Chemo over, but just the beginning...

PatsyNPatsyN Byron BayMember Posts: 11
Last Friday I finished 5 months of chemo, 4 AC dose dense every two weeks then 12 weekly taxol. The last 3 weeks I only got out of bed with painkillers such was the burning in my muscles and bones. My fingernails and toenails went purple from week one and are now all just yellow horny structures dropping off bit by bit. I move like I'm on my last legs and have developed a limp.

I was diagnosed and on chemo within 3 weeks. My tumours were large (35mm & 25mm), invasive, locally advanced all in my tiny little AA breast. I will have a full mastectomy within the next 30 days with a sentinel lymph node biopsy and 3 of my lymph nodes from my armpit removed. I was told I would have 2 drains plus a pump? That's 3 tubes coming out of me for several weeks. Then another little rest and 6 weeks of radiation at the hottest time of the year. Then more meds for at least the next 5 years.

I feel like I've disappeared into a void and the person going thru all of this has no feelings or emotions. I hate the uncertainty and have often thought in the last 5 months that I'd be happy to die were it not for my family. 5 months of hangovers every morning with no relief in sight. Everyone around me thinks it's over and that 'soon' I will regain my strength. I don't believe that at all but put on a brave face to keep everyone comfortable. This is not living and If I'm too tired to ride my horse then my life is over. My grandchildren think I'm boring and don't want to come here anymore. There's a blowfly in my bedroom taunting me. Tuesdays were always my worst day after chemo... And I know I am better off than so many - I have a close friend who does not have long left due to oesophageal cancer.
We talk about death and miracles.

(I would have posted this in Tests,Treatments and Side Effects but it wouldn't let me???)
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Comments

  • LucyELucyE Member Posts: 232
    edited November 14
     Thinking of you @PatsyN and sending you a big virtual hug. I also found finishing chemo a tough time and felt very detached from my life for quite a while. I think it’s just a way of protecting yourself from so much that’s going on. Now you can start to recover physically and emotionally. 

    I found counselling was great, on the phone or in person at the Cancer Council or BCNA. Can you go for a short walk to get some fresh air, or perhaps sit in the sunshine? You take care and believe me, it will get easier. Many of us have been where you are now and we understand how you are feeling.

    Your GP might also be helpful if you continue to feel down, or need support with the side effects of chemo. Lifeline is great, especially their online service if you are feeling really low. Just take it day by day, hour by hour and know that you are doing really well with a tough situation. I’m sorry to hear that your friend is so unwell. That must be very difficult for you, but it sounds like you have some meaningful conversations. x 
  • AfraserAfraser MelbourneMember Posts: 919
    While A/C caused more long term side effects, I found some satisfaction in just loathing taxol. Nails didn't drop off but I looked like a bad case of walking fungal infection. My nose bled. My feet were very painful. And then it all started to get better. I had my mastectomy first. It was no bother at all. 17 nodes went, the drains were only there for a few days. I didn't have radiotherapy and I have 6 months more of 5 years of hormonal medication. What I am trying to say is that you can come through the tunnel, it is possible to find light at the end and you will still be there. You will be older, and there will be scars. You may also be surprisingly stronger, and may have found new things that give you pleasure. Like LucyE, I am a great supporter of some counselling to help get through. I didn't feel in a void, but I did feel quite unsure of where I was going and what sort of me would emerge. Some disassociated discussion, some advice, some practical suggestions over not many weeks made a world of difference. In your "night" of cancer, this is 2am in the morning - when everything looks at its worst and no solutions are to be found. It can and will get better, but just as you have sought medical help, now would be a good time to get some support for the mind and soul. Take care, best wishes. 
  • LMK74LMK74 BrisbaneMember Posts: 505
    Ho @PatsyN, I think it's quite normal to feel like that at times while going through treatment. It's a bloody tough and exhausting road we have to travel. I found the mastectomy the easiest part of this whole shitty journey. I was pleasantly surprised by how little pain I had.people that have not had to do this don't understand the toll it takes on our bodies. I've just finished six weeks of rads and even my oncologist said to me," are you recovered now from all the side effects". WTF ARE YOU SERIOUS. If only it was that simple lol. Hang in there and remember we all get it here.
    Wishing you better days to come.
    XO
  • Molly001Molly001 Member Posts: 293
    Dear @patsyn it's a long road to recovery, but have faith you will get there! Call BCNA hotline or your bc nurse for some support and info on where to get help with your physical and emotional symptoms. I felt emotionally strong through treatment but lost at the end of it all. I'm now seeing a psychologist under a mental health plan just to help me get my head around moving forward now I'm 'cured'. Don't feel you have to put on the brave face. Tell those around you you're struggling. You've been through a lot. Take care xxxooo
  • iserbrowniserbrown Member Posts: 1,643
    @PatsyN crumbs as I read your post you certainly have been running a marathon of treatment.  Agree wholeheartedly with comments already made, @Afraser "now would be a good time to get some support for the mind and soul."
    There's no right or wrong way to get through this and it is totally understandable that you feel like you're in a void and can't get out - but you will!  Just allow yourself, physically and emotionally, the space to adjust, recover and eventually renew and take advantage of services on offer.  Take care x

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,077
    @PatsyN
     
    Hugs beautiful lady... it is a very tough roller coaster ride none of us want to get on but on we must.... 
    I see a clinical psychologist as I have Post Traumatic Stress Disorder (PTSD) from the treatment .... I am 5 years out since diagnosis and I see her just less often.... 
    Your grandchildren will adjust kids are more resilient that we give them credit for .... Once you are completely through the chemo, surgery and Rads you will start to heal it is a process but your grandchildren will see again the grandma who they knew before this began....It took my youngest grand kids a bit to adjust as they were worried they would hurt me if they cuddled me etc... 
    those of us who have traveled this roller coaster ride get it....  Get yourself a mental health plan and see someone who understands the angst that is inside of you.... 

    Surgery and rads were my easier part of the ride..... 
    I did get very tired but I am  here 5 yrs on with No Evidence of disease (NED)

    Take it one breathe at a time. 
    SoldierCrab
  • Mrs_HMrs_H Brisbane SouthsideMember Posts: 66
    Everyone experiences this ride differently. I thought when I finished chemo I would feel amazing because the chemical shit had finished. Not the case. It took a few weeks to feel normal again. At least 5-6 weeks. I’m now 7 weeks post chemo and due for a double mastectomy tomorrow but had to postpone as I put my back out on Sunday. This whole experience has taught me to take each day (sometimes hours) as it comes cause there isn’t anything you can do about it. It does get better but it will take time. Cheers, Jen.
  • PatsyNPatsyN Byron BayMember Posts: 11
    @LucyE  I see you are a night owl as well. I took your advice and had a sit in the sun albeit in the car, whilst waiting for my appointment with my gorgeous GP. He and his wife and his assistant have all been there since I started as a patient 22 years ago. He is a GP in the truest sense of the word. A one doctor practice and extremely personal one on one attention. I am very lucky to have all 3 of them. This is Wategos Beach and was packed beyond capacity with cars looking for a spot which are extremely limited. That is one good thing about having cancer - you get the best parking spots! 
  • PatsyNPatsyN Byron BayMember Posts: 11
    @LucyE @Afraser @LMK74 @Molly001 @iserbrown @SoldierCrab @Mrs_H I'm feeling much better right now and didn't mean to send out suicide alarms. But I have felt that at times I was dieing. I remember thinking well then if this is dieing then take me. It's so encouraging to hear of others suffering, why is that so,lol? Today I have found a very handsome plastic surgeon who comes highly recommended and plan to charge thru mastectomy, rads and re-construction as quickly as possible. Of my 11 siblings five are coming to visit this weekend and I feel very loved. Thank you all for your thoughts and concerns and to share with me. It really has lifted me up. (I have been seeing a cognitive therapist for several months and she has been very helpful).
  • ZoffielZoffiel Member Posts: 876
    Hey @PatsyN. The pump they are talking about isn't a separate tube; the drains work on negative pressure (they suck, on pretty much every level) So, the pump is a bulb on the drain tube which keeps the wretched things sucking. Hope that makes sense. The good thing about drains is that someone comes along and pulls them out. Eventually. All things pass.

    I'm too tired to ride my horse too and I now have to admit that I have lost my nerve and can't, after a recurrence last year that knocked the wind out of me, bear the thought of falling off. The old bastard is now getting fatter and naughtier by the day...

    Regarding the insects--flies during the day, mozzies all night--feeling your pain there too. Trying to nap during the day while screaming 'Im not dead yet, you arsehole' isn't restful and muttering 'You'll be sorry if you do, you prick.' while the blood suckers are circling all night doesn't help with the whole mindful and connected to nature thing.

    Keep going. One-day at a time. Marg xxxx

  • AfraserAfraser MelbourneMember Posts: 919
    Good stuff! A handsome plastic surgeon sounds just the ticket! 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,077
    @PatsyN I didn't for a minute think you were sending out suicide messages just someone like I was who was struggling at that moment... We get it and a bit of sun is good for us all. 

    @Zoffiel Pmsl at the insects, while doing chemo and on zillion drugs etc  I told my kids our septic tank worms/creatures .... didnt give a sh*t, couldnt taste sh*t and sure as hell couldn't taste sh*t.....And they must of all been bald pmsl 

  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,591
    I think Patsy you were just at your low. We all have it and I had mine during chemo as well. Look with (grrr chemo brain, cant think of the word, gimme a minit)...anticipation, not apprehension to the upcoming surgery. It is a turning point to get that cancer clean out of your body. There's a bit of discomfort and healing to be done but absolutely nothing can take away that feeling you get when you know the cancer is gone. Hugz <3
  • PatsyNPatsyN Byron BayMember Posts: 11
    edited November 16
    @Zoffiel My darling boy is agisted less than 20 minutes drive away, a 10 minute trailer ride to the beach! But I wont be doing that just yet. I moved him there myself during chemo (there she is, doing all the work) because they have a giant undercover arena covered in sand. I haven't been able to go back since I moved him there but my daughter assured me he loves the place and has a new girlfriend. This was his first day and he was put in a holding paddock with a grey foal while the rest of the herd checked him out.
  • AfraserAfraser MelbourneMember Posts: 919
    Looks like a lovely place! My daughter misses her riding (not cancer, two children under 3!) but her last horse (the rest have moved on) doesn't miss it at all. Best wishes. 
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