When I was in hospital over the last 3 weeks ( one in Christie's, then emergency to Wythenshawe) I had a lot of time to think.
My whole family were there and we talked deep stuff for hours but before going into any of that, my daughter explained to me the ring test - which interprets why some friends and family can deeply empathise with you and your situation and others are still on their own agenda.
First of all imagine or draw on a piece of paper about 4/5 concentric rings. You are the person in crisis in the very centre . The next circle contains your immediate family, the next your closer relatives and friends, the next your wider circle of friends, next acquaintances and so on...
People should listen to you. You can shout and scream, cry , ask for an ice cream..anything! Folk around you should respond to your needs, listen carefully and give you close and appropriate attention. They should not be on their own agenda. You are in a special situation.
Most of my immediate family and most friends can do this with ease but I can now see massive discrepancies of response - a few of which I detail here...
Brother: in conversations with him, he converses as if everything is normal. He uses his normal style of interaction whereby he half listens then butts in with some random link of his own. He plans for the future - we could rent a villa in Italy next summer for a great family holiday. He is in denial as to what is happening to me....FAIL
Brother'spartner: i am in hospital chatting. The Doctor comes in. I tell her I'll phone her back, but she doesn't get the message and continues to tell me something totally irrelevant... FAIL
Longtermfriend ( who 7 years after the death of her husband still grieves hugely). On every text we exchange I update her briefly on what is going on with me. On reply she manages to trump me... " oh, I am in a terrible place also.." (she does have a lot of health issues give her that ). " I'm here in Soller and am in real pain today with my hip. But at least you have S....t ( hubby) to help you. As you know I'm on my own and have to do everything myself etc etc. FAIL
I am absolutely not blaming the way they operate..and I know most of it stems from worry and concern.. but
To hear and understand all this was a revelation to me. Perhaps it resonates with some of you also?
More soon. Love and hugs for now
Janet x 💥
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Absolutely true. Even before oc I dropped a couple of friends where the interaction/support was all one way. Afterwards I realised how draining they were. I felt a bit guilty at the time but got over it. Sometimes it is disappointing when you realise this in some people.
The number of times people have been almost desperate to tell me about their illness as though it is a competition! One even went on for over half an hour about their dog being a bit sick after eating some grass. I love dogs but it was definitely not the right time.
Lucky we are mainly strong people and can cope with this but some pruning had to take place for me.
I too have some people in my life who just don’t get it.
Some are just acquaintances who I can relatively easily avoid but one is an old friend who lost her husband a few years ago. When we get together we spend hours talking about her life and her grief but she can brush over my situation in literally a couple of sentences. I have felt guilty for feeling resentful about this but it will help to think of it as her failing the test. Perhaps she has always been like this and it is only now that I am noticing it.
And yet another friend has gone out of her way to understand what I go through and support me along the way.
Being in our situation really is a test of our relationships.
Love Fay’s comment about pruning! I went on several councelling sessions after chemo and we were all told to cut out the dead wood.
I had friends that became self obsessed, had panic attacks (they never said but I think it was because of my condition),others that crossed the road when they saw me and some friends and family that said if they had known I was ill they would have visited me, have they been in contact since(nearly 4 years ago), have they heck.
I know who my friends are, they have been with me through it all and still are, I love them dearly and we will always support each other no matter what.
My advice is, don’t waste time on people that don’t deserve it, life is too short,
Hi Janet - I am sorry you are going through such a difficult time and so much hospital.
On the communication thing, I think there are two groups of people - those who listen to you and reply with something about themselves, and those who listen to you, really hear you and respond to what you are saying. We need those in the second group when we have a cancer diagnosis. I have some friends who are real treasures and I cherish them. I've learned not to worry too much about the rest or even family members who are not over-involved.
Here's an example of the type of communication I don't like to receive - you will identify! It was sent to me after the Rotterdam when I had no prospect of a holiday - I just have to use my sense of humour to deal with this.
"Gosh that sounds rough, do hope it all helps . We never thought cruising would be for us but J's cousin asked if we would go with them. One day we went over the border into Spain to Salamanca. Lovely old town, have you been ? It has one of the oldest universities in Europe . We are doing quite a bit this year celebrating J's 70th . Next month we are off to Nova Scotia. J has been reading up about the Scottish connections... "
Yes you don't want to be the person who spouts forth boringly only about themselves. I always ask after a while...what's going on in your life..I'm fed up of hearing my own voice. We do really need to hear different stories and funny anecdotes. Xx
Blimey! Although I've certainly experienced similar things, it still takes your breath away. Its just about alright as a source of humour if you can share it with others who aren't quite so incapable, because in the end, you have to laugh don't you. Either that or kick 'em out of your life...
Haha! Yes I recognise a few of those!! My brother is such an ostrich...head in sand at all times! But our Mum didn’t do feelings so when our Dad died when we were little she didn’t comfort us. When I remember this I understand that he has no tools or strategies to help him deal with it all....he managed (probably prompted by girlfriend) to send me flowers which arrived every evening after chemo day....so special to get flowers from an ostrich!! x
What a lovely story.. when my bro was here and I drew breath to continue..of course he jumped in.. I said " malcolm Stop! You need to listen I am not going to tell you this stuff ever again.." Debi ( partner,) clapped her hands in glee. " he does that to me all the time..". He apologised immediately and I got rapt attention thereafter, he recognised what he was doing,,, 🦋
I found your post really interesting and actually comforting. After initial diagnosis I was literally bombarded with support it was unbelievable 18mths on I’m down to a handful of what I call real support. I am not ungrateful as everyone has their own lives & dramas to contend with and now I know who I can truly rely on. My husband on the other hand is ‘quietly’ annoyed at a lot of them & occasionally he’ll go off on one saying ‘so & so hasn’t rung’
Unfortunately one person who hasn’t been on board since day one is my own Mum, admittedly I limited the information I gave her as she is in her 80’s and lives alone, and I didn’t want her to sit and worry about me. But whether it is the limited information or just pure denial but she acts as if everything is fine, she doesn’t ask any questions or show any interest in my treatments ,never visits & rarely phones I visit/ring her and she hasn’t even acknowledged that I am not currently going to work, which considering I’ve worked full time for 40 years is to me bizarre. Sometimes it hurts like hell but now I have 99% accepted she just isn’t there for me.
I’m just so grateful for my husband, brother & some very special friends and my dogs who love having me home.
I would also comment that I acknowledge I can be a bit of a ‘cancer’ bore which may have put some people off but if they ask me a question I can’t help but give them a full answer LOL 🙄
• in reply to
This is just a thought....
My mother is 88 and now has a dementia diagnosis.
When I was diagnosed with Breast Cancer nearly 10 years ago, she was, if anything, too involved. Initially also with the OC. Like you, I did edit to an extent what I told her, but I think she understood this was a pretty devastating disease with worse outcomes than BC.
I started noticing signs for concern 3 to 4 years ago, though with hindsight they were there for longer.
What resonated for me in what you wrote were realising: she'd stopped asking me how I was; wasn't on top of whatever treatment I was having - it was always new news; didn't remember what she'd been told; and also didn't display a sense of the bigger picture of my life; and stopped ringing me.
By the time she got the diagnosis the only person for whom this was news was herself!
I think daughters being ill must be just about the hardest thing for a mother to have to deal with, but I wonder whether it might be a case not so much of "won't" as "can't" be there for you?
Forgive me if you feel this is an inappropriate response. xx
• in reply to
Not at all I think you’re right I lost my Dad 5 years ago and am actually glad he isn’t here as he would have made himself ill worrying about me as he wouldn’t be able to fix me.
• in reply to
It was a fringe benefit to my dad dying too that he didn't have to deal with my cancers. He struggled with my mum's. x
Not at all.. everything is relevant. I agree it must be devastating for mothers to have 'children ' who get a cancer or other life changing illness. What constantly haunts me are those with babies, young kids and teenagers.. at least I have had a long and wonderful life, a great job and life.. and although I will eventually leave my wonderful family , I have no fears and will know their grief will be tempered by how we all are together..❤️
I've had a few people I've had to drastically limit contact with. We all know someone who can call on the phone and talk about themselves for 45 minutes and hang up without asking you one single question about anything. I just severed ties to 2 people whose phone calls depress me more than they should.
Don't worry, Janet. Those who have no interest in how you are don't deserve you. The ones that care and show it are treasures.
Aww You just made my day. Or night as it's 5:21am. Damn daylight savings! 💟💕💞
Certainly does.
I've been fortunate that I've coped well enough with the last few treatments I've had , so that quite a lot of people were unaware I was on treatment (my choice).
After several weeks in hospital and now on the Rotterdam, it's not an option. Feeling better than a week ago, but still anticipate being a bit feeble!
It's brought back to me how much I hate some conversations with some people:
a sibling who jokes about living well and dying young..... lucky them to have a choice
a relative who always seems surprised to hear I have had a period of ill-health, despite a close friend of their daughter having died of OC.
the people to whom you have to explain .....again..... what a sod of an insidious disease this is .... and no, they were wrong to have thought we were cured, just because we had a period of being well
and the people who want to bond with their own medical problems. I have one friend with 2 serious, but not life-threatening, as I understand it, conditions, nearly 80 (I'm 66)
I can just about forgive my 96 year old mother in law who "knows just how I feel" (if only)
We're all going to single out the fails I think, but we can also quietly celebrate all the quiet passes who sustain us.
I'm sorry you've been having such a hard time. Hoping things look up a bit soon. xx
Tick tick tick all along your lovely reply... I am lying here writing my day list of things to say over breakfast to son and hubby. That way I get all my wants aired for the day and not annoying pepper hubby esp with random requests as he passes,...😉
I think that how people ‘react’ is a reflection of how we are as individuals. When I was told I had OC I protected my family and friends by being positive and ‘coping’ with the news.
After the de-bulking surgery when the surgeon said that they had got it all my family were elated. I had to bring them gently down to earth and remind them I was going to have chemo and that the operation had removed all that could be seen.
Having ‘coped’ well with the chemo it’s like cancer has been eliminated from our conversations too. Just the occasional ‘How are you?’ To which I reply I’m doing ok.
It’s true that I don’t want to be the victim but I rarely get a chance to share my worries about recurrence -which in my case is very likely. My two daughters are handling this so differently. One buries her head in the sand as she gets too emotional and just wants to believe everything is fine. The other daughter will take over and become over-protective which stifles me if i’m not strong enough to argue with her. All well meaning of course. My darling husband is quietly working his own way through it and tries to talk positively about our future old age.
This forum is so valuable for me to say how I feel to those who understand and support each other. Sometimes friends are easier to talk with than family.
Your reply totally resonates... I am sorry you haven't yet had the chance to totally share your concerns esp given how differently your daughters are dealing with it all
Therefore I can't recommend highly enough a call to your community Mac Millan nurse who will come to your house and you can talk for as long as you want. I found that 3rd person open up chat invaluable
Meanwhile for anyone starting to read this thread listen to the song " it's a Wonderful Wonderful Life" by Black
It uplifts me me every time 🦋
I commented earlier but thought I’d share this I’ve lost a lot of weight (4st) and my watch needed adjusting so my friend took me to jewellers we were chatting & both my friend & shop assistant announced how fabulous it must have been for me to lose the weight !!! I just said ‘of course but I wouldn’t recommend the diet’ 😂😂
Brilliant! You can see th slightly overweight person silently goggling you when you say you've lost a lot of weight ( sub texting I wish I could too..). I was around 60 kg at the state of all this's nonsense. I had a goal of not going below 50 kg. I am now blow 45 kg and seriously worried. I'm on the case today..lx
I think we all know people like this. My kids don't ask when I going for check ups or how I am but I think it's because I'm quite a strong person and it was 5 years ago now.
When I was on my chemo I had flowers and cards and visits from people I hadn't seen for years. Someone had put on facebook that I was ill so more people saw it than I would have told. The thing with that, is that I hadn't heard from them for years and now it looks like I'm okay I haven't heard from them again. I think they just wanted to say goodbye.
I don't blame anyone for this as I'm sure I'm as bad at keeping in contact as they are because we all live such busy lives these days and don't all live near each other as they did in the 'old days'.
I'm wishing everyone well and keep positive ladies.
Your 'ring theory' resonates with us all, I'm sure. But I'm not sure I'd use the word 'Fail' for those who can't or won't respond appropriately to what's happening. I've noticed people who 'fail' fall largely into two distinct groups; the first , the egoists, are those who were always self obsessed, and who always have felt they were the centre of the universe and what they wanted/experienced was more important than anyone else's life. The second group, the ostriches, are the people who simply can't cope, can't bear to connect with what's happening, find it way too frightening, uncomfortable and difficult; this is often obvious in the way they live their lives anyway, they're what I''ve always called privately 'the wishy washies'. This second group simply does not have the strength of character and coping strategies to react appropriately.
The first group, the egoists, well, I had a long standing friend of over 34 years whom I'd always known was like that - she had cancer (breast) herself 18 years ago, and we went on that journey together. I know she is terrified of death - when I got my diagnosis, she was initially very supportive, albeit obviously terrifed, but overly so, it was in quite a bullying manner, because she is basically a bully, its how she operates, by being controlling. By that I mean I had to have every treatment going, must not consider what I wanted to do, must refuse to accept how serious my situation was, 'think positive' and 'fight', and so on... she even took me to task for 'asking difficult questions' at my oncology consultation, said I shouldn't question anything the doctor said and just do what they wanted, do as I was told. And I knew she was reacting like this because she could not bear to think I might not be around much longer FOR HER, so even that was about her, not me. And she promised me all kinds of help, which I knew she couldn't follow through on, since her attention is primarily on herself and not other people, and she is absolutely not a stayer in the empathy and caring department, has zero patience with illness. Needless to say, after my surgery, she started being very angry with me, snapping at everything I said, then sent me an email telling me how ungrateful I was and that I was treating her like a chauffeur (after accepting lifts from her on 4 occasions), and I should be more grateful because she was the only person who'd been there for me. I saw through that - this was her way of escaping from this terrible situation, and she kicked me on her way out the door, made it my fault, so she didnt feel bad about leaving the relationship. I wrote and told her that, bluntly but kindly, and we have not been in contact since. And all I can say is, its a relief... the last thing any of us needs in this situation is someone laying down the law and being bullying because of their own fears. I don't know how she's living with herself though, I know I couldn't; but then we're very different people.
And the others, those who just can't cope, the ostriches - I had an email 4 weeks ago from a brother in law who lives in France. It was simply a couple of paragraphs telling me what he and his wife had been up to for the last 3 months - no mention of me or how I was or whether I was still well, in fact, it was impossible to answer, it was almost like a press release, so I ignored it, though I knew it was his way of staying in contact. He then phoned and this time did ask how I was,but I know he finds it impossible to face... he's not meaning to be unsupportive, he just doesn't have the right stuff to be so, that's all.
As for my sons, well, one tries his very best despite his fear of losing me, and has been there at every appointment and always asks how I am and wants to know my results and sends me info he finds about OC on line at times. The other one is conspicuous by his complete absence. I know he knows what's wrong with me and how serious it is, because another family member told him in graphic terms, but he has not been in touch, which frankly comes as no surprise; he never was a coper, finds it difficult to cope with life generally, never mind a dying mother. I find myself somewhat concerned as to how he's going to feel about that in later years, after I'm gone... but its not my problem, its his, after all.
My own full blood sister with whom I was once very close has only contacted me by phone a total of 6 times since just before I was in hospital (she's an egoist) but my stepsister has been here every fortnight since I came out of hospital at the weekends, and initially stayed every weekend till I got over the surgery, and she looks after her daughter's children all week! So using your words, she's a winner, not a fail, though I'd say she falls into the 'realist, empathic' group.. and she listens properly and patiently while I think out loud.... Its very much different folks, different strokes... but underneath both the egoist and ostrich reactions is the same thing - its fear, fear that they cannot face.
And yes, initially, all the world and his mother were in touch, flowers, cards, visits and so on - but its like first baby syndrome. When you have your first child, the response from others is enormous; when you have the second, there's much less acknowledgement and celebration. And so it goes with OC; I'm still well, as far as I know, but am waiting for the other shoe to drop because of OC's tendency to recur rather than its being cured and beggaring off... lots of people stop asking if you remain well for a while... so sometimes the pruning happens naturally, or we need to do it ourselves. And yes, it is essential to only keep what's useful and positive in our lives at this time.
Such a wonderful reply thank you so much. I totally agree nothing is fail, win or black/ white..it's just the way I go in initially...then I start to modify and realise I've been too harsh.. xx
Janet, I sometimes think because we have cancer ourselves we have the wisdom and understanding to help those in dark and difficult places. Those who have not experienced this can be frightened or find it an uncomfortable place. I remember when my own mother had cancer and died 16 years ago I found it extremely difficult and emotional and was too frightened to give her all the support I could have done. It's all a learning curve, isn't it?
I agree. I have often wondered before I got my own diagnosis what on earth it must feel like or be like to have or live (or die) with cancer... the reality is it is impossible to know from outside. In truth the only ones who know are the ones like us on this forum
I thank my lucky stars we can share and be in this very special family 💋
Hi, Janet! I hear you on all that! I'm thinking that your brother is just trying to distract you with Italy and acting like nothing is wrong with you because he believes you will do this!
Siblings do display their emotions through denial. lol. I have a much younger sister who is constantly planning my future good times. Bless her heart!
Here's one for the books. In 2015 when I was first diagnosed, my dad was recovering in rehab from knee surgery. Very old world Italian. I waited on him hand and foot. When I told him I wasn't feeling well, his words exactly: "no be sick...who's going to take care of me?!" He was half joking, but, I know he really meant it. Geez.
Then, a friend of 30 yrs., when she found out my situation, she ,(right to my face) said..."and that's why I don't go to doctors!" Lovely thing to say, eh?
Sounds like you have a good support system...they are just scared for you and perhaps use to you always taking care of everything. That's where I am. Ironic that we matriarch's receive this lovely gift of OC.
I will ! But my bro did a much sweeter thing this morning which made me cry and showed me he can be in tune ( or he's learning fast..). He knows I love hedgehogs and as there is a country wide programme to make hedgehog pathway through gardens. He set up one in his own garden then sent me a mini pack to do same in ours... x
Ps everyone's stories are amazing, I love yours 🤔🌈❤️
Thought of you again Janet when we had what you might describe as a 'fail' last night with my 102 year old mother-in-law. She lives with my brother-in-law and is fit as a fiddle- her only handicap is being blind, which has led to several falls (nothing broken ever). Very much of the Scottish Presbyterian persuasion that you just grit your teeth and take what life gives you, and not a comfort to us. A bucket list would be an alien concept to her. Anyway, she rings occasionally when she needs something. Among last night's topics my husband said they touched on there being snow in Alps. 'Would you like to go skiing?' she asked. 'We would like to but don't think it's possible because of C's illness.'
Similarly my step grandfather was a northern Welsh Methodist minister ...we spent our childhood holidays in Bangor with glorious memories of endless summer beach days on lovely Anglesey beaches
He challenged me to learn to say the name of that long place name.. llanfairpwllgwllgyngoerchwerondrobwllllandersillioggogogoch
He gave me the princely sum of half a crown. Obviously it is burned in my long term memory...x
I’ve found oiut from having cancer that essentially you come into the world alone and leave it alone - I’ll be first to admit that the disease has changed me emotionally and that I feel cut off from former friends to the edtent thaf it’s primarily just myself snd my other half these days - my son is away at nearby university doing his PhD so we do see him and he’ll message me daily but he doesn’t ask about the cancer much as he’s on autistic spectrum and finds that side of things hard - in the beginning friends did ask or message my husband but as time goes on and I’m still here that has fallen away and unless they are on twitter ( where I’ve found a large support cunminity and made cancer friends ( the best and worst sort of friends as they have tendency to die!)) they don’t know I’m living in a limbo lanc of constant scans and the unknown has it / hadn’t it come back ?
My parents have had 6 cruises since I was diagnosed because “ life is so hard” with it all - during chemo my mother developed back pain ( which has turned out to be quite serious) and wa so sad she couldn’t travel to help us but she had no such problems travelling to Prague to join the boat ! I remember when I was undergoing tests her response wasn’t how terrible for me , but that if always been a terrible daughter and how I’d have to buck my ideas up now I needed support - terrible because I don’t go out for coffee with her like her friends’ daughters despite living the other side of country or have her over to stay even though she complains about how the stairs /wood burning cooker/ mess/ lack of shops etc make her ill .
Clearly some people just can’t fit into any of the rings and whilst it makes me angry and bitter at times , I’ve decided to just focus on me now as my time is precious - my oncology dept have just funddd a specialist counsellor and I’ve been referred - I’m sure this topic will come up lots!!
I find this quite a sad post and wish you were surrounded by more empathetic Friends and family...well at least we are all her for you...💞. As I keep saying like you..about our entry and our exit to life along with ...you could walk across the road tomorrow and be killed by a car... at least we are given time to prepare,,xx
Thank you - I’m not always sure I want the time to prepare -I hate uncertainty and cancer comes with that in buckets - my granddad died at 96 in his chair and I’d rather that or the bus tbh - i think it’s easier to share with those who get it - till facedwith your own mortality it’s not easy to understand how rubbish it all can be x
Gosh, reading thru all these replies has me wondering about my own communication style during the past 3 years. I can't blame people for not asking how I am, really, when I am so damned positive and cheery all the time in our communications. Also, 3 years on, people assume I am cured and drop offering support. The only person I really open up to and can cry on her shoulder is my older sister. I keep my kids informed (they do take turns getting me to Dr. Appts) of my progress but don't want to worry them at all so we don't talk future possible complications or daily worries about pains and twitches. I haven't even told one brother I even have cancer. My other brother knows but has stayed distant.
I love this forum because we are all so honest with each other and even a minor worry is answered with a warm hug. You guys are my go to and I appreciate every single one of you.
Aah, the daily - how are you - from some.. I have a friend who Ives in London who daily writes " How r u?" ( well that took a lot of effort... ) not realising that the complex reply would take 1/2 day to respond properly. Meanwhile 20 similar stack up🤔. Maybe style ignored,, x
I had already experienced some of the responses when my husband had his stroke so nothing surprises me. I think the most irritating responses I have had are along the lines of but you're doing so well and just carry on as normal and all the time I'm thinking, I wish you could do the same about your headache, period pains, cold, etc. that you're boring me silly with.
I do think that some people find things like this hard to handle so come across as uncaring. I remember when my mother died of colorectal cancer, it had been about to happen for months and friends who I knew knew she had died said nothing and I had to bring the subject up.
Folks are folks and there's nowt so queer as folk, except for me and thee - and even thee's a little queer.
Just make sure you drop people who stress you out, waste your time on their behalf and the like.
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I just have to use my sense of humour to deal with this. 
Annie Mulholland (Whippit)
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