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Newbie

21 REPLIES 21
Carolyn52
Member

Re: Newbie

Hiya I accidently dipped into this thread by mistake and thought I would post whilst I was here!
Hope u r coping cavills and everyone else.
Sun is shining here in Devon and it gives us all a focus on coping with our aches and pains.
Hugs xx
Carolyn52
Member

Re: Newbie

Hiya Kay ...hearing you have been on this terrible journey for 20 years is certainly an inspiration to us newbies ( secondary dx Oct 2015)
Sometimes I just shake at the thought of all the cancer in my bones and every ache and pain scares me. As a nurse it must b worst for you as you know probably what is happening.
My two best friends are retired nurses and I try not to ask too much .
Hugs xxxxx
pussy
Member

Re: Newbie

Hi newbie

sorry that you have had to find your self here but i know we are all different with the cancer in differing places and different types and hopefully you will get support from us ladies here 

i was originally diagnosed at the age of 43 in 1995 my next official diagnoses was in 2010 but i had symptoms long before that, with my back i was even struggling as a nurse at work with the pain i wanted to cry but kept getting told it was muscular i use to roll on the floor in pain it was in my spine it had also grown from behind my implant (which i had done after in 1995) into my chest wall i am er+ her2- i have good days and bad days had  a few different treatments. what i would like to say is try and keep calm no stress if possible  

look for support (we have no groups in my area at least no one has told me about them) you should have a breast cancer nurse appointed to you who should see you at least once a month till you settle and then she may come every 2 months and should be available at the end of the phone should you need her. yes it is frightening the fear of what will happen i have been through all that and still do on occasions but we have to try and tell our selves we will not let it beat us and live our lives as best as we can even if it only from scan to scan. i hope you have a good network of friends to support you as that is what has helped me. they come pick me up and we go off for weekends they know i can not move as fast as them i may be awake most of the night but we still manage to have some laughs we also lunch every couple of weeks sometimes with other friends i can be out for lunch every week. and that is what you need 

 

hope we can help you 

kay

Cavills
Member

Re: Newbie

Thank you ladies for all your very kind words. I am getting used to navigating the site and have been reading a lot of the posts. Hope everyone is ready for a hood weekend xx

Deedeepuss
Member

Re: Newbie

Hi Emmy

Slowly slowly one day at a time.

I understand what you're saying, I'm a very strong person, but lost it over the last 3 mths since I found the cancer returned to my liver. My partner is in denial, but won't consider any help. The last 2 weeks I feel more me. I've had reflexology which i think helped.

I think maybe because we always appear strong, in control, don't worry I'm ok sort of persona, when we are 'floored' others aren't used to it and really don't know what to do or say. Because we aren't used to it we don't know what to say to help them know what to do because we don't know what help we need from them. Its also hard to ask for help when we are so used to doing things for ourselves and others. Not sure if that makes any sense.

You're doing really well. My dog kept me going when I last had chemo. Their love is unconditional. It's good to tell them how we feel.

Surround yourself with the positive people, they'll get you through the bad times.

Take care x
JulieD
Community Champion

Re: Newbie

Good to hear from you Emmy and sounding more positive. One day at a time ..... Hope you had a lovely dog walk! xx

emmy
Member

Re: Newbie

I'm back! Thank you so much for your wonderful,supportive replies they made absolute sense. I have sort of come to from the shock and am treading water but still afloat! I am normally a resilient,humorous kind of person so the total freaking out was a shocker to me, funny I have always been a strong woman and this totally floored me. I have had first chemo which was rough but as this was two weeks ago I am at the moment feeling a bit more human 😄 I have also been doing some research as I am the kind of person that needs to know and hopefully this treatment regime will slow things down. I have been allocated a palliative care nurse from our GP surgery which took me aback but she is lovely and is working on hubby to open up as she realised how distressed he was though he tends to bottle things up, whatever she said worked we are now slowly talking things through. I get the 'friends' thing it happened when I had my primary diagnoses and I sort of worked my way through who was who quite depressing but I am much happier with those who stuck the course with me. I want to say many thanks ladies for being here and getting it, I still can't talk to people about it all but then I don't feel the need to explain either. I have snuck out from the duvet and even after the initial tiredness started walking the dogs with hubby so lovely to do 'normal' things once again. Sending hugs to all with heartfelt thanks Emmy

Carolyn52
Member

Re: Newbie

Hiya Cavills. I'm glad u have received some replies and the ladies here certainly know how to put feelings into words ...we all feel fear of the future but we have no choice just have to deal with it daily.
The Sun is shining today ....feel positive and strength to fight another day ...
Hugs xxxx
JulieD
Community Champion

Re: Newbie

Dear Cavills,

 

Stick with us - we get it!

 

Think we've all found that some 'friends' don't seem able to handle our illness, it's very sad and quite hurtful but ultimately we don't need friends like that, we need people aroind us who will let us be as we need to be at any particular time.

 

It's hard for family too but whilst we need to recognize that we also need to start putting ourselves first, we need our energy to deal with treatments, scan anxiety etc.

 

This is a great place to feel free to say all those things you feel you have to bottle up to protect loved ones.

xx

Cavills
Member

Re: Newbie

Oh this is so why i joined this forum. My hubby is constantly trying to wrap me up in cotton wool whilst my daughter is in total denial! Friends (who i thought were friends) no longer call, i think they are embarrassed i an still alive, and on bad days i sounds like a broken record .... Glad ive got that off my chest!
JulieD
Community Champion

Re: Newbie

Oh Emmy,

 

My heart goes out to you. This is a cruel disease and it affects every aspect of our lives. The early days are so very hard, we are trying to take the news in, digest it and learn how to adjust and cope and on top of that we have to see the pain it causes our loved ones and we want to protect them.

 

My partner fell to pieces the first few days but has been my strength eversince and is supportive and caring, I'm very lucky, but I  do still feel guilty (illogical I know because it;s not my fault) and I know she has to live with this daily just as I do and it's har, we just have to try to live each day at a time.

 

It does get easier, you will find your own way and you will cope, yes you will have bad days and wobbles but they become less regular. You need to do what is right for you and if that is being on your own then do that but not for too long because you do need people and if you become too cut off it can increase the chances of depression. Be gentle with yourself, give yourself space and time. I won't lie, things are never quite the same, they can't be, but you will find a new kind of normal and you can and will live with cancer.

 

My mantra is 'hold on to hope'.

 

I send you love and strength, the experience hat things become easier to deal with and hope that treatments work well for a long time (I'm 6 years bone mets next week) xx

Deedeepuss
Member

Re: Newbie

Hi Emmy

Sending you big huge hugs.

Take care xxx
Rachel10
Member

Re: Newbie

Hi Emmy, it is sooooo hard watching someone you love hurting because you are ill and they can't do anything. I frequently feel so guilty about putting my husband through this. His way of coping has been to be active: he massages my back when the pain us awful, he has become an expert in aromatherapy (and spent  a fortune on the oils to relieve pain, inflammation!), researched every alternative therapy going and has me taking sodium bicarbonate, essiac tea, turmeric, all sorts of stuff: all because he refuses to give up and is doing everything he can to keep me going. I wish he didn't have to and I wish I could protect him and my kids from it all. It hasn't got easier but we have definitely got stronger. 

 

Don't be hard on yourself for hiding under the duvet occasionally. There is nothing wrong with wanting to hide from it all sometimes. But don't forget to try and do nice things with each other sometimes too. 

 

Sending you you strength and love. 

 

 

emmy
Member

Re: Newbie

Sorry ladies I posted then...............freaked out!! I think putting it down made it more real and I went into foetal position,pulled up the covers and let it wash over me. Since then I have started chemo taxatere (spelling) along with Herceptin and Perjita 7 more chemos and H&P for life which scared the bejaysus out of me specially having a pic line but it's been a godsend. I had a 4cm lump removed in 2011 with two WLE,rads and Herceptin along with arimidex I tootled along quite happily then began suffering severe shoulder pain which was treated as trouble with Trapezia but then I suddenly developed a lump on my sternum and swelling of my right side collarbone so what should have been my 'very last app to be told bugger off and get a life speech' , that became you need a ct scan and the rest is history. I am trying so hard to be cheerful, I don't want people to feel sorry for me so I have drawn up the drawbridge for now as I can't cope with people right now. Hubby has taken this hard and after reading the posts on guilt spoke so,so loudly to me. I can handle things but watching those you love hurts so much more,will that go away ? I think I need ladies who understand what's happening I have been diagnosed with shoulder,lung and sternum after tellin doc I had breathing issues but hey it happens I just want reassurance from someone cos I don't like my night company (too much to think off) bless you all I hope this missive made sense xxxxxx

Carolyn52
Member

Re: Newbie

Hiya ..I'm trying to keep off the forums too as it can be hard to focus sometimes . Here we dribble on with our lack of sleep etc. But it can be quite uplifting counting things at night and wondering if others are also doing the same . I just couldn't do the a to z of cakes ...only got to f ...then felt hungry !!

Hugs everyone xxxxx
Deedeepuss
Member

Re: Newbie

Hi Cavills

I haven't been on the forum very long, but everyone had been so supportive. I've had some fabulous ideas to help me sleep when I wake for 2hrs at a time.

Past 3mths have been very challenging for me, but found my mojo again now. I was diagnosed 2005, secondaries 2012, 2013, 2015. In 2005 I looked at forums but found them so depressing, all doom and gloom so kept away. Here is so different, so much more positivity. Everyone here for each other.

Welcome xxx
JulieD
Community Champion

Re: Newbie

Hi Cavills,

 

Glad you found the secondary section. Lots of lovely,helpful, caring women here. You will get lots of support and you cn ask anything - nothing is a stupid question.

 

I had my primary dx in 1999, belts and braces treatment : CMF+Doxorubicin, Rads, Tamoxifen, oopherectomy. After several months of complaining of pain to GP I was dx with bone mets n 2010. Had rads,and am on Zometa and Letrozole plus pain meds and generally managng ok.

 

Look forward to getting to know you Smiley Very Happy xx

BJH
Member

Re: Newbie

Welcome Cavills.  

 

You've certainly come to the right place.  I especially get benefit out of the Live Chat on Tuesday's at 8.30pm.  I was diagnosed last year, secondaries (bone mets) at same time.  I'm a 47 year old single mother of 2 gorgeous girls age 8 and 12.  I try to keep positive (for my girls) but also a bit realistic.

 

Some days/weeks/months can be harder at times, both physically and emotionally.  But we have to take each hurdle as it comes, make the best of things and get on with enjoying life. Xx

 

 

miller08
Member

Re: Newbie

Welcome (if thats the right word) to the group. It is good to read the experiences with others in the same boat. Everyone struggles at some point, just be kind to yourself. Do what you can and dont worry about things you cant manage. Focus on the positives xx
Carolyn52
Member

Re: Newbie

Hiya. Welcome to this forum. We are all in the same boat here ....taking a day at a time and dealing with what life dishes up to us.
Try to cope with treatments , side effects and aches and pains! .
There are some truly wonderful ladies here that will support you. I'm a total wimp with it all since being dx October 2015 with bone Mets after original primary in 2004.
Please post here day or night as a lot of us are awake during night .....
Loads of hugs xxxxxx
Rachel10
Member

Re: Newbie

Hi there - sorry to hear that you are struggling a bit and hope you can get some support here. I think we can all struggle at times when things aren't going so well. I feel for you having to give up work. You haven't said what you are struggling with? Have you got any centres near you that have support groups? I tried "the haven" in Leeds who have a group specifically for people with secondary breast cancer ( and their families). Is there anything like that near you? It can really help to connect with people like that. 

 

Sending you you good vibes and hugs

Cavills
Member

Newbie

Hi. Just wanted to introduce myself to the group.  Original dx in 1999 breast cancer no spread so chemotherapy and move on. Secondaries to skin and lungs in 2009 chemo, oophrectomy and Anastrazole and that's me!  I retired on ill health 3 yrs ago from teaching which was becoming too stressful for me and since then I have struggled to cope. So just looking for a little support and hope I can support in return....thank you.