing from whence I retired..

Once the powers knew my status of, ET, MF, PV & AXSL1 Mutation.

That was it for me, with regards to helping out at my former place of employment our Hospital...

I take 8.5 grams of Hydroxycarbamide (17 Capsules) per week, Clopidagrel and 3 lots of Venesection since Polycythemia was added to my list in January..

To all my fellow MPN sufferers no matter your circumstances etc, we are on this journey together. We are lucky to have a wealth of information to hand and an abundance of kindness when needed and that is priceless!

Our Maz must be one busy lady, but never fails to ask questions on our behalf if appropriate..

I wish you Well & Stay Safe as much as you All possibly can.

Maria 😊

Written by
pontygirl profile image
pontygirl
To view profiles and participate in discussions please or .
Read more about...
8 Replies
Inca profile image
Inca

Tried to put like Maria ,but it turned to unlike!!! Very well put together,Sally

pontygirl profile image
pontygirl in reply to Inca

Hi Sally,

Hope you are well, now things are little quieter here with my husband, I will get up to date with you by email..

Stay Safe Both

Maria xx

socrates_8 profile image
socrates_8

Hey Maria... :-)

Yes, I am also, like you considered as vulnerable... and I can imagine that there are quite a few of us here that do not enjoy to donning that figurative apparel any more than you or I...

However, 2020 vision is a useful thing at such times... we all growing older too... (Although, yes there are many MPNers who are younger), irrespective many of us are vulnerable, and now we need to be less stubborn and more compliant as we all do our utmost to defeat this invisible monster in our presence... Because to not do so might well harm others... And I am certain that none of us would wish harm to another, however young or old... would we?

Seems like yesterday when I too was far less south of the 60 years that I am today...

I do not feel that old, however, I recall thinking when I believed being 60 was considered by myself as older, and more feeble...

Today, I try to listen to what my body tells me I can and cannot undertake, when once that type of thought was never a consideration... However again, today, I believe that I have another strength at my disposal, that I only thought I once possessed... the wisdom of age and experience... Today that wisdom serves to keep me calm and to stay on track because I know from that experience that as long as I am chipping away, never stopping, never surrendering... I will succeed!

And so will we all... :-)

Stay happy, safe & strong Maria, & everyone else too...

Steve

PS. 2020 Vision after this year in Australia, (and globally) will always have a more poignant irony that one might first have presupposed... Remembering the year of 2020 shall remain with us all for some time I am sure... Hopefully, our species might learn something too... ?

pontygirl profile image
pontygirl in reply to socrates_8

Steve,

Thank you for the honest sentiments you have so eloquently declared here...

As always you make one consider our situation in this disaster, which is unfolding on this “ Our Planet”...

You and I have spoken before about such dreadful disasters, in far off shores..

Ebola in particular springs to mind, as a younger lady without my label of MPN attached to my name, I was accepted to go and use my Nursing Skills for that crisis..

The irony is huge for me, the very time that this invisible monster strikes in our ‘ back yard’ I feel utterly useless !!!!

I applaud the younger Nurses and Doctor’s all criss crossing the Globe to get to their own country to help..

Reality is, we all need to do whatever it takes to defeat this common enemy, stand together Strong and Determined and wait..

Scientists across the world are desperately trying to develop a Vaccine, they need that most precious of commodity, Time..

Engineering Facilities with the wonderful minds are looking to create Respirators / Ventilators in the race to provide thousands more for Hospitals...

James Dyson hails close from my location, he has his Engineering Staff working around the clock to get Ventilators into production..

Alongside F1 and many Global Names to get Ventilator’s by the thousands.

We are going to need many thousands of Ventilators, if not the Medics will have to make a hard choice , young versus old to Ventilate!

What a sad thought and a difficult decision for any Physician to make.

In a perfect world, there will be a Ventilator for everyone..

This happens in far off shores, this time it’s happening to all of mankind..

And this is the fight of our lives, our forefathers went to war and huge sacrifices were made by all..

This is ‘ Our War’ and this time we have to defeat this unseen, silent monster that wants to kill us mortals..

I know exactly what your response would be to the question of, “ who goes to the Supermarket?” You or your Daughter?

Knowing the Risks are High of catching Covid19 ?

You my friend will go every time, to protect your girl and her little ones..

That’s my fear, the advice is, “ Send your Adult Children “ for the shopping etc, etc.

Personally I would rather starve than send any of my family shopping...

And that’s part of me being so Annoyed, Hurt, Angry, Ashamed that , I cannot help this War on Us..

The proposed ‘ Role Reversal’

“ Send your Children Mentality “

This Virus doesn’t Discriminate about Age..

You and I are friends outside of the Forum along with Peter (Biggles) and Laura and lovely Lesley & Al in US, I miss Lesley hugely and Allen, they both left this mortal coil within weeks of each other...

The fat cats amongst us, won’t go short of food or medicines, they will get tested for Covid19.

Whilst we have Doctors, Nurses on the Front Line without the Personal Protection Equipment, PPE...

And that’s Acceptable ???

I have an acquaintance working in ICU in California, that’s a big state and they are also without PPE..

Incredible, at least their leader has ordered huge supplies of Testing Kits from Korea at long last..

Our PM in UK so far hasn’t asked Korea to supply Test Kits to us..

Korea has dealt with Covid19 very well, puts many nations to shame..

(You have a sister living in the US, I’m really glad she has been home, and spent time with your Mum and the Family)

So far Testing Kits in UK is nothing short of Shoddy, Disgusting in this Day & Age..

Temporary Hospitals springing up throughout the UK for Thousands..

I learned yesterday that the home of my Red Dragons the Principality Stadium will hold 2 thousand beds ++.

I have two former junior colleagues heading to London to the Nightingale Hospital in the Excel Centre, 4 thousand beds..

They are no longer Junior naturally, and they will give their best..

We are gearing up for a Tsunami of Patients, on a Scale we have never seen before...

You are so right Steve, with age comes Wisdom, Tolerance and Understanding, we hope...

Let us Hope that Mankind will learn from this.

This time it’s Not Far Off Distant Shores, it’s practically Everywhere and that’s Frightening..

And me, I’m helpless I cannot do what I was trained to do, even in the most Basic of Roles..

Here in Weston super Mare Hospital, we had a Death on what was once My Ward that I was the Leader on for years...

Now I cannot even hold the hand of the Sick & those in Need..

Just because of my MPN, which will eventually kill me anyway..

Not forgetting my age of 68 just, and I almost have the full house of Flavours in MPN Land, besides Two other Issues discovered recently on my Pet Scan..

My Surgery is on hold, and the Biopsy Results on my Thyroid are not back as yet..

To do the simplest of tasks within the NHS for 15 hours a week, would be a welcome challenge..

I’m sorry you are confined to your home, you love your Cycling, but every cloud etc, you can give more time to Mates Forum Australia..

And your Dearest Mum will have more of your Companionship...

Sarah has been stood down, Bristol Airport is Closed for 12 weeks.. As is London City Airport and others will follow..

As you know Ken is Retired Armed Forces, he keeps abreast of all things Military..

We regularly have Chinook Helicopters flying over our home into Bristol Airport drooping off Troops nightly..

We will clearly need them in many ways.

My Retired Para Husband, would still jump out of Aircraft if he could and if needed, even now..

He knows this will be the fight of our lives coming.

He understands my desire to Not Put Our Family in Harms Way...

It’s Food Delivered, once I get a slot for us, or Rationing at Home :-)

I am baking at home and sending goodies to my children and grandchildren..

My two closet neighbours are substantially older than us, Im the youngest haha..

So I give them some Home Baking and a Loaf of Bread a week..

I have the Flour and time to make Bread, the home smells lovely with Bread in the Oven.

My second son David brought me 20lbs of good Flour from a Mill up country, and Yeast, he is also on Furlough for 12 weeks as of Monday, his Building Company has downed tools etc for Safety Reasons.. Upside he was managing a huge extension to a Garden Centre & Restaurant..

They had to close their doors too, David was asked to take as many Plant’s as he wanted..

He thought of me immediately, I now have huge amount of beautiful Bedding Plants and some glorious pots of various beauties..

He ensured his men had Plants too, that will keep me busy wrapped up planting in couple of weeks, tad too early for some plants.. South West doesn’t get it so Cold as the Northern Areas fortunately for us..

So I have plenty of Flour to make Bread for family and my 2 sets of neighbours..

That helps offset the demand on Supermarkets...

David also got 48 cans of various food stuff and a Catering Pack of Pasta, to drop off at Food Bank here...

He purchased it from the Hotel he was staying at with his work as the Hotel has now Closed it’s doors temporarily too..

This is people helping people and ensuring nothing goes to waste..

Food Banks are so short of supplies for the poorest amongst us..

I am also working on ‘My Story’ for Mates Forum.

I’m really happy to see how it’s growing, you have worked so very hard on it..

At least this Confinement to Home has come at the correct time for you, heading into Colder Climes which you detest..

This week it’s been Glorious here, Blue Skies every day and some warmth from the Sun as it slowly climbs towards us and away from the Antipodes..

I have a letter almost finished for Peter, bless them both in NZ..

By the way Enjoy being 60 for a tad longer, that’s about to change shortly 😜....

I have to wait until January before I change digits 👍.

All in All as usual, you have written a great piece on Voice all true and in Perspective...

Will write personally soon, as Always Our Best to You and Yours.

Take Care, Stay Safe ...

Maria & Ken xx

Stevesmum42 profile image
Stevesmum42

Morning Maria. Such a great post.Totally agree with Sallie.

The more I read your posts the more awed I become .

Thank you.

Love Sandy xx

pontygirl profile image
pontygirl in reply to Stevesmum42

Oh Sandy

How kind, I’m simply a Mum, Grandmother and Always a Nurse..

I took the Nightingale Pledge in Church back in 1975..

To Do No Harm, Help the Sick & Dying, Promote Good Health, Etc ..

I have lived by that Oath I took, and moral fibre along the way..

My children are precious to me as is all human life..

This Community here, is important to me for the help it gives to those in need..

We all contribute in our way to make this a Good Place..

My eldest daughter is a Manager at Bristol Airport , she has been involved in Repatriation of Brits coming through the Terminal..

Sarah has taken every precaution to protect herself and staff..

Apart from wearing a Mask, she is much like me. She wanted people to see her smile and her Calmness..

People are very afraid with good reason..

She has isolated herself from us, apart from dropping a Newspaper in the garden for her Dad and she accompanied me Monday last, whilst her Dad underwent Surgery.

She donned a Mask Vented to protect me and we didn’t hug or anything.

Once we got hubby home that night we haven’t seen her since..

As her Mum I’m glad she is off for 12 weeks..

Did you ever think we would see Airports Closed ?

Other’s will follow I suspect it may just be one of London’s like Heathrow that will remain open..

Fact is, Borders are Closed, for once there is nowhere to go ...

How are you feeling today ? Any change with the Coughing?

I hope it’s improving for you sincerely..

Take Care Sandy, it was lovely to hear from you today..😁

Maria xx

JackLina profile image
JackLina

I am sending you plenty of love and good thought for those caring words. All the very best to you and yours. Things will all slip back into place sooner rather than later I feel. fingers crossed, the population as a whole can find it in their hearts (and brains) to become a LOT less selfish! Not loving the attitude of too many at present. xxx

pontygirl profile image
pontygirl in reply to JackLina

Hi,

Thank you for your kind words, I agree with you hopefully with time things will return to some kind of normality..

No not keen on the Selfhish behaviour we are seeing these days.

I really would love to know where folk are storing the extra 1 Billion Pounds spent on Food these past 2/3 weeks..

Incredible, I went into a Supermarket last week and there wasn’t a Tin of Anything..

I’m so glad the big names are setting aside time for NHS Staff and Frontline Services...

Take Care of Yourself

Hugs to You Too..

Maria x

You may also like...

Coronavirus - vulnerable group confirmation.

I've not yet received a letter or a text, but I did get a phone call from Guys this evening -...

Covid-19 Shielding Letters

3-4 weeks to get the letters out to the patients classed as extremely vulnerable!

Registering as extremely vulnerable during covid 19 outbreak.

uk/coronavirus-extremely-vulnerable This is the site where you can register as extremely...

Update for those awaiting \"Vulnerable Person List\" letters

find out if I am on the Vulnerable Person List, I had the most helpful call from BloodWise a short...

Letter for fourth covid jab

Morning all, Just a small query, dose anyone have a copy of the Blood cancer UK letter that was sent