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nicole_h's avatar
nicole_h
Member
11 years ago

frustrated

Hi all. Never really did start with a blog properly. Im still not sure if this is the way to make contacts but I need to talk to someone, anyone, regularly to compare experiences if nothing else. I don't have any contacts and dont know how to join a group let alone read other blogs. I need more support so I thought id try starting back at the beginning. I was diagnosed at 49 with 2 early bc lumps after self detection. I had mammogram and ultrasound & needle biopsies back on 18/5/14. I had 4 rounds of neoadjuvant chemotherapy in Orange,1hr away, and had complications nearly every cycle. Including hospitalisation for neutropenia. My sister also suddenly died during my second chemo. The grief consumed me whilst I tried to complete my next 2 cycles. Surgery was on 21/10/14 (lumpectomy and reduction ressection) which I was recovering well from when I had to go back for more surgery. The margins weren't clear enough and lymph nodes were involved. That was 4th Nov and I'm still recovering. Got an infection the drain came out yesterday after over 3 wks. Im seeing a surgeon on Monday or Tuesday to get the all clear for more chemo. Probably have to have the collection surgically removed as the drain was still60ml/day and needed to stay in but was irritating everything and making my infection and the pain worse. I'll then have 6 wks of radiation to finish off (if I make it that far!). I'm so sick of being told to stay positive through my journey. I find it really difficult to be positive. I'm bored, I'm sick of myself. I'm sick of being sick and bald. My hair is coming back like mottly grey carpet. I've been so unwell I haven't been able to do any simple daily tasks. I'm not even driving yet. I enjoy reading and crosswords but my eyesight has gotten so bad that if i can focus and even with glasses I get a headache. I'm still not that well but chemo is supposed to start next week. I'll see if I get any better support or follow up care this time. Couldn't have been any worse first time round. But I'll expect the worst but hope for the best from now on. Hopefully that attitude will help me cope better with the setbacks from here. Very teary all the time and if i ever get well enough to go out I feel too ugly to be seen in public without a wig and its now too hot for wig or scarf plus ill be losing my hair again in the next few weeks anyway. So no Christmas cheer for me. Can't afford to risk infection. If anybody has a similar story id love to hear from you and how you cope. Sick of being sick and useless. Nicole x

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  • nicole_h's avatar
    nicole_h
    Member
    11 years ago

    Thanks for your replies. I'm too teary to be out in public at all. I don't really have a friend or family member to vent to like that. I find I have t be strong for everyone else. I'd really like to meet someone else who's going through it but the support group I have attended doesn't allow for you to meet and talk. It's mostly about the guest speaker or the topic for the night or the dinner. To be fair I've only made it twice.  I have to rely on a friend to be free to take me.

    I'm not in the outback but feel like I may as well be. I haven't even been able to drive so am relying on family to get me to my appointments as well as do the cleaning, cooking, shopping etc. My bc nurse has been unhelpful so far to say the least. I have complained about the whole service from Orange Oncology so maybe this time I'll get some support. I have met my radiation therapist who's been fabulous already just calling once a week to check on me and I'm not even his patient yet. So stupidly I'm looking forward to radiation therapy now. Thanks for listening. Nicole x

  • rowdy's avatar
    rowdy
    Member
    11 years ago

    Hi Nicole cant add much more than Deanne,try and get some counselling and get on here any tme and vent it does help just to be able to get out how you are feeling and we all have been where you are at some stage.

    Sending you hugs be kind to yourself and go out and have a cuppa with your scarf, wig or nothing on your head and just smile at people when they look at youxxxxxx

  • Deanne's avatar
    Deanne
    Member
    11 years ago
    With what you have been through it is entirely understandable that you are feeling low at this point. I think many of us feel like that at some point (for me it was after hospitalization for nutripenia at 4/6 chemos) without the sudden death of a loved one to contend with as well. It does get SO annoying when (well-meaning) people try to get you focusing on the 'positives'. When you feel so unwell and like some sort of prisoner to this disease and treatment regime with no end in sight and lots of unknowns still to endure. I understand your boredom and frustration with not being able to do ANYTHING. I loved reading too but chemo affected both my eyesight and my ability to concentrate. Sometimes all I could do was lie down, eyes shut and talk to a friend or family member on the phone. Time dragged and I hated not knowing when I would get to feel better. Of course even when I did feel a bit better I knew this would be short lived because the next chemo would set me back again. The only time I felt ok was when i was on the steriods for the next chemo. So what you are feeling is VERY understandable. However, with all the added stress of your infection and also the terrible shock of losing your sister you really could do with some extra support. The Cancer Council can be of help with phone counseling. Getting support from other ladies on here is also a great idea. I know a couple of ladies have lost someone close while going through this, so they maybe able to make contact with you. I know that face to face support will be too hard for you at the moment but down the track there maybe a support group you can join. BCNA also have some very good info on their new fact sheets for Anxiety and Depression. Just use this site to vent how you are feeling. There will always be someone to listen and understand. Keep in touch and I hope that this will lead to some good support for you. Sending you many cyber hugs. Deanne xxxooooo