Surgery on Thursday: Need sleepwear suggestions please
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Thanks. I’ve just had a look at the link0
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Thank you everyone for your guidance.
Op has been moved to early next week. I tested positive to genetic mutation.1 -
Dear Tasia,
Sorry about the bad news re genetic mutation.
So what surgery will it be now?
Did you find more PJ's?
How do you feel about waiting a little longer for surgery?0 -
Thanks @Abbydog, I need to reprocess the ʻnew newsʻ and what that means. I have the RAD gene mutation not BRCA. Dbl MX, possibly radiotherapy, then hysterectomy, ovaries - the whole deal. The med team are wanting to discuss my thoughts on reconstructive surgery. I guess the extra days are to allow for that thought process, research, what to do now. The ripple it has on my kids and grandchildren.
They also suggested I change my work plans for at least 6-8 months, one said ʻconsider the whole year offʻ. That impacts on me financially and have to sort out a solution.
Re pjs - I bought 1 pair (the only pair, a button up front short sleeve short set). A tank top to wear if the sleeved pj top gets too hot for me and a light cotton strappy nighty - easy to slip on off shoulders. Now though Im not sure if they are enough or right. I have this numb feeling.....
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Ah @Tasia the old shifting goal posts switcheroo.
Being told you might need to take a year off is confronting, but it is the reality for some of us. I really struggled financially, but in the end I really didn't have a choice if I was going to go with the recommended treatment. I'd been made redundant a few weeks before my second diagnosis, so I had a payout as back up but wasn't able to get at my income protection insurance because I didn't have a job. In the end I was on the dole. I ended up going back to uni while I was having treatment. Which may sound like a weird thing to do, but I wanted a career change. I could study when I was up to it and it worked out ok.
Follow your gut feeling with the reconstruction decision and don't worry about feeling zombie numb. It's how our brains process this shit.
I turned up for my tit lopping with a huge suitcase full of stuff because I couldn't figure out what I needed to take. It looked like I was going on a cruise. Too bad. Mxx3 -
@Zoffiel - I had two plans in my head and I discussed these with the BS yesterday morning. They were based on BRCA positive plan or BRCA negative plan. This newbie has struck like a 2nd tsunami.
I have to speak to centrelink and find out what financial support I can get. I imagine the regular Newstart (?) isnʻt the right fit for those of us in treatment? Do you think Cancer Council would have all the info on best approach? I could also talk to the Hosp SW again since my situation has changed again...
For the first time in my life, my guts waving its arms in the air in a state of confusion...if Iʻm going to have a hysterectomy is it best to have the DIEP flap surgery or not maybe...
...have Dbl MX and immediate reconstruction ?
I read that most women just use the hosp gowns until they are well enough to use their own clothes.
I have also been thinking about asking for the genetics lab to check check results - before I go removing all sorts of organs..is that crazy thinking? x0 -
Many hospitals have a financial counseling link now, and most have social workers. Depending on their competency, they might be able to give you some advice. I don't know how helpful the cancer council is with that stuff
Nothing that the welfare system offers is a good fit for treatment, but it's better than nothing. Just.
I wasn't eligible for sickness benefits, but my excellent GP wrote me a series of medical certificates so I wasn't forced into the mutual obligations nightmare attached to Newstart. I won't sugar coat it, I had a couple of really unpleasant experiences with Centrelink staff but as I had nothing better to do than be persistent, I persisted. Once again, no other option, really. One horrible little bunny seemed determined to prove that despite being bald and covered in burns I was somehow trying to game the system. In the end I told her that 1 in 7 Australian women get BC, and that when it was her turn, I hoped she'd remember how she treated me. Mean, I know. In the end it worked out.
Get the lab to check your results if that's possible and it will put your mind more at ease. I've gotten rid of most of my disposal organs; I don't know that a hysterectomy would affect DIEP recon--put that on your list of questions. Mxx4 -
Hi @Tasia, When I had my mastectomy I just used back the front hospital gowns (even though I had new nighties in my bag). Staff seemed to encourage this as it makes it easy for them to exam you. Also, you may have some oozing so getting this on your new gowns is not good.
I am sorry that you are in this position as there is a lot of information to decipher. I only had one breast removed and had follow up DIEP two years later. Prior to the removal of my breast, I had ovaries removed. You don't need to have a whole hysterectomy (unless you have other problems you would just have your ovaries removed). Having your ovaries removed by key hole surgery is easy - I could have gone back to work a couple of days later. The surgery is day surgery and the next day I felt fine except for a bit of lower abdomen tenderness. The mastectomy (particularly if you have two breast removed is little more daunting and you will need a few weeks of work. I had to go back into theatre as I was haemorrhaging and need transfusion, so this didn't help with my recover. I found the later DIEP surgery quite easy although had a few weeks of work. I haemorrhaged a bit this surgery too but not enough to have a transfusion so was anaemic for a few weeks. I know plenty of people who work whilst having radiotherapy. So, I think how much time you take of work depends on what surgery you have and in what order etc. If you need to work, you may be able to stage things so that you can continue. Tell the doctors of your financial position and see if they can suggest a way you can keep working. If you have to give up your job, you will be able to get Newstart and they wave the job hunting requirements (eg the 30 odd applications per month) with a doctors certificate because you will be unwell. They don't seem to offer sickness benefits straight off these days - save that for those on Newstart who have been ill for awhile. So all you need to do when you are set up is do you weekly income reports! It doesn't make you feel good, but we have to do whatever we need to do to get by!! Let us know what you decide. xx Lisa4 -
Hi Lisa,
Thank you 🌸
I have my hospital bag packed but think I also will use the hospital gowns. The hospital staff have also been very reassuring.
I will need to have ovaries removed and hysterectomy because of the genetic mutation result.
I have been booked in for DMX Thursday morning, will have full radiotherapy consultation, including CT scan end of Feb and start radiotherapy treatment with weekly reviews early/mid March.
The next sequence of surgeries will be the gyno stuff and DIEP flap reconstruction if I decide to go down that avenue. I had a consult with the onc reconstruction surgeon this morning. Order will be guided by Onco and B/surgeon.
Most of the drs have been great, either waiving or heavily reducing their fees. I have approached Centrelink and will see where that ends up.
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Dear Tasia,
You seem to have a plan, and a good team of Doctors
So good that some of them have negotiated their fees.
All the best for Thursday. I'll be thinking of you.1 -
Dear Tasia wishing you all the best for your surgery.0
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Best wishes for Thursday - you certainly have a lot to take in but obviously a good medical team willing to vary some of the fees.
Take care0 -
Hi Tasia, All the best for tomorrow. My mastectomy was so straight forward it was a let down as I had all kinds of weird things imagined. Sending a big hug. xx PS I just used the hospital gowns, two a day as the tube leaked.0
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Dear @Tasia
I had mastectomy & reconstruction in mid November & was in hospital for a few days
I wore the hospital gowns for the first few days then pjs shortie style with button up top for last couple of days then at home as well
The gowns were easy. I got my pjs from le rose (lerose.com.au) they were very comfy & all cotton plus had pockets in shorts & top which was so handy
At home, any singlet style top that you can step into & pull up is great day & night
I was also given a bag to put my drainage bag in that I never used - if you don’t have one, I’m happy to send to you
I hope that all goes well with your surgery
best wishes
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