Home Care after Mastectomy.

Nay

Hello,

I live on my own and will be having a Mastectomy. one week before my daughter's first baby is due and therefore unable to ask her to help me at home.

Everything I have read says that I can't  go home and be on my own.

Does anyone know where I can seek assistance for the first week once discharged from hospital?

I don't know anyone in Sydney other than my daughter.

Can you suggest a place where I can seek assistance at my home or if there is some where I can go that doesn't cost too much as I need to use my savings while  I am unable work.

I do not have private insurance.

Thank you.

 

 

 

 

Nay

Typo - Mastectomy.

Mita

I had open heart surgery in March to replace a congenitically defective heart valve. 4 months later I was diagnosed with breast cancer & had a mastectomy because I couldn't have radiotherapy with the new heart valve underneath.

After the open heart surgery,  I stayed with friends for a week and my private health fund organized what's called Rehabilitation at home ... for when I went hom on my own.  A nurse & physio & an occupational therapist & a cleaning lady called once a week for a few weeks.

When I had the mastectomy, I just went straight home after 2 nights in hospital.  All drains were removed before I left.   I had prepared the house and supplies before I went into hospital.... so food was in the freezer and I put everything I would be needing, for food preparation & self-care,  where I wouldn't have to stretch up.   Lots of towels and plain white cotton washcloths at the ready.  Also used QV Soap Free Lotion to wash gently around the wound & pat dry (same as the nurses showed me after open-heart surgery).  

I only used the Private Health Fund Rehab service this time for a nurse to come check on the wound... which was fine.  I was told, after a week, to go  see my GP, who's only across the road.  Fortunately, the regime given me to prevent pain, worked.  2 Panadol every 6 hours to cover it, so it didn't break thro'.    So, apart from the couple of checks by a nurse in-home, I was OK on my own.  The hospital physio had already given me the exercises I had to continue.  My neighbour did kindly offer to look in on me for the first night I was home alone....& I had my mobile phone with me at all times, to call her if necessary.  But I slept like a log & was fine.

But some hospitals also have an in-hospital  Rehabilitation program where patients can transfer over to,  for whatever time is deemed necessary,  if their surgeon gives a referral.  If someone has Private Health cover, cost would come from that.  But there's got to be some access for public patients, too.  I'm pretty sure that was the case in the Rehab section of the hospital that I was in.  My mastectomy surgeon only gave me a referral for services at home (nurse visit) because that's all I needed.

I suggest you track down any of these...the social worker,  community outreach nurse or breast nurse,  who is at the public hospital you're going into.  Talk to them about your after-surgery needs and care,  given you'll be home alone... and what is available  to you as a public patient  (without Private Health cover) , In Home, or In -Hospital Rehab, or a bit of both.  

Very best wishes.  I hope all goes well for you and for your daughter & her baby, too.

 

 

Nay

Thank you Mita, I had tried googling it but I was not sure of the technical names and got all sorts of goods and services.

I shall follow up on your suggestion.

I hope you are well and happy.

 

Mita

You're not wrong about the technical terms for both the people and the services.  Hospitals, both private and public, should make sure they give all the necessary information before we go into hospital.  

Weird as it sounds, I was glad I'd had the experience of open heart surgery first because that's where I learned the extent of the services.   

I hope all goes as well for you as it did for me.  I was lucky to heal and recover very quickly after both ops.  Even the surgeon said, it's luck.  I'm wishing you heaps of the same.

Chorsell

I am sure if you speak to the social worker at the hospital they will be able to advise what community programs are available to you-

Good luck

Chris xxx

TonyaM

If you are having surgery in a public hosp.then you can ask to see a social worker who may be able to organise community nurse to check on you and perhaps home help(if you are eligible)Where abouts in Sydney are you?There may be a bc support group in your area who can help.I run a bc support group in the Hills area. Keep in touch.Tonya xx

TonyaM

If you are having surgery in a public hosp.then you can ask to see a social worker who may be able to organise community nurse to check on you and perhaps home help(if you are eligible)Where abouts in Sydney are you?There may be a bc support group in your area who can help.I run a bc support group in the Hills area. Keep in touch.Tonya xx

Dianalea

Hello Ney, I hope I can help put your mind to rest a little bit with my story.
I also live alone and had a mastectomy last year. I live in Adelaide and went through the public system. I was only in hospital overnight. I went home with 2 drainage pots that a home care nurse came everyday for a week to change. I found the thought of having the surgery was worse than the actual event. I was more than happy to go home the next day. My family and friends were surprised at how much i could do and how little help I needed. I just made sure everything was organised. Do the shopping freeze some meals, have everything done so all you have to do is rest. My biggest decision was which dvd I would watch each day.
Everyone's experience is different but i hope my story has helped to alleviate some of your worries.
Good luck x

June1952

Hello Nay

I am a bit late reading your post and the other ladies have probably answered all your questions but this may help.

Before leaving hospital the 'Discharge Planner' will speak with you re where you live, who with etc.  He/she will be able to arrange the home help from the local council/shire to do the basic chores if you are unable to do things yourself.  He/she will also be able to arrange for the district nurse to come and assist you with the drains if you go home with them in place as I did.  Whilst this is not necessary it would certainly set your mind at rest to know they will check the wound and the amount in the bag.  The cost of home help and district nursing is minimal.

If you feel things are not being done for you please ask to see the Breast Care Nurse and/or Social Worker BEFORE YOU LEAVE HOSPITAL and they can assist with same.

As Robyn says, if you place things at a decent height you will be OK.  (Robyn was my source of info when I needed it - thank you Robyn).  I had three surgeries due to problems and spent 7 nights in hospital, coming home with the drainage bag for a further 5 days but I found the worst problem was getting up to do something and forgetting to take my bag with me - it reminded me, though !

If you feel you may be at risk or too isolated please contact a local church or other group and see if they have a visiting service who can check up on you.  If you have complications the Breast Care Nurse would certainly be able to assist with that as well.

Hope all goes OK for you - keep in touch.

Summer  :-)

June1952

Hello Nay

I am a bit late reading your post and the other ladies have probably answered all your questions but this may help.

Before leaving hospital the 'Discharge Planner' will speak with you re where you live, who with etc.  He/she will be able to arrange the home help from the local council/shire to do the basic chores if you are unable to do things yourself.  He/she will also be able to arrange for the district nurse to come and assist you with the drains if you go home with them in place as I did.  Whilst this is not necessary it would certainly set your mind at rest to know they will check the wound and the amount in the bag.  The cost of home help and district nursing is minimal.

If you feel things are not being done for you please ask to see the Breast Care Nurse and/or Social Worker BEFORE YOU LEAVE HOSPITAL and they can assist with same.

As Robyn says, if you place things at a decent height you will be OK.  (Robyn was my source of info when I needed it - thank you Robyn).  I had three surgeries due to problems and spent 7 nights in hospital, coming home with the drainage bag for a further 5 days but I found the worst problem was getting up to do something and forgetting to take my bag with me - it reminded me, though !

If you feel you may be at risk or too isolated please contact a local church or other group and see if they have a visiting service who can check up on you.  If you have complications the Breast Care Nurse would certainly be able to assist with that as well.

Hope all goes OK for you - keep in touch.

Summer  :-)

Robyn W

I am going to message you using the private message.

Mita

My advice based on experience is not  wait until you're in hospital & speaking to a  community liaison nurse, re a Discharge Plan.

For people who are living on their own, with not a lot of room for flexible allocation of help when you get home.... we need to know the array of options BEFORE we go into hosptial, so we can plan ahead and also know the 'technical' language of the support & who does it,  for when we are discussing a Discharge Plan while we are about to leave hospital.  Not only is that more efficient but it cuts down on stress.

I've noticed a disrepancy in 'knowledge preparation' between what was made available to cardiac patients and what was available to breast cancer patients.  The comprehensive pre-admission cardiac information  booklet  covered the practicalities of being at home post-surgery as much as it did the details of the surgery & immediate aftermath.  It even specifically referred to those people who live alone & the options they might need to take up,  in terms of home support services.   None of that detail was mentioned in the breast cancer pre-admission info booklets.

Which is why I say I was fortunate to have the cardiac experience before the breast cancer mastectomy.  I was able to talk with the excellent breast nurse... & also the surgeon.... about what I might need BEFORE being admitted.   When the community liaison nurse called to see me in hospital following breast surgery, it was easy to slot in actual services based on how I'd responded to surgery.

Fortunately, two of the best sources of information are this BCNA forum and the service offered by the Cancer Council, where they match you, on request, with another breast cancer patient who's already been through your present circumstances.  I was matched with a woman from Melbourne who'd gone thro' all treatment levels while living alone.  (This support is done via phone calls.)  She was a treasure in support, information & inspiration.

Nay

Great advice ladies, thank you.

The lovely Robyn has been in touch and has offered very kindly to call in on me as we live quite close and this offer is very much appreciated.

I have also contacted my clinic for a review of my case/file as there seems to be a CT or MRI scan that wasn't read in early December and their decision for me  to have a Mastectomy was thrown at me on Friday after their group meeting.

I felt helpless and in shock at the sudden change of treatment hence my need to take control and make contact through this network. 

A meeting has now been arranged with the Surgeon, whom I have never met, and a Breast Care Nurse for Friday this week as a result of sending a long email late last night. outlining my concerns relating to miscommunication regarding my diagnosis.

I have been sent plenty of  printed nformation but I was reading it with regards to HT and surgery for July/August this year.

I believe I will be having the Mastectomy in the first week of February but this will be confirmed on Friday.

Thank you again for such wonderful positive information. 

I will now concentrate on my work as a gardener, spring clean my flat and organise all my items so they are on the right level, including the tea caddy! 

The hardest part for me will be staying indoors during the day, 

Thanks.

 

 

 

 

Nay

Great advice ladies, thank you.

The lovely Robyn has been in touch and has offered very kindly to call in on me as we live quite close and this offer is very much appreciated.

I have also contacted my clinic for a review of my case/file as there seems to be a CT or MRI scan that wasn't read in early December and their decision for me  to have a Mastectomy was thrown at me on Friday after their group meeting.

I felt helpless and in shock at the sudden change of treatment hence my need to take control and make contact through this network. 

A meeting has now been arranged with the Surgeon, whom I have never met, and a Breast Care Nurse for Friday this week as a result of sending a long email late last night. outlining my concerns relating to miscommunication regarding my diagnosis.

I have been sent plenty of  printed nformation but I was reading it with regards to HT and surgery for July/August this year.

I believe I will be having the Mastectomy in the first week of February but this will be confirmed on Friday.

Thank you again for such wonderful positive information. 

I will now concentrate on my work as a gardener, spring clean my flat and organise all my items so they are on the right level, including the tea caddy! 

The hardest part for me will be staying indoors during the day, 

Thanks.