Upsetting experience

[jillydabrat]

I had an appointment for my 8 weekly check up with my haemotologist and I ended up sitting to a rather agitated man in the waiting room. He had also come to see the haemotologist with a letter which he proceeded to show me to see if I knew what it meant. The letter basically said that he had a myeoloproliferative disorder. He didn't know what that meant. I told him that there were 3 disorders , I said PV and ET and as soon as I said ET he exclaimed that that was what he had been told he had. He described the typical numbness in the feet, the joint pain, the dizziness and itching. I told him I had PV and, yes, I had all the same symptoms. What was distressing him the most was when he was prescribed Hydroxy and he saw that it was a chemotherapy medication he was immediately upset of the thought of cancer. You can imagine how angry I felt when he told me that the doctor told him that he categorically did not have cancer. He couldn't understand why he was then prescribed a chemotherapy drug. He had been worrying about this for over a week. I told him that, in fact, ET and PV had been classified as a cancer by the World Health Authority since 2011. Although not a cancer in the normal sense of the word, it was classified as cancer because of the over production of red blood cells. He had been on hydroxy for only a week so hadn't had the benefit of it yet but I did assure him that the drug had helped me no end and had stabilized my bloods so they were near enough normal. All he wanted was assurance that he hadn't got a terminal illness. I actually took his hand and told him that only in rare cases does the illness develop on to the next stage and that in a short time the hydroxy would do the same for him that it had for me. He had actually looked on line but thought he had got the wrong name for his illness because of the doctors assurance that he didn't have cancer yet all the information said it was. He was so distressed at not knowing the truth that I was quite angry. I actually said to my haemotologist that isn't it about time that all doctors were brought upto date with the disease so they can inform their patients correctly instead of people having to find out by discovering they are being prescribed chemotherapy medication. This is the way I found out, only when I saw the box and asked the doctor if I had cancer did he bother to tell me. Not good. Anyway, I wrote this website down so he could find all the answered and assurances he so desperately needs.

[piggie50]

Good for you jillydabrat,

What a blessing that he happened to be sitting next to you. I wonder how many other people go through the same situation. I hope he joins the forum and gets all the help and advice he needs here.

Judy x

[mhos61]

Hi Jill, I totally agree about the medical profession being brought up to date. I work part time and informed my head of department that I had been diagnosed with Essential Thrombocythemia and informed them that this was a blood cancer. I had to see the company doctor and prior to my appointment I got a phone call to ask if I had a letter that confirmed my diagnosis was indeed a blood cancer (I did). When I had my appointment with the company doctor he actually said and I quote, 'I have been educated today.' He had no idea of the reclassification of MPNs? At least he was honest.

Mary x

[sksar in reply to mhos61]

Hi Jilly, How lucky was he to be sitting next to you. Having just read your post it would appear that you have done as good a job of explanation as any doctor or consultant could have done - and for free!! I had a similar experience to his when diagnosed, although it was explained to be that I had ET and what that was, the `c` word was not mentioned, so I had a bit of a shock when I opened the folder they had given me on leaving to see a McMillan leaflet prominently displayed inside. I did ask the question later " is ET a cancer" and the answer was yes, but........ further explanation ensued. By that time though I had done my own research and joined this forum.

Well done Jilly.

[Superwoman]

You know what I get so fed up with doctors not recognising our conditions had to get Maz to send me some booklets to give to my own GP surgery. So if it is not a CANCER why give us a chemotherapy drug even though it is a mild form of chemo.

I feel for that man, when I was told I had an MPN I was devastated, I suppose there is no easy way to tell anyone, but to say it is not a cancer is so untrue , so let's hope he looks on this website and finds us few and then he will not feel so alone.

So Jilly you are a kind caring person to have sat there and listened to this man, and to even hold his hand, but at least you have pointed him in the right direction of us who are not alone but have each other.

Jean x

[Aime]

Well done, thank goodness for his sake you were there. That is a terrible way to treat a human being, hopefully he'll contact the forum and get even more support. Kindest regards Aime xx😺😺

[harleydavidson]

Well done Jillydabrat x

[RobinBrum]

Good for you. What I find more than irritating is the coyness of the medical profession in dribbling information out to you, step by step. Or sometimes, depending on the doctor, in vastly complicated technical speak. Of course it is hugely upsetting to realise that a MPN is in fact a blood cancer. Personally I would far rather get all the information I need rather than have to drag it out of my doctors, stumble on it myself, or scare myself witless reading information online. Right now I have shifted to MF from what was previously seen as PV (but might well have been ET). And I still do not know at what level I am at. But even getting to that stage of information was tortuous.

The other side of the argument is that UK hard-pressed NHS staff have to deal with this every day, and it is largely a matter of interpreting readings. So of course we become sets of numbers. Of course they then prescribe fixed courses of action to follow, following on those numbers. This process detaches medical staff from the emotional side of things - it has to. We are are human beings, sharply confronted with the realisation that we face an insoluble challenge. They have to deal with this every day.

[jillydabrat]

Thank you for your lovely responses. I thought about that man all night wondering if he had finally got the correct information from his doctor. I can't get over the distress I saw in him and the anger I felt. Nobody wants the tag of cancer but what we all want is the truth about our diagnosis and more than that, we want the doctor who talks to us to know what they are talking about. I must have talked to him for 20 minutes trying to explain how Veno-sections work (he hadn't been told about them), what the hydroxy does and how, with regular check ups he will lead a normal life, albeit with achy joints and tiredness. I hope to see him in the waiting room again soon to see how he is coping.

[conno61]

Well done to you .

I've just left a message with my macmillan nurse to phone me as I'm not happy at all with my haemotologist attitude. He doesn't explain my bloods, I have to ask himwhat my count is and he says ET isn't a cancer . Well according to the World health organisation it is ! he doesn't seem to take this condition seriously and the final straw was last Friday when he asked how I'd been. well if you had bothered to look at your screen you would have seen I had been referred by my surgeon who is removing my kidney due to cancer !

He looked shocked when I said I'd been crap and asked him if he even knew why I was there !

Think I need a new doctor too !

[jillydabrat in reply to conno61]

OMG Conno, another Haemo not knowing that ET has been classified as a cancer! It's really scary that a consultant does not keep up todate on these things. Definitely look for another consultant because what you have described is just not good enough. I had to drop out of the Newcastle Forum at the last minute because my mother was ill but I was going to ask, during the question and answer section, why there is so much diversity in attitude to these disorders. There really needs to be a huge drive to make sure all GP's and even consultants bring themselves up to speed with these disorders because I am really tired and annoyed at the stories where doctors just don't know that these are classified as a cancer. It really isn't good enough.

[conno61 in reply to jillydabrat]

Too right jilly.

I have to educate my gp about ET !

I think doctors really need to get a grip on this subject as the lack of knowledge is woeful !!!

[mhos61]

It's bad enough GPs not knowing that ET is a blood cancer but absolutely ridiculous that your haematologist claims ET is not a cancer!

[Mallard]

My GP categorically dismisses my ET as a cancer. When I mentioned to the nurse at my last Consultant appointment I was fatigued, the reply was 'thats life'. They couldn't get me in and out fast enough. Lonely journey this MPN.

[Mardi in reply to Mallard]

Ignorance and lack of compassion. Your fatigue is much more than tiredness I presume. All the best.

[jillydabrat]

I am going to print out lots of pages that state the WHO classified these disorders as a cancer then when my GP, nurse, or any other consultant states it is not a cancer I am going to whip it out and ask them to read what the regulating body of all health conditions says it is and ask them to bring themselves up to date on it before telling me what I don't have. It seems like we all have this battle and it's the last thing we need. Let's get them told folks x

[jillydabrat in reply to jillydabrat]

Forgot to add that because my blood levels were so good due to the hydroxy my GP actually told me "Looking at these blood results Mrs Danson, it looks like you don't have PV at the moment". I could have fallen through the floor that he would say that knowing it is a chronic, incurable condition.

[mol56 in reply to jillydabrat]

It was encouraging to read about your experience at out-patients. Good for you and am so glad you gave the gentleman details about MPN VOICE. Where would we be without it, I wonder.

I feel that there is plenty of support for patients with acute cancers of all kinds (and quite rightly so), but little for those of us with chronic blood cancers.