mericelle
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Re: Waiting to set up surgery feels worse than purgatory
arpie said: So Sorry to hear of your Mum's diagnosis @mericelle - it is good that you are going to be good support for her! It is good that it is early stages & fairly small .... those things are in her favour. The 'wait time' varies on so many different things - are you rural? That alone can impact things (maybe if you pop your Mum's city/town name in your profile, local members may be able to point you to specific agencies that may help her further down the track?) I am rural & my lump was found in early Nov 2 years ago. By the time I had the extra mammogram & ultrasound (the mammogram 4 months earlier didn't 'find' the lump!) and then the Biopsy - it was after Xmas. Then the wait for the results for the Biopsy - it was Jan 5 before it came back positive - and of course all the surgeons were still on their Xmas break! So I finally saw a surgeon in Sydney in mid Jan & had the surgery (lumpectomy) 2 days later, and only in overnight. Mine was maybe a tad bigger than your Mum's - and I was AMAZED at how 'good' I felt after the surgery! The pain or discomfort wasn't 'massive' - just make sure she takes the painkillers as advised .... there is no point being 'stoic', when in pain! The waiting really mucks with your brain more than anything else - I suggest that you both keep REALLY BUSY doing what you love doing (I just went fishing every day! LOL) All the best - I hope you get a 'surgery game plan' soon - then it all depends on the pathology after the surgery as to what the next steps are. take care xxx Thank you for sharing your experience @arpie. Would you say that the two and a half month wait advanced your cancer at all, or do you reckon it ultimately didn’t make a difference? I’d hate to think that the hospital would make my mum wait two months for surgery. The suspense and knowledge that the cancer could be worsening and spreading over such a long period of time would kill me.4Views0likes0CommentsRe: Waiting to set up surgery feels worse than purgatory
For future reference for anyone who may seek answers in relation to this thread: The hospital has finally booked my mum in for surgery. This will eventuate in a wait time between diagnosis and surgery of 2.5 weeks (which I am more than happy with). She’s going to Peter Mac in Melbourne but as a private patient. The key source of concern for us was that we were being told conflicting information by both the clinic and hospital. We were to expect that everything would be sorted within 1-2 days after diagnosis but we didn’t hear from anybody. Upon calling up the hospital, we were told that our referral has not even been received yet from the clinic. But the clinic had told us that they’d sent it right away on the day of diagnosis. This caused a painful panic for us and I spent the next two sleepless days phoning between the hospital and clinic to follow up, with no results and only more conflicting information to add to the pile. Eventually we went to see the clinic in person this morning and they were able to sort it out for us. What I learnt from this experience was that these places (at least the ones I dealt with) are not very transparent and perhaps tend to tell you little white lies or feed you speculation to try and temporarily get rid of you. I’m sure my mum’s referral would have been sorted out eventually, but how soon, I really don’t know. My advice is that if you’re not being kept up to date or openly informed about the process, go to the clinic/hospital in person and push for answers. Sometimes you need to make yourself heard.2Views2likes0CommentsRe: Waiting to set up surgery feels worse than purgatory
@Chev thank you for your reassurance. My mum seems okay but I think she’s more stressed and upset than she is letting on. It’s an Asian thing - if you’ve watched the (fantastic) movie that just came out this year called The Farewell, you’ll know what I mean. Thankfully she and my dad are very close and I suspect she’s been confiding in him more openly. I’m afraid to show any weakness to her too because I want her to find strength in my calmness. Breast cancer at this stage is very treatable and I guess I want to keep reminding her that by treating the matter with composure.3Views1like0CommentsRe: Waiting to set up surgery feels worse than purgatory
kezmusc said: Hi @mericelle, The waiting is a pain. Unfortunately the whole shebang with BC is full of endless waiting and waiting. My first surgical appointment was 1wk after diagnosis. That was pretty quick but there were nodes involved so they moved along a bit. I had 1 month from diagnosis to surgery, most of that my choice because I wanted a lumpectomy and we couldn't find the darn thing. It wasn't going to do much in a month and according to the surgeon it was slow growing and had probably been there for years so we had time to look for it. Everybody is different and surprisingly I was not one of those people who had to "get it out straight away". I felt fine, I looked fine and was more than content with having a month to get my head around things before starting the process. Breast cancer is a very busy business. All BC referrals are category 1 straight up, however, an aggressive stage 3 cancer will be moved up the list before a less aggressive stage 1 etc. How is your mother going? Does she know how anxious you are? Have a good chat and see where she's at with the whole thing. Take a deep breath. This thing is one step at a time, sometimes one hour at a time. All the best lovely. She'll be ok. Promise. xoxoxox Thank you for sharing your experience. My mum seems fine but I am conscious that she might be much more anxious than she is letting on, which is why I’m so keen to push things along for her and get the treatment started as soon as possible. I guess I’m afraid of having a totally open conversation with her about our feelings because I don’t want her to see me break down. I want her to know this is a totally manageable situation and that we can make it through this. But thank you for your advice.3Views2likes0CommentsRe: Waiting to set up surgery feels worse than purgatory
Wow! That must have been very stressful for you, @"Annie C" . Congratulations on making it through despite the less than ideal circumstances. And thank you for your kind words. I will try to alleviate my concerns, but it’s hard not knowing when this nightmare will be over. This forum and the lovely people on it like you will help get me through the wait.15Views0likes0CommentsRe: Waiting to set up surgery feels worse than purgatory
arpie said: .....Would you say that the two and a half month wait advanced your cancer at all, or do you reckon it ultimately didn’t make a difference? I’d hate to think that the hospital would make my mum wait two months for surgery. The suspense and knowledge that my mum’s cancer could be worsening and spreading over such a long period of time would kill me.... No .... I don’t think there was any advance in my cancer at all. It is just the ‘process’!! Just so YOU know, yourself, having dense breast tissue is what makes it difficult to identify some cancers .. just make sure you ask what type of breast density you have when you get checked next. Have an ultrasound if they say ‘dense breast tissue’! Record all of her appts with her on your phone so you can go over it again later on, in private! all the best xx Thank you for the advice, @arpie.5Views1like0CommentsRe: Waiting to set up surgery feels worse than purgatory
Keeping_positive1 said: I had a two month wait, but it didn't kill me. But if it had advanced and gone further than already being in my lymph nodes, I would have sued, for sure. Public system does really need a shake up at times, and more funding. Keep at them, don't be as patient as I was. I am sure your Mum is in good hands, with you following up for her she will be fine, what a lovely daughter you are. :) Thank you. I’ll keep following up for her no matter how annoyed they get at me.5Views0likes0CommentsRe: Waiting to set up surgery feels worse than purgatory
strongtogether said: I really feel for you, and know how hard the waiting can be. " I guess it’s hard to cope knowing that my mum is walking around with cancer inside her and nobody is doing anything about it for the foreseeable future. " Keep in mind that they are doing something about it now - which is planning the best way forward for her. As @Afraser said this is not going to impact her condition. They know a lot more about the cancer than we do, it is their job after all! Try to relax and help your loved one through this by being there, helping her practically and emotionally if possible. It's only a question of days before her treatment begins. Thank you for your kind words of encouragement, @strongtogether3Views0likes0CommentsRe: Waiting to set up surgery feels worse than purgatory
arpie said: So Sorry to hear of your Mum's diagnosis @mericelle - it is good that you are going to be good support for her! It is good that it is early stages & fairly small .... those things are in her favour. The 'wait time' varies on so many different things - are you rural? That alone can impact things (maybe if you pop your Mum's city/town name in your profile, local members may be able to point you to specific agencies that may help her further down the track?) I am rural & my lump was found in early Nov 2 years ago. By the time I had the extra mammogram & ultrasound (the mammogram 4 months earlier didn't 'find' the lump!) and then the Biopsy - it was after Xmas. Then the wait for the results for the Biopsy - it was Jan 5 before it came back positive - and of course all the surgeons were still on their Xmas break! So I finally saw a surgeon in Sydney in mid Jan & had the surgery (lumpectomy) 2 days later, and only in overnight. Mine was maybe a tad bigger than your Mum's - and I was AMAZED at how 'good' I felt after the surgery! The pain or discomfort wasn't 'massive' - just make sure she takes the painkillers as advised .... there is no point being 'stoic', when in pain! The waiting really mucks with your brain more than anything else - I suggest that you both keep REALLY BUSY doing what you love doing (I just went fishing every day! LOL) All the best - I hope you get a 'surgery game plan' soon - then it all depends on the pathology after the surgery as to what the next steps are. take care xxx Thank you for sharing your experience @arpie. Would you say that the two and a half month wait advanced your cancer at all, or do you reckon it ultimately didn’t make a difference? I’d hate to think that the hospital would make my mum wait two months for surgery. The suspense and knowledge that my mum’s cancer could be worsening and spreading over such a long period of time would kill me.1View0likes0Comments
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