Forum Discussion
My story
Hi, I am in my ten month after having my surgery July will be a year.
I have had up and downs with pain as I had a lumpectomy and had a small amount of fluid not enough to drain just give me grief, I now have lymphodema and a pink rash which I had checked out and it's to do with the fluid thankfully . I have been having lymphatic massage once a week and it has helped,I tried taping had it on for one day had a reaction so had to take it off, now I use mobiderm inside my bra everyday and that has softened it up a bit and I have little pain as it was 24/7.
i don't think I have had so much emotional stuff as I have had with this , I went to my first forum last week I had nothing really in common with these women other than having breast cancer, so many sad stories I have had all good things with mine and have been very lucky I know, one ladies story effected me and quiet a bit felt so sorry for her others horrible stuff had happened to them a depressing night,I went to work the next day and had to come home started crying very emotional I'm not ready for this stuff !
I have had up and downs with pain as I had a lumpectomy and had a small amount of fluid not enough to drain just give me grief, I now have lymphodema and a pink rash which I had checked out and it's to do with the fluid thankfully . I have been having lymphatic massage once a week and it has helped,I tried taping had it on for one day had a reaction so had to take it off, now I use mobiderm inside my bra everyday and that has softened it up a bit and I have little pain as it was 24/7.
i don't think I have had so much emotional stuff as I have had with this , I went to my first forum last week I had nothing really in common with these women other than having breast cancer, so many sad stories I have had all good things with mine and have been very lucky I know, one ladies story effected me and quiet a bit felt so sorry for her others horrible stuff had happened to them a depressing night,I went to work the next day and had to come home started crying very emotional I'm not ready for this stuff !
16 Replies
- @Cowesgirl life is tricky, no one persons experience is the same. I had the same thoughts as yourself before going to a reconstruction group in Perth, but to tell you the truth I found a wonderful group of ladies willing to share their experiences. There were 22 lovely ladies from all walks of life willing to share information. I will definately go again after my reconstruction and i have met another lady who is at the same stage as me. I hope that my friendship can support her as it can be hard to confined in a person who hasn't had bc.
You need to do what feels good for yourself.xx - I must have gotten lucky with the group i joined. We meet up for lunch once a month or so. The focus is never about breast cancer but having a laugh with other women who understand what you have gone through. Unfortunately i left it until after my treatment was over to reach out. I really could have used some of that laughter during as its a pretty lonely journey otherwise. @Cowgirl1 regardless of the treatment path any of us take...and everyone's s different...we all had to hear the words “you have cancer” and that's pretty darned scary. Bug hugs Anne
- Zoffiel nails it again - I had much the same feeling about support groups. I felt I was handling my own issues not too badly but didn't feel like coping with other people's experiences as well. But when facing my third reasonably serious side effect in seven weeks, I did seek some guidance. A really good counsellor clarified that I was actually dealing with cancer pretty well but wasn't dealing with the fact that the "normal" working life I was keen to maintain was pretty crazy! Cancer has an interesting habit of throwing up the secondary plots in your life - hard to manage it and treatment, and sail through ropey marriages, difficult sibling relationships, batty working practices! For me it was a good thing to deal with, but it can be awfully hard for some.
- Well I had my holiday at casuarina cottage through the otis foundation what a wonderful foundation and the people that put their places up for people that have had cancer. We had four days great weather so close to the beach Silversands, we did victor harbour to goolwa on the cockle train which I have never done, so thank you again Jan & David
- So looking forward to my week hols in June I have booked a retreat stay through Otis foundation near the beach just hope it doesn't rain for four days lol
- @cowgirl I totally relate to your emotions - and as @melclarity says, we have all been there.
It's a whole new world....and we get it. Look after yourself - and sometimes it's important to quarantine yourself as well. I have tried as much as possible, to surround myself with positivity, developing a calm, positive mindset and focussing on ME: getting better, getting fitter, being happy. This is balm for the soul that has helped.
Take care of yourself
Nikki xx - @cowgirl it is incredibly overwhelming and nothing can prepare you for it. I think thats why I love the forum here, as theres also a lot of joy and celebrations shared, together with understanding and lots of love and comfort.
Everything you think and feel is validated here, we absolutely get it, I remember in 2011 my world was ripped apart with my first diagnosis, I was only 6 months out of my marriage with my 2 children and starting again. I dont know how but I got through it with very little support. Nothing prepared me for 2015 a recurrence, it really brought me to my knees in a much bigger way. Just remember putting you first is so important, one moment, one day at a time, dont look too far ahead, and you will absolutely get there slowly. Bad days and good days but you will continue to look at how far you have come not how far you have left to go. Hang in there, we are all here. x Melinda - @Cowgirl same thing happened to me. I have been to several activities with women that have had breast cancer, Sometimes the meetings were good. Other times it was so sad. It would take me days to get over it. The very young women with young children effects me deeply. I think everyones journey is unique.
The actual fact that you like many others was getting on with life and suddenly without warning you have cancer. That is a shock that I do not think anyone forgets,. Sure you can come to terms with it but feel the same again ....I dont think so
I think just being you is the most important thing. - Thank you all for your comments it is appreciated, one thing that I found a great thing was my journey book I have written everything that has happened to me and how I feel at the time. It's good to go back over it and just see how far you have come with pain especially at the moment I am around 1-2 which I don't realise until I go back and see most of the time I have been 3-4 with the pain.
Never feel guilty because you are lucky enough to not suffer every complication under the sun; lymphedema is a shit of a thing which none of us want and having to live with that is a bloody nightmare. This is not a competition and one persons' less stressful process doesn't mean someone else has to do it harder.
I get it with the forums. Anything resembling a support group gave me the creeps and I didn't feel anything they were doing or talking about related to me. Still don't. I was very fortunate after my first diagnosis10 years ago to come across a program called CanNet (that will ring some bells with a few old timers) which opened a door to consumer advocacy which then lead me to heaps of training and ultimately a gig with Cancer Australia reviewing grant applications. It's given me a sense that I'm doing something useful that needs a brain like mine. That, and the practical support I was able to give random people over the years, has been the only positive thing that came out of breast cancer for me. I suck at fundraising, visibly fidget when faced with emotional displays and will only hug about ten people. Touchy feely I am not, which doesn't mean that the whole business, particularly now I have a recurrence hasn't hit me hard.
Cancer doesn't change you, in my opinion. I liken it to having too may wines, a few filters may come off, but what is at the core of you remains the same. That's why we all deal with the crap differently.
