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Hi everyone, I was called in for a follow up at the Breastscreen clinic in Canberra in early January 2019 and officially diagnosed with invasive ductal carcinoma grade 1 shortly after. Waiting around for the surgeon's appointment has been hell and the more I read, the more terrified I have become. I finally had the surgeon's appointment on Tuesday and he assures me that this is a good diagnosis to have and the prognosis is good. It is still terrifying and the loss of control in my life and what the future holds for me is all consuming at this point in time. I was called yesterday with a surgery date of 13 February for a lumpectomy which thankfully isn't too far away so I have been reading allot of posts to get some ideas on what to take for my overnight stay and am working my way through putting together a list. I have a 6 week trip to Europe planned in early June this year and I am mentioning it to every medical professional that I meet in the hopes that the surgery and radiation will be over before I am due to fly out. I have travel insurance but the thought of having to cancel something that I have planned and research for well over 12 months would be disappointing to say the least. Even though I am assured that the prognosis is good, I had a meltdown at work yesterday morning, I just couldn't hold it together so I am home for the rest of the week and my supervisor said that she will do anything I need in order to support me whether that be going part-time for the moment, working from the office or at home. I am so grateful for the support of not only my colleagues but my close friends as well. One of my friends has been to every appointment so far which has been terrific as at least one of us will hopefully retain all of the information thrown my way. I live alone and have one grown up daughter who lives about 4 hours away and my friends and family are adamant that I am not coming home after the surgery. I am very independent and in a bid to keep myself busy and organised, I have been cooking up a storm and have enough meals to get me through an apocalypse. I feel more comfortable coming back to my own apartment rather than being a burden on my friends. To all you wonderful ladies that have been through a similar surgery, are you able to advise if it is realistic for me to be able to be home by myself for the first few days post-surgery please? I have been lurking in this forum for the past week and it seems like such a safe and supportive forum so I hope you don't mind me putting forward some questions as I think of them!!! I have met my breast care nurse and she seems lovely and I have also been out and purchased the post-surgery bras, button up pjs and dressing gown but feel free to suggest anything else that you wish you had thought about before surgery. I am looking forward to being a regular contributor to this forum.
32 Replies
- @rose - thank you, the breast care nurse said that the longer I take off to heal the better I will feel in the long run so I will see how I feel. Good idea about a counsellor, I will give her a ring next week and see who I can see. I am having my op in Calvary as I live northside. Colleen's in Garran was recommended to me and I have been in on Wednesday and bought myself a couple, seem pretty comfy but don't offer allot of support.
@Zoffiel - I too want to be left at home and I have very little control over any of this and being able to choose if I am well enough to go home is a choice I would like to able to make. I will, however, take advice from those more experienced if I do feel I need support for a couple of days. I think I just need to play it by ear at this stage but I will pack for being away from home for a few days. Don't get me wrong, they are lovely kids and my friend is just awesome but I just feel I would be more comfortable at home.
Thank you both for your comments, it is much appreciated. - Hi @cruiser I'm a right pain in the arse when I'm stressed or damaged so have consistently lied to everyone about who is going to be home post surgery. I just want to be left alone. Driving yourself home from the chop shop is a no no, but if you are going to have a meltdown about staying with someone else (teenage boys. The horror) you may need to make other arrangements. I could not possibly give you irresponsible advice about sneaking back to your own nest unaccompanied. I can only say it has been done. Mind you, if you do end up with the dreaded drains having someone around to make sure you don't miscalculate your meds or get hooked up on a door knob or the taps in the shower isn't a bad idea. That is also the voice of experience... Mxx
- Hi Cruiser. I'm in Canberra too. I had a fantastic BC nurse, who referred me to a cancer counsellor at Woden community health centre where I had a couple of sessions where I totally freaked out, and she gave me some strategies to deal with the fear. It helped. It's horrible not knowing what's going on, and thinking the worst - but it does get better. I also had early stage BC, no drain, and was ok at home and could look after myself. I do a lot of exercise though, and so didn't have much trouble raising my arm up etc. I also planned on only taking a week or so off work, but the emotional impact of it all got to me, and I ended up taking 3 weeks off. I could've worked after a week, but I really needed to look after my mental health, and I spent a lot of time sitting in the sunshine, just resting. Was actually quite nice to step off the treadmill of work, realise that work's not that important, and just rest. Take care.
PS Stephanie's at Kingston has fantastic soft bras which are good for going through radiation and aren't as ugly as hospital bras. Also use Moogoo Udder cream for radiotherapy - works a treat. - @SoldierCrab, thank you I have some friends who are going to support me with cleaning and washing and luckily I have enough clothes to last me weeks.
@arpie, thank you I thankfully live alone in a small apartment so no animals or others to look after. After everyone's helpful tips and a conversation with my breast care nurse this morning, I have now advised my supervisor that I will not be able to drive for a few weeks and will not back to work the week after the surgery. It's been helpful in managing my own expectations as well given I have never had surgery before. She also advised that I will be receiving a zonta pillow at me pre surgery appointment on Thursday. As someone else suggested, I have added a triangle pillow to my shopping list. I have insomnia and always have sleeping tablets on hand even though I hate taking them they can be a godsend. I'll mention this on Thursday as it would be nice to be able to get the prescriptions organised before I go to surgery instead of after. Because of the position of the lump, the breast care nurse didn't think I will need drains either so I have my fingers crossed that that is the case.
Thank you ladies, I feel allot calmer and more prepared for what is to come and I appreciate all of your feedback <3 - Yep - as mentioned by @KarynJ and @SoldierCrab re 'reaching' .... NO HEAVY LIFTING either - that includes grandkids, dogs and washing!
Do you have a small 'oblong' pillow that you can use to support your injured side? It will be your godsend! Your Breast Care Nurse may be able to obtain a Zonta Pillow for you - but I just had a pillow left over from shoulder surgery. Initially, it is to support your arm as you will have to sleep on your back for a while & the arm sort of 'hangs there' & aches ..... so you rest the arm on the pillow, to support it. Then later, as you are able to roll onto your side, you swap the pillow to the other side, to support the arm at the same level as your hips - otherwise it just aches & you'll never get to sleep. It will become your best friend! I use mine even now, when I read in bed before lights out!
Talking of sleep ...... ask you GP (or surgeon) for some Temase now! The ones in the bottle that 'dissolve' ...... cos the one thing we ALL go thru is massive sleep disruption. It will give you about 4hr sleep - but hopefully, once you ARE asleep, you'll continue longer than 4hrs. Either our minds are too busy with all the thoughts going thru it - or it may be the medication/treatment that stuffs it up for us. They are NOT to be taken every night - but 'as required' for a decent night's sleep.
All going well, with a lumpectomy - you may not have drains depending on the surgery site (I didn't - my tumours were up behind the nipple.)
All the best xx - Cruiser another thing is hanging out the washing I needed assistance with this ... Just a thought.
- Thank you to all the lovely ladies who have commented, provided answers to my questions and emotional support. You have all given me allot to think about and tips on what I should expect are invaluable. I was not aware that I would not be able to drive for some time (I have a manual) and I will now be able to pass this onto my work colleagues and let them know that I will work from home once I am feeling up to it. I don't like the idea of going back to work with drains anyway so at least I can manage expectations ahead of time. I will take the help as and when it is offered but I believe I am as prepared as I am going to be as far as my stash of frozen meals and I will make sure that I go shopping and have my cleaning done before my surgery. @KarynJ thank you for your comment re reaching for glasses in high cupboards, that was definitely something I had not considered and I will move these to somewhere easier to get to. I can't tell you how grateful I am to have found this awesome forum, everyone on here is an inspiration and I have gained more practical knowledge in the last 24 hours from this thread than I have from all the medical professionals I have seen so far. Thank you to each and everyone of you and I wish you all luck in your journeys <3
- Buy yourself a thermometer and a heart rate and blood pressure monitor and you are pretty much fine to stay by yourself.
You will have to reorganize how you hang your washing out and take it in as extending your arm will be an issue for several weeks. Don't push it too much. It will eventually come good. Do not panic.
Going home from hospital, get some good painkillers from the hospital pharmacy before you leave. I ended up with Targin which has a built in thing to stop you binding up in the toilet which is a common trouble on painkillers.
You will have a drain bag for several days to a fortnight. Once output drops to I think it was 40mls per day they can remove the drain. Don't be too quick to get it out as swelling can keep on and cause a seroma which may need to be drained later on.
It does psychologically take a little while to come to terms with the surgery you have had. Don't be frightened to come on here for a rant or talk to a psychologist about things. We're here for you. <3 - Hey @Cruiser. Everyone above has given you brilliant advice. I want to add my voice to the others who've suggested having someone with you for the first 24 hours. I'd suggest 48 hours would be optimum.
Now is the time to put yourself first. Seriously. If you have to have someone in your home, your sanctuary, who would that be? Go with your gut. Don't go to someone else's house. Tell them if you're asked that you've been advised not to. You need to be in your own space, physically and emotionally.
Remember that good friends and family seldom offer to help without meaning it. If it was your good friend or family member, you'd want to help them. Now is the time to accept help; it is one of the more humbling lessons that BC teaches us. If your mum wants to look after you and you're happy to let her, don't worry about the distance. I'd travel the globe to help my babies!
I couldn't lift my arm very high for the first few days after my lumpectomy and sentinel node biopsy. My husband had to help shower me. It only took a few days to get back to about 90%, but you are definitely restricted at first.
I'm sorry you've joined us, but I hope you'll find it as welcoming and supportive as I have. Big hug, K xox
PS I have had 8 gajillion meltdowns, including one last night. It's pretty normal so take it easy on yourself. Better for your mental health to let it out than hold it in. - Hi @Cruiser Welcome and I'm sorry you have to be here. I had a lumpectomy in March 2018 and rads in May/June 2018 but no chemo. The lumpectomy was an overnight stay and home the next day. I had the sentinel node removed and it was probably this that gave me more grief than the bc removal - really depends on the location of the cancer.
I would recommend help at home for at least a day or two. I probably could have managed if I absolutely had to, but it was exhaustion that really got me and lifting my arm up over my head e.g. to reach a glass in a cupboard. It was nice to have someone make a cuppa and throw something in the microwave for dinner or do a load of laundry.
If the doctors give you painkillers, do make sure you take them. It's a lot easier for your body to heal when the pain is controlled.
Best of luck to you and let us know how you get on.
