Haven't posted in a while

I have no one to talk to, my partner is an amazing lady who's there as much as possible for me but she's also the type to not talk about things because she doesn't want to upset me by talking about it and when I do talk about it she tends to change the subject not on purpose its just the way she is and will do the same with any subject we talk about. 

 

Anyway those that don't know me , I was diagnosed with at first stage 2 breast cancer with one lymph node involved back in July 21, in the Aug 21 they did a lumpectomy and axillary clearance and found out of the 18 lymph nodes removed 13 were cancerous and the lump was bigger than originally thought so they upgraded the cancer to stage 3, they cut all the lump out and I didn't want chemo or radiotherapy,  they gave me CT scans every 3 months because they'd found a shadow on my right lung. 

In July 22 after a CT scan in the may they told me I had 7 nodules , 4 in the right lung and 3 in the left and diagnosed me with stage 4 breast cancer,  I started Letrozole buy struggled badly with it, I had no quality of life and turned into a 95 Yr old stroke victim so the oncologist told me to stop it. 

In December 22 after another CT scan for shoulder pain they found no signs of cancer anywhere else and still only the 7 nodules in my lungs but the biggest one that they'd seen after they removed the original tumour had grown, they didn't say by how much just that it had grown and was now blocking part of my airway and causing the lung behind the tumour to shrink due to lack of oxygen and basically told me I was now open to infections and breathlessness and wheezing which I already have anyway , the oncologist wanted me to start tamoxifen but I refused , I want quality of life rather than quantity and I know it sounds rather contradictory because I have other health problems so my quality isn't exactly great anyway but I really can't handle the severe hot flushes and bone/muscle aches and pains that the medicines give me , at least untreated I can still get about without the need for help from others and I can still talk without turning into a slurring, stuttering old lady , that isn't the life I want , some days I'm fed up of wheezing and being breathless but at the same time I'd rather this than the side effects of the medications. 

I dont expect sympathy not everyone choses to remain untreated so I know no one will understand my choice .

I'm not expecting replies I just wanted a safe place to vent too that's all .

So if anyone as read this drivel then thank you for taking the time to read it .

 

 

  • Hi

    Luckily for me, I am not on this forum because I have cancer, I have lost my sister and recently my mother to breast cancer. 

    My sister chose to have surgery, chemo, radiotherapy, she suffered dreadfully with the chemo, however she had a 5 year old son that she wanted to watch grow up.  However, after all of that fighting, it still returned within 12 months and killed her within another 6 months.

    My mum only had surgery as it had not spread to lymph nodes, within 2 years it had spread to her bones, lungs and liver.  She was still waiting for a treatment plan when she died 6 weeks after disgnoses.  I have to say though, I was hoping that she was going to decide not to have treatment, that wasnt that i didnt love her or want to keep her with me for longer, it was because she already had various other health issues and I didnt want whatever time she had left, to be spent feeling ill from chemo (she was already very frail).

    I guess what i am trying to say in a long winded way, is that everyone has the right to decide what treatment they wish to accept and when, if treatment is pursued, you have to be doing it for you, not for someone else!  And if you decide to have no treatment and let nature take its course, that is also your right to decide.

    Best wishes

    Marie

  • Lovely to hear from. you, though I'm sorry you're struggling more with wheezing and breathlessness. It can be so hard striking a balance with medication sometimes. Cancer Chat is a good place to vent and people do understand that sometimes side effects are too great to continue treatment. I see you've got a new cat picture. How are your cats? Take care EINaGu, but don't feel you need to reply. I just wanted you to know you're being listened to and people do care. xx

  • Yes you are lucky I'd rather be here because I'm supporting someone with cancer than rather having it myself .

     

    I am deciding to let nature take its course thank you for your reply  

  • Nice to hear from you too.

     

    Yeah more breathless and wheezing , the cold isn't helping. 

    Yes I see what your saying but everyone I speak to have or are taking treatment it just seems to be me that's not. 

     

    Yes I decided to change the picture to the other cat, both are fine thank you .

     

    Thank you for listening and thank you for caring .

    Hope you're well? Xx

  • Lovely to have seen pictures of both cats. They look adorable.

    Thank you for asking how I am. Am actually having something of a medication faff. Got couple of hospital appointments coming up to try and sort things out. One of my meds got discontinued and the alternative caused big problem. GP contacted hospital and hospital said not to take again.  In another instance I have meds that clash with one another. So I'm meant to be starting a new med but it is contra-indicated by something else. Which one wins?

    Luckily, cancer issues kicked into touch (just regular monitoring) though my closest friend is on an urgent cancer pathway and family affected (different stages).

    You're not alone in not taking treatment. There have been others on this site who have reached a point of feeling side-effects outweigh benefits. I guess it's a very personal decision. I hope you stay as well as possible for as long as possible. That's always been my mantra in life. There have been meds that have had unmanageable side effects for me personally. Luckily, doctors and I are on the same wavelength there at present. Have to see what happens when I go to the specialist respiratory clinic next month. There may be some new treatments available. xx

  • They are adorable although I could be biased .

     

    I'm sorry to hear of the problems you're having with meds but glad the cancer seems to have been kicked into touch, I forgot which cancer it is that you have ?

    I feel my oncologist doesn't listen to me but luckily for me he's just retired so now I'm waiting for an appointment to meet a new one, maybe they'll listen to me better, who knows , the BCN is lovely and totally understands what I'm saying and is in agreement with what I say , the hospice nurse also understands which is good .

     

    I can only hope that I have lots of time left but to be honest I'm kinda hoping not, I'm not suicidal or anything like that , I just don't like the way the world is turning into and I don't wish to be part of this type or world,  I realise that makes no sense but rest assured I'm not planning on ending my own life I just have no intention of taking medication to prolong it .

     

    Anyway moving on , I'm glad you're otherwise still doing OK and hope everyone else around is I clouding pets are all well? Xx

  • I do get what you say even though it's a wierd thing about not being too bothered about how much time there is left because of the state of the world, but for me those feelings, when I had them, were a side-effect of some medication I was on. I'm feeling differently now. Have you talked to a doctor or one of your nurses about that aspect of things?

    Also, I called into our local Maggie's centre at the hospital (they also have an on-line site) a few weeks back after I'd taken part in a skin cancer research study and found myself flooding with tears. (You don't need to be tearful to go in there of course!) Maggies might be able to help with the talking aspect your wife struggles with. That's really not easy for you and Maggie's are there to support both cancer sufferers and families.

    And do keep talking on here... Maybe start a post with "Anyone else refused (breast) cancer treatment?" or similar (you can have more than one post running at the same time) so people in the same boat as you will see it and hopefully reply.  I've replied again here to bump your post back up to the top and so you know someone is thinking of you. But I've a busy couple of months coming up and won't be on-line so much so might not reply again for a while.Like you, I find the cold a struggle and am looking forward to some warmer weather. I wish I could have pets, but it's not allowed sadly. Take care. xx

  • I guess that didn't come across as I intended , I'm  not bothered by how much time I have left because of the state of the world although it isn't helping thats for sure but I've never really been bothered by how much time I have left and that was long before cancer showed its ugly head, I believe we all have a set amount of time on this earth some live longer some shorter and no one can ever really tell us how much we have left so it's not something I think about , if its my time to go then it's my time , it's that simple,  well in my eyes it it anyway . Hope that makes more sense? 

     

    My nearest maggies is over 40miles away from me so not doable and I understand there may be an online version and I expect I'll Google it at some point and check that one. 

     

    My wife won't be interested because it was the way she was brought up, and although she accepts I've got this disease and other illnesses she's always been taught not to mention them because the disease/illness is just part of the person it doesn't define them and that person might take offence if their disease/illness is brought up , that's the way she sees it and as for her changing the subject its just something she's always done and she changes subject on anything from the weather to the fish tank as an example she doesn't know she's doing it and it's frustrating. 

     

    Sorry your not allowed pets . 

     

    I hope its a good couple of busy months?

     

    I do prefer the colder months I hate heat but my chest doesn't seem to like the current icy air .

     

    Anyway take care xx

  • Okay, I think I get it a bit better now. Thanks for explaining. 

    Sorry there's no Maggie's close to you. Here's the link for the on-line site and/or you can google it.

    https://www.maggies.org

    My busy couple of months starts in the morning. Better check I've set an alarm! It's a lot of courses and hospital appointments and a research study running over 6 weeks, plus various other things on top. I've over-booked myself plus there are extras I didn't forsee including a funeral. And I'm dreading a lot of the hospital appointments. So not all fun things and I'm not sure how I'll cope emotionally. I had some bereavement counselling last year and it made things worse for a while then I got better and ... well, I don't know if I'll cope or not. 

    I'm not surprised your lungs don't like the current icy air with all you've got going on. I make sure I've got a scarf when I go out not just hat and gloves so I can warm the air a bit before breathing it.

    You too take care and hope you get replies to your new post. xx

     

     

  • @EINaGu I'm sorry for your situation. How ever you choose to carry on, with or without treatment, takes strength in making those decisions and I can definitely see how feeling well enough to do things you love is preferable over treatment. 

    However I think your reply to Marie was inconsiderate and uncaring. She said that she'd lost her mother and her sister to cancer - telling her she's lucky because she's here to support someone when she's lost the people she's here for isn't particularly nice. Her reply was thoughtful and supportive.