Lived Experience Forum

[Exoplanet]

Today I see the breast surgeon & find out whether he's really willing to help me. . . not the cancer - me. I don't want a breast left that has a higher than average chance of developing cancer in the future, I don't want a prostetic to put the weight back on, I don't want a permanent imbalance of weight. I don't want to have to put my dogs back into kennels & face those fees, or have to move to my Sisters for a indetermined amount of weeks - & have to try & organize some kind of home assistance to be able to return home while still recovering, ever again if I can avoid it - & if I have a double masectomy I won't have to face breast cancer again because I won't have them! I am aware that without chemotherapy I have a greater percentage chance of not surviving 5 years & of cancer developing somewhere else in my body. I choose a double masectomy & I will continue thinking about it if the Doctor is not willing to help me with that procedure.I will ask if he knows of a Doctor in the public system that would be able to help me, he is a specialist Doctor & would be the best to ask help from. When the word 'cancer' was spoken to me, I never imagined I would have to fight for the treatment I require - this journey is not enjoyable! 

[Sophia1]

Hello @Exoplanet 

I wanted to reply to your post over here as well.

You have every right to feel so strongly about having your needs and wishes heard...

I will be very surprised if the specialist or surgeon does not remove both breasts given the diagnosis ...especially with your decision to go ahead

Do you think that your sister or daughter might be able to look into someone housesitting your dogs whilst you are away.

You will need some assistance once you leave hospital. They might even suggest a rehabilitation hospital if noone can be with you.

I know that your sister has offered.

It can be so very very hard to accept that we cannot do everything for ourselves when we are so independent. I know this feeling only too well.

Sometimes we do need to heed our own words that we advise others.

There are times where we simply have to get the medical world to listen if they are not.

They generally check to see if you have support when you go home after surgery.

How do you feel about your sister following up with the cancer council on your behalf to find out exactly what support, physically and financially is available for you?

You are still the same strong person, it is not a sign of weakness to ask for help...in cases like this if is a sign of great strength..

take care special @Exoplanet 

love Sophia .💜

[outlander]

thinking of you @Exoplanet and hoping today went ok

[eth]

Hi @Exoplanet  thinking of you this morning and sending warm wishes.  I hope you received the support you were hoping for from the Dr yesterday.  

[Exoplanet]

The Doctor has agreed with me about the bilateral mastectomy & node removal, I didn't have to say much at all, just that that is what I had decided & then list out my family history & state that I believed that gave me a higher percentage chance of developing cancer in the other breast. I think he was pleased as he will look into the nodes on the other side during the operation. He was more trying to convince me to undertake chemotherapy, though he knew I had already, from the very first word of cancer, said I was not interested. I have to go & see another Doctor & hear the information about it, though even on the referral he has written that I am likely to decline. He was advising chemo before & after surgery - . . . . no & no! So I'm waiting for phone calls, though I think my Sister might be going to receive them, my head started to blur quite a bit when we {my Sister came in to the appointments with me this time} went into the breast nurses office & she started talking to us. I started losing concentration on what was being said & the likes. I didn't think it was too noticeable, but the nurse said she could tell by my eyes somehow, that, I think she put it as I was getting tired. {my appointment did run 1 1/2 hours late, a couple of Doctors were on holiday & 1 got called back to the operating theatre, so we were there from 1.30 pm - 5.30pm} I think she arranged for my Sister to be the one that was contacted. I knew my head would go into super-blur, I know it's still not there yet, I haven't got a date for surgery yet. I have to see the chemo Doctor & I think the anaesthetic Doctor too, but I don't think it's far off now. The nurse asked how I was feeling about it all, I told her I was healthily terrified, the truth is I haven't really started feeling anything about it yet. Relief that the Doctor supported & agreed with my decision, after that there's like an invisible wall & there's a void of nothing on the other side - emotions that I can't or won't even look at? I'm going to rely on my blur to get me through it, once it's done, well then I'll have to deal with it . . . so I will. The Doctor did mention that I may be able to drive again in 2 weeks, I know everyone is different & that isn't a absolute fact, but it was encouraging. He may not have to take the nodes on the left side, so my left arm may 'work' quicker. I think the fact that I'll have a very, very strong will to return home, may be very helpful with recovery. 

@Mazarita  @outlander  @eth  @Sophia1  @Appleblossom  @greenpea  @Zoe7  @CheerBear  @Teej  @Faith-and-Hope  @Shaz51 

[greenpea]

@Exoplanet  Gentle hugs my brave, brave Exoplanet. You are so strong girl we are all here with you and will be always. I feel so privledged that you are taking the pea along with you on this journey and I hope that my words of encouragement help a little bit. Love always peaxxx

[Faith-and-Hope]

Here and listening @Exoplanet .... just sitting with you.

💜🌷

[Zoe7]

So good the doctore agreed with you @Exoplanet That must be such a relief as it was what you wanted. Hope you hear back for a surgery date really soon and you can get it all sorted quickly. Lots of love and huge hugs for you Hon 

[Shaz51]

sitting with you @Exoplanet 

[Appleblossom]

Hugs @Exoplanet