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bell59
Member Posts: 19 ✭
Have just joined on advice to connect with others, by psychologist. Have had double mastectomy (Mucinous type)and diep flap rebuild Feb 2020 and on AIs now. Have been v emotional and needed coping skills and resolving of issues. Having been 'overly selfless' mum (2boys grown -both with issues )and (probably Asperger)husband no good at support. Felt dread before op and guilty and alone after op and looking healthy. ( Am tall,slim, fit and dont look 61) Few friends I opted for as support think its all good now. Fear of return etc comes in waves between normal life. Looking now more for people who know what its like.
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Welcome to the club that no-one really wants to join @bell59! And with you family’s issues, that would make it even worse and more isolating. Yes, many think it is ‘over’ once we’ve had surgery and follow up treatment, but it can take a year or to to begin to feel ‘normal’ again. Terrific that your psychologist put you onto us.
Where abouts are you? Add you town/city to your profile .... as we may have members nearby .... after this Covid thing, you may be able to meet and great and have a coffee together .....
Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you. Nothing is off limits. We have ‘private groups’ for some more personal discussions .... so feel free to join any of them, if they suit you.
We all know the absolute turmoil that comes with the bc diagnosis .... Your whole world is turned upside down in a millisecond, as you navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... and it may take a year or two for your life to settle down.
It is totally 100% ok to skip between anger, denial, sadness. Just talking about it openly and sharing it with a professional as you have should be able to give you coping mechanisms ...
You will make new friends who will support you (specially on this forum) and may lose some old ones, who just do not understand what you are going thru. Most of us here, have found wonderful friends within the group and have even met up with them in ‘real life’ before this Covid thing!
Personally I found that it mucked with my BRAIN more than anything else! And sometimes that is very hard to control, as it has a mind of its own! Keeping BUSY doing things is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.
Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!) Just click on the link to add pics and posts ...
https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
If you are into arts & crafts, we have a 'Creative Corner'
https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
and if into your garden, a Gardening post as well!!
https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078
And we now have a Fishing post, as that is one of my passions!
https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics
Try not to use Dr Google as there is just so much conflicting information out there, and every BC case is 'unique' and it will only scare the pants off you!
All the best with your ongoing appointments. We have some posts here on what to take with you too, to make it 'easier' on you.
https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1
and for your annual checkups, some ‘tick sheets’ to help you put your questions together for your medical team.
https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest
take care xx6 -
Hi bell59,
Sorry you've joined the club nobody wants to be a member of. My BC pathology was mucinous with associated DCIS. I'm sending you a private message.1 -
Hi @bell59,
It's all such a shock isn't it and the ride is so fast as we do this and that on the so called ' journey'. (Hate the word journey). Emotionally It's hard to keep up with it all too. So glad you joined this group. They are great and we can say what we want or need to.
I am 58 and currently just finished chemo and radium. I am about to go on AIs. I am reasonably fit and look good too so people tell me. Actually they said that during the whole chemo radium thing as well. But no one knows what goes on inside our heads and while friends mean well sometimes it's hard to talk to them about how we feel. It's good you are seeing a professional. I did as well and checking in here is definitely the way to go too as everyone gets it.
Are you into meditation or mindfulness? That can help as well as your exercise.
I think we all fear or return. I have thought about it as well. I don't dwell on it but I guess at times it is there. I think most of us have thought about it. For me I walk, keep busy, meditate, cook read, draw, watch movies whatever will distract me. There is no right or wrong but just whatever works.
Hope you have a good day 💐3 -
Hi there @bell59. I went through the mill in 2016 and 2017 and came out breast free and somewhat buggered and bent. My husband of 41 years is a full on Aspie as is my daughter and her partner, so I totally "get" the difficulties there. I had a detailed discussion with my Bearded One about the difference between trans...port and sup...port. He thought that his support started and ended with schlepping me backwards and forwards to medical appointments. I pointed out that I could call a cab for that and had to walk him, step by step what the support was that I needed. He still finds it strange that I'm not asking him to fix anything, I just want him to listen, and if necessary provide tea and hugs. The fear which you mention is also very real. Before cancer, if I got a headache...well I had a headache. Now the evil cosmic clowns whisper in my ear..."maybe its baaaack". Ditto tummy discomfort...absolutely not plain old tummy gripes...most definitely cancer...probably in the liver. Any back strain is quite obviously mets in the spine....I get it. I find keeping my hands busy helps. I'm a knitting addict and find the repeating knit this purl that very soothing. My mind cannot go walkabout if it is busy counting and following a pattern. Finding a hobby or an activity keeps the heebie jeebies at bay for most, perhaps it will help you too. Big hug...Ally.9
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Thanks so much Ally.I blurted out a laugh at your 'Trans-port' remarks. Oh so Yes! I am an arty crafty type too which has helped in Melb. lockdown. A backlog of projects waiting. You will set me off giving me hugs!. A sore point for sure. I give off an unintentional aloof vibe which doesnt help. Bit overwhelmed at response to a 3am post. (Still figuring how to navigate here.Bit of a labyrinth. I am nit on social media so forget to 'like' etc.). Thanks6
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Thanks everyone.4
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Hi @bell59 Its reassuring to know you have a psychologist sensible enough to suggest a support group like this. I've had mixed results with them over the years--most of them have seemed even pottier than I am, which is saying something. A good one is like finding a gold nugget in a bucket of manure. They can give us some excellent advice and coping mechanisms, but ultimately it's up to us to figure out a way to hold the whole show together. That takes practice, patience and, ultimately, time.
I've got no patience and worry constantly about the time factor, so I'm stuck with practicing. Which sometimes feels like pretending and, of course, has the effect of convincing those around me that I am doing just fine.
Half the battle is realising that we don't suddenly 'get better.' BC is not something that just magically goes away. The best result is a long life disease free--why else would we go through the slicing, dicing, poisoning, frying and pill swallowing business if it wasn't for the hope it would work? Regardless of what treatment you've gone through, the long term reality is often a variety of lingering issues of varying significance. Recognising the 'varying significance' bit is important for me, as I simply don't have the mental energy to sweat the small stuff. And it's up to me to decide what is small and what is not. I get really, really shitty when someone else thinks they can reorganise my list of things I should give a fuck about.
Physical recovery is often easier than shutting down the noise in our heads. Like tinnitus that noise seems much louder in the middle of the night, but if I stop and listen, I can hear it at any time of day. Sometimes that noise can sound like a demonic orchestra warming up in an echo chamber. Foghorns howling warnings which seem to be inviting a shipwreck 'AAARROOOOGGGAHHHH' repeating in the darkness. Other times is like the hissing that reminds me that I've forgotten to turn a sprinkler off--only audible after I've gone to bed.
Hang in there, maybe try to view it all as a very interesting experience and know that you are not alone. MXX11 -
Never a truer word spoken!! It is the lingering issues that are the most wearing!Zoffiel said:
Half the battle is realising that we don't suddenly 'get better.' BC is not something that just magically goes away. The best result is a long life disease free--why else would we go through the slicing, dicing, poisoning, frying and pill swallowing business if it wasn't for the hope it would work? Regardless of what treatment you've gone through, the long term reality is often a variety of lingering issues of varying significance.3
