#30 Belly Buttons, Vajayjay's & bikini lines.....

Now I don't want my blogs to get all too serious & boring even if we are dealing with a serious issue. I have had a lot of laughs with my husband, sisters & friends over this time, and I'm going to share some of those with you now. Firstly though I need to give you the Wikipedia description of my surgery so you can properly understand what I have had done, & why I have no muscle strength in my abdomen area.

Wikipedia definition;
A TRAM flap is a surgical procedure, most commonly employed for breast reconstruction. TRAM flap stands for Transverse Rectus Abdominis Myocutaneous flap. In this procedure, the breast with cancer is surgically removed, and a portion of the abdomen tissue group, including skin, adipose tissues, minor muscles and connective tissues, is taken from the patient's abdomen and transplanted onto the breast site. This procedure is preferred by some breast cancer patients because it combines a mastectomy with a abdominoplasty, and allow the breast to be reconstructed with one's own tissues instead of a foreign implant. It is contraindicated for patients who need abdominal strength, since the muscle removal weakens the abdomen.

Apparently my doctor's forgot to mention (or I didn't hear) they were taking muscles from my abdomen & obviously being able to get out of bed, or out of a chair wasn't something I needed to do anymore!! Of course I could, and perhaps should, have googled the operation I was having. But then I probably wouldn't have gone ahead with it, which is why I didn't (Google) at the time. I just needed to know the bare minimum so as to get through each stage as it happened.

Now that I have some muscles missing from my abdomen, there are a lot of things I cannot do & some that I will never be able to do again (or so they tell me), like sit ups for instance. I will never be able to do them again. Sit ups were something I've never been able to do, so you can understand how devastated I was about that :-) When I go the the hair Salon having my hair washed is lovely until the I have to get up from the chair, I scared the shit out of my hairdresser the first time when I fell sideways off the chair as she was raising it. Then there is swimming in our pool, I can't lift my feet off the bottom to swim as I feel like my stomach will split open, so I just stand around in the pool like a Nana. Getting out of bed involves a battle roll across the bed until my feet or some other part of me hit the ground. This part of the recovery I wasn't prepared for & I'm finding very frustrating. However I continue to go to Physio and do my Core work & feel a little improvement as time goes on.

There was a lot I hadn't taken in when the doctor's were speaking to me, and I believe this is common for cancer patients. For instance, no one told me I would loose my belly button and have it replace with a fake!  Hubby tells me, that I was advised about this. I don't remember and was shocked when I realised I had a new one. When my dressings were removed and I got to see the final outcome of the surgery, I realised a lot of things had been moved around. My real belly button was now tucked neatly somewhere closer to my Vajayjay than it should ever be, and as they have tucked it in they also pulled up my bikini line so high Hubby now asks when I'm getting my chest waxed!

A few days after surgery,whileI was in hospital, I finally got to see my new breasts! What a shock!! I screamed to my sister to come have a look (as she was visiting at the time) because I thought they had placed one of my new breasts in the center of my chest! WTF?? My lovely sister (looking very worried I might add) said "No it's not, it's all fine." (I found out later that she was actually worried about it too). However all of this was just swelling and in fact the surgeon has done an excellent job with the reconstruction. Even putting on deodorant can be a bit hit & miss as I have no feeling under one arm pit, and am never sure if I have hit the mark or not. Just waiting for someone to let me know!

So off to the Physio I head again with my pretend belly button & freshly waxed chest to continue my journey through this god awful disease, but with a smile and a sense of humor. God I love life!

#29 How Dense are you?

In a previous blog I have mentioned that I had very dense breast tissue. This was the major factor in having to have bilateral mastectomy when I was diagnosed with Breast Cancer. I have recently been pointed towards a Ted Lecture regarding this issue! Please take the time to watch this lecture; http://www.ted.com/talks/deborah_rhodes.html 

Mammogram technology is currently the major breast cancer diagnostic tool in Australia & America. Mammogram is a very important tool to uncover change in many women's breast, however if you have very dense breast tissue mammogram is unlikely to uncover tumors at an early stage. This is crucial for survival.

How do you know if you have dense breast tissue? If you don't, and most of us wouldn't know, ask your doctor and read your mammography report. Dense breast tissue is a stronger risk factor than having a mother or sister with Breast Cancer. Even though this lecture is out of the US, I had a call from a Brisbane Breast Cancer nurse recently who had just gotten back from a conference that talked about the relationship between breast density and breast cancer. So it looks as if Australia is catching up on this issue.

If you notice a change in your breast INSIST on additional imaging not just mammogram! Ultra sound & MRI can assist in finding tumors (It probably saved my life), until a new imaging such as Deborah Rhodes MBI technology becomes available.

 

#28 Grief

Well I have been told time & time again how well I'm doing, coping with my cancer & surgery! My decision to have my breasts removed was something that HAD to be done! A certain amount of disconnect was involved where you just get on with it! I've had people tell me that they couldn't have done it! I disagree, because until you are faced with your mortality you don't really know how you will react.

My husband has just been away for a month, which was quite difficult for me. We have been married for almost 22 years & don't spend a lot of time apart. So on his return I have turned to mush! I feel like all the strength I have had through my surgery & recovery has vanished.

Last night after an intimate moment with my husband, I felt immense grief. Like when I'd lost my father, but this time it was for the loss of my breasts......... I never expected to feel like that! I cannot explain it other than I sobbed with absolute grief for hours! I am blessed to have a man in my life that loves me totally & that my absence of nipples doesn't matter to him. Nor should it, but I have lost my usual self confidence.  I suspect these feelings will continue, but hope that I can regain my usual confidence & strength. I feel like I'm walking on egg shells right now.

Having just received a bunch of brochures about my Cancer recently "How are you travelling?" I guess I'm not travelling as well as I thought I was!

I'm sure these feelings are common for anyone who has felt lose of any sort, I would love you to share how you have coped with this. Once again I want to thank all the people who have been very supportive through all I am going through. (because I suspect it is not over yet!)

All comments welcome.

Nips r getting bigger!!

Well big news today! But you'll have to wait for the story to unfold............. (don't worry not long)

I had my appointment with my plastic surgeon yesterday! It had been three months since I last saw him so I wasn't sure what to expect. A girl friend from Melbourne was visiting and came along with me to my appointment. I had a 1200 appointment, then a Physio appointment at the same hospital at 2pm. I had planned to take my girl friend to my favorite restaurant  (5th Element) in South Bank for lunch in between. As the saying goes "Best laid plans" didn't quiet work out! We waited for the specialist for an hour & a half giving me only half an hour before my physio. Luckily the appointment didn't take too long. He was really happy with my recovery & all the wounds etc..

He wanted to discuss the next part of my progress which was Nipples! I have been thinking about getting my nipples for a while now and really didn't want to go there. I think after the surgery I had had, I didn't want to go back to hospital and go under anesthetic again so soon after the last surgery.  I have also met a few women who have had the same surgery and were way further along than me, but still didn't have their nipples. This made me think that maybe it wasn't necessary. My surgeon was very positive about the procedure and assured me that I did not have to go under a general anesthetic again if I didn't want to. He would do the procedure in his rooms with a local anesthetic and it would only take an hour. Wow!!

It took me about a minute to agree (not really but it kind of felt like it) The icing on the cake was that it wouldn't cost a cent out of pocket! ??? I wasn't sure I believed him after the cost of the original surgery, but he assured me it would not cost us anything. Tick!!  So yes it looks like I am going to get my nipples after all!

Don't ask me how ( I do know, but it's hard to explain without a diagram, so the explanation is not going to happen at this stage ) Maybe after the procedure! I will have dressing on for a week, then nipple covers to wear for about 2 weeks so as not to flatten the new ones. Then Tattooing!! But that's a whole other blog.

Woo Hoo! I didn't think I would be excited but I am. Hubby is away for the month so I can't even share it with him. :-( It is scheduled in about 7 weeks. You'll all know about it then. As a lovely blogger I follow  would tweet Squeeeeeeeeeee............(You know who you are Jayne xo)

#26 DAD

I am finding it difficult to catch up on my blogs, I really want to blog about what has just happened in my family rather than filling you in on what has happened over the past couple of months. So here goes!

While I was away on holidays early January, my dad was due to have a hip replacement which is all very standard. In fact the operation went very well and a couple of days later he was up and walking around the hospital doing physio and getting along just fine.

Unfortunately he developed an infection for which the doctors could not find the source. They started treating him with antibiotics & found he had extensive pneumonia. This progressively got worse & finally my eldest sister (a nurse) flew to Victoria to see what was happening. The next day my other sister (Kim who had come & looked after me when I had my op) called and told me she had just had a panicked call from mum saying dad has had a bad turn. She suggested I head down to see him! So in a panic I packed some clothes, not knowing how long I would be there for & booked a 0500 flight the next morning.

When I arrived at the hospital Tuesday morning dad was on oxygen with a mask that covered his whole face. I made a comment about not wanting to miss the party, he laughed & had a joke back at me. These were the last words I would be having with my dad! Ever!

By the afternoon, he had been intubated & sedated. Therefore unable to communicate with any of us. Over the next two days we sat by his bedside throughout the day watching him deteriorate. Going back to my sisters each night (she lived about an hour & a half away from the hospital) Mum & my eldest sister were staying with friends near the hospital.

On Thursday evening when we were all planning on leaving the hospital the nurses suggested we stay & speak with the doctor. He advised us that he may not last the night! His kidney's had failed & so had his liver by this stage! Kim & I sat with him all night, Karen took mum to a motel for a couple of hours to try & get some sleep & one of my dad's brother's who had come to see him that day, decided to stay also. We sat with dad getting my uncle to tell us stories of them growing up!

It was a long night, mum came back about 1am and we all just sat with him until the end 0650 Friday morning! I will never forget sitting with him right until the end holding his hand & talking to him.

We were all devastated, especially mum! To her it was so unexpected they had been married for 54 years!
I am so grateful that the family had been together only a month earlier & that dad had been so happy at that time. I will miss him always.........................

Rest well dad, I love you xoxo

With my younges & my mum at Dad's wake........

#25 Tamworth

Well I'm sorry for being so tardy with my blogging. I'll try & give you all an accurate update of my progress!

So much has happened & it all feels like it was so long ago! I went back to work as you all know after my surgery & was doing short shifts up until Christmas. Each week I was feeling stronger & not so tired afterwards. Christmas party's were starting to happen & I was feeling well enough to attend my previous works dinner late November & then a couple of weeks later my current works party! All was going quiet well. I have previously mentioned that I had a family party to attend in Tamworth the week before Christmas & was very excited to see all my family after all I had been through.

This weekend started to look like it was never going to happen. There had been a lot of flooding around the country especially in NSW leading up to this & getting to Tamworth was looking to be a challenge for all the family, as we were coming from different States. Dad was due to have a hip replacement Op in January & his cardiologist wanted him to have a pacemaker before this surgery. Mum & Dad were not sure they were going to make the party (Dad's 80th & my brother's 50th combined) as they thought the pacemaker surgery was going to be around the same time. My eldest sister had a death in the extended family (her brother in law) & the funeral was still to be scheduled. My surgery was the least of every ones worries. Things were not looking good!

We were all due to arrive in Tamworth on the Friday for dinner & it wasn't until Wednesday night that I received a call from mum saying they would be there as the surgery was scheduled after the weekend & my sister could also attend as the funeral  was also to be after the weekend! Yay, finally it was all falling into place.

Finally we were heading off, after several detours due to flooding we managed to get to Tamworth 10 hours later just in time for dinner. We were the last to arrive! It was so amazing walking into the pub & seeing all my family. I felt very emotional after all I had been through!

The weekend was so lovely & the party on Saturday night was fantastic! My brother (A chef) made a surfboard sushi platter, that Dad thought was just for him. Photo's to follow :-)
We spent Sunday doing Christmas presents & final goodbyes as everyone had a long trip home. Little did we know it would be the last time we would all be together!

Dad enjoying his Sushi

The whole family together (minus one nephew)

#24 Hubby's perspective

My hubby, who has been amazing through all of this & still is, wanted to put his point across. I hope you find it informative. I'm crying as I type. xoxo

Hubby's Perspective

Reading Noodle’s blog has been great and I think quite therapeutic for her… and for me too reading it, even though we’ve lived through it and discussed everything, there has been a certain amount of emotional disconnect.  What I mean is we’ve dealt with it all by just doing what needs to be done, but it’s been a little surreal.  Noodle’s let me write this to give some of my thoughts on this experience.

  

In one of Noodle’s blogs, she mentioned the “Bubble has certainly burst”, but in reality I think we’ve been pretty lucky.  She was vigilant when checking lumps, so caught it early.  The decision to have the double mastectomy was the absolute right decision based on the outcome of the post op results, and early diagnosis meant the cancer hadn’t spread to the lymph nodes.  So, I don’t think the bubble has burst, it just deflated a bit.  And my message to the girls reading this is to be vigilant and act early if you find a change!

No mater what city I’ve dragged the family to with work, Noodle has always been quick to make friends and her ability to maintain and nurture friendships (no mater where she is) was very evident by the overwhelming support she (and I) got from all around the world.  Although I thought it may have been a little impersonal, I kept local and distant friends up to date via Facebook and Twitter updates, which I’ve been told people liked because they felt like they were able to keep up with what was happening without them feeling like they were annoying us… which no one did.  Social networking has worked well for us during this experience!

Being a partner of a cancer sufferer has it’s difficult times… you’re really just an observer, and most of the time you feel very helpless, there’s nothing physically you can do to make things better.  This is very annoying for someone who likes to think he’s in control… but we all know Noodle controls the family J.   All you can do is be there with love and support, which was the easy bit.      

I was lucky enough to marry into a great family, I love Noodles family and as expected they were fantastic through the whole thing.  I have to single out Noodles sister Kim and her mum who both came up from Victoria to stay with us for 2 weeks each (4 weeks total), with a shift handover at the airport mid term (drop Kim off, pick mum up)… they were both amazing and I can’t thank them enough for all their love and support. 

We’re now just over 6 weeks post Op, and Noodle is doing amazingly well, and she looks great.  But clothes and Noodle’s smile hides the physical and emotional roller coaster of the last few months, and the pain she’s still experiencing.  We’ve settled back down into a pretty normal routine again, and time is slowly healing.

Thanks everyone for your support!!! 

Love you honey! Gav xoxo