“And now for something completely different “
To quote Monty Python.
I’ve succeeded in irritating my Haematologist and my GP.
I was diagnosed with high blood pressure and cholesterol.
I started getting leg pain ( Intermittent Claudication) caused by many years of heavy smoking. I stopped over 20 years ago.
He suggested aspirin and statins and wrote this on a piece of scrap paper to give to my Haematologist!! Hardly professional.
My Haematologist said quite plainly that she could not condone the use of either and told me to ask my gp for meds for my blood pressure. Which I did. He asked me what the Haematologist said about aspirin and statins and I told him, he said I must have misunderstood, I assured him I hadn’t, he had a letter from her that said something completely different, she said cholesterol therapy and anti platelet medication had no contraindications. He must have written to her again because he gave me a copy of a really snotty reply totally denying saying any such thing.
I just don’t understand why she did that
The blood pressure meds Amlodopine clash with the Clarithromycin that I take for frequent sinus infections, I queried this with my GP who said it probably wouldn’t matter. He’d forgotten that he had increased the dose from 5mg to 10 mg daily.
I had another sinus infection at the time, and told him that there was a clear warning on the instructions that they should not be taken togethe, also a warning on the site Drugs.com. Where it advised adverse interaction between the two drugs and asked for another antibiotic, I asked for Co-Amoxiclav which the ENT Consultant I had seen many times on a private basis recommended. He talked it down and prescribed Amoxicillin instead.
I had an appt to see the ENT chap the next day who gave me a proper examination, camera in my sinuses etc and gave me the medication that he thought more appropriate. He sent a letter to my gp which no doubt annoyed him.
I might add that I have gtreat confidence in the Consultant I see privately, he’s the person that first suggested to my previous gp that as I was getting so many infections there must be a problem with my immune system, which he ignored repeatedly even when another gp saw the results of my blood test and phoned me late one evening to say I had a bone marrow problem!!
I finally got diagnosed privately to the Haematologist I’m now seeing on the NHS through the ENT Consultant.
I’ve spent a very large amount of my saving on private medicine but it’s been well worth the price or I wouldnt be here.
I saw my gp tonight for a blood pressure test and it’s lowered, he yet again said whe was I going to do about the aspirin etc he recommended.
“I said I’m not going to take it” Even though my Haematologist denied it in letter form I can remember clearly what she said in my review
Oh well he said it’s your body.
I think gps sometimes forget that
It is mine and I’m reluctant to take any more drugs unless they are critically needed, when they are I’ll take them.
It’s a battle I one way or another for all of us
Hello @Blackhat,
Thank you so much for sharing your experience with your haematologist and GP. I am sorry to hear about your frustrations with your healthcare team and I can only imagine how difficult it must have been for you. Its really important that you feel confident and comfortable voicing any concerns you have with your GP and haematologist. How are you feeling now about the situation and do you have any advice for other members of the community who may be having similar experiences?
Yes I’ve a great deal of advice.
My GP is confrontational, aggressive and patronising.
He showed me a letter he had received from my haematologist which indicated that she was extremely irritated by the whole affair.
My GP must have written to her with some extremely disparaging remarks about me to warrent such a reply.
He has misquoted me probably deliberately as she said she was not qualified to make any recommendations regarding my Claudication and she had never given any opinions of her own in this matter.
This is correct, all she said to me was that I should go back to my gp and get blood pressure meds.
His suggestion of asprin and statins she ignored.
This was brought up again at my last consultation with him on Wednesday. I’m sure I wasn’t meant to see the letter she sent him, but he showed me anyway.
My blood pressure has gone down and he is sure my drastically changed diet will lower my cholesterol.
I did notice that during my consultation he had another patients records on the screen and was writing prescriptions for him!!!
As I got up to leave he asked me what I was going to do about taking aspirin/statins, I replied I’m not taking them
If any meds are critical to my health I’ll take them, but these are not.
His last comment was “ well it’s your body” I’m surprised he didn’t say “ ner ner ne ner ner” like we used to say in the school playground.
He was in a sulk when I left.
I’ll see another dr in future one that behaves like an adult.
I’m not concerned about his childish behaviour but very worried that his interference may affect the good relationship I’ve built up with my haematologist who I trust implicitly.
I did email a copy to the Chief Trust Chemotherapy Matron for her advice, she has been of great help to me in the past.
She replied that my haematologist is a dedicated professional and this certainly would not affect her good relationship we have built up over the years, put it all behind me and forget about it. That’s what I’ll do.
My advise to all blood cancer patients when consulting your gp whatever they are like, be very careful what you say, they are not your friend your just another body to be dealt with. Don’t let them intimidate you either.
It’s your body, often gps forget that.
I have bypassed my GP for the past 5 years post diagnosis. Apart from anything else it is easier to get to see my haemato-oncologist in London than him 10 minutes down the road!
A couple of months back when a cold virus coupled with the flue vaccine was heading for my chest I went to see him to prescribe me Augmentin 650mg (Co-Amaxiclav). He dutifully obeyed without question.
Well, well! At last he recognises me as a professional patient - something I hasten to add that I never actually wanted to be.
I normally go straight to the private ent specialist when I have one of my frequent sinus infections as he knows exactly what to prescribe ie Augmentin.
I told my gp that’s what I needed and what the ent chap had previously recommended.
But no he disagreed and prescribed plain Amoxicillin which won’t work, I should know I’ve experienced it’s ineffectiveness in the past.
I got what I need the next day on a private basis.
I have absolutely no confidence in my gp and rarely consult him.
You are extremely fortunate to be able to get easy access to your specialist.
Not at all possible out in the sticks.
Best wishes
Anthony
I have not seen my gp at all since being diagnosed.
Dear Alfie,
I know exactly how you feel.
I had a very nice but totally incompetent GP for many years.
I had three years of frequent sinus infections back to back, as many as 6 per year.
He put it down to bad luck!!
I mentioned previously that I’d been seeing a private ENT consultant who advised my Dr that it was possible I had an immune system problem, my gp ignored that even when I started having heavy nosebleeds. A full blood count revealed I had a bone marrow problem, that he dismissed too.
I went private and was diagnosed within a week with MDS RAEB2.
I was furious and like you I had a rant, it’s very understandable that you are. It’s a natural reaction.
I put in a formal complaint about the gp which was met with great hostility and went precisely nowhere.
The Haematologist who diagnosed me privately now treats me successfully on the NHS, 53monthly cycles 5 days in every 28.
I’m reviewed every 3 months and I do have a very good relationship with her, as with the clinic staff who administer the treatment which is still effective.
I’ve read of other blood cancer patients who are experiencing a lack of communication in different parts of the country.
Cancer treatment seems prone to a post code lottery, which is appalling.
You are very fortunate to have a supportive partner, I haven’t. I now live alone and get no support from any of my 4 children.
I can understand your despair, it’s a lonely road we travel.
We’re you given access to a Clinical Practice Nurse to contact with any problems? If you weren’t ask for one.
What you are experiencing is totally unexeptable.
Kick up a fuss, complain, they’ll treat you with the respect you’re entitled to.
I’ve had issues with my hospital and complained, it’s always had the desired effect.
Good luck and best wishes
Anthony
Thank you for your reply, It helps to know I am not alone in finding the system difficult to cope with sometimes.
Good for you.
I think it’s outrageous that you should be cast adrift with no support, to receive you diagnosis by telephone is appalling.
Like you I’m very much aware that my life expectancy is limited and this is very frightening.
Question everything, it’s your life you’re fighting for.
The medical profession appear to forget that they are there for our benefit not the reverse.
If you are persistent you’ll get the answers you need and the support that you should be receiving.
Never give up.
Good luck
Anthony
Thank you for your words of encouragement, they mean a lot.
I was diagnosed with essential thrombocythemia in November last year and since then I have had a constant sinus infection I have always been prone to them but they have never lasted this long . I have had two courses of co-amoxiclav and they have not helped . I have also had a chest infection since just before xmas which has exasperated my asthma and I have also had antibiotics for that but my asthma doesn’t seem to be improving despite this so I was prescribed steroids today and also a steroid nasal spray. I’m just wondering do you think these prolonged infections are lasting so long because of my immune system being low because of the blood cancer . I have asked my doctor about this a few times but he just dismisses it. I am seeing my haematologist next month so I’m going to ask him . I am also waiting for an appointment to see a ent doctor. Sorry you are having such a hard time with your doctor , it really is true that we feel so alone with our diagnosis of blood cancer . Doctors don’t seem to understand our worries or concerns or don’t really have any knowledge of our conditions
You’re correct about GPs showing no understanding or even empathy towards blood cancer patients.
When I was first diagnosed in 2014 I saw my GP and expressed my anxiety and fear about my incurable condition and my life expectancy being cut short, his answer was “ I don’t think there’s any point in worrying about something you can’t do anything about”
I replied “ if it happens to you in the future I wonder if you’ll feel the same”
Then I left!!
Sorry to hear you are suffering with these infections.
Nicberry1 and Alfie,
Actually I was reliably informed that a GP would only see 1-2 blood cancer patients in a life time of practice because they are unaware of the symptoms.
You both obviously know a great deal more than your GP and you know what’s right for you.
My own GP is an arrogant, confrontational patronising bully, as with all bullies one has to stand up to them.
I give as good as I get, like you Alfie I’ve gained a reputation of being an awkward person to deal with.
Don’t be intimidated by your GP.
Incidentally it’s worth becoming a member of MDS Support Group where there is a huge amount of information relating to blood cancer, 137 varieties in total. In fact they are trying to promote awareness amongst GPS how to recognise blood cancer. I did obtain a quantity of fact sheets from them aimed at GPS and distributed them to the three practices in my PCT
I’ve often talked to Macmillan Support Nurses, who are very helpful.
Hi, I stand corrected 
You’ve got it in one Alfie, that’s why MDS Support .Org has been campaigning to raise awareness of blood cancer amongst GPS.
I suspect many blood cancer patients are dying from infections due to immune system deficiency before blood cancer is diagnosed.
Both you and I were aware there was something amiss and took steps to find out.
Many don’t unfortunately.
Post how your treatment progresses.
Good luck and best wishes
Anthony 
I recently read a profile of a myeloma patient.
Hi Alfie, The gp at my surgery who told me over the phone it was probable I had blood cancer admited to me he had never heard of essential thrombocythemia before . He told me he left my phone call to the very last patient of the day as he had to google my condition to find out more about it as it is a very complex case. I appreciated his honesty and told him it was ok as I was waiting on my appointment for my first haematology appointment at that time but since I have seen her and she has written to my surgery to explain my condition I have not had any real acknowledgement from them about it and a couple of times I have been since diagnosis and tried to explain my worries and fears for my future they have not been very helpful. Luckily where I live we have a support group through the McMillan cancer nurses at a place called maggie’s centre and they have a meeting every month or so or I can just pop into the centre anytime or day I like and get advise and support there . I also have to see my haematologist every three months now and I’m due to see her next month so I have a few questions I want to ask her septa’s I have been very symptomatic dice xmas. I also have just received an appointment for ent so i will hopefully get some answers from them as well
Black hat.
Good for you lol with that answer. Yes your right not many gp’s have heard or seen anyone with blood cancer and like you I am a great advocate for my own health and I’m usually quite pushy on my health when I feel something isn’t quite right. I think the reason I have not been as pushy with this is because I know they don’t know much about it and I get my support from elsewhere ie… the McMillan nurses and the maggie’s centre but I am going to be more insistent in future if I feel they are not listening as as you say we know a lot more about our condition than they do . I have done a lot of reading and research into this so I know in general what I am talking about when it comes to this
Black hat. Alfie…
I only found out I had ET because I was having blood test for something else around February last year and every time the results came back the were noticing my platelets were high and were rising every time then I had the blood test for the jak2 mutation and it came back positive they then contacted the haematologist at my local hospital and I was then referred to her and was diagnosed in November 2018