New diagnosis, mum guilt and surgery

Hi Bon20​ 

I had a double mastectomy with immediate implant recon at St Andrews War Memorial in Brisbane in Nov 2024.  

Some things I found helpful:-

button up tops (I was told I wouldn't be able to lift my arms above shoulder height while the drains were in). I lived in yoga style pants as they were easy to get on and off. 

I had a small tote with me that I left on the tray table at my hospital bed with a lip balm, moisturiser, phone, phone charger, small notebook and pen (very helpful if you have questions for your surgeon but know you won't remember by the time they come for their rounds)  The first few days I was in quite a bit of pain and didn't want to move too much, so having everything in the bag saved me getting in and out of bed to grab things. 

If you need specific surgical bras, the 'Spirit of Life Boutique' at Clayfield is fabulous and the ladies are so kind, gentle & understanding. 

The hospital provided me with a bag for my drains and two breast care pillows (the pillows were such a comfort - I was able to tuck them under each arm, protecting from any bumps and knocks). I assume The Wesley would also provide similar.

The nurses suggested I have a sick bag with me for the trip home which I was so thankful for as I needed it.  A friend made me a mastectomy pillow for the car that tucked under both arms and protected my chest from the seatbelt. I used that quite a lot during the recovery period.  I'm pretty sure Amazon sell them if you think that is something you might use.

My kids were in their late teens /early 20's when I had surgery so I didn't have to worry about trying to navigate the discussion with them about what to expect when they visited me in hospital, but that may be something for you to consider discussing with your little ones (ie the drains, being gentle when they hug you, the IV/drip  etc)

Thinking of you and wishing all the best for your ongoing journey. Please reach out if there's anything specific you would like answered.

Hi Bon20​ , I'm so sorry to hear about your recent diagnosis and the anxiety you're feeling around surgery. It is completely understandable that your main concern is how this will impact your family. It can be helpful to reach out to a supportive lived experience community for advice and making informed decisions about your personalised healthcare plan. As arpie mentioned you will find lived experience community support in the Choosing breast reconstruction (forum)​ private group where you can find real images of DIEP reconstrutions to assist with feeling more informed on your upcoming surgery. 

You may also find the following information about breast reconstruction surgery helpful to discuss with your healthcare team, and make a plan that feels best for you. 

Questions to ask a surgeon about breast reconstruction

Your hospital stay for breast cancer surgery

Tips to be more comfortable after surgery

Recovery after breast reconstruction

In the meantime if you just want to have a chat about any of your thoughts feel free to call our Helpline on 1800 500 258 - we are here to support you!

I am So sorry to see you joining our select little group Bon20​   xx   …. everyone remembers the shock of hearing the ‘diagnosis:  “You've got breast cancer” ..... Causing sadness, distress and even anger.  It really mucks with your brain.  It is highly stressful & upsetting in the early days of diagnosis - so if you feel a bit overwhelmed by it all, give our Helpline a bell on 1800 500 258 for a confidential calming chat xx.

I'd suggest you join the private Breast Reconstruction Group - where you can ask specific questions (and read previous posts) to glean any tips from those who've gone before you xx

https://onlinenetwork.bcna.org.au/group/choosing-breast-reconstruction

Have they talked about chemo/other treatment as well?  Is your diagnosis Triple Positive (with 'low' Her2+?)  If 'yes'. we have a Triple Positive Group as well.

Group: Triple Positive Breast Cancer (TPBC) | BCNA Online Network

Make sure you take a trusted friend or relative with you to your meetings from now on & consider recording them too, on your phone xx. It is almost impossible to remember everything & this way you can go back over it in the quiet of your home & take notes. xx  Planning is good ... but sometimes the plan can change on an 'as needs' bass ... so try to be flexible there xx

Keep yourself as busy as you can between now & surgery - doing things you love doing (and the more practical things too, like cooking etc.)  You may need to organise mowing and other household chores too - as you'll not be allowed to do any lifting for some time after your surgery (including picking up your kids!)  Then, as you recover, get back to them as well, as it is good for the soul to get back to doing stuff you love doing!

I hope you have good partner & family support to help with the little ones during your hospital stays & recovery xx    Cooking up their favourite meals & freezing them (for yourself as well) in the lead-up to surgery will help keep you busy and also make it easier once you are home again. 

Consider listening to Charlotte Tottman's Podcasts on her own experience with BC - she is a specialist breast cancer Counsellor who had a double mastectomy, choosing to stay flat - and was surprised at her own reaction to the news, when she'd been counseling others for many years & thought she 'knew it'!  She has done 2 'podcast seasons' ... check out the 1st season, right from her diagnosis onwards and how she coped, then move on to the 2nd season. She is very easy to listen to & you'll probably recognise your own reactions in many of the podcasts. 
http://www.drcharlottetottman.com.au/my-podcast.html

Check out this thread too - there is a lot of info on the forum & what to take with you to hospital - even 'tick sheets' that you can fill in to take with you to your appointments on your mental & physical health .... this info has been gleaned from many of our members over the years ... I hope it helps you xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest

If you continue updating us on this thread, it'll become a bit of a diary for you as well xx

take care & wishing you all the best