BRCA support group

So first the good news.  The facilitator of the BRCA support group did get in contact with the people who run the pre-op sessions for breast surgery and now those undergoing surgery  WITHOUT cancer are now welcome as well!

So as I briefly mentioned in my last post I found a local BRCA support group.  The group was wonderful, all the women were very open about their situations – and each was in a different stage, from another women like me planning a prophylactic mastectomy to a women from whom her surgery was almost 10 years ago.  It was great to talk to people who had gone through the experience and had some suggestions in regards to my mastectomy surgery – many of these I have read online but I’m going to start to keep track of them here – for myself and if anyone happens to find this blog:

  • there are stores in the area that specialize in mastectomy supplies, in fact if I do attend the pre-op session I should get a certificate for a free camisole designed for after breast surgery (at about $75 to purchase this would be great); although one of the women offered to let me borrow hers!
  • there is a place in the area that specializes in post-mastectomy physio and massage, not covered by OHIP but may be covered by private insurance
  • go buy a stack of cheap front closure sports bras, worry about fit around the rib cage and not so much about cup size
  • buying a bra after all surgery is done will likely be difficult – but as a bonus I won’t really need one
  • clothes will not fit right after surgery and likely beyond
  • buy some button up clothes and make sure I have a supply of comfy pants that I can just slip on (no buttons)
  • they sell special pillows to support your arms after surgery but one women suggested using a nursing pillow (of which I have a few)
  • bring a pillow for after surgery to keep the seat belt off your chest
  • stay on top of your meds – set a timer and take them even if you aren’t feeling any pain
  • make sure you have all the meds you need BEFORE you leave the hospital, one lady mentioned getting stuck in traffic after surgery and her meds wore off – OUCH
  • I will not be able to sleep in a bed for awhile – sleeping flat will be very uncomfortable and I then I wont be able to get out of bed.  Suggestions include creating a nest of pillows, renting a hospital bed or lift recliner
  • I was sad to hear one women mention that holding babies didn’t feel the same after her surgery but I’m very glad she said it.  I kind of expect that but it’s different when someone actually says it.
  • And I’m sure there was lots more that I’m currently forgetting.

But the biggest thing was just their openness about their experiences and being willing to share.  I’m already looking forward to the next meeting in August.

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Here’s to hoping I look that good after my surgery!

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The end of breastfeeding

So it’s done – two days ago when E woke up I gave her the boob for the last time.  They are currently feeling very full and sore – and have started to leak again.

I’m feeling some mixed emotions about this.  When M finished breastfeeding it was his choice he weaned naturally and easily – I never told him no when he indicated any interest in feeding from me but slowly he got more interested in solids and began to lose interest in feeding from mom.  I actually can’t remember the last time I fed him – but after our VERY HARD start at breastfeeding M was great – he got on, fed and popped off when he was done.  E on the other hand is an ‘active’ feeder she is constantly moving and looking around (with my nipple in her mouth) and popping off and on – making it difficult to tell if she is done.  So this is where the mixed emotions come in – I know that breastfeeding is good for her and is it free but at the same time I think my nipples will be happy to no longer be pulled in every direction.  I’m not really sad to be done breastfeeding but I’m sad that it wasn’t on E’s timeline and because of the reason for stopping.  Also, and this is likely the reason my breast feel so sore and it seems so hard to deal with is the last time I felt like this was when my milk came in after we lost Ava.  My breasts are saying fed the baby but I can’t and it brings back some not so good memories.

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Pre-op Sessions – ANNOYED

I’m annoyed – or maybe angry, I’m not really sure – but BRCA carriers or others who opt for a preventative mastectomy are not welcome at the pre-op session our hospital holds for people (with cancer) undergoing any type of breast surgery.  So although I’m undergoing a double mastectomy I am not invited but someone undergoing a lumpectomy or a single mastectomy can.  I understand that cancer is horrible – I’ve seen it – but I’ve made the difficult decision to remove a large portion of my risk factor for breast cancer and even then it’s not a guarantee as they can not remove all breast tissue.  And, yes, likely I wont find all the info important, but to be honest I’m kind of curious about how radiation and chemo effect surgery.  My sister had an appointment to meet with a surgeon about a mastectomy but didn’t live long enough to make it.  So in some ways I feel I’m doing this for HER.  She died and suffered so that I have this knowledge and to have someone basically tell you that sorry but your struggle isn’t as important as this person is so maddening.  For the majority of us with these deleterious genes we found out after a close relative tested positive (likely after they were diagnosed with cancer) and/or have has a number of close relative die – and considering that the cancers in those with the genes tend to be the harder to treat kind we would like to minimize our risks as much as possible.  So don’t tell me that my struggle is any less – ask these women if they have crawled into their baby sister’s hospital bed and told her that it is OK to let go and that she was so brave but she could rest and listen as her breathing changed from gasping, hitching breaths to something more quiet and then it stops altogether.  I have SEEN what cancer can do and these women can receive support (mental, physical and monetary) but it seems like for those of us that know that cancer is in our genes there is little support.

The silver lining is that during my internet search to find some support and info about a mastectomy in the Ottawa area I came across a BRCA support group.  I attended my first meeting this past week and it was wonderful – I really wish I had found it sooner.  But the ladies there who had battled cancer were surprised when I told them that the pre-op sessions were only for those battling cancer.  Although one woman who was BRCA-2 positive attended the session without a cancer diagnosis, she said she got some flack but was able to attend anyway and suggested I do the same.  In addition, the lady who facilitates the group was surprised and said she would look into it.  I’m hoping she gets a positive result but regardless I plan to call later this week and register.

And for your enjoyment – since the post was so heavy – here is E rocking her sunglasses, which she promptly removed about 3 seconds after this photo.

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Prophylactic Surgery – Thoughts

So now that a date for the mastectomy is set I find myself thinking about what it means for me – and my family.

I feel such a mixture of emotions but I think the dominate one is relief – the end is in sight and a have a date.  But I’m also a little disillusioned about the whole process – there seems to be so much help for people with breast cancer but not much available for those of us who are at increased risk of breast cancer.  For example, when I met with the nurse assisting my surgeon she gave me a handbook entitled ‘Breast Cancer Surgery’ – she blotted out the Cancer part – and the first part of the book talks about a pre-op information session you can attend.  She informed me that the session is mostly about cancer and therefore I wouldn’t find it helpful – but it would be great to know what to expect in regards to this surgery.  I mean I can read all sorts of info on-line but it’s so much better hearing a real person talk about what to expect in regards to the surgery (at my particular hospital), any specific things I might need and to answer any questions.  I sent an e-mail to the group that runs the sessions to see if I would in fact find it helpful.  There are also lots of counseling, physio and other options for people who have been diagnosed and undergo surgery.  I mean in some ways yes my surgery will be different but for the vast majority of the procedure it will be the same.  I watched my sister struggle and die, I know that cancer is horrible but I don’t like feeling like my struggle doesn’t mean as much – it does to me and to my family – and I still have to recover from three major surgeries – mastectomy, reconstruction and ovary removal.

The good news is that the surgery has made me look at things which are available – fortunately there is a BRCA group in my area and they meet once a month.  I’m thinking I will give it a try this month as I only have this month and next before my surgery and I’m hoping I can speak with someone who has undergone the surgeries.

Oh Boy

Just over two months to go.  Surgery date for mastectomy is set – September 21!

A large part of me is relieved – I now know when it will happen and I’m not suck waiting. It’s going to be hard – no lifting for a few weeks, M isn’t going to understand and I’m going to miss my cuddles.  Plus I’m hoping to have a job by the Fall so I’m not sure how this will work, but it’s the best thing for me.  I’m also nervous as I’ve never had surgery before – I even still have my wisdom teeth.  It also is an extra push to wean E – so far it going well I’m down to two breast feedings a day; I have about 2 weeks to go.  So next week it’ll be down to one and then none.