Hi everyone so this all started a couple of months before Christmas 2022. I found a lump on my neck that turned out to be nothing to worry about. Had bloods done before the neck scan and came up with high platelets, haematologist asked for a second blood test after 3 months my platelets were higher the consultant wasn’t too concerned and changed my 2week rule to routine appointment, but as I was losing a little weight as well asked my G.P to arrange a JAK2 blood test to speed things up if it came back positive. So saw my results last week on my nhs app I didn’t even get a call from the Dr they just filed the results and said no further action??! I was terrified I called the surgery and asked to get a call back from a Dr which they did that afternoon, the dr that spoke to me on the phone said to me that he didn’t know what the results meant! So explained a bit of my background as this dr wasn’t the one that had ordered the blood test and I asked him to send the results to the consultant. I don’t trust them to do this so I had to look for phone numbers and call the haematology department of the hospital that was following me, spoke to a lovely lady cancer care manager that could not believe that the dr didn’t know what the results meant. Anyway she asked me to leave it with her that she would pass the information on to the consultant. Had a phone call this evening to say that the consultant would like to see me this Thursday. I just felt lost and didn’t know what to do I had to fight for the appointment myself, don’t know what’s going to happen next but very scared
Oh @Liliana a great big welcome and thanks for this catalogue of events.
I remember my GP telling me that I had to take responsibility for my medical history, now I know what she meant.
Yes, it feels a scary, fight sometimes.
Your are now part of our forum family and if you would like to talk to someone the Blood Cancer UK support line are there for you on 0808 888 2080.
Please let us know how you get on on Thursday.
Look after and be kind to yourself you are naturally in shock and scared.
I read this thread with interest and recognise similar elements.
I’ve indicated elsewhere that the NHS silo mentally on patient data is in my mind dangerous. Primary care GP’s are not the NHS and their digital data systems cannot access the NHS Trusts. My Haemo Oncologist doesnt have access to my Primary Care records and vice versa. I’m cc’d into periodic post consultation written reports so some info is transferred but limited.
An example would be my GP being informed of my FBC numbers but no reference to my medication therapy. He asked me on what drugs I was on as he had no idea and with Covid and Immune shielding had been face to face with me for nearly 2 years.
I’m still sharp and by education medically savi. I jest that every time I’ve been Ill or treated I’ve been there. If not the linking GP to Infirmary re my full med history would I fear fail.
Ah sorry Guys a bit of Peripheral Neuropothy fat finger. I continue
My GP’s records as provided where thorough but not complete with no knowledge of the final diagnosis of what had been Myloma or my meds. I have in fact been treated for Waldenstroms Macroglobulinemia. I filled in the gaps and he was grateful. His words “you’ve got a good handle on things”
He informed me that Diabetics had reported Hypertension.
It was me that pointed out the contraindications of Ibrutinib, which he had not experienced (it’s a hospital only drug), and the ACE inhibitors he prescribed carry a high AF risk.
I by experience and habit record my vital stats. If I didn’t or my memory fails I’ve written my full history and relevant observations. I have full respect and confidence for my GP and my consultant, it’s the NHS communications or lack of that cause the risk and potential stress.
A final twist is my GP retired last week. Needless to say all those records and my personal health diary will be on my new GP’s desk with a face to face meeting.
We shouldn’t have to fill the gaps but if not we could spite our own face.
Hi Liliana, so sorry you’re going through all this uncertainty at the moment! It’s good to hear you have an appointment tomorrow! If you want to talk things through with us on the support line before or after your appointment, please do give us a call on 0808 2080 888. We’re here to talk things through with you and talk through what the possible next steps might look like, if it might be helpful.
Welcome to the forum and well done for sticking to your guns and getting an appointment with a consultant. Hopefully you will get the care and attention you need from the hospital going forward.
I had a similar situation with some blood tests to rule out secondary causes of osteoporosis. The tests came back negative and were reviewed by the ordering GP. He marked them “no further action” and totally forgot his ‘action plan’ which was to prescribe medicine for osteoporsis if the tests were negative.
Hopefully you will have seen the consultant by now and been reassured. Although my JAK2 is shown as positive it is only at 5% and i was told this is too low to be the cause of my increased platelet count. This is at the lowest level that the lab doing the test checks to. In my case they have checked everything and there is nor reason for my high platelet count which i understand happens quite often.
All the best