After weeks of trying to get my GP practice to listen my GP rang this morning and apologised for not recognising I am a cancer patient on a PARP inhibitor. She accepted they should have had me on their shielded list from the start and will now amend their records accordingly. So that I can get the vaccine when im due. Stick to yr guns ladies if you dont get the care you deserve and are entitled to.
Finally my GP listened!: After weeks of trying to... - My Ovacome
Finally my GP listened!
Written by
Katmal-UK
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Well done! Tenacity paid off. Ridiculous that you were not listed initially, parp inhibitors are on the first named shielders. I could make a case for people with a brca mutation to be added as well. Inflammation and RNA viruses can cause double chain breaks in dna. Which can be a precursor for cell mutation. I know it is a long shot but I am convinced all my cancers (3) appeared after severe viral illnesses. However, I am able to work from home and shield so can wait for my vaccine. And I think they should consider that teachers and other essential workers should be ahead of some lucky healthy people. We will all get there in the end. Good luck with your vaccine x
Great news Kathy. However, it is worrying that you had to push so hard to get this sorted when it was clear from the outset that you should have been included on the practice 'shield' list. You have again highlighted the need for all of us to be advocates for ourselves and those we care about.
Great news Kathy, I heard from my GP yesterday who said that they are not going to be giving patients the vaccine, and that I will have to go to a locally set up hub 12 miles away, ridiculous when I am supposed to be shielding. I don't know if my GP surgery has opted not to give vaccines or it is a gov directive, either way it could really be organised much better, also why is the government not allowing chemists to administer the vaccine, surely the more people seen the better, my local chemist gives me my flu jab every year without incident ...............oh well rant over! hope we all get our jabs sooner rather than later.
You’re such an inspiration Kathy with your perseverance & knowledge. Thank you from the bottom of my heart for giving so many of us on here hope xxx
That’s good news Kathy ⭐️ but quite wrong that you had to go through all that aggravation to get recognition that you are a cancer patient! Hope you don’t have to wait to long for your vaccination. Wishing you a good 2021. Jenny x
Katmal-UK in reply to
I dont mind waiting just need to know I can get it when im supposed to. Tbh I believe there are ithers such as key workers and all blue light staff who shud get it first x
Well done Kathy, I am pleased that your GP has at last taken on board the situation regarding the parp inhibitor. Well done you. x
At last Kathy. But you should not have been made to go through the ordeal in the first place.Another hard fought victory. Well done.
Nicola Xx
Blimey! Well done for being persistent...!!!! Great that you will now get the vaccine but you should have benefited from all the previous advice and offers of help.. not to mention the supermarket delivery slots! So your GP should be grovelling...XX
Great news Katmal
Well done Kathy. It's just a shame you had to fight for it.Take care
Janet
Yay - happy to hear this! But sorry you had to go through all that though. Soooo frustrating. Hope you're keeping well xx
Very encouraging! i agree that you shouldn't have to persevere, but your perseverance will pay off - and continues to inspire others.
Fabulous news! I did have to get my MP involved right at the beginning of March lockdown, but she did a great job (although I don’t like her 🤣) and have been on the list since xx
Strap on your .45's as Sheryl Crow sings. It seems to be a modern 21 st Century thing not to listen and often not to read either. The guns may work! lol.
Well done, Kath, on getting this sorted out 💕. Love from Mel xx
Excellent news.It is difficult to believe that your GP had not read the advice that people in group 4 include anyone taking PARP inhibitors are considered to be extremely clinically vulnerable. I had my shielding letter ages ago as soon as I started on Olaparib. Good luck for the vaccine. xx
Yippee ,so pleased .xxCheryl
Really pleased for you Kathy well done for persevering. I cannot believe your GPS’ attitude or what you’ve had to go through just to get justifiably registered. Hoping you get the vaccine sooner rather than later. The NHS shielding letter says we should be vaccinated by mid February but who knows?!!Take care
Love and hugs
Claire xx
Well, we really ought to acknowledge that your GP actually had the grace to contact you and apologise, its not often a GP does that, so she's redeemed herself to some extent. Glad your fight to be recognised as vulnerable has at last been successful - I do wonder whether its because she simply did not know what a PARP inhibitor is. My surgery had never heard of them, much less my designated pharmacy,it seems they have no information on these drugs and GP's cannot prescribe them, nor a pharmacy supply them.I have no idea whether my GP knows I am listed as clinically vulnerable - I've had 'shielding' letters on at least 3 occasions throughout this pandemic direct from the government, but I don't think they are necessarily always triggered by a GP surgery.
Anyway, it must be a relief to finally be 'seen', well done for being persistent.
Miriam
Hi Miriam id like to acknowledge my GP calling me to apologise but she only called because I insisted that she call me to explain her decision for not recognising I am a cancer patient on a Parp and one who should be shielding. Basically its taken me since March.
Excellent news. It can be very frustrating getting through the bureaucracy and paperwork. Sweet victory when it does!
Well done Kathy. I think GP’s are having complex issues in managing their daily practice and Covid. Asking them to give vaccines is not necessarily an option for them due to storage, space issues and staffing. My GP practice does not take bloods for example in ‘normal’ times. When the hubs are set up for vaccination and testing it alleviates the added pressure from GP’s receptionists and clogged phone lines. Let’s hope it’s not too long before adequate vaccine supply. Good luck to everyone. Cheryl.
Hi Cheryl. The issue wasnt about getting the vaccine from the GP but getting my GP to recognise I am a cancer patient on a Parp. It took me since March unfortunately. X
Fantastic news!
Must be a relief for you. I don’t suppose your GP told you why she’d previously resisted? Never mind, you got there in the end.
No, when I asked her there was a sort of mumbled response.....
I've finally had the shielding/vulnerable letter - what's 6 months here or there? Interestingly, my twin sister, who does not have cancer, has been sent something (from NHS) to say she qualifies for the flu jab. Not me though. x
Beggars belief! You have to wonder how many other people are without support they need whilst others get offered all sorts whether they need it or not!
Well done Kathy. It is yet another example that shows that you have to be your own advocate. You are well capable 😁 but as you say others not so much and should not have to be like this ideally. As some said “don’t let the buggers bring you down”
Cheers
Fay
Good for you Kathy! Such a shame you have to be so persistent. I’m on a shielding list but don’t really think I should be now I’m only on letrozole and finished chemo nearly 2 years ago. I wonder if they look at BMI and Metformin prescription as part of the criteria. Glad I’m on it though as I do want the vaccine! Congratulations again!
Alex x
Hopefully Alex you will get the vaccine sooner rather than later. Hope you are doing ok x Kathy x
Just saying hi...You popped into my head! Keep safe! x
Hi! now that's a scary thought.... me popping into your head! I'm doing well thanks. Got my next check up on March 3rd but feeling good (well if you don't factor in I had an abcess and had a tooth taken out yesterday and feeling bit sorry for myself lol). I hope you and your family are all doing well? Have you had any vaccine yet? I had mine just over a week ago. Big Hug. Kathy xx
Glad to hear you are in good health, sorry about the tooth though! Got my vaccine on Friday morning, Harry had his three weeks ago. Just can’t wait until Spring arrives! x
HI KATHY,
JUST WONDERING HOW YOU'RE DOING AND DID YOU GET THE VACCINE?
HOPE YOU DID AND ARE STAYING SAFE-
LEE
Hello Kathy, I'm new here and have been reading all about you and you are an amazing woman. I too am braca 2 and had stage 3c ovarian cancer. I have been on Lynparza (olaparib) for 2 years and now I need to decide whether to go off of it or stay on it. How long have you been on it or how long were you on it, please. I have anemia but rest is good. Any information you can share with me would be greatly appreciated
Hi, I started on a trial at the very beginning of Jan 2014. the trial completed in June 2020 and I was offered the opportunity to continue with the trial protocol so to date I have been on Olaparib for just over 7.5 years. I continue to work fulltime and my CA125 remains below 3. I hope you make the decision that’s right for you x
You truly are an amazing woman and thank you for getting back to me. I hope you don't mind answering few more questions. Are you getting blood work done each month. Have any of the side effects gotten worse since you have been on it this long or any new ones? I want to continue because I have not had any recurrences and believe it is due to Olaparib but they just haven't given anymore data yet.
Hi, I have blood work done every 12 weeks and scans every 24 weeks which is the trial protocol. No new side effects, if anything the side effects diminish with time and no new ones. I’m also taking part in research to see why I’m doing so well. That just involves the hospital taking extra bloods then freezing it and doing what they need to, all a bit above me lol. I could have stopped taking the Olaparib but it’s given me my longest NED (8 years at end of Aug) and to be honest this is my third trial drug and by far the easiest with regard to side effects. X
Kathy was Suzanne's inspiration when she (Kathy) had been taking olaparib successfully for nearly 4 years back in late 2017. Like you and Kathy, Suzanne is BRCA2 and we took so much hope from Kathy's story.
Suzanne has now been taking olaparib for nearly 4 years herself with no further recurrences and no side effects to speak of, so long may she continue to follow in Kathy's footsteps.
Suzanne's oncologist has suggested that she might be considered cured after 5 years and, at that point, they would consider discontinuing the olaparib. This would be a difficult decision as, if the PARPs are no longer being inhibited, is it possible that tumour growth might restart?
PS Like you, Suzanne loves cats!
Thank You Woody for sharing Suzanne story with me too. This is a tough decision and was just trying to find woman who have been on olaparib longer than 2 years and their stories. My husband is not crazy about me wanting to stay on it but will support any decision I make. He just worries about the minor side effects I have and because of no data past the 2 year whether it is doing me any good or more harm.So thank you again and tell Suzanne that it sounds like she is going great too!!
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