Surgery & living alone

[catchpole]

Hi Mael.

Yes there are worse things than cancer like Huningdons, and that isnt cureable, a friends husband had it and i saw him get progressovely worse, he was my age, died couple years ago, But somehow cancer seems to still have that stigma dosent. it.   I honestly thought if i ever got it id completely go to pieces but apart from the odd meltdown before i had op i didnt. Once the "lump" had gone i felt calmer and once results back calmer still., Ive reacted quite differently to what i thought i would. Only thing i feel upsets me slightly is that nothing has changed in my life, and for some ridiculous reason i thought it would, I thought friends might want to see me more i donmt seem to see them m ore ,those who had been bit off, like the one who no longer invites me to dos cause of sometnhing stupid i did 3 yrs ago  might start inviting me again, nope shes a a barbi tomorrow and i,m not invited. I spose that just makes me feel do they really care, if they did  they would be more caring, Does that sound stupid, or is it just that we who are without  patners and kids, need more from our friends and we dont always get it. I feel now there must be more to life than this, and somehow i must find it, but i dont know how.  And sometimes i just dont feel included and my singleness makes me stand out like a sore thumb. I always did feel a bit that way but now i seem to feel it more.   June

[Jill1998]

Briefly appeared when in CT scanner ,spoke severely to it and self and it went to play in field....

[mael]

Rather heroic for a bra. Was the goat behaving?

[Jill1998]

Yep, the bra took a bullet for me and I've only had it 2 weeks.

[mael]

Hehehe, the bra took the worse of it, like the legendary cigarette case which stops the bullett 😄

[mael]

Hey, how it went? Not too horrible I hope? Apart from the sartorial offence.

[Jill1998]

Yes ,but only had to have one not two due to markings on bra,go bra!!!

[Jill1998]

M and S best sports bra too.....!!!!!

[mael]

At the shrink, today, we talked about medical violations of personal boundaries... Argh! Did you get the tattoos as well?

[mael]

Wow, cut a bra?

[mael]

Scary indeed! But better than emotional isolation. Here I relate, I understand and feel understood, and I do feel easily how behind the nicknames there are real persons.

[Jill1998]

They took away my one decent bra and cut holes in it, due to " floppy breasts" at planning appt and will need to wear it at each session,sent me home with t**ts tucked into my pants, glad didn't get pulled over for speeding or something,.....

[Jill1998]

Scary isn't it !!!

[mael]

Hiya Jill, good to read you. I am quite dependent as well, this forum is my portable therapist. x

[Jill1998]

And my friends ,is BCF really Big Brother.......

[Jill1998]

Been prevented from posting all day and yesterday due to tech issues,made me realise how much I need this forum,felt really isolated .And they wanted to steal my identity.....

[Joll1998_]

So fed up with this new website,Im presuming loads of people have been morphed into new people who therefore need their posts moderating therefore taking hours to appear.Cant send personal messages as don't have permission to do so .....Not been having a good 24 hrs could have done with a natter with people. Wondered who the hell you were Jo(Joby) formally known as Kim68!!!We appear to be having the same issues!!!!

[Joll1998_]

I really don't want to be called Joll1998 it just doesn't suit me!!Sitting waiting for CT scan,took Valium now feel like sleeping.Why do they want you to arrive 30 mins early when they run at least 30 mins late.Has everyone else lost their friends and book marks or is it because I have become a "new person".

[DizzyDee]

Morning girls. Reallyinteresting to read your posts. I didnt tell everyone until after my surgery and results. My school knew and the staff were wonderful and i decided to tell the kids when i had to rake time off for rads. It was the best decision I made as the pupils were so supportive and posistive about it. I got a card froma girl who really touched me saying i was always there for the students and how proud she was of me to get through my cancer.
I am the opposite i feel now i dont want to justgo back to normal life. I want to help other women like me. It makes me feel useful and through the Royal Marsden i am setting up a group for young women with the BC nurse. I feel passionately about this and it helps me comes to terms with whats happened. Its different for everyone but we all find our new 'normal' eventually. And Mael you are so right when you say that we arein charge of our own happiness. Xxx

[mael]

Magical Moon, I've sent you a private message earlier... I want to comment to what you've written, about your exceptional reserve, which I see as both heroical and potentially dangerous; I'll have to do it over the weekend, as now I am really too brain-dead. I find it ironic, re: friendships etc, that on top of the illness and treatments and the rest, a new and arduous "effort to communicate", like you appropriately write, is now requested from us. Like, we hadn't enough on our plate...

Right now it comes to my mind a little story, somewhat related; I had once this colleague, a gay guy, smart, funny, a bit uptight; I was barely on speaking terms with him. One day I popped down HR for some random matter and there was, left carelessly on the desk, a document he had sent to justify some bi-weekly continuative absence, and I managed to read asthma, diabetes, and then I stopped reading partly out of shame, partly out of discretion -- but there was more. I then promptly half-forgot.

He left the company, we meet up once soon thereafter, and we became friends later that year, very very friends -- like, calling each other three times a day every day and spending most of our free time together -- till we had a nasty breakup some six months ago (and still I've got some stuff of his, he has some stuff of mine, some theatre tickets we'll need to sort out very soon... sigh. A real small-scale divorce.).

Why I am saying all this? Because despite our intimacy, he never mentioned his health problems. Not once (ok, he mentioned asthma once). I was too shy to ask and waited years for him to open up: he never did. I know I shouldn't but I sometimes resent him for this (plus other stuff...): closeness, real closeness requires trust -- I didn't feel trusted, and eventually I didn't feel valued. But also conceded him the benefit of the doubt, the respect for his reserve; and anyway I was too chicken to break it! Sadly, I still wonder if we would still be friends if he had opened up, or if I had asked. Maybe we would.

That's also why I went the outright opposite way when I had my own elephant in the room, and told everyone (I am not advocating this, mind. Everyone is different and has different levels of comfort. I am just blabbing really, reminiscing).

More on friendships etc later.

nite nite xxxx

mael

[Joll1998_]

Think life has it in for me today ,forum wants me to be called Joll1998 and I guess as it doesn't recognise me wants to moderate my posts.

[Magical_Moon]

Mael,

I was writing my post when you posted and now just read your latest post.

For me, I do not think of BC or want to talk about it.  I do not lie in bed worrying about a recurrence.  However, what I do have to deal with every day, is taking b******* Anastrozole which has depleted my body’s oestrogen by over 95% to the point I feel like a 90 year old with severe joint pain and osteopenia.

I must be mad to keep taking it as instructed by my oncologist, because it only gives me an extra 0.8% survival increase in 5 years.  Without hormone therapy, I have a 95% survival prognosis. Promised myself I will take it for two years as recommended by my breast surgeon but then, I will be on the verge of stopping.

The elixir of life, HRT.  I took it for 12 years and felt wonderful until BC knocked on my door.  Now, if someone said, you can go back on HRT and I would not get a BC recurrence for 12 years, I would bite their hand off and grab the HRT.  But that is never going to happen with me being 100% ER positive.  I can only dream of my HRT years when I felt like a spring chicken.  No aches or pains but full of vitality and youthfulness.

That was an interesting story about your experience at Convay Hall.  I've got one of Dawkin's books but haven't read it yet.

Have a good sleep Mael,

M x

[Magical_Moon]

Hello Mael,

Thanks for finding the time to post despite your tiredness.  I really miss you when you do not post because I can understand where you are coming from.  Your words resonate so much with me and echo some of my own thoughts.

I only told three people.  A longstanding penpal friend, distant cousin and ex-work acquaintance.  Penpal offered help but lives so far away from me it wasn't feasible eg. taking me to hospital, visiting.  Also, his partner died of bowel cancer only a year ago and he looked after him at their home.  I felt it wasn't fair to burden him with more cancer scenarios. He did keep in touch by email which was kind of him.

Only told distant cousin because he had phoned me (out of the blue) to tell me my uncle had died and asked was I going to funeral.  I had to tell him about my cancer operation because funeral was day before my operation and I couldn't get down to London.  Otherwise I would not have told him.  Not seen or spoken to him for 20 plus years.  He was sympathetic but had know idea about what it was really like dealing with a cancer diagnosis.  By his response he obviously thought I would be back to normal after the tumour had gone.  AKA having a tooth out at the dentist.  Sigh!  Didn't hear from him again except for a Christmas card when I was going through the delights of radiotherapy.

The ex-work colleague offered a sympathetic ........'sorry to hear your bad news, we'll have to meet up when you feel better.'  Not heard anything more except for the ubiquitous Christmas card.

As you say Mael,  it is as much me as them for not making the effort to communicate.  I haven't the energy dealing with chronic pain every day.  I am usually jetting around the world on exotic holidays to far away places and have lots of adventures to share with them.  But since BC, my world travel has been put on hold until I regain my confidence to travel solo again.

I am annoyed at BC for impacting on my confidence and making me feel vulnerable.  I need to do something to get my quality of life back.  Should I stop taking Anastrozole?

M x

[mael]

June, forward is the way to go -- it's good that you're moving on, one can't think about cancer forever, all the time, otherwise what's the point in surviving?

Jill, I think you've been wise to be reserved. I wish I had been able to see four months down the future and avoid screaming my problems from a roof... but then, at the time I really needed all the help I could get, and I got it from very unexpected place (and very few of the expected ones). Anyway, I can't really unsay it now...

Moreover, I think that, apart from some blatant cases of un-attunedness, the problem is mostly in my mind. I wonder sometimes, what if it had been another disease? Would I have reacted so badly? 

Last year I went to see Dawkins at the Convay Hall. During the Q&A at the end, a very young man stood up and told publicly that he had just been diagnosed with Huntington disease -- that very day. There was a glacial silence, Dawkins said some platitudes, wished him good luck; the guy thanked and ran away. No-one said a word. 

I was deeply affected. I wondered how one could live the rest of their life with this kind of knowledge, and, very irrationally, I was tempted to run after him (but then, to say what?) and I was taken aback by the silence of the crowd, and even more irrationally I thought, all horrified "HEY, this guy might die and we aren't doing anything!". Like, we could somehow make a collective effort to keep him alive...

Sometimes, in a similar way, I feel like my friends have a sort of duty to keep me alive, and I am almost outraged: "You aren't doing anything!". Then, after a second, I bitterly realise that illness is natural, I was just unlucky; plus I could still pull it through, and no collective effort could change the situation anyway. So, I guess, all my complaining about my friends and my "friends" is petty; they do what they can really, which is a lot or very little, or something inbetween, depends. But ultimately this life is mine, it's me who chooses to be happy, unhappy, hopeful, desperate, grateful or disappointed. I could even decide to be happy and get away with it; who says I must be already bereaving my poor little self, or obsess over cancer and survival rates? 

I better go and have a shower ladies! I send you all a big hug, and tomorrow is Friday anyway, which never fails to be a positive.

love xxx

ate-too-much mael

[catchpole]

Hi All, ]

Interesting you say thats all people want to talk about is your cancer.  Now im the other side, noone hardly mentions mine., My friend who had ovarian and i met for a shop  and  meal out tues and we did talk about it a bit, but then we both had it, but not to any great extent,  The friend i dog sit for asks me how i am a lot and shows concern, but noone else seems to say anything,  Perhaps ive been too perky,and although had the odd tearful moments but l.living alone in a coupled up world i used to get them anyway. Ive sort of compartmentalized what i had, it still sometimes seems like it happened to someone else. IApart from chatting on here, i havent had any desire to join any groups, We have a Big C here in Norfolk but to be honest i did go once to chat and then my friend and i went in  on my first rads and had a coffee but havet been back and dont think will. They are great if yoiu need them but now my treatment is over i find it easier to return to as normal as possible,never be the same, of course,how can you be. but normalish,If i kept going to Big Cs etc its based at out local hospital i think id keep thinking about it too much and to be honest ive seen enough of hospitals.Im back on 21st Aug and thst will be enough,.  Junex 

[Joll1998_]

I have changed my name to Joll1998 for reasons best known to the new website, not sure I'm a Joll.....

[Jobey68_]

Anyone else have problems getting back on after the shut down today? I've now been reinvented as Jobey68 ( previously known as Kim68) had more name changes than prince!! 😜

[Jill1998]

Mael ,I know what you mean about avoiding talking to some people as the only topic is cancer or trivial stuff.I have only told a handful of people about my diagnosis ,in the beginning it was hard to try and be normal around people who didn't know now it is the opposite.The people who do know bring up blooming cancer as a topic of conversation when I really don't want to go there,I am bored of it and don't always want to think about it It is quite nice to be around people who just talk about day to day ordinary stuff and don't treat you any different sometimes I'm guessing you get that at work?Speak to you all later when forum is back up and running .

[DizzyDee]

All my love ladies. In the meantime listen to Rhodes 'Breathe' that song brings tearsto my eyes. I played it so many times and it sums up our situationso well. Even my anasethuist andrew listens to it nowxxx Love you all 8bxxxxx

[missmore]

Ladies, sending you all love and light, no posting tomorrow

love all my B8/7??? 

Sheena xxx

[mael]

Btw, in case someone hasn't listened to it yet despite me pushing it at every occasion 😄 , there it is: https://www.youtube.com/watch?v=9Kz-lV4t-3w&list=PLiikGLjC9QDo5wc39B1X2zOLFhk-nhuTc ... it's an incredibly vivid account, plus it's consoling to know she's still well and in good health.

nite nite for good xxx 

m.

[mael]

I wish I were less tired -- the convo about the friends' reactions is really interesting. Sadly I am so knackered, it will have to be another time. The C thing has caused a mightly reshuffling in my friendships: some formerly close friends have pretty much disappeared, and some I considered "nice acquaintances" have become much closer. I am a bit disappointed for a very close female friend I used to talk to every day: we now go two-three weeks without hearing from each other. I never call her because we'd end up talking about cancer, or talking about her socialite stuff, that all of a sudden seems frivolous beyond the limits of my tolerance. When she calls me I almost dread it because [same reasons as the above], plus I have the impression she calls out of duty.

A couple of other missing-in-action so-called friends are actually a very, very good riddance.

I also know that it's me as much as it's them... I have very, very little to say overall. I used to be someone exciting, someone full of beans and ideas. Now I am so flat that I bore even myself, let alone the others... Last time at the shrink we ended up talking about the history of music, because I am sooooo fed up to talk about myself and my Big C-Issue, but I didn't dare to leave before the end of my allotted time and I had absolutely nothing else to say that I felt newsworthy (poor man was taken aback, but graciously acquiesced, "whatever makes you feel better", and even showed me some concert pics). 

I really hope this will improve somewhat because I tell you, the only thing that I can talk about with a reasonable degree of pizzaz is work, or the meaning of life, and I know it's not nourishing enough to my normally bulimic brain; but nothing else feels relevant to me right now 😞 I really have to hope that this will end at some point, because if C doesn't kill me, boredom will. I have to have more involvement in normal life. Like Tig Notaro in her masterful "Live" sketch says, "I feel like a Chilean miner".

nite nite ladies xxxxx, a big hug

mael

[DizzyDee]

So agree June people don't understand and never will once you accept this you can move on in a positive way, ditch the people who make you sad or angry and get out there. Your coming to the polo with me next year. 😊 xx

[catchpole]

Hi Dawn,

Yes i think ;peoples attitude can kin d of make you think.  I told my friend i dog sit for today, i thought after my breast cancer, things would be different, I thought id get included by the off friend i told you about,  and maybe see more of people  She said well you never were a close friend of hers so why should it be and what do you want people to feel sorry for you.everyone rallied round when you were having treatment,  I pointed out no everyone did not rally round, she did,and i dont how id have coped without her and 3 of my other friends,here,  my old friend 30 miles away was coping with her own  ovarian cancer at time,Some people barely acknowledged it,  I said no i certaintly did not want sympathy all the while but i honestly felt id see more of people etc,its all very well inviting you round for  meals, visiting you when think you might be dying, but when you are better youve still had cancer, it could reoccur, you still have to deal with it, but people seem to think no  you are  better thats it, but i still get lonely on my own at weekends when all coupled up and people with familes  do stuff. She said well then do voluntary work, i have no idea why people think voluntary work is answer to eveything for the fed up retired, it certainly isnt for me,.

So no Dawn i dont think really people do understand and we just have to live with it. And suppose as we are single and we probably need friends more than the coupled up, we have to live with how they are,amd have a rant on here to [people who do understand.  I did have meal out last night with my old friend who had ovarian, She always comes over once a month to see me,  She of course has more understanding, but anyway she is one of the kindest, nicest people i kn ow..  Luckily shes doing well too,   Junexx

[DizzyDee]

That should say antidepressants are good and block the side effects of tamox. Its my iphone again !!!!

[DizzyDee]

Sheena i had an episode exactly as you describe getting panicky and anxious was out with my twin and had to go home. This was when i was awaiting surgery and thats why i knew to go see my GP to get help. The anti depressants ate goid and they blick the side effects of tamoxifen. I've been fine ever since do get ofd terarful moment but as the girls have said this is normal. I'm on the teva brand of tamox. I know you pronably don't want to take antidepressants as i wasnt keen but I felt so bad anything was a relief. And to be honest i haven't looked back since xxxxx

[Jill1998]

Sounds like a panic attack Sheena, may be Tamoxifen or may just be symptom of lots of stress.More likely to happen in situations where there are a lot of visual and mental stimuli like in town centre, supermarket etc rather than more calming situations like park.

[missmore]

Mael, I hadn't thought of that,  when I go out walking around the canal's or local walking paths I feel totally different,  there are other people around and I feel ok. Was just so weird,  James was with me and commented on this,  "mum, you're acting all freaky" lol

Jill, I've got Mylan, and it does have less "extra" stuff in it than some of the other brands. I take it first thing but am thinking maybe I should try it in the evening x

[Jobey68]

Hi Sheena , Tamoxifen can make you feel anxious but along with what we have been through it's not surprising that we do!  I've had about 3 or 4 different brands and haven't really noticed any difference, the best side effect I've had is my periods seem to have left home ...... Hurrahhhh 😁😁😁😁😁

[Jill1998]

I am not liking the side effects so far, horrible taste ,very dry mouth, still time for more interesting effects.I wondered about trying a few brands to see how they affect me as unless you ask it is a bit random . what brand do you have now Sheena?There is a chance you could have felt like that whether you are taking Tamox or not due to all the stress you have been under.

[mael]

Jill, the sandwich toaster is a very powerful image 😄

Sheena -- it may be the tamoxifen but it's also a symptom of PSTD. I've read somewhere that that 50-60% of cancer patients have PSTD to some extent (I almost certainly have it, for instance). Anyway, I wouldn't care, as long as it's an isolated episode. But maybe do mention it to your GP, especially it it happens again. There are pills for PSTD, afaik -- and if it's the tamox, I've read that changing brand may help. xxx

[missmore]

Hi dee

glad the acupuncture is doing the trick x may investigate for myself

I was reading a lot about tamoxifen and the ingredients,  some have more than others,  mylan is the one I have been taking and it doesn't have loads of other stuff in. 

I was out in town centre today and felt really bad,  anxious and jumpy and had to cut the trip short,  I think it may be down to the tamoxifen,  haven't felt like that ever

Have any others felt like this? 

sheena x

[Jill1998]

They put me in a sandwich toaster last time,I had to ask to get out as I felt panicky,went back on couple of mins later though.

[DizzyDee]

Jill the CT scanner is fine and no problem. I was a bit worried too but need not have been its fine. My tatoos or shouldi say dots are so tiny i forget thst they ate there. Wishing you all the best for Friday xxxx Session 3 done of accupunture at hospital today and feeling like a different woman throughly recommend it. 😊

[missmore]

A big donut is a great description kim x

[Jobey68]

Its nothing to worry about  Jill, its only like a big donut and you dont go inside of amything really, it just moves around your chest, its quite noisy but fine honest! The tatoos are just a pin prick and over in a flash xx

Spoiler

[Jill1998]

Good ,I hope I have same experience then.

[mael]

Jill, I don't remember very well the machine but it wasn't claustrophobic. It really was an ok experience that for once gave me hope to heal, instead of the usual sinking feeling.

[Jill1998]

Hopefully a more jolly place than Oncology then...

[Jill1998]

Thanks for the reassurance Mael,pain I can do,trapped is a different matter.