I ended up at our walk in PCAS centre last night as I cut finger and because I’m on anti coagulants it wouldn’t stop bleeding - the triage nurse asked me why I’m on them as I’m young to be in Warfarin and when I said ovarian c , I got the head tilt and look of pity/ doom- it gets to me every time - I’ve had it from just about every nurse or doctor outside of my oncologist since diagnosis and it really adds to the feelings that I might as well start digging a hole in the garden - it’s udialky followed by an interrogation about symptoms and didn’t I know something was wrong ( like you’d deliberately let it get to stage 3 ) or else the sucking in of breath followed by “ it’s the silent killer, you know !” I know the odds aren’t great but none of this helps me get through the living with it that I have to do in the here and now - anyone else had similar or feels like this ? I sometimes think cancer has made me too sensitive
Response from professionals : I ended up at our... - My Ovacome
Response from professionals
Yep. Get it all the time. Once saw someone I hadn't seen for a while and I was wearing my turban as I was bald - and had lost shed loads of weight and looked dreadful - and she just said, "Oh no. Not you.". Nice greeting - not.
On the plus side though, we didn't get our flight home yesterday because of strikes and I went to the airport to get another flight asap and was told there was nothing until next week. With my chemo and onc coming up next week I told the guy I would miss my appointments with them and he said, "Let's see what I can do." and got us on the plane for Sunday. Surprise, surprise. We'll probably be standing all the way but who cares.
Several people I thought were friends stopped calling or emailing when I was diagnosed last year but interestingly only those in France, not UK. It's a sad way to find out who our friends really are though.
Please don't get too upset about idiots. I just think of how I would react and would probably say something stupid too - although I hope I wouldn't. Take care xxx
Yeah I’ve had both good and bad responses from professionals and like Kryssy found out who my true friends are! Some people I’ve been close to for years haven’t been seen for dust! It’s amazed me at times!
But my true friends have pulled me through, made me laugh and been there all the way and that’s what counts
Part of the reason I’m using the cold cap this time round is so I don’t get the pitying looks and head tilts from everyone I meet like I did when I lost all my hair!
To be fair last time I saw my GP he said how well I looked and was quite positive with me, might help I actually went all through school with him though lol!
Don’t let those head shakers and breath suckers get you down I know it’s annoying and not what we want but we need to pity them for their ignorance and lack of emotional maturity!
Hope the fingers not too owwwy today xx
Bev
Not so much from professionals (i haven't seen too many as yet, early days) but 'friends' and neighbours are doing quite a lot of this. I've decided to treat it as funny and have been recounting the stories to my proper friends who actually 'get it'. My next door neighbour has a habit of going into 'oooh you don't look well, you're very pale/thin' I said to my husband she could be dead in there and who would know? Cos you're not looking good dear,...' and on and on. Hilarious!
I think the only one that made me pause was another one who said 'oh they're giving you chemo? God you must be riddled with it......' and despite my assurances that to my knowledge (stage 1) I'm not yet 'riddled' she obviously doesn't believe me. It's almost as if they enjoy it. Maybe part of it is relief that it's not them....
Anyway - chin up! Ignore them all - they're just ignorant!
Lynn
x
I don’t mind the general public doing it as much - I get that some people don’t know what to say or just enjoy the doom and gloom - I just don’t want it from healthcare professionals - some have acted like Fraser from Dad’s Army - I know it’s rubbish cancer but no one knows with any stage or type how the future will pan out so I’d rather live hopefully than be constantly reminded of my imminent mortality - as I said to my oncologist reg, I feel so cut off from normal every day life and people - so it’s harder still when you can’t feek comfortable with medical lot either as they’re doing the head tilts and oh dear ovarian cancer spiel too x
Sometimes it’s just a lack of thought on their part but it’s still annoying especially when it comes from the medical professionals who really should know better. Don’t let them upset you, they probably don’t mean anything by it, I think we can all be a little less tolerant of idiots following our diagnosis although my long suffering hubby will tell you I’m the most intolerant person he knows, but there are idiots out there who walk amongst us and I seem to attract them in hordes 😂.
Keep taking the blood thinners, they worked for me (I was on daily heparin injections, I really hated doing them 😖) and I’m sure they will for you too, I’ve always been very prone to nosebleed so they became really quite spectacular with the thinners plus chemo factored in, one of my friends actually asked me if I was in danger of haemorrhaging to death while I was busy bleeding, I suggested we waited to see (wicked I know) 🤔, it’s amazing how people suddenly become ‘late for an appointment’ when there’s a minor crisis occurring 🤨. Folk are odd sometimes.
Love and hugs ❤️Xx Jane
Some people are either ignorant or stupid, not our fault....theirs.
I have lost friends, because my illness makes them stressed🤔, some stop ringing, cross the road, tilt heads or say insensitive things. I went on a councelling course that told us to get rid of the dead wood and that’s what I did, all the people that said they would have visited if they had known I was ill and the ones that said they would keep in touch.
It is so cathartic to know I have friends and familly in my life that actually do care.
When I get those looks and comments still, I always put a big grin on my face and say” but I’m not dead yet” ! They tend to find that infuriating😀😀👍
We have all been and are still there xxx
That's what I had said to me at the out of hours when I first went on anticoagulants and was frightened over a heavy period as it was unusual for me and they had said that I was young to be on those at 41 and I was told I supposedly would have to grin and bear heavy cycles! They are better now but that's not the point though.
Point is blood clots don't discriminate on how young or old you are as they can happen to anyone at any time and they can happen to those who by Society's standards are supposedly fit and healthy so they were stupid to have told me that.
Put it down to their ignorance!
I must admit that I have never really had this from a medical professional. Saying that I did ask my CNS NOT to speak to me in her "sympathetic voice" that she uses when trying to explain why the oncologist has ordered the wrong text or has not done something they should have done. I asked if she spoke to her friend in that tone of voice and to speak to me normally. Has mostly worked.
When diagnosed I got my other half to get people to ask him how it was going as I was fed up of people asking if I was feeling better. Kind of them I know but............
The times I go for monitoring appointments with the onco or registrar I think they must have on my notes- be careful with this one she will have you on anyhing you say if wishy washy or vague. - I consider this to be a positive.
As I have always looked well, never lost weight and never stopped work it has probably stopped the "poor thing" look and remarks.
Start thinking of some way out remarks ready for the next time something is said. Such satisfaction when you can surprise them- a small victory but worth it.
Fay
Apparently my team have a strategy now for dealing with some women as 'like Sunfleury'! I told them at the beginning that I knew myself well and when I asked for information, I needed them to be direct with me. I understood their caution initially but we had some complex decisions to make and I needed to be part of the process. I am deeply grateful to my surgical team. They treated me holistically & still do. they also included my partner in their care and consideration.
I have also been known to gently remind people that the rogue cells were in my ovary and not my brain! Sx
love the remark re rogue cells not in the brain. I have stored that one for possible future use.
Fay
Just to add its a deliberately glib remark and I would similarly insist on my capability being respected if I had rogue cells in my brain too. I would do the same for anyone else.
My oncology team have been fine. Especially the current registrar who has sat and listened to me sob incoherently in two occasions - one of the chemo sisters who appears to have left was forever telling me about silent killer and other woes - do like idea of kicking people out of your life but when they are in control of the meds it’s harder! My problem is I do a lot of silent seething which chews me up but achieves nothing as I fear once I let loose , no one will be safe from my rancour - my husband also says I’m the most intolerant person ever - maybe it’s a precursor to getting the crap cancer ( all cancers are crap tbh) !!! I just expected better from health professionals than jo public x
I think I've been lucky, regarding being upset or annoyed by people's reactions to hearing about my Ov Ca. I did have one comment though that surprised me. I'd had a large Melanoma removed from my leg and a skin graft over it. I had to have it dressed for some time afterwards and one day a really nice nurse read my notes and on seeing the Ov Ca asked me how long I'd had it. She then sadly and gently said, " Oh dear, time to write your letters" meaning personal ones to family members. I couldn't feel offended, though, because she was so sincere and I had been thinking that I'd like to leave each of my four children and my husband a special, personal letter.
That was six and a half years ago and I still haven't written any! It's probably stupid but I have a fear that I might die suddenly and not have finished everyone's message. I would hate one of them not to have one and feel upset. I write the letters in my head to each one individually but that's as far as it gets. Now I think I'd like to write to each of my beloved grandchildren but as there are eleven of them, I don't think I will. I just try and tell them all of the little things that I love about them without making much of it.
Hope your finger is better now, Solange xx😊
Gosh Solange--I write those letters in my head ALL the time. But the only one I actually have is a "list" I cut and paste from an article from a mother to her son about all the proverbial things you always wanted to say (you know, like "there is nothing you can't do if you put your mind to it" and "treat everyone with respect") but get the eye rolls when I try in person. That is on my desktop and says "for my sons" so if I drop dead suddenly, they at least get that one! The others I just cannot do as I think I have time to do that and I cry every time I think to write it! oxox
I know just what you mean. I had a kidney stone recently. GP sent me to A and E to get a scan to confirm this. I was in terrible pain. The scan showed no stone but did show what was already known.
At that point it was as if this had all got to be from the OC, despite my being adamant not. Included the question Had I been referred to palliative care?
Suffering from a few of Sunfleury’s rogue cells, I’d completely forgotten my last two scans had shown a kidney stone which must have passed before their scan was done!
Ah but Mac, forgetfulness/ distraction isn't the same as capability! 
I've long admired your knowledge & insight on this forum ( & it was lovely to meet you in person).
I have a long list of (mostly) amusing examples of my forgetfulness... they've been decreasing since chemo finished. My peak 2 days involved locking myself out of a hotel room in my dressing gown, picking up the wrong trolley in Ikea & not realising until I got to the tills (it was a member of staff's who had been creating a display & an APB had been sent out looking for it) & then turning up a week early for a birthday party!
Best wishes to you xxxx
And to you too. And thanks for the early morning chuckle. Your replies continue to be really helpful and enjoyable. Long may they continue! Xx
Oh, I know exactly what you mean. About three weeks ago, I was desperately scouring Waitrose for food I could eat (having changed my diet, no dairy, meat or sugar) and bumped into a nurse I knew well at the anticoagulation clinic from all those years on warfarin (nothing to do with cancer, I've got a genetic clotting problem). Haven't seen her for quite a long time because I've been doing heparin shots for the last 9 years, so no need to attend the clinic. She asked how I was and commented on my weight loss (I lost nearly a stone during surgery/recovery and now that's cos I'm starving, missing cheese) so I told her my situation. First she was horrified I'd refused chemo, then she finally took on board I'd got OC stage 4b... at which point, she dropped her head to one side, looked down and then sideways at me with that pitying look... and said she would ring me and drop round. Nothing so far... but I'm afraid I said what I always say which is, well, no one gets out of here alive love, it'll be your turn at some point, we're all going over the same border eventually, no matter how we get there, said with a smile. It's interesting how people respond to that - some look appalled and scared stiff (maybe it never occurred to them) and others just laugh and tell me I'm brave. Brave, for heaven's sake, its not like I've got a choice, is it... if all you've got is lemons, then you have to make lemonade...
And I haven't forgotten the Mcmillan nurse at Queen Charlotte's, when trying to persuade me to have chemo, telling me that dying from ovarian cancer was 'particularly nasty'. I took her to task and said she might wanna think about that before saying it to anyone else, because for most of us, regardless of chemo or other treatments, that's what's going to get us, its coming anyway. She did have the grace to look slightly embarrassed, so hopefully she's not said that to another patient, I thought it was a particularly stupid remark.
Been to do a garden this week too... I'm taking it slowly because of the hernia, and not doing everything, but the client was in, and she kept coming outside telling me not to overdo it and was I alright. I reckon she was worried I'd drop dead in the garden or something... like I'd be doing it if I thought I couldn't manage, for heaven's sake, I haven't lost the power of thought and observation, am perfectly capable of deciding what I can do and what I can't, despite having OC. Anyway, its joyful, working in a garden... In many ways, its easier if people don't know..
What a terrible thing for anyone to say let alone a trained Macmillan nurse - I don’t imagine dying of any cancer is a walk in the park - I just feel that these people are meant to be there to offer support and compassion not add to our already fevered imaginations - as you say, death is waiting for us all so surely the role of any hcp involved in life shortening illness should be to ease our way there not add to the fear - often these organisations offer so many mixed messages anyway that I haven’t even bothered contacting them - I was given a huge pile of fancy booklets at a moving on day but skimmed a few and thought that if this is the best that funding can generate then we’re all doomed. None of us know our exact sell by date so less of the pity and headtilting and more spent on enabling us to maximise the time left and live it to the full x
I don't think there is really anything someone can say to help. What really helps me is friends who actually do something - bring some food, hoover the carpet, take me to hospital. I'm not a huggy person but a big hug actually says all that's needed. What didn't help was medical people constantly saying " you have had a huge, huge operation " - this just made me feel like a freak.
One of my rules as I commandeer who will remain friends, acquaintances or out of my life is how much I feel I am comforting THEM as opposed to just feeling supported. Good friends and relatives seem to just know the right thing(s) to say (or do). And yes, I get the head tilts but not at Memorial Sloan. They seem to have all forgotten we are sick (every time I go--"how are you" is the first question as you would ask a neighbor-and I always say "loaded question--do you mean today? in general? based on my dx?" and they laugh but don't have a comeback.) I should just say I am fine!
oxooxoxo
I recently ended up in A&E with what was a suspected blocked bowel but was actually ascites crushing things, and I to found this, after explaining to the nurse I'm stage 4 PPC etc they did a CT scan to see what was what, the doctor came back with there's not much we can do for you...??? Freaked me a little but I did explain that my oncologist is very positive and I'm not done yet! She was apologetic and managed to get me an emergency drain to relive my symptoms, I'm not sure she knew what to do with someone in my position I did feel sorry for her and when she came to see me after the drain i spoke about living with this disease and she was clearly remorseful, I think it was the lack of knowledge for OC...
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