Home from Surgery
Hi, I'm home now (yesterday) and it's over. On the morning of my mastectomy surgery (Monday 18 May) I was feeling quite anxious but trying to remain positive at the same time. The staff were lovely but I found not as friendly as my first lot of treatment for wide local excision with nodes removal or perhaps it was me with more major surgery to have and super aware of everything around me! In recovery I had quite a bit of pain they had trouble getting me to a pain free point. Then taken back to a room to stay overnight. I was advised to peek at my scar as soon as possible and not to avoid looking as I would feel worse if I delayed looking. I could see a line of stitches when I looked down through my gown and thought well that's it! Snoozed in and out a bit with some pain relief. But didn't sleep much through the night. Doctors and Nurses saw me on Tuesday morning and asked how I felt and said they would perhaps look at sending me home on Wednesday and I could stay Tuesday night and sort out the pain relief issues. Nurse said to have a shower and see if this made me feel better. Well being a bigger girl getting dressed and undressed in front of a stranger is something I have struggled with. I married my first boyfriend! Young female Nurse was lovely and said she would help me. Being an independent person and sometimes stubborn I said I would try myself. Managed to get undressed - not easy I tell you. Someone needs to invent Velcro undies so I don't have to bend down to remove undies. I managed to fling them off around the room avoiding looking at myself. I turned the water on. Put my heavy drain tube bottles on the floor. Turned the water on and looked in the mirror. Well the sobs came loud and hard. The running water didn't drown them out as I had hoped. I knew I had to let it all out so I could deal with it and move on. Lovely nurse called out. Are you crying. I said nooooo. Sobbed louder. She said it's OK if you are, are you crying and I said yesssss. She said do you want a hand. God no, because now I was a hideous deformed beast! Stayed in the shower a long time and was ready to attack anyone who said it's time to get out. Someone else would like some hot water! Took a long time drying myself and put my brain back into gear with well - bad boob gone, want to live. It will heal. The hardest thing now was how do I get my legs through my undies! Wrapped myself in a towel and asked the nurse for some help. She was lovely. Wishing I had packed a lipstick because I wanted a bit of colour of my face. Nurse said I would feel better after breakfast. Had a few bites of breakfast and then threw it all up. Waste of a good shower. Got cleaned up again and had black tea and savoy biscuits
Friends say the dumbest things
I have chosen to tell a select few friends for support but now wondering about a couple of those. I guess time will tell who is who on this with me. I was feeling emotional 3 days after surgery and phoned a friend. After asking how I was and me explaining how confronting it all was this friend said 2 things: 1. Join a support group and 2. You're not the first to go through this and you won't be the last. Seems harsh to me. It did stop me in my tracks and I did stop being emotional probably because I couldn't believe she said this. It certainly has made me very careful what I say in future to her and less inclined to share. I have friends who would never be harsh like that and acknowledge/validate my emotions which is great but this person clearly is not one of them. How does everyone deal with people who basically tell you to get on with it?
Good news!
I received a phone call from the doctor yesterday. I have surgery booked for the 6th May to have the mastectomy done AND ALL of my scans came back CLEAR!!!!!!!!!!!!!! I am so happy, relieved and beyond thrilled at the news that the cancer had not managed to spread anywhere other than the breast and nodes. As i sat there in pure delighted shock, my husband did his version of the "happy dance". THAT was pure joy to watch. I am so thankful. Lois xxx
Dealing with emotions
Hello ... I'm generally not a joiner in community forums of this type, but here I am ... I was diagnosed on December 23 last year (2018) and had surgery (lumpectomy and sentinel node biopsy) on January 15. I start radiotherapy on Feb 18. I've recovered physically really well: my surgeon is great, she's done a fabulous job and I don't think I'll have a scar - so probably no permanent physical reminder. I'm back at the gym and am walking regularly and I hope to start running again soon. So the physical side of things is okay. I have a wonderfully supportive husband and even though my grown up kids live in other states (as does my sister, my mother, my brother and every other family member plus my best friend) they're all really caring and fabulous. But my emotions are a bit all over the place at the moment. I don't want to think of this as a big deal, but for some reason it kinda feels like a big deal. Is it? Or am I just making something big out of something that's ordinary and routine and not really a big deal at all? Does anyone have any tips on how to deal with anxiety about returning to work? I've been working from home this week, but today decided to go in to work. I drove (for the first time since my surgery) and when I parked the car I felt really anxious. It took a while to get up the courage to go into the office and now I'm not super keen to go back tomorrow. Any advice is greatly appreciated.
Cancer is the biggest c#%t ever!
It’s been 9 months since my lumpectomy, 6 months since radiation and think I’ve found another lump 😔 I’ve been having pains in my breast over the last couple of weeks which only really started since getting back in to the gym and exercise (a month ago) GP put it down to muscle strain and I thought so too....but today I started to feel around and it’s firm on another side of my breast to the surgery and I felt a lump in a different area to the first one. I’m freaking out. How I’ll stay sane until I get the proper checks done...I don’t know I honestly wish it would just f%#* off
Going Smaller
Due to surgical butchery in 1976 and again ten years later, the right side of my abdomen is now compromised when I find myself needing a breast reconstruction (DIEP). My plastic surgeon says it can be done but I will have to go small. Before kids I was a D cup, now I am an E. The surgeon says he can do a small B. I am struggling with the concept. I would love to have gone back to a D, and a C would have been manageable in my head, at this stage anyway. But a B? My self-esteem and self-image does not rest in my boobs, but you all know what a mind f*** this breast cancer is. Has anyone gone significantly smaller? How did you find it? Have you reached a state of acceptance? (I've also posted this in the Breast Reconstruction group but was advised to post here as well to cast a wider net.)
Reclaim Your Curves - a breast reconstruction resource for Australian women - Sydney Support Lunch
Come and join us for lunch in a relaxed and friendly environment at Eden Gardens, Macquarie Park, Sydney - Sunday 29th October 12noon to 3pm. Please rsvp so we can book numbers. Most ladies havent been before so please feel free to come along, share your story and ask any questions. Rosemary and Annmaree look forward to meeting you.
Breast reconstruction awareness event in Port Macquarie
Another Breast Reconstruction Awareness Event done and dusted! Port Macquarie welcomed us this time, and we heard about available reconstruction techniques from the lovely Dr Moradi and Dr Hingston. Our special women Alex, Trudy and Vicki shared their personal stories around making an informed decision regarding whether to move ahead with breast reconstruction or not. Thank you to all who helped make the evening a great success, particularly Magalie, Tracey and Fiona who represented BCNA and were a wonderful support. Thanks also to the other community organisations who displayed their information, and the YWCA Encore ladies who ran our stretch break.
Mastectomy bra and prosthesis issues
Hi all, its been 2 1/2 years since my left sided mastectomy and I am doing well. I do have a problem with mastectomy bras and prosthesis though. Even with great fitters and rebates, I have spent hundreds of dollars trying to find properly shaped prosthesis and comfortable mastectomy bras. My bras constantly twist and I end up lopsided with a sore remaining breast. I have a large DD/E cup remaining breast and a very big hollow in my chest wall opposite. The bra fittings usually go well and I now have 4 prosthesis and 10 bras but within an hour or two I am all twisted round and am constantly pulling and pushing! My remaining breast gets so sore that I am beginning to think my only alternative is to remove that one too but I am also emotionally reluctant to do that. Bras and clothing are torture for me as it is so obvious. Has anyone else had this issue and if you removed the remaining breast, did it work out? This seems so petty after everything else before it but it is driving me nuts.
The story so far...
I've never really known how important routine mammograms were until the events of the last couple of weeks have occured. I recall a conversation I had with Mum only a couple months ago – Breast cancer had a lot of media attention around the time – with Angelina Jolie’s double mastectomy and the Mother’s Day fun run coming up - I questioned whether she had ever had a mammogram? Her response was said with ease and with no sign of alarm as she calmly told me that she had them on a routine basis. I naively questioned the discomfort of this procedure and what was involved. Looking back on this conversation, I feel ridiculous and potentially insensitive for even asking such a question. Instead why didn’t I ask - how she felt about breast cancer? Was she ever worried? What was our family history? I now realise that the little discomfort this routine procedure may bring, is nothing compared what the results may betray to that person – whether it provides relief of now knowing that you’ve been granted the all clear (this round) or in the case of our family the fearful results of finding something suspicious. As it turns out, Mum had her last mammogram in April 2012. Here she was advised that due to inconsistencies with the tissue and family history of breast cancer it would be recommended that she had regular mammograms - instead of every 2 years, it was suggested she come back every 12 months. Now, as us girls often joke, Mum’s hearing is not always the best (selective maybe?), but I thank my lucky stars that she listen this time and went back for her routine check about 12 months later. Mum went for her routine mammogram towards the end of May 2013. She states now that she started to feel anxious when they kept her in the waiting room for almost 2 hours following the mammogram. The doctor came and saw her to advise that they could see something suspicious and that they would like to take a biopsy. Apparently 20% of Mammograms detect something suspicious & 80% of these come back as no concern. They took the biopsy on the Wednesday & advised that she would get the results back within a week. I rang Mum everyday (annoyingly?) enquiring whether she had heard anything – her response was the same each day – “Not yet, but I’m sure it will be fine. I’ll call you if we hear anything.” This response did not prevent me from calling her the next day… only to hear the same response again. I was worried & I could tell that Mum was too (naturally). The 5th of June 2013 was a day that shook our families world. Mum had her follow up appointment with her GP at 2pm and we all anxiously waiting for the results. My phone rang at 2.30pm & it was Ray – although he was ringing for a different reason (to pick my niece up from school), I could hear Mum crying in the background & I knew the news was not good. Mum rang when she was on her way home from the Doctors & suggested we go around there after we pick Isla up from school. My mind was in overdrive as I was trying to prepare myself for what I was about to be told. I could tell from the look on Mum’s face when we walked in that she was upset. She attempted small talk but ultimately we all knew where the conversation would lead too. Mum then relayed what the Doctor had advised her… There was bad news… but it wasn’t the worst news. The biopsy revealed she had breast cancer, however they were optimistic that they had caught it early. The Dr provided mum with a histology of her results and information from the breast cancer website. The results revealed that that Mum had INVASIVE DUCTUAL CARCINOMA – this translates to cancer that has broken through the wall of the milk duct and begun to invade the tissue of the breast. The cancer was approx 1cm square in diameter and was situated at 1pm (from the nipple) and approx 5cm deep. Like with any other event that occurs, I went into research mode. I googled every term in the histology & sought any story similar to ours in a hope to predict what was around the corner. However there was so many “what if” scenarios that I fell in to the trap of information overload. Every persons experience was different. In saying that, my googling actions were not conducted in vain - I discovered many support websites/groups such as bcna.com.au, McGrath foundation, & the Cancer Council Australia. We (& more importantly Mum) was not alone on this Journey… The Dr scheduled her into a surgeon – Liu Ming Schmidt – for Tuesday 11th June. Lucy and I attended the appointment with Dr Schmidt. She spoke very confidently and like Mum’s GP she sounded very optimistic about the prognosis. She advised that they will cut the cancer out and this would provide more information on its stage, exact size etc plus assist in determining the treatment (if any) required. She advised that during surgery they will also conduct a biopsy of the lymph nodes to determine whether the cancer had spread. Mum was scheduled for Surgery the following Wednesday. It would be an all day schedule which would include a Lymphocintogram, a hook wire procedure and then finally the actually surgery to remove the cancer & conduct sentinel lymph node biopsy. Our first stop was Albury Base Hospital where the Lymphocintogram was conducted. This is a technique used to track the paths from the breast to the lymph nodes under the arms. They injected Mum with blue dye and then watched it move into the lymph vessels. This would allow the surgeon to identify where the lymph nodes are for a sample to be removed & tested. We then made our way to the Albury Private where Mum was admitted & taken for her Hookwire procedure. The hookwire is where they guide a fine wire into the abnormality to assist the surgeon to know what to remove. Sitting in the waiting room with Mum, Lucy & I were the only ones in plain clothes. Around us were 3 other ladies, anxiously waiting in their bath robes. Each politely attempted short talk, primarily mentioning the weather and how cold the hospital was. As we all fell silent, James Morrison’s song “I won’t let you go” played on the radio. I looked around me & felt the tears hit my eyes. Although the week leading up was massive (not to mention emotional/anxious/sleepless) the enormity of where we were & why we were sitting there hit me. I looked at Mum & wished I could make it all go away. At this stage of the day, the McGrath foundation Nurse, Jude arrived. Her support so far has been amazing & the information she has provided has not only been educational however has helped put our minds (particularly Mums) at ease when confusion or worry sets in. Jude went in with Mum & walked us back to day surgery. She explained what to expect and gave Mum a “show bag” with cushions, seatbelt holders & lovely pamper products – just an extra little touch to assist with Mums recovery. Lucy & I waited… I was so grateful to have her there with me, not only for her knowledge of the medical/surgery/hospital but for her support/empathy/humour. Mum’s surgery took approx 2 hours 15mins. We were advised she was in recovery. They took us through to day surgery where she had been seated – she looked pale & unwell. The general anesthetic had an ill affect on her & made her feel nauseas & lethargic. We were in there for approx 1hour before the surgeon came & saw us. Liu Ming advised that the surgery went well however it was deeper than what she first anticipated. She predicted mum would feel quite sore as in an attempt to get clear margins she had to cut into the chest wall. She was advised that she would not know more about size/lymphnodes/stage etc until the results came back. A follow up appointment was made for 10 days later the 02/07/2013 at 2pm. It’s accurate to say that the day of Mums surgery was one of the most difficult days I’ve had to face. It was hard on all of us… it was a day that I never wanted to experience however at the same time there was no where I would have rathered to be (considering the circumstances). You never think you need reminding of just how important your family is, but its days like these that really make you realise how much you can’t live without them. After surgery Mum was obviously in pain & highly uncomfortable however I think it was the battle of the mind which affected her the most. There were many sleepless nights, plenty of cups of teas & lots of talking. It was a rollercoaster & although there were good & bad days, each day she was feeling (& looking) better physically and mentally. It’s amazing how we find mechanisms to adjust & ways to continue on with everyday life even if in same way, shape or form we are disabled. Physically, Mum found what activities she could do with ease and which ones exhausted her (like doing the dishers… haha). Mentally, she found ways to attempt to ease the worrying too – becoming informed, asking questions, keeping a journal, reading (even just one page) & talking. Although I don’t think any mechanism worked 100% (there’s still sleepless nights) & may have took a bit of trial and error - it certainly assisted in attempting to make every day easier. Our next step is the surgeon appointment on the 02/07/2013. We are all thinking positively about the results & praying for good news (hey… it all helps?)
