Two week count down, and you know what? I feel great. I don't feel scared at all at this point...I keep saying at this point because I expect myself, some time in the next fortnight, to wake up and realise I should be nervous...I don't know if that will happen. So what am I doing to prepare? Well exams are nearly over so I can finally give this my full attention. - I am going to get fit...over the next two weeks I'm going to do something everyday; swim, yoga, cycle etc. I am hoping Sean will hold me to this as I will soon get bored and give up.
- I am going to give up coffee...after the last exam of course! Coffee constricts small blood vessels, not good for healing, so I wont drink it again until I am healed. This is a big deal for me...if I don't have coffee in the morning I get a headache! So I have the decaf ready.
- I am going to stop drinking, after my Goodbye Boob Party (more on that later). I don't really drink much (apart from at my Boob Party!)...a glass of Red occasionally so I don't actually know why I'm doing this, think I just feel like its the right thing to do (?). It isn't strictly the right thing to do (if you want some medical trivia) an occasional small glass of Red is actually quite protective health wise (see the NICE guidelines for familial BC...they suggest you carry on drinking to protect against heart disease) I emphasis occasional and small! But it does make sense to stop drinking a good while before having a general anaesthetic.
- I am going to eat lots of fruit and veg and protein. I already eat healthily but I don't eat enough fruit and upping my protein (eggs, dairy, nuts etc. rather than too much meat) will help with healing.
I have this problem where I finish exams and I'm meant to start enjoying the break but I get a bit scared that I don't have any work...so turn my hobbies into a job. I think this surgery has become my summer job. Perhaps that is why I'm not scared, because I'm so focussed on doing it right...that probably isn't very healthy...a psychologist would have a field day. I don't wear a bra any more either! Not for any particular reason...I just couldn't think why I ever wore them anyway, nasty uncomfortable things. I'm gonna get rid of them soon...seems nice to give them a bit of fresh air and freedom first.
The other day we had a lecture that touched on patient experience of illness. The lecturer mentioned a study that looked at the 10 worse things to say to someone who is ill...things such as "I feel so sorry for you" and "you look terrible".
Sean turned to me and laughed...just before this lecture I had been telling him how I don't really like it when people say how "brave and strong" I am for having this mastectomy. Interestingly this is always people who don't have a BRCA mutation themselves.
I have been trying to write this post for a long time...I don't want to upset anyone, I appreciate the support that these comments convey. But having a prophylactic mastectomy doesn't make me feel brave and strong.
I recently read two blogs, one by a British women who mirrored my sentiments exactly and one by an American lady who had a list of things she would like people to say to her...including you are "brave and strong". Now I don't want to make any assumptions, but the American lady also calls herself a Previvor, a term that makes me quite angry...but I will spare you that rant.
The truth is that I'm just getting on with it. This is the lot I was given and I'm just doing what I need to. I'm quite happy with my decision, sometimes scared but never angry or upset...so there is nothing to be brave and strong about.
I wan't to emphasise that this is only what I need to do...my mother is the strongest women I know and she is choosing screening instead of mastectomy because that is what she needs to do.
Everybody has something...we all have our trials and rough points in life and we all just do what we need to do to get over and get on with it.
I have been asked by several women how all this has affected my relationship with Sean. I feel that is has only made us stronger, I know I can depend on Sean and he has been a great support. But I though it might be useful to hear Sean's perspective;
I don't remember Ellie telling me she had BRCA; really I have known ever since I met her two years ago. I started to find out more about BRCA in March 2011 when Ellie found the Hereditary Breast Cancer Helpline and discovered she had options.... A mastectomy with reconstruction did seem extreme at first, but the more I found out about BRCA the more it appeared to be the most sensible long-term option. Like Ellie I look at it from a fairly clinical perspective.
Ideally, I wouldn’t change a thing about Ellie, I think she is perfect as she is. I still don’t think it has fully struck me, even though the surgery is in two months time. I don’t think it will affect our relationship, I will still think she is beautiful and will never have to worry about her getting BC. However, I do worry how Ellie will feel when she wakes up. It is a big change in her body image and I can’t really imagine what that would feel like myself.
I am really dreading the surgery itself. I don’t like the idea of Ellie having a general anaesthetic and undergoing the other risks of surgery. I have no idea how I will occupy myself during the hours she is in theatre. I will be sick with worry.
I’m also concerned about the recovery period. I looked after Ellie for a week while she had gastroenteritis and she was a right pain in the arse! She is not good at being looked after. When she can’t do what she wants to do she gets very frustrated and I think she will find it hard to limit herself. I have dug out all my DVDs to watch with her and I plan to get a Kenwood mixer so she can still bake. She’s very good at baking and I am her official taster; she will still be able to bake me cakes even while she doesn’t have the strength to stir. I will also teach her to play xbox but I will have to be careful about it because she has an addictive personality. Ellie’s mum and I will have to tell her what she’s not to do. Friends in the area will be helpful I’m sure and come round when she is fed up of me.
Ellie and I are quite active; I love climbing and like to go with Ellie but it will be a long time before she is able to do that and it will not be the same without her.
I will put a couple of posts on this blog after Ellie’s surgery and during her recovery to let you know how she is getting on and how grumpy she is.
I wanted my mum's perspective for the blog so here she is:
Ellie had 3 things on her to do list for the summer of 2010, to pass her driving test, to be accepted to do medicine at Uni and to have genetic testing for the BRAC1 gene. She completed the first 2 with flying colours, and as they say 2 out of 3 ain't bad! She was found to have the gene ( personally I would have traded this for the driving test if you are listening God!! ) which, as a mother, meant coming to terms with something which I hoped would never happen.
I found out I had the gene when Ellie was 2 years old and I was 30, and felt sure the cure was just around the corner. Eighteen years later, still no cure but a surgical solution to put an end to the waiting and wondering.
Ellie has spent a lot of time researching her options, she has come to her decision and I will back her 100%,but that doesn't lessen my anxiety.The thought of her undergoing surgery and in pain is almost impossible to imagine, but I must look to her future, a future without breast cancer.
Ellie is a very precious daughter and we have a very strong bond, I am so proud of her decision and how she is helping other young women in the same situation through her blog. So, to all the mothers out there, stay strong and look to the future.
This week has proved hard for me. My medical degree has begun again after the Christmas break and lectures and now in full swing. The subject matter - Cancer. I am finding it increasingly difficult to be both doctor and patient in the risks and realities of cancer. The way information is delivered to a medical student, thought to be unaffected by the subject, is in stark contrast to the ever optimistic delivery of information to a patient. The unflinching way that pathologists explain what a dire condition cancer is, and how much worse it can be for those genetically predisposed, means I leave lectures feeling more than a little worse for wear. Its not that I don't want to know; most of the things delivered in recent lectures have been things that I am already all too aware of. Its just the clinical and hard faced delivery that I am finding hard to stomach. So I grit my teeth and head off to another neoplasia lecture... hopeful that soon it will be over and we will be onto the next subject...however the whole term is focussed on death and dying. So it may become less personal but I am doubtful that my course will become more cheery.
Oh the joys of being a medical student.
Its 5 months until my surgery, I set these wheels in motion 7 months ago and those months have just flown by.
I have found myself getting a bit restless in the last week. I have become OBSESSED with everything to do with mastectomy...I devour blogs, trawl youtube for video diaries and make a million lists of what I might need when the day finally comes. I hope this is just a phase because its exhausting!
Overall I feel quite calm about the surgery, my main fear is the lack of control that anaesthetic and strong pain medication afford. I like to be very much in control at all times; I rarely get drunk, I could never contemplate drugs and when I was poorly recently I struggled even to allow my boyfriend to make me dinner two nights on the trot!
I'm worried that I will wake up and not know my boyfriends name, or say something out of character, or god forbid show strangers my new boobs!
I also resent the fact that someone will have to help me shower, cook me tea and generally run round after me while I lord it up in bed!
That someone will be my wonderful mum and boyfriend. I know they are happy to look after me those first couple of weeks, I don't think I could stop them, but I will still find it difficult to relinquish control.
I see the surgeon again tomorrow and thanks to my recent list making I have a million questions for him. He is measuring me for implants and hopefully I will also get a firm date for my surgery. Until then I will continue with my obsessive research mission!
My partner Sean and I are medical students, we have exams in a couple of weeks, two 4000 word essays due in the next couple of months and we have just entered the real world where you have to pay bills and do your own asda shop and stuff!
Its all getting a bit stressful at our house.
At this time all I want is for it to be the summer holiday, 3 months with no exams, revision, assignments or medical stuff. Bliss.
I said something along those lines to Sean...he tells me he is dreading summer because that is when I have my surgery.
That made it hit home a little.
Sean and I are very new, we have been together just a year and haven't known each other much longer. He has taken on my burden without even blinking an eye. I find him more amazing every day.
It kills me to think that I am causing him extra worry, on top of everything else that he has to tackle at the moment. This is our last summer holiday, next year we start work in the hospitals and 3 month holidays are not a luxury that medical professionals are afforded.
I think I have trouble separating my worry, I'm scared to death about exams and assignments but I can't think further ahead than that.
I plan to play this to my advantage by keeping myself as busy as possible until my surgery date.
My last exam of the year is 30th May, Sean's birthday is the 31st. My surgery is currently pencilled in for the 12th June. That gives me 12 days, during that time I have to find a new house and buy a car. I think that should fill my time!
Surgeons used to insist on the removal of the nipple...hey you want cancer reduction so why not go the whole hog?
But research had shown that keeping the nipple doesn't make much difference (maybe 1% difference in breast cancer risk reduction?) so they now leave it up to the patient.
I have been torn for a while on this decision. If I keep my nipple I will wake up from anaesthetic with my breasts looking almost normal, I also wont need ( fingers crossed) any further procedures.
If I choose to sacrifice my nipples I will have done everything I can to reduce my breast cancer risk, also the reconstruction is so amazing that I really can't tell the difference.
I would love to say that the only reason I have chosen to have my nipples removed is because I want to reduce my risk as much as possible.
But if truth be told, whilst I have grown to love my boobs, I don't really like my nipples.
I feel the areola is too big for my breast size and I would quite like lovely little new ones please!
So I will wake up from anaesthetic with no nipples...looking a bit like a barbie doll. I will stay like this for a good while until a raised scar is created in the shape of a nipple. Then, when I get to the top of the waiting list, I will have my areola's tattooed on in the exact colour and size I want!
I really don't know how I will feel with no nipples. But then I also don't know how my new boobs will look. Its all a big unknown and Sean and I have accepted that I wont look the same. But I will be around to graduate, see my beautiful niece grow up and get old and grumpy with Sean. So we're onto a winner really.
I used to hate my boobs, I was so skinny when I was a teenager and my chest was much flatter than my friends. If someone had offered me a boob job when I was 14 I would have gladly accepted.
My boobs didn't get much bigger but I got over this silly hatred of my body when I was about 16. From that time until just a few months ago I haven't really though about my boobs, they're not my best feature but they're not my worst either.
When I decided to have the surgery I suddenly took notice of them and you know what, they're actually quite good boobs!
I got measured for the first time and I'm a 32D...so they're actually quite big as well!
And my partner seems to like them so I guess that's the opinion that counts!
But despite growing to love them, I don't think I will be sad to see them go. They look great, but they could kill me.
So you know what, I will give them gladly, on the one condition that cancer never dare darken my door.
Every month a patient support group is held at the RVI. Women who have had mastectomy and reconstruction volunteer to talk with and show their surgery results to women that are considering the operation. This group is for women who are losing their breast due to cancer and also women who are considering preventative surgery.
If this type of support is offered to you I strongly suggest that you go! It was so so helpful to not only talk to women in a similar situation but to see the results of reconstruction up close.
I was very nervous about this evening, thankfully my wonderful friend Sophie agreed to be my wingman and "help me pick some boobs!"
I felt a bit out of place when I got there as I was by far the youngest and I realised some of the women had mastectomy due to cancer, this made me feel a bit of a fraud because as yet there was nothing wrong with me. Sophie told me to stop being daft...wouldn't these women have taken preventative measure if they had the chance? She was right of course, as always!
It turned out that most of the women I spoke to were BRCA and had preventative anyway!
The results far exceeded what I had dared hope. In bras you just couldn't tell and without the bras the scars were neat and inoffensive.
The boobs also felt great! I was really worried as the implant goes under the pectoralis major muscle I thought it would feel like a body builder's pec! They felt very soft but the women did say that they were self conscious of people brushing against them as they perceived them to be quite hard.
I'm really looking forward to going to the support group as a volunteer and showing off my own scars!
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