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CruiserCruiser CanberraMember Posts: 12
edited February 5 in Newly diagnosed
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.
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Comments

  • ~Millie~~Millie~ Member Posts: 58
    Hi Cruiser, sorry you've joined us. But, hopefully you'll find a lot of love and support here. I had a lumpectomy in July, and I think for the first few days you should have someone with you, or at least checking in each day. I needed help washing and combing my hair. Couldn't lift my arm too well. I also didn't want to do much in the way of moving my arm around. So, having someone able to make meals was handy too.

    I too had things planned, radiation was coordinated around an existing commitment. An overseas trip was booked 9 months out from diagnosis, so far it's still on. Although, I've got a specialist appointment next week, so we'll see how that pans out. Don't cancel anything until you absolutely have to. Treatment plans change, how you feel can change. Leave yourself something to look forward to. I'm not sure if you are going public or private, but my surgeon and oncologist pretty much said there is more flexibility around appointments and scheduling if you are private. So, that's the way I went.

    Best wishes xx
  • arpiearpie Mid North Coast, NSWMember Posts: 2,775
    Hi @Cruiser - welcome to the forum - it is not the one most of us want to join - but on here, you will get a HEAP of support & info on all sorts of stuff that you may end up going thru.  Any question - just ask away.

    We have a few members in Canberra who may be able to help you out wth the local resources ...... you can add your town name to your profile, so others can see.  @CathyMac

    I had my surgery in mid Jan 2018, (didn't have chemo) and then had Rads and still got my holiday to Norfolk Island in late April, then went onto tabs afterwards  ..... so fingers crossed that you will still be able to go on your OS trip in July.  It would be terrific to be the 'reward' after your active treatment has been completed!!  

    From the day you find out you need more than a mammogram onwards - it is a real roller coaster ride - and your emotions can come in waves.  You are OK, then sad, then OK, then angry ..... all of this it totally normal.

    It is terrific that you have good friends & work colleagues who are so supportive of you.  Re going home alone after surgery - if your friends have offered to look after you - you will need to be picked up anyway, so I'd be suggesting you take them up on it.   I stayed at my brother's place after surgery just for 2-3 days (as you shouldn't be driving straight after - even for a week or two depending on the surgery performed.)   Also, you may get sleepy from the anaesthetic .... and altho not fully immobilised, it can be awkward in the first couple of days.

    All the best for your surgery in Feb xx
  • CruiserCruiser CanberraMember Posts: 12
    @-Millie- thank you for your kind words. I know you're right about having someone with me but there is so little I can control in this process, keeping my independence is important to me. I think I will pack for going to my friend's place and see how I feel on the day. I have meals frozen which will only require reheating so I am prepared but I guess I won't know until the day comes which is the scary part. Thank you for giving me hope that I will still be able to go on my trip, I think that is my biggest fear out of all of this is that I will have to cancel as it is something I am certainly looking forward too. I do not have private health insurance, up until this point I have never had any major health issues to justify it but the public system seems to be working fairly quickly for me.

    @arpie - thank you too, it's nice to know I am not alone on this journey and that there is hope that I may still be able to travel. I will think of it as a reward, it hasn't been a good start to the year and I will need it even if I have to take it a bit easier than I had planned. Thank you for confirming it is totally normally to have these feelings, I have been very up and down and I am finding the toughest part is dealing with other people's emotions and expectations, it's exhausting. Kind of hoping I had kept it to myself until after the surgeon's appointment. My family are all on the mid north coast as well, Lake Cathie and Port Macquarie so it's a bit difficult to get up there for a few days for recovery.

    Thank you both so much for the support and advice 
  • kezmusckezmusc Member Posts: 1,149
    Hi @Cruiser,

    Welcome lovely.  Always valuable information and lots of support from everybody no matter the time of day or night.  No one else can understand that shock and white hot fear of a cancer diagnosis like someone who's been there. The ups and downs of emotions are why we call it the rollercoaster.  You swing from Yep I got this, to cloudy fog of doom and a flood of tears within minutes.

    You will need someone with you for 24 hours after surgery or they won't let you out of hospital anyway.  I had node removal as well but I think if was just the lumpectomy I would have been ok on my own after a couple of days.  Depends how you handle anaesthetic as well.
    .
    I just took to hospital the bare minimum, you don't really need all that much, plus I missed the first 24 hours as anaesthetic and I do not mix so I just slept.  

    Button up nightie or pj's, phone, ipad, books or whatever to keep yourself amused.  Basic toiletries. I  took one bra but that was pointless.  I didn't wear one for a week and a half at least.  The little crop top ones from best and less are very soft and comfortable once you can wear them.  Cheap too.

    One thing that shocked me was the tears when I woke up day 3 post op.  Uncontrollable.  Which was rather embarrasing considering I was in the ward that I work in.  Apparently this is quite normal after surgery and anaesthetic....no one told me that until it happened.  I ended up with my boss sitiing on the end of my bed trying to calm the tears and telling me it was perfectly normal and would pass. It did within a couple of hours.

    If you are more comfortable at home (who wouldn't be)  can someone stay at your place for a couple of days?

    Big hugs

    xoxoxoxo






  • kitkatbkitkatb Member Posts: 413
    Hi @Cruiser,  welcome to the forum no one really wants to be in.  It is the place to come for a rant and rave when need be, for support and also for plenty of laughs and tears along the way.  We get how you feel.   Waiting is just the pits so try and keep yourself busy either going for walks or maybe just watching some good movies on the box ( Yep  easier said than done )    Initially I had Lumpectomy last year and found when I went in for surgery I had packed way too much.  You really won't need much and you will probably only be in overnight. Are you having Auxillary nodes removed.  It would be handy to have a friend come and stay with you just for a night or two as there is nothing like your own bed.  You will know a lot more once you get the pathology results from your lumpectomy and this can sometimes change things as it did me.  Hopefully it is all you need though plus the Rads.  Thinking of you and big hugs your way.  xo
  • Annie CAnnie C Member Posts: 543
    @Cruiser
    Welcome to a most warm, comforting and supportive forum. The ladies here have been more useful than either of the two counsellors I was allocated, ( via telephone as I am very remote).

    I had a lumpectomy and sentinal node removal for a grade 3 tumour at the end of July 2017. 

    I had a 19 day 'trip of a lifetime' tour of New Zealand booked for end of September 2017. I was advised to cancel it as radiation would start mid September.  I cancelled. Post surgery, in mid August, I was then told that radiation would not be needed as my nodes and margins were clean. 

    Glad as I was regarding nodes and margins, I do wish that I had not cancelled that trip. Like yourself I had planned and researched that trip for over 18 months. However the final payment was required just days after surgery. What a dilemma I found myself in.

    What would I do differently if I have a recurrence? The medical fraternity would have to work around my plans. 

    I wish you the very best for your treatment.

    Warm and wet (very wet) Kimberley wishes to you.

    Annie




  • KattykitKattykit Member Posts: 201
    @Cruiser, please have someone stay with you for at least one night, if you have a dizzy spell and fall after the anaesthetic and you're on your own you could hit your head or break a bone and no one would be the wiser, that is the reason the docs like you to have someone around for the first 24 hrs at least.Having said all that, I hope everythi g goes well for your surgery and path results.
  • CathyMacCathyMac Canberra, ACTMember Posts: 65
    @Cruiser
    I am so sorry you have had to join us here on this forum. What a wonderful group of supportive and positive people they are though. This forum has helped me enormously as I'm sure it will you. I hear you and feel your pain!. I too am in Canberra and was diagnosed on the 8th November 2018. We were meant to be flying out for Europe on the 28th November 2018 to celebrate our eldests son graduation from school. We had been booking and planning for the best part of two years and we were going for 9 weeks. I had, had a reminder for a mammogram and booked to go as I was a little overdue but I'd been having them for years and had always been clear so I had no concern for it coming back positive.
    Our lives were instantly thrown into turmoil and I knew our holiday was cactus. Fortunately we had taken out travel insurance. So we embarked on the great unwind of all our bookings and instead I was making a booking for a surgeon.
    You seem to be organised on the hospital front and I can't think of anything else that you would require. I had packed so much and only required so little.
    The one thing that I have found enormously helpful for sleeping has been a full body wrap around pillow. It has been my absolute saviour since having to learn to sleep on my back. It took all the pressure off the bits that hurt post surgery. 8 weeks post surgery and I'm still using it as it allows me to sleep on my side in comfort whilst I'm still a bit tender where my nodes were removed.
    My diagnosis went from lumpectomy with radiation and meds to mastectomy after I had an MRI that showed the tumour to be larger. It was also thought there was no node involvement to having 3 nodes involved. So I'm having the whole gamut. 14 rounds of chemo and then 5 weeks radiation and then on meds for 7 years. I can't tell you how awful it was to be given such positive hope only to find after the MRI and surgery pathology that it meant I would have the works. I have my fingers firmly crossed for you, that a lumpectomy, rads and meds will be or that you require.
    If you would like any info re the Canberra I'm just shout out.
    Hang in there it's a bloody nightmare but you've got this!
    Thinking of you
    Cathy
  • CruiserCruiser CanberraMember Posts: 12
    Thank you so much ladies, I will take all your advice on board. Most of my friends are married with children so I don't think I have anyone that can come and stay with me and the challenge for me is that the one friend who insists I move in with has teenage boys and it all just seems a bit awkward. I also have insomnia and keep myself amused at night if I'm in my own home but getting up and waking the whole household seems a bit inconsiderate. I know Mum is busting to come down and help but, being 8 hours away, I just don't feel like that is fair to her. I may just have to swallow my pride for a short time. I guess I just thought I'd be up and racing by the time I left hospital but seems that may be a bit delusional on my part :( The surgeon did mention blue dye and lymph nodes so I'm pretty sure I'll be having that procedure as well. Thank you @Annie C, I won't rush into cancelling anything at this stage and it will be full steam ahead on what little planning I have left. If it turns out I can't go then my travel insurance can reimburse me. The breast care nurse told me to keep reminding her of my holiday plans in the hopes they can speed along my treatment which most likely will involve 3-6 weeks of radiation so I have all my bits crossed that it's 3 weeks and not 6. I will do whatever I need to do to rid myself of this though and ultimately my health will always come first. Does anyone know how long I can expect not to drive for please? I need to give work an indication of how long I will need to work from home for although I will be resting for at least 5 days after the surgery. I'm so glad I found this forum, you lovely ladies rock :)
  • FinchFinch MelbourneMember Posts: 295
    Hello there @Cruiser. So sorry you've had to join this forum , but golly,  you couldn't come to a better place for advice, friendship and off loading any frustrations.  
    I wouldn't be looking at changing any holiday plans until after your lumpectomy.  Once surgery has taken place you'll have a full indication of what Your treatment will be from pathology results.
    I originally at biopsy was having lumpectomy and radiation and was told my overseas trip could still go ahead.  After lumpectomy the pathology indicated a need for chemotherapy.  My overseas flight for three months later was cancelled. 
    I did travel to Canada 5 weeks after the end of radiation and was absolutely fine, just had to take it a little easier than normal.
    Regarding your surgery, I had sentinel node removal and lumpectomy . I had day surgery and was home by 3pm and managed to cook baked beans on toast for our dinner that evening.  I took it very easy but was ok.  I advise you to have someone take you to the hospital and drive you home and stay over for the night just to keep an eye out in case of problems. The hospital discharged me as soon as they possibly could so I hardly remember walking to the car or the trip home. I totally understand you wanting to be at home in your own bed. 
    one big piece of advice I took on board from this forum is now is the time to look after yourself.  Put yourself first, spoil yourself , be kind to yourself. You've had a big shock and it's all bloody rotten .  
    Keep asking the questions. Everyone is so helpful and friendly here.
    Wishing you all the best with your treatment.  You take care .  Hugs xxx
  • arpiearpie Mid North Coast, NSWMember Posts: 2,775
    edited January 31
    After my lumpectomy, @Cruiser - It was suggested that I not drive for a week or 2 .... but the only way we were going to get from Sydney to home was by me driving ...... so, 3-4 days after surgery, I very carefully drove 4hrs home with my husband (who has dementia) with a break for lunch half way.  If you have an automatic car with power steering, it is easier to get back to driving - both ours are manuals & our 'every day car' is not power assisted steering, making it harder again!  :( 

    The bumps in the highway/roads were the real issue, 'specially once 'at home' as our roads are not the best!  :(   I soon knew every bump on every road & used my free hand to hold my boob in place as I went over it, to prevent it from bouncing - which was REALLY sore, if it bounced!!  The 'range of movement' that you will have after the surgery, will all depend on the amount of tissue removed & where from & how you recover/repair initially.  Better not to do it too early if the pain is strong, as it could lead to other issues.  Make haste slowly.  Work will have to wait for you in this instance xx

    The dye will be for the Sentinel Node test - to identify the nodes that your tumour drains to - mine were removed from the same incision that my tumour was in - so I don't have a 2nd scar. They usually take the closest 2-3.  Mine was done the day before my surgery.  Some surgeons do it on the same day.  

    Re  how long you will  be working from home ...... how long is a piece of string?  You will know when you are ready to return to work.   A lot of the 'stress' involved with BC surgery/treatment - is the mental side of it!  It really does knock us about a bit.  It mucks with our brain.    As you go thru the various treatments, there may be side effects.  Some fly thru everything.  Most have some side effects with chemo.  There are fewer side effects with rads - more tiredness/fatigue and possible skin breakdown.  

    Take care xx
  • Beryl C.Beryl C. Member Posts: 148
    Hello @Cruiser - this forum is GOLD! Just want to tell you that you can have someone visit or stay over and maintain your independence. How? By accepting or refusing their offers and suggestions, 'no, don't vacuum, I don't want any noise'. or, 'I'd love a coffee, can you make one please?' This worked for me and I was surprised to find that I enjoyed having company. XX Beryl
  • KarynJKarynJ SE QldMember Posts: 99
    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.
  • kmakmkmakm MelbourneMember Posts: 7,188
    edited January 31
    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.
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,277
    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


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