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Living with this diagnosis

13 REPLIES 13
GIJaneH
Member

Re: Hi IRe: Living with this diagnosis

as a newly diagnosed bod too, with emotions all over the place, I read this thread with interest

I have something to offer those of you tired of talking/telling people.  I use a website called Caring Bridge.  You post an update/ do a blog, and people can log in or read it and leave messages.  Works brilliantly, and is setup for this sort of situation.  You can choose your privacy settings....

Hope you get more support.  My BCNs are outstanding.  I see once tomorrow to hear treatment plan....

 

Jane

Pesto
Member

Re: Hi IRe: Living with this diagnosis

Hi @Janny J 

 

So sorry for not replying earlier, not been a good week.

 

I do hope you got much more satisfaction and contact last week from your team.  It must be doubly hard for you regarding Mum and not wanting to worry her.  But it sounds as though you are in contact with her, and she has possibly picked up the fact you are not well and very down, and will be worried for you as she won't know why.  Maybe a chat with her being as honest as possible but keeping the bad bits out will help you both.  Mum's can see right through us, I know my late mum did and I do the same to all my three wonderful children 

 

This place is wonderful to vent anger, get advice and meet new friends.  On here you are never alone, sharing whatever is worrying you or making you smile helps tremendously.

 

Take care, keep in touch

 

Gilly

 

XXX

 

Janny J
Member

Hi IRe: Living with this diagnosis

Hi Gilly

I live in central London, Near Baker st

My Oncologist told me on my phone, while I was out to have my injections.

Totally set me off track. I always walk to the centre to have my treatments, but hearing the news it has spread again, I decided to get the bus instead.

That was thursday. So left for 3 days to process the news. I can't tell my mom that my last scan was not good. I take care of her due to her health issue's.

She is dependent on me, so worried if I'm not here for her.

So I have kept it secret.

Hopefully, Nurse will call 2moro.

 

 

Mclaire83
Member

Re: Living with this diagnosis

Wow I’m blown away by so many people feeling the same or having some understanding of how I feel. going to the top of a hill and screaming or throwing snowballs at the fence is a good release of negative energy at the moment. 

a PMA helps but is hard to hold onto. I was writing a daily diary but it turned into a outdoor of negitive ‘I can’t do this’ page after page so I’ve put that aside for now. 

I still feel incredibly guilty for putting my family through this, especially my little girl. I have some really good friends and have been amazed at some of the people who have gone above and beyond to help me ❤️

ive had a few MRI scans recently to try to get to the bottom of my constant headache and honestly excruciating lower back pain but all have been clear of progression so I’m left with morphine.. not much help. Because it’s not cancer they don’t have much suggestion which is disheartening. I am in so much pain.Feeling pain is what I fear most in all of this, I just want to live out my days feeling like me, chemo is exhausting and I find myself feeling very jealous and taunted by people who finish treatment and have an end date 🙈

hope you all have happy Valentine’s days 💕

 

Pesto
Member

Re: Living with this diagnosis

@Janny J 

 

Where are you in the UK ?

 

It seems completely wrong you have just been " left"

 

The wonderful thing about this forum is you are most certainly not alone.  I am relatively new on here too, but the support has been fabulous.  We all have good days, most have bad  days and mine are far more frequent than the good.  It is a wonderful place is for you to vent anger,  and swop news of any sort good or bad 

 

Tips and suggestions are so helpful from people who are in exactly the same place as you. / us   I suffer headaches apart other little tribulations and the suggestions were brilliant.

 

Scream as much as you like. The forum will wrap you in its arms and hug you until you beg it to stop.

When I was  first diagnosed nearly thirty years ago, people used to stop me and ask how are you ?  Two minutes into the conversation I could see no interest at all.  It is a very English thing to always ask " how are you " in conversation.....  very few really care.  My reason for being here now is the demons have returned, but I did have a relatively worry free time until October 2020.  Those were the days my friend as Many Hopkins used to sing about lol

 

One of the hardest things though I found since my new diagnosis, my really true friends do care and when  they ask they want to know.  That in itself is so  hard to keep repeating the results of tests etc, it is almost as though however positive one is feeling at the time that erodes rapidly.  There have been days  ( last week I spoke to no one out of choice ) I speak to no one primarily because I am feeling so rough to discuss it makes it 100 times worse.  But they all mean well.

I have explained to them all and they fully understand.  In lockdown, not allowed out, no appetite, not sleeping and depressed what can you discuss with friends day after day... ? 

if you want to PM me you're more than welcome...  I will reply and the virtual hugs from the forum are on their way...

Talking in which ever form be it through the forum to very friendly strangers etc is very very cathartic, but only as little or as much as your yourself are comfortable with.

 

We will all be here for you and that is 24 / 7.  Some of us  sleep not a lot lol !

 

A huge welcome hug from me and everyone else

 

remember we are here for you.

 

Footnote, my hubby finds the discussions very reassuring too, he doesn't  personally contribute on the forum but some I do ask him to read some  because they are full of such good common sense, love and humour.  It helps him too !

 

Keep safe, keep warm, huge hugs and a  massive welcome 

 

Gilly XXX

 

 

 

 

 

Janny J
Member

Re: Living with this diagnosis

 

I am new on here.  i have just been told that my cancer is primary in Breast and in lung. been left alone to deal with it. have not had phone call from my nurse yet. to be honest,  tired of putting on brave face.

do you sometimes want to go somewhere, like a hill top or field and just scream?

why should we be left to live like this? 

why should we put our friends and family through this cancer merry go round?

why should we beg or chase for help?

so not fair!!!

get angry and upset when you need to. shout, scream, cry.

surround yourself with understanding people and not waste time on the ones who don't want to understand.

take care.

 

Seabreeze
Member

Re: Living with this diagnosis

Hi Roast Pork,

That's good! just keep going and build up gradually. This is where that line about being kind to yourself counts....you've only just finished a round of treatment!

You know the great thing about gardens is that even if they get overgrown there's still beauty and nature to be seen and found. Personally I think so much of the world is so manicured it's healthy to have a bit of wild or semi-tamed wild in a garden! Nature likes it too!

When you feel a bit better and spring comes you can maybe start doing little bits and befriend the local robin in the process. Tad overgrown? Don't worry about it. The garden will still be there, possibly with a few additional insects and butterflies! 

Well remembered and thank you - yes, it went well though whether I've pipped the competition to the post is another question! Working on another application...it's not too bad as long as I've spotted the next one to focus on.   

X Seabreeze

 

Pesto
Member

Re: Living with this diagnosis

Hi Seabreeze

 

Actually did as promised ( it really helps going semi public ) and walked down the garden and back for almost 10 mins.  A few days of that and I will be building it up.  sadly though the garden looked an absolute mess and needs some very serious work.  It is not going to depress me yet !!!!!!

 

This forum is very inspiring.  Reading about others in the same dilemma helps, along with the tips and the virtual banana muffins.  Though still waiting for the butterscotch sauce.

 

Hope the interview went well, goes well.

 

Hugs

 

Gilly

Seabreeze
Member

Re: Living with this diagnosis

Hi Roast Pork,

Spring soon which might help inspire you into the garden!

X Seabreeze

Pesto
Member

Re: Living with this diagnosis

good morning Gillyflower

 

Love the name ( I went for that too )

 

Thank you so much for your superb, enlightening, uplifting and very personal post.

 You are so right.  It is almost as though you have seen in side my head ( in a very nice way ).  Exersise is my next huge challenge,  you suggest walking for 10 mins -  whatever the weather is terrifying  mmmm.  But I didn't realise how little walking I am doing now.  Until October I never gave it a second thought popping to the shops, stopping for a coffee walking around a department store etc.  I have been nowhere apart from the hospital 3 times and the dentist 4 times.  So in all honesty I have morphed into a couch potato.  I would rather be on my computer all day rather than even consider ironing and using some upright muscles....

 

So, challenge on.  I will start with my garden because it is quite large and even walk to my dust bin who has been out more since March 2020 than me.....

 

many thanks for the inspiration, it also means I have to change out of my very friendly jim jams.

 

Big hugs, stay safe everyone 

Gillyflower
Community Champion

Re: Living with this diagnosis

Hi Mclaire,

I am also sending a big virtual hug because it is heartbreaking that anyone has to go through what we do xxx

Please do reach out and ask for support or share your feelings here any time, that's what we are all here to do.  I would not have gotten through the past 12 months if I hadn't been able to access this amazing community and feel like I could talk to other people who could relate to what I was going through.

There's already been some great suggestions below that I'd also recommend you look into.  To add to those things, you can also give the Breast Cancer Now helpline a ring any time just for a chat - I've done this on several occasions and its always helped me to feel calmer.  I also keep in touch with my local hospice, who offer counselling and just a bit of general support over the phone if I want it.  

I remember very vividly what it felt like in those first few months of secondary diagnosis.  Like you, I also thought about ending my life.  I even spoke to my partner about it and said "There's no way I'm doing this, get me to Dignitas before I am too ill to do it."  Sometimes I still have days like that.

A few other things I've done that have really helped me (and by no means do they resolve things completely but have helped me to be in a much better place)....some of these sound very morbid but I honestly think that facing these deep emotions and fears head on have really helped me to grow and adjust to be the happier person I am now:

- Focus on small goals to regain some of my health and be pain free.  Feeling physically well is an enormous part of who I am, like you!  So I started at the bottom and set myself a plan for how I was going to get back into exercise routines, healthy eating and good sleep.  I broke my goals down into really small chunks.  I started off by forcing myself to walk for ten minutes a day, no matter how tired, upset, aching or resistant I was to the idea.

- An honest conversation with my family about how I feel about my own death and dying and talking through all those raw emotions together.  So tough, but such a relief too!

- I wrote a Will so that I could stop worrying about what my partner would need to do with all my stuff as well as what my wishes are for funeral etc.

- I live my best life now and make choices that I wouldn't have before  - this gives me a great sense of freedom and of really "living" in the meaningful way that I want to.

- I practice daily gratitude (I watched loads of documentaries by Simon Reeve and other similar presenters about war torn countries, refugees, human rights issues etc) and reminded myself that no matter how bad things seem for me, at least I do have things to be very grateful for (this has probably been the one daily practice that has changed me quite dramatically)

- I remind myself every day that nobody has any certainty of their life or health.  People live in a bubble of ignorant bliss most of the time.  We all have to face dying at some point.  Some of us have the struggle that we have to face going many years before we thought we would.  Accepting that it is what it is and stop thinking unhelpful thoughts like "this isn't fair" or "why me", because I'll never get an answer.  I realised this most strongly when I used to go and watch the baby ducklings learning to swim up the local river every spring,  Usually a few months later I would find the neighbour's cat had caught one or two of them and I felt so sad.  It was a very big reminder to me that nature will do what it does, so the best thing to do is accept today for what it is and don't worry about tomorrow.

All this didn't come easy.  I had to work at it every day and the first few months I had terrible sleep, nightmares, emotional breakdowns, I couldn't face any of it.  Dealing with trauma, shock, grief and loss is a process and you will find that you'll figure out ways of adjusting and coping as you go along. 

Now I am in a much better place and I feel so much more at ease with living with secondaries, I feel like its easy for me to say all of this but I do remember vividly how awful it was at the beginning.

Tap into all the support and resources around you that you can, express your honest emotions and ask for support when you need it.  You are not alone xxx

 

Seabreeze
Member

Re: Living with this diagnosis

Hi MClaire,

I hear you.....sending you a big hug...I would be lying if I said I had been in such a situation, although I had a significant secondary bc scare, so for awhile I had a glimpse...

I really feel for you, and want to add to support and comments made by Kitty.

While I appreciate fears looking forwards, do remember that even if you can't run around like you used to, you can still give lots of love to your family, particularly your young daughter, which she can keep with her. I guess what I'm trying to say is to give yourself credit for small acts of love and care with your daughter. It's often small things and moments which are special.

You should be able to access specialist counselling for those with cancer, going via your breast care nurse. I found sessions with such a counsellor really good and helpful, since they understand how much bc effects our worlds. Some organisations such as the Haven also offer counselling, possible Maggie Centres do too? 

The pain must be very wearing - have you spoken to your oncologist and GP to see if anything can be done to reduce or manage the pain, since proper pain management might help how you feel too? 

Sending you a big hug, 

XXX Seabreeze

     

        

HelloKitty_04
Member

Re: Living with this diagnosis

My heart has broken reading your message.

im also TN with mets and understand every single word you have written.

This disease has stripped us of everything we knew but even so-you will find the strength to carry on for you & your wonderful family. All we can do is take it one day at a time. And also your scan results were good also.

You need to speak to a counsellor & think about an anti depressant because others I’ve spoken too say its really has helped them.

There is so much support available-you are never alone in this journey.

Please keep in touch

Gemma xxxx

Mclaire83
Member

Living with this diagnosis

Hello

i just need to voice this somewhere. I don’t know how I’m meant to live with this, the constant worry, pain, fear, unknown, side effects. 
I have TN MBC and I’m on my 5th cycle of abraxane. I have constant headaches and back pain. 
I’m 37 and have a lovely husband and a 4 year old daughter, we are so fortunate and have such a happy life and home and now this has pulled the rug out from underneath us. I don’t know how to live with this anymore.

I was a healthy, do it all type mum and now I can barely do the school run, so much has changed and all in only a few months. I have so much to live for and a life I want to live. So much to see and show my daughter. 

I have been having thoughts about ending it all but I couldn’t do that to my family, I can only see pain and suffering ahead and for my family and daughter to see it all breaks my heart 

I don’t know if anyone else can relate or give me some advice. How do you carry on??