A while ago I told you that I was doing a video with Cancer52 who are a charity that tries to raise awareness of lesser known cancers.
5 people were chosen to tell their stories, mine being the difference in how I was treated when I had a well known cancer, breast cancer, and how I was, and am, being treated with a rarer blood cancer, PV.
Well the videos are all finished and will be launched in Parliament on Tuesday between 2 and 3.30 pm. I will be there by Zoom to answer any questions and also to ask questions of the Members at the end. I most certainly will be asking what is going to happen to those of us with blood cancer who have been found to have no antibodies to Covid after both vaccinations. I feel we have been pushed aside so we don’t put a black mark on government “numbers” and felt disturbed that Boris Johnson stated that, with the Delta variant, the elderly and vulnerable may succumb to it.
I have been asked not to share the video until after the launch but afterwards I can post the link if anybody wants to see it. I tried to put across the point that those people with an MPN can be dismissed when discussing their illness like I was when told “well, it’s not exactly a tumour is it”. I described how awful some of the symptoms are that we have to live with every day and how, many times I have seen the blank look on a doctors face when I have listed PV on my list of illnesses.
I am mortified that I was filmed when I was unable to get to a hairdresser because of shielding so the clippers came out. Bloody typical of my luck.
I put in a great word for MPN Voice and all the lovely people on it, I just hope they include this fabulous family on the day.
Anyway, that’s the plan to date and I hope I represented us well.
I will post the link as soon as I am able. I suppose it may be on BBC Parliament channel?
Take care everybody
Jill xx
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jillydabrat
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Hi Jill , , wow well done you, it all sounds a bit scary responsibility wise , , but I'm confident they chose a good candidate in you to articulate the case both forliving with MPN and as you highlight the situation around how to protect blood cancer folk shown to have little or no antibodies post vaccination. Youre about as lucky as I am in that the timing excluded a hairdo but I'm sure you looked good for camera. Look forward to viewing the video.
What you like , , I bet you looked fine and spoke well. . Fair play to you. Not sure I could do it nowadays as lost alot of confidence these past years. Used to address large groups regularly 20 odd yrs ago. . . . Now prefer to shy away a bit . . .such is life
Well , , , hiding behind a computer screen with an element of anonimity I'm not.🙌 But coping with illness over the last 15 years, the rigors of Transplant / GVHD and the disability I'm left with have changed me in some ways , some good some not so. I still very much doubt I would be persuaded to sign up to what you have volunteered to do 👏.
Really good to hear exactly what you have been working on.
I firmly believe that more questions need to be asked with regard to those of us with MPN’s that sadly do not have any resistance to Covid, after having had the Vaccine!
I do appreciate that we are all living in very strange and difficult times and as much as we would like to feel we have
“ some protection from C 19” I am also very sure that our Scientists & Clinicians are doing their very best for us....
I suspect we MPNers are a very small proportion throughout the world, sadly for us but I am thankful that this illness is very rare...
However I am personally grateful to you for helping to raise awareness for our plight in all of this...
I have all three (3) flavours of MPN ET, MF, PV, with the ASXL1 mutation ..
Life is not easy for any of us, I totally understand you’re rationale with regards to the treatment you received when diagnosed with Breast Cancer and sadly underwent a
Double Mastectomy in comparison of your care with MPN...
As a retired RN I know you will have received excellent care and greater understanding of the trauma of the surgery and coming to terms with the outcome, I nursed far too many ladies after Breast Surgery and have seen first hand the courage the patient needs to overcome her situation ...
I am going through nothing as difficult as a Double Mastectomy but I am facing an uphill battle to undergo a
Hip Replacement...
So far the Orthopaedic Surgeons I have approached privately have little to zero knowledge of my MPN’s...
Having spent my whole career within the NHS Hospital Environment, I personally believe that everyone should get care as & when needed...
I am expected to wait 20 weeks before I actually see an Orthopaedic Surgeon and then go on the Waiting List !
Thus patients are not accounted for in the statistics of
“ Waiting List Numbers “ as it will take me 5 months to get on the List !!!
Hence a profession I love and have a great respect for are sadly delaying me for actually being one of those statistics on the waiting list arghhh !!!!
Thus I have little option than to seek help privately and run the usual gauntlet of, “ What is an MPN “ ?
I simply refer the Clinicians to my local Haematologist, but I get the distinct feeling that Surgeons are not too comfortable to add me to their list for Surgery primarily down to my MPN’s..
My Bloods are not too bad Platelets are 600,000 etc so they definitely need to be within normal range..
None of that matters to me when I cannot sleep at night for pain & I cannot walk great distances at present.
So I am grateful to everyone that highlights the plight of us with an MPN.
Similar to yourself but not as direct to our Government 👍 I have done
two (2) projects for the manufacturer of Ruxolitinib - Novartis each occasion I have raised awareness of us with an MPN and the need for more research.
The latest of which I did recently is centred around us “ living with MPN” and greater understanding of the disease by Clinicians throughout the world.
Last but not least our wonderful platform “ MPN Voice” for help and understanding of what it is to be diagnosed with MPN..
This film was done for a Symposium of Haematologist to understand this dreadful disease from a patient’s prospective...
I hope that our Government takes heed at our frustrations, disappointment, fear of not having some protection against COVID-19..
I must also say that I do understand that we have never experienced anything on this scale during my lifetime and I do appreciate our Clinicians are doing their very best, in dreadful circumstances especially so at the very beginning ie; PPE Shortages Etc, Etc..
Our Doctors & Nurses on the front line were absolutely stretched as far as they could go, to their own detriment..
We owe them a great debt of gratitude and not forgetting those that lost their lives caring for others...
The great loss of life throughout the world...
Sadly I personally see us being locked down again later this year.
And I feel for the thousands that are waiting for Surgery and Follow Up Care which ground to a halt..
My husband is one of those needing follow up care after his Triple Heart Bypass November 2019. Just prior to C -19 arrival on our shores he was very lucky to have had his Emergency Bypass..
He now has an Incisional Hernia along the Scar Line which happens, so far he is approximately 11 months overdue to be seen at the Hospital in Bristol...
I keep my eye on the Hernia and possibly irritate him each time I remind him, that I have seen grown men screaming in pain from a Strangulated Hernia, each time I catch him lifting something too heavy ....
So Congratulations Jilly much deserved for you’re wonderful efforts to bring MPN into focus literally on the Front Line....
Good Luck for the meeting, I am sure you will do really well.
Hi Maria, women warriors of the world unite 😂. I can’t say how nervous I am, of first of all speaking to the Members (will be thinking of them all in their underpants), but of getting my brain fog and completely forgetting what I am going to say or worse still not being able to get my words out. I will definitely be having idiot cards to read from. I doubt I will sleep much the night before. Thank you for the vote of confidence, it means so much xxxx
Oh Maria. What a lot you’re coping with! I had my hip replacement in April. My haematologist said platelets had to be below 500 before it could happen. This not just to reduce blood clot risk during and after surgery, but also as platelets spiked up because of the operation, ET overreact response to anything damage wise happening to body. Given you have all 3, possibly they will want the same for you?
I had to wait extra because of this, and then lockdown happened- ended up waiting another year…
Glad you have the option of going private. A lot of consultants who do NHS also work privately, you can check this. The ones that do will be less risk averse I think than those that only work privately, but I could be wrong. Mine was willing to try get me on his ‘private ‘ list whilst remaining as NHS patient, if he couldn’t get me in soon at the NHS hospital, because I’d been waiting so long.
Excellent work, Jill! I know you’ll have put forward the case for MPN ers very well indeed and hope you get a chance to ask the questions on Tuesday. I really look forward to seeing the video when you can post the link. Good luck! xxxx Fran
Hello jilly - what a marvellous thing you have ‘signed up’ for - well done you - will certainly watch the video + am sure you will put our case across (I certainly feel - not withstanding covid! - we are pretty much left to it at the best of times) good luck. Anne-Marie x
Well done Jill for representing us, I would to see it when it becomes available. I was not aware until seeing your post that some with blood Cancer did not have antibodies after being fully vaccinated.
Unfortunately yes luv, right after I learnt I had no antibodies after doing a test supplied by the Government and Kings College (I think), there was a lady on the Lorraine show who had another rare blood cancer and she had tested negative as well. She said people who tested negative have been forgotten. Nothing has been said or done to help them. It’s not just us that are effected but our families who still have to shelter with us to keep us safe. I feel so guilty that my husband’s life is so limited because of my illness.
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