Many of you will have seen the Princess of Wales is having preventative chemotherapy for cancer. It must have been very difficult for her to speak about when still trying to digest the information herself.
I rarely tell anyone I am suffering from a cancer, I usually say I have a bone marrow disease. At the moment I look, and feel, very well. Nobody knows what MF is anyway! It’s not like saying you have breast or lung cancer, people have heard of those. I have a friend with Multiple Myeloma she had heard of it while having treatment at hospital (she’s on a trial drug, successful so far) My niece is a specialist bowel cancer nurse she’s never heard of it either.
I don’t know whether I don’t say I have cancer so it makes it less real or because I’d have to explain exactly what it was.
The Princess hasn’t specified what cancer she has, which no doubt will lead to much speculation and conspiracy theories, I don’t wish cancer on anyone but I think people would talk about MPN’s more if someone famous was suffering from one!
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lizzziep
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I know exactly what you mean. I just tell people, when I have to, that my body makes too much blood and it can get too thick. I don’t really want to discuss it as it’s complicated and I think deep down I don’t want people to know the ins and outs or to see the shocked sympathetic look if you mention the cancer word.
Here’s wishing anyone having treatment including the Princess of Wales a speedy recovery
Sure everyone is hoping for the very best for Princess of Wales,she is an amazing lovely woman,a credit to the Royal family.I get sooooo fatigued with my MF ,I have to explain to people when I nearly pass out.In the supermarché I have problems stopping the staff sending for our pompiers when I nearly fall in the chariot!!!! Try not to go shopping unless I know it’s a good day to keep going.
Hi Anouchka,It’s me Inca /Sally who lives in France! I am in Lot et Garonne, had friends living near Carcassonne so we were often in that area.They went back to U K as so many do.Are you treated in Carcassonne or Toulouse? I am MF now after 13 yrs of P V. I am looked after in the main hospital Agen ,but have had times in Toulouse too.Best wishes to you not many M P Ners near me!Sally
Hi Inca/Sally, I’m treated by hematology/oncology in Carcassonne. I’m hoping I remain PV and haematologist says evolving either MF or ET slim. 🤞🤞 Have UK friend with MF and second home here who visits regularly, but don’t think she’s an MPNer despite my pointing her in this direction. Chacune son “goût”.
Best wishes to you too. Thanks for the reply. Ineke/Anouchka
I agree with the sentiment that if a high profile person had experience with an MPN and talked about it then it would make it easier for us to talk about it.
Only my best friends know and that’s because my best friend’s wife is now battling her third cancer (breast, breast, lung - 20 years apart) and we were discussing immunotherapy drugs and advances in medicine. MPNs are so rare that there is always a lot of explaining to do - also as “chronic” cancers these present very differently from what most people are familiar with as cancers. I personally feel the “c” label has actually been good for MPNs as it has driven more interest and funding and research into the area.
What I say depends on the context and who I am talking to. In general, it is some variation on "I have a type of blood cancer called Polycythemia Vera. It is a chronic form of cancer that causes my body to make too many blood cells and too many inflammatory cytokines." Depending on why I am having that discussion, I may go into more detail. I have found that I sometimes need to explain PV to new doctors who may not be familiar with MPNs. That is usually a more detailed conversation.
I agree that having a famous person discuss having a MPN would help with awareness; however, raising awareness is something we can all do. Blood Cancer Awareness Month is in September every year. There are opportunities for public speaking or just wear a t-shirt or button to stimulate conversations. Last year, a number of us told our stories which were posted on the Internet. youtube.com/@PharmaEssentia We can all have opportunities to raise awareness if we choose to pursue them.
Your posts are always so helpful hunter and I have just watched the videos too thank you. These are very inspirational.. makes me determined to push through to the better days ahead once I get on track. I haven't had very good care the past 6 months and I have advocated and learned for myself. Now I have amazing care with a top mpn tea that have just taken over my case and the emotion of being able to trust that care is overwhelming. I don't feel so alone.
Hi Lizzxiep I cried a lot when I saw and heard our poor Princess speaking. It unearthed so many emotions inside me and my heart broke for her, for everyone going through cancer and everyone who is touched by cancer. It had been an overwhelming week. I have PV and interferon isn't working for me. I am to have another bmb and ultra sound in the next couple of weeks and the wonderful consultants at Guys will discuss my case and the next steps. I am so scared and reality of this has really hit me hard this week. I feel such a fraud for feeling this way as others are so much worse off than I am. I had an aggressive breast cancer when I was 36 and somehow that was easier to explain to people so I completely understand how having blood cancer can be so difficult to speak about. My heartfelt thoughts go out to everyone affected. X
I understand what you are saying and I also understand why the princess has kept her diagnosis private. In my own instance, I find it so difficult to discuss my MF. I have only told those who need to know. I carry on at work as normal, but the internal struggle is real. I am starting to feel more and more fatigued and emotional , but outwardly want to appear as strong as I have always been. I suppose I don’t want people to treat me any differently, or discuss my illness. I believe I am quite honest with myself about the outcome of this, but am protecting my family, as I see the shock and horror on their faces if I discuss anything relating to my illness or passing. Listening to HRH open up, broke my heart for her family, but it also made me think about my on approach to sharing my condition. Take care . Penny
I know the feeling. ET and Mpns in general are not well known and even the haemotologist I see doesn't know why they come about hence the term essential in ET. They're also usually classed as less aggressive cancers and the statistics of people suffering from mpns in general is low.
While I have read the literature advising of the most common issues like fatigue etc, what people/research don't say is the quality of life one endures. Apparently, most people with mpns live to the same age as those without mpns (assuming it doesn't develop to a more serious cancer) but they obviously don't have the same quality of life.
Even when I explain it to friends you can see they don't understand it. They say "oh but it's not leukaemia is it"?
Sometimes I want to bury my head in the sand and pretend I don't have it either.
It's hard to be told you have cancer at any age. I was diagnosed at 40 but had symptoms leading up to my diagnosis. At the time I had small kids so my husband was very supportive and I kept it a secret too. It really doesn't matter if you tell anyone or not it's your business if you do. The biggest issue I think is managing it as I have found some days sre good others are not and I don't know why.
I too agree that unless someone famous talks about a disease of any kind it's usually sweeped under the carpet.
I totally agree with your comments, I think you speak for most of us. It is difficult to explain, how we feel and unless you've experience the physical and emotional effects, I think, some just think, the side effects don't seem too bad. They certainly do affect our quality of life and I resonate with your description of good days & not so good days.
Hi. I know what you mean. I say I have a blood disorder. I think I say that as I think the word cancer panics other people. If someone asks for more information I give a brief description. Close friends and family know more.
wishing her well and full recovery. Probably had womens trouble and something removed that went to be analysed that showed cancer present in biopsy . I say I have dodgy blood of anyone asks. I have had ET for 10 plus years . Wishing everyone one well and good health .
Firstly I hope you are well & I totally agree with what you have written, this is how I feel about having ET, it’s reassuring to know I am not the only one that feels that this type of cancer should be recognised & understood & needs to be more in the public eye.
I hope you enjoy a relaxing Sunday & thank you for sharing X
Thank you for posting your thoughts and experiences. I definitely resonate xx I also say, I have a rare bonemarrow disorder. Outwardly I do look to be OK andI get through a work day, and then kinda give in. I also agree with your comment on talking about it all, as a cancer and the needed for an improved understanding of MPNs. I'd not heard of it, until my diagnosis.
I've had 18 interferon injections so far and hoping they soon start to improve my platelets levels, so I can reduce the dose. I'm telling myself, it's a marathon, not a sprint and pushing on.
I wish the princess well, I think she is a brave and inspirational woman and I am disheartened by all of the social media speculation she has unfortunately had to face.
I don’t tend to tell people about my ET, close friends and family know but I don’t think it’s anyone else’s business! If I do refer to it then I call it my “funky blood” which makes those in the know smile (even my haematologist knows that’s what I call it!) and actually I’ve found that people don’t ask ask further questions (unless they’re medical and intrigued by my description!), which suits me!
I love that - ' funky blood'. In our family it was known when the children were growing up as 'Mum's dodgy blood'. It explained my hospital appointments and drugs and they just took it on board the same way they saw that a young cousin had type 1 diabetes and had to inject.
Hi Lizzie,I resonate completely with you all. Like many of you I found the Princesses speech so very touching and then began looking at me.I very rarely say to people I have a cancer (in my case 2 as have MDS too)) ..... it's so hard to explain. I do have a chronic cancer MF and no cure for me and maybe I should take the time to explain to people but do I want to be forever doing that as it's not easy to describe!! I will carry on .... now very fatigued more so later in the day.Thinking of you all.
Hi Champ, I too have MDS/MPN, so I have always thought the MDS was more serious of the two, and it probably is. I have always been mystified by the "thrombocytosis" without the "essential" tag. I just say I have blood cancer but seeing replies here, I think a bone marrow disorder would probably be more accurate. I have severe pain from compression fractures that have nothing to do with the blood cancer and at 79 I'm still expected to carry on as normal. I do try to get to bed at a reasonable time but that doesn't mean I sleep for quite a while, even with Pregabalin. On the other hand, I'm very sensitive to any drugs. Fatigue later in the day, though, must surely be due to how we push ourselves earlier on.
Hi Lynn,I too have 2 .....MDS/MPN and now I have some more letters to add it seems since my last BMB....T-cell LGL. I honestly prefer to tell only people who are close to me but tend not to go into any details or specifics.
We have just over 200 members in our Belgian FB group, and some of them have needed 5 or more years to get a correct diagnoses (and treatment). There are more then 6.000 rare diseases so this is not a complaint about our doctors. Younger doctors seem to be more aware of MPN. But creating awareness could help. We want to prepare an action for september to increase awareness. Tips on how to set this up are welcome.
I rarely ever talk about my PV with relatives, friends or colleagues. I was diagnosed some 36 years ago and internet did not exist at the time. So I could not study the subject. But even now, it is complicated, and you loose your audience very quickly.
Yes it's strange isn't it, nobody ever asked how you are with an mpn, yet if anyone else gets cancer it is discussed and commented on regularly. My sisters remark says it all, you are ok, you are not going to die with it. Let's hope she is right.
Like you, I do not make a point of telling people I have blood cancer. I never told my late sister what I had as she would have taken it very badly. I have lived with it for a dozen years now, only when famous people bravely speak out, it reminds me, oh yes, I have it too!! Love E x
I felt incredibly sad for HRH as she sat alone. I understand the press forced her into this video, but wondered why William or her mother didn’t sit with her. Maybe she didn’t feel she wanted that. I enjoy following the Royals, and hope they all beat this, for me, that would be inspiring.
I am the opposite, love to tell people about my rare blood cancer and they are really interested and like to be informed about the detail. As I am very active I think it inspires people in such a way as 'Wow, if she has cancer and has just managed that 50 mile bike ride today there is hope for us all'. Of course I use it to my advantage, when rocking up to the tea rooms my cycling buddies always let me go to the front now to order first (possibly because I tell them the condition causes fatigue and I need to eat very regularly and large amounts to counteract it....naughty I know). Generally my friends treat the diagnosis with respect but do not over do the sympathy, in the north of England we tend to use sarcastic humour in these situations something folk from the south find a bit weird. My view is the more we get the word out there the more people will become educated . My husband had motor neurone disease and at the time it was not commonly heard of but now since high end sports people have been inflicted by this dreadful condition everyone knows about it. The result is that the charity MNDA receives so many more donations and therefore is able to fund more research into treatments and perhaps one day a cure. So for me, SHOUT IT FROM THE ROOF TOPS, unless of course you are a very private person. Best wishes.
Ha ha, I am familiar with that one as I visit Yorkshire regularly and my late husband was a Yorkshireman, also moving in the farming and equine communities the 'lingo' can be quite entertaining if not challenging...I love it.
I’m very moved by all of your sentiments for the Princess and kind thoughts in general regarding MPNs. I live in the States in the Portland Oregon area and was diagnosed with an MPN in 2004. At present PV. My labs have been good and to my Dr. I am known as a boring patient, which is good. But there are times when I just need to reach out to others who know the fatigue and other annoyances that we’re dealing with. My kind thoughts to the Princess and all of you who have warmed my heart.
I know what you mean. I have PV, diagnosed last August. I’m leaning to call it blood cancer, not just cancer, but it’s the last thing I’ll say, as the “c” word is scary. So I call it “sticky blood”. I’ll say MPN and PV in full first, then describe as mentioned, say more if/as necessary.
I wish Catherine, Princes of Wales, the time, privacy and support she and her family need regarding her cancer diagnosis about which she has spoken so bravely. A public figure’s illness is not public property, and especially not when there are children involved.
I speak as the adult child of someone who lost her mum to breast cancer in 1946 when she was only 13 years old, her mum 46 - it’s scarred my mum for life.
I actually told someone today it was a cancer, my son’s father in law said he could see I was better now! I said actually no I’m not, I have a rare bone marrow cancer. He said he may get glaucoma in a few years! 😆
Way back in 1985 I had to go to haematology every day for about a fortnight for tests while they tried to work out what was wrong with me. They just didn't see younger people with it then. I struggled to find childcare for my 1 year old and asked an in law to help one day. She genuinely couldn't but rather spoilt it by adding ' I don't have time to be ill'. We decided then to keep the diagnosis to ourselves other than my parents. The treatment I had then for ET was very aggressive - massive doses of busulphan as my platelets were horrendously high - so we were very frightened, but then followed many years of HU. In fact keeping it quiet worked for us until I started struggling with fatigue and drug side effects but even then when I told friends they were kind but because I looked 'well' didn't really take the problem onboard. I've had to be very firm sometimes about what I can and can't do and use the 'spoon theory' to explain. In fact having to shield during covid possibly was oddly helpful as I had to emphasize I am now immunocompromised and wasn't going to take risks and then I think the penny dropped!
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