Me and Mr BRCA1

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Archive for the ‘My Diary 2011’ Category

Sunday 11th December – Santa is coming

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Well… I cant believe that this time in 2 weeks it will be Christmas! Most of my shopping is done, the food is ordered so… with the past few months being a really trying time for me, I can now just enjoy time with family and friends as they really are the true gifts of Christmas.

Saturday 3rd December – Another infection

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I have recently been in hospital again with another infection :( I try not to let it get me down, but the whole process is really quite hard. I think that if I wasn’t such an active person, someone that didn’t mind asking for help, if I wasn’t so stubborn, then I guess I would find the process an easier one.

I do have down days, especially when I haven’t had a good nights sleep – which is quite difficult since the operation as I love laying/ sleeping on my front and haven’t been able to since. I have tried using several pillows in various positions but nothing seems to work! I can’t wait to get my ‘perma-boobs’ and for them to be settled! LOL!

Saturday 15th October – Another expansion

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Well I have had my last expansion, so its just time now to settle before the exchange operation. My surgeon seemed to think that everything was going ok, minus a few things that she has mentioned when the next op comes eg move them a bit closer together, cut scar tissue away from my problem boob to get it lower. My next appointment is in January, with the view to have the exchange in February some point.

A while back, I had told some of my cousins about the gene in the family and whilst some haven’t even got back to me about it, others have. One of them had decided that she wanted to have the test done and earlier this week I found out that she too unfortunately has the BRCA1 mutation. I felt awful about having to bring up the subject of the gene and the following result. Speaking to others on how I was feeling they all said that they would have done the same thing. They also said that I needed to put myself in the situation of how would I have felt if I hadn’t passed the information on and then found out that they had cancer. When you look at it that way and how I would have felt if I hadn’t been told about the mutation then got cancer myself, I think it was definitely the right thing to do.

Wendy Watsons book ‘I’m Still Standing’ (from the National Hereditary Breast Cancer Helpline) was out this week and I pre ordered my copy from Amazon. I still hadn’t received it so went to my local Tesco to pick it up. I couldn’t find it on the shelf so decided to drive to the next towns shop to see if they had it. Success! So… with a nice cuppa that’s all I have planned for this afternoon. Happy Days!

Wednesday 14th September – Woo… melons!

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We went off to hospital for another expansion today. My right boob is still sitting a lot higher than my left. So much so that one looks like a computer enhanced porn star boob, whereas the other looks rather nice! It did make me laugh as when my surgeon was expanding my second boob, as she was finishing up said “woo… melons!” I was laughing so much that her hand was jumping up and down on my boob, which just made me laugh even more! My surgeon is still happy with the way things are progressing and said thinks that there should only be 1 or 2 more expansions left. She also said she will put my name forward for the exchange surgery, which should be around February/ March time.

When I got home, I put one of my old bras on to see how far I am off my original size – and there isn’t a lot in it now. This expansion has really made my boobs rock hard and me super tight and have had to take my ‘super painkillers’. It’s mostly on the right hand side where I had the problems, and cant lift my arm fully without it really pulling. The feeling normally eases over a few days so will just have to toughen up!

The National Hereditary Breast Cancer Helpline charity ball and training was fantastic. Everyone was lovely and friendly and even though all our stories were different, we could all identify with each other and understand decisions each of us made. Supportive family and friends are great, but talking to women in the same situation was something special. Unfortunately I never knew about the Helpline until I was close to having my risk reducing surgery and could have done with a friendly ear/ support/ advice when things seemed a little tough. At least then journey wouldn’t have been such a lonely one.

Wednesday 7th September – Rant

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I started back at work part time this week and plan to go back full time in 2 weeks. Trouble is, I think I may need to do part time for a bit longer, but like most people, cant afford to. SSP is ok, but when you have bills and things to pay its hard to go down to pennies a month. What gets me is that job seekers allowance is nearly the same amount as SSP. I know that there are genuine people on job seekers allowance, but my experience of it is that there are a lot of scroungers out there! When we moved to Norfolk I searched for a job straight away and on going to the Job Centre and applying for it, I overhearing a conversation between a “job seeker” and a “helper”. It went something like helper: “well have you applied for any jobs since I last saw you” which the response was “erm, well…. erm…. well I think I saw one and thought about applying but didn’t” helper:”well at least you are looking”. It made me mad as the government are giving this person money so they can search for the job, and are obviously not interested in getting one and are quite happy just taking the money! Just makes me think that I work my arse off, pay taxes etc etc and I am getting similar help from the government as someone that obviously doesn’t give a…..

On a better note, I am heading off the the National Hereditary Breast Cancer Helpline charity ball on Friday, along with training on the Saturday and Sunday. They now have sub region groups set up which cover the whole of the UK and I am helping out on the East Anglia region sub group. I am really looking forward to it!

Thursday 25th August – 2 months on

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I still really ache today, but the painkillers seem to be taking the edge off, which can only be a good thing!

This time 2 months ago, I was in hospital having my operation. Two months on, even with the fluid build up, haematoma and infection, I wouldn’t change my decision for the world. I still find it tough that I am not 100% and cant do the amount of physical activity that I was used to before, but I just keep telling myself I’ll get there soon. I do have really down days, where I want to be fully recovered just so I can get on and do the jobs that I want to do. The kind of jobs that I wish I had an excuse to get out of before like weeding, sorting the paddock out, housework…

Wednesday 24th August – Ouch

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Myself and Mark head off to the hospital as today I am being evened up! My left boob is bigger as it has been expanded more times than the left due to the problems I have had. Quite a bit was put into the right one to catch up and my boob seems to be sitting very high and a few inches from my chin! I’ve been told that it should drop a bit, but due to the haematoma/ scar tissue etc it could sit higher till my exchange. I need to put some oil on and massage it to see if that will help, but have been told to stop if it irritates the skin at all. Lets see how it goes!

Thursday 28th July – The other side

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After a few days on the drip I was discharged and things seem to be less red and hot. I guess we just have to keep fingers crossed that this bad stage is over and that we caught it in time for the expander to stay in.

24th – 27th July – Bad times

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Turns out that I have an infection in my right breast so have been admitted to hospital and been put on an IV antibiotic. Hopefully it has been caught in time as I really don’t want the infection to reach the implant and have it removed.

I hadn’t felt well for a day or two, but couldn’t quite pinpoint what it was. Then on Saturday night/ early hours of Sunday morning I was sick. This along with the right breast being a bit red and quite hot I called the hospital and they told me to come in. So Sunday I came in and they hooked me up straight away. Sunday early evening I heard a familiar voice and knew that it was my surgeon. She popped in to see how I was and to take a look. She told me that I had done the right thing and come in. Her saying that made me feel better as I’m not the kind of person who likes to kick up a fuss.

Wednesday 6th July – Negative – woo hoo!

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Another trip to the hospital for the dressings clinic. The nurse thinks that the right breast looks big so goes and grabs my surgeon to have a look. There is more fluid build up but am told that it wont be drained just yet and to keep a close eye on it and check for infection. My right breast is also heavily bruised and my surgeon tells me makes me laugh as she tells me “a nice range of colours, pity they’re on a breast!”

I received a phone call later on in the day from one of the breast care nurses who tells me that the tissue and lymph nodes that were sent off have all come back negative. Even though I was expecting that result there is always something at the back of your mind thinking “what if?”

I suppose with that result there will be many people out there thinking “What on earth have you had 2 healthy breasts removed for!”? Until you have been told about the risk you face and are in this position, you really don’t know how you react to it. You can run the scenario in your head a thousand times, but until you are here, it’s impossible.

Thing is, this journey isn’t an easy one. It is an emotional roller coaster. There is pain, sleepless nights and frustration. However, not once has it made me think “why did I do this?”.

You don’t come on a journey like this without a few tears falling.

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