Forum Discussion

Katherine_D's avatar
Katherine_D
Member
4 years ago

Feeling very isolated

I am 35, and was diagnosed last year on July 12th with triple negative inflammatory breast cancer. I started AC double dose chemo on the 27th of July and then paclitaxal 21st of September. Early November it became clear the pacli had stopped being effective on the cancer in my breast so I was zoomed into surgery and had a unilateral mastectomy and auxiliary lymph node removal November 25th. I started Carboplatin December 20th and have it again January 11th, before switching to radiotherapy five days a week for five weeks January 31st. After that I’m being told two more Carboplatin, then capecitabine for six months. I’ve had allergic reactions, side effects and difficulties throughout. 

I think due to covid there has been no support groups that I’ve been put in touch with and the only people I already know who’ve been through breast cancer are in their 60’s and have had a very different journey and experience and support network. 

I’m single, living in share accomodation in the inner west of Sydney and am currently disabled due to my mental health (and was before my cancer diagnosis). Some friends have been amazing and some have been so selfish and awful it’s hard to believe. 

I’m just wondering if there are support groups that I’m just not finding. Either for younger people or for LGBTQIA+ people. Covid has made everything harder and I’m really finding it all very exhausting and overwhelming- especially since the world keeps on burning and normal everyday life nonsense keeps happening. I’m exhausted and struggling. Any help much appreciated. 
coping
depression
support-groups
triple-negative-breast-cancer
  • Locksley's avatar
    Locksley
    Member
    4 years ago
    Sorry to see you here.   Due to covid so many in person groups are not able to be held.  There is a lgbtqia group here you can ask to join.  @Mez_BCNA are you able to assist.  Do you have a breast care nurse you can reach out too.  Is there a social worker in your treating hospital.  Wishing you all the best with your treatment.
  • FLClover's avatar
    FLClover
    Member
    4 years ago
    Hello 🙂. I’m in Sydney, and I’m 41. I’m happy to meet in person of you are. I’ll send you a private message so check your inbox 😊.

    M xx
  • arpie's avatar
    arpie
    Member
    4 years ago
    So sorry to see you here, @Katherine_D - you are having a rough time of it & Covid/isolation is just making it worse.  :(  You are in the right spot tho, for info & support.  Feel free to raise any questions, or just have a rant/rave ...  

    Do you have any hobbies that you may have neglected since your diagnosis?  I find that keeping busy (even doing internet research on interesting areas) is a good way of staving off depression & feelings of loneliness ....

    As well as the LGBTQIA group, we have a Young Women's group as well, that you may like to join ... as @Locksley says - can you contact your BC Nurse or Social Worker to give you additional support xx


    If you would like to read up on other members with TN/inflammatory .... please check out this search result ... 
    https://onlinenetwork.bcna.org.au/search?adv=&search=triple+negative+inflammatory&title=&author=&cat=all&subcats=1&tags=&discussion_discussion=1&comment_comment=1&discussion_poll=1&group_group=1&within=1+day&date=

    or straight TN posts here:
    https://onlinenetwork.bcna.org.au/search?Search=triple+negative

    take care & all the best
  • Katherine_D's avatar
    Katherine_D
    Member
    4 years ago
    Locksley said:
    Sorry to see you here.   Due to covid so many in person groups are not able to be held.  There is a lgbtqia group here you can ask to join.  @Mez_BCNA are you able to assist.  Do you have a breast care nurse you can reach out too.  Is there a social worker in your treating hospital.  Wishing you all the best with your treatment.
    The breast care nurse has been really lovely and helped with getting me a wig and directing me to where I could get a prosthetic and was there every day I was in hospital post surgery and was very supportive, but I am unsure what the role entails and don’t want to bother her as I know how busy she must be. 
  • Katherine_D's avatar
    Katherine_D
    Member
    4 years ago
    It just feels like every stage something has gone wrong. I also have deep veins and very sensitive skin so every treatment has been a trial of pain and endurance just due to the cannula in the wrist or back of my hand. Add in that I was allergic to pacli and instead of 2 hours it would take 6+ hours to do. Now Carboplatin has turned out to feel like the allergic reaction of the paclitaxal during the infusion and then nausea and low energy, stamina and shortness of breath for 2.5 weeks afterwards - with AC I only had that for a week! I’m worried about the second one this week. 

    Flatmate situation has deteriorated so it looks like I’ll be moving house within the month on top of everything else. So I’m trying to reach out now, in the knowledge that the next month is going to be hard and I’m going to need extra support. Thank you for the responses. I’ve joined the young women’s group and LGBTQIA group. Thank you
  • Jwrenn's avatar
    Jwrenn
    Member
    4 years ago
    @Katherine_D I believe the breast care nurse is to help answer any questions you might have and a go between wth doctors. I rang mine up when I wasn’t sure what was next and when I had appointments with the oncologist. It was the start of Covid so not a great time to be treated. She was great, found out what I needed and was also a shoulder to cry on when things were getting stressful. I haven’t needed to talk to her for 18 months but I would ring again if I felt I needed to. 
  • patdug's avatar
    patdug
    Member
    4 years ago
    Hello @Katherine_D
    So sorry you are having  a difficult time with your treatment regime....I did to and ended up in hospital...but got through it...was determined to... 
    It may have already been suggested but can you speak to your doctors/treatment team to see if you can access someone to talk to attached to the the team or separately...so you can 'debrief'/talk to a professional who may be able to support you at this time? Talking with someone really does help to lighten the load...
    For all other physical side effects ..try to keep a list/diary of them and discuss these with your doctors (which you are probably already doing) but good to seek understanding of them anyway....
    Take care and we are thinking of you...warmest wishes xxxx