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Me and Mr BRCA1

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Archive for the ‘My Diary 2010’ Category

Friday 17th December 2010 – New Start

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Well, I called my genetics councillor a few days ago and asked to be referred.

Yesterday I received a call back confirming that they had found a good surgeon there and suggested that I was referred to them. My appointment should be coming through in approximately 4-6 weeks – around my birthday! Even now with this small change, I can already feel things falling into place. I’m sure it was just a distance/ stress thing that was putting the pressure on and making things a little blurry. It’s amazing how much difference a small change makes to your outlook.

I am really looking forward to Christmas now. All of the shopping is done, just a bit of wrapping tomorrow – although things that I have ordered 3 weeks ago from China haven’t yet arrived, so fingers crossed they will be here. I am guessing that there won’t be a diary entry for a while – so let’s see how I feel next time I come back! Merry Christmas!

Friday 10th December 2010 – Looking ahead

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It is nearly a week since last entry and with an appointment in the distant future, I feel that I had been given a bit of space and thinking time. One thing that has become apparent was that the journey to Addenbrookes was becoming a bit of a nightmare. Mark was no longer working in Royston so it wasn’t a ‘via’ route anymore. Mark and I have discussed the option of asking to be transferred to Norwich Hospital. Although it may mean starting all over with another surgeon, it is on the same route to Marks work, and is slightly closer (and an easier journey) which now makes more sense to have it there. Also, with my mind still not made up on the procedure to go with, I can get another opinion on what they feel as well!

So next week, I will call my genetics councillor and ask her if she can get us referred to Norwich Hospital. For now, I have my parents coming down this weekend and have to pop to the supermarket, get the horses mucked out and sorted, dogs fed, housework done, 3 beds made and dinner ready for us all in the space of about 2 hours!

I can feel that my motivation and zest for life returning – I even had my hair cut into a new funky style. Plus with Christmas around the corner, it is a time to be happy! I don’t want to be called a Humbug!

Monday 6th December 2010 – A little while later…

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It has been a while since I’ve written. To be honest I think it all got a bit too much and I wanted to have a break from it all – even though I have had another appointment since my last entry. I think with so many appointments in a short space of time, along with other family/ personal issues which included mice in the loft(!) it has worn me down quite a bit. I’m not the kind of person that this can normally happen to. I usually just put a grin on my face and carry on as if nothing is wrong.

I have lost a lot of motivation and ‘get up and get on with it’ attitude that I used to have. This process is a hard one, and I don’t think that at the beginning of the process I thought it would be. With the help of friends and family I know I am doing the right thing and will get there in the end!

As for my last couple of appointments, when I returned to the surgeon to let him know we had chosen the implant only option, he asked us to go with him so we could look at some pictures of his showing the difference between implant only and LD flap options. When the pictures appeared of both procedures, neither looked particularly great in the pictures and I felt really deflated. Neither looked like the ones I had seen doing research on the internet and reading books. He told us that these examples were neither good nor bad, just ones that he could pull up quickly. He showed us why he felt that the LD flap was a better option and advised us to go with this option – however if we did want to go with the implant only option, then he would achieve the best he could with that option.

I had in my own mind, from doing my own research and speaking to other women who have had the process done, made the decision to have the implant only option. However now I was confused and felt as though I was being given a procedure that I wasn’t 100% happy with. So we headed home with this new information and tried to digest it. Again the traffic was chaos and took us ages to get home – so once again take away was needed!

Mark and I discussed at length over about a week on what route to take next. Even going over the ground of doing nothing and having the MRI scan every year, but quickly came to the conclusion that this really wasn’t an option given the history in our family.

I feel that during my researching on the internet and looking at others pictures etc, that implant only gives the nicest looking breasts for my age and shape – not necessarily the more natural looking – but nicer in my eyes and Marks eyes too. But going with what the surgeon had shown us, we became stuck!

On meeting the surgeon again 2 weeks later and airing these thoughts, we decided to make an appointment in 3 months time. This way it would give us a chance to really sit down and think of our options.

Friday 15th October 2010 – ‘In Bra’ breasts

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I made sure that I put my nice sensible underwear on as I didn’t want to get caught out like last time. The guys at work had been making fun out of the fact that I had planned to do this and suggested instead that I wear a peep hole bra and crotchless knickers! Needless to say I didn’t go with their suggestion and just went with my nice black set I had that were used for such occasions!

It was quite a walk from the main entrance of the hospital to Clinic 7 where my appointment was. Once we reached Clinic 7 I thought we had the wrong place as it was deadly quiet. I asked behind reception and was advised that we should wait in room B which was just down the corridor. Once there, I pulled out my BRCA folder, and checked my appointment letter to make sure that I had the right date and time. I was right, time and date, and even though we were there about 20 minutes early, I expected at least 1 other person to be there! About five minutes to 2 around 5 other people walked through the door and took a seat – I had a guess that the appointments must run from 2pm. Within no time at all we were called and lead to a side room. We were asked to take a seat and told that the surgeon would be with us shortly.

About 20 minutes later the same lady that had shown us to the room came in and sat down. She explained that she was one of the surgeons ‘helpers’ and talked to us about the various procedures that were available. After this was discussed and a few “what are you allergic to?” questions, she went off to see where the surgeon was. After about 20 minutes he appeared, along with the lady, and it came to that moment – getting my boobs out!

He went through and discussed the 3 options that were available. He started with the implant only option and held up implant cut outs to gauge the size which I would need if I were to go ahead with the implant option. We then moved onto the LD flap option followed by the tummy option. He asked me to lay down and asked if he could touch my belly or if I was in any pain. He then asked me to raise my legs about 6 inches and he took hold of my belly to see if there was enough there to work with. He advised that he wouldn’t go ahead with this one as there was only enough there for small boobs – about an A cup, and advised against this due to my body shape. After a little more discussion on all the options, he advised that we should go away and think about which option we wanted.

We headed home and even though I didn’t do anything, I felt exhausted. It has really surprised me how much energy this takes out of you! The traffic was a nightmare heading back and as we neared home we decided that take away was in order!

Monday 27th September 2010 – 2 hours late!

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After having the weekend away in London at a friend’s wedding, my mind was once again allowed to wander to the thought of the MRI results. It had been a great break away, just what I needed to occupy my mind of anything other than the results.

But now we were once again we headed off to Addenbrookes, although this time I felt really nervous. Nervous to the point that the thought of eating made me feel sick. I had managed to eat a slice of toast before we left, but now it seemed to sit in my throat, ready to reappear at any second. I think it was a mixture of questions going around my head if the result was positive, including;
When could I have the operation?
What treatment would I be given?
Would this affect our chances on having children?
Would I lose my hair?
Would I lose the fight?

“You alright hun?” Mark said. I nodded but didn’t say anything. “You know you will always have me… no matter what the result is”
“I love you” I said as I looked over and smiled.
“I love you too hun” he replied.
Even though I felt comforted, I still felt a little sad due to a big case of the ‘what ifs’, and looked out of the window again.

We arrived 10 minutes before our appointment and took a seat in the waiting area. A loud voice made me turn around. “Sorry for the delay everyone. There just aren’t enough rooms for everyone here today which is why we have the delay. If you can just bear with us and we will get to you as soon as possible” the nurse bellowed across the room to everyone. Mark and I looked at each other and settled into our seats “Should have brought my book” Mark said as he slouched in his chair and crossed his arms.
“Why don’t you get your phone out? Pass the time” I suggested. He reached into his pocket and proceeded to ‘play’ with his phone. 10 minutes later he put it back in his pocket with a big sigh. “What’s wrong now?” I asked. “My phone’s flat!” grumbled Mark as though he was some fed up teenager. I reached in my bag and pulled my phone out and pointed it in his direction. “There… now stop huffing”

An hour past our appointment time I decided to send mum a text message. I didn’t want her to think I hadn’t contacted her as it was bad news! Another half an hour passed and Mark was starting to get fidgety. “This is ridiculous. No one has told us what’s going on or how long it will be” he said as he adjusted himself in his chair.
“Please Mark, don’t be like that just now” I said. I wasn’t in the right frame of mind for comments like that, even if they were true!
Exactly 2 hours after our appointment time, I was called by the surgeon. We followed him to one of the rooms and we all sat down. He introduced himself and continued “you had an MRI scan last Thursday, which the results have all come back normal”. There is was, all that weight had been lifted off my shoulders in an instant and I knew that I would once again be able to sleep! I missed what he said for the next minute or two as I was just so happy about the news it was only when he said “have you had a breast examination?” I snapped back into the real world.
“No not yet” I replied. He suggested that an exam was done, even though the MRI was clear and I could feel myself blushing. I wasn’t blushing as I had to have my boobs examined, reason I was blushing is that I never gave much thought to the bra I put on in the morning! Silly I know, but I had been so well organised with my nice new sensible knickers for the MRI scan, I didn’t think for a minute that I may have a breast examination. I sheepily took one of my many layers off and tried to remember what bra I put on, and then there it was. It wasn’t bad, but it wasn’t great. Standard bra really, white in colour. Not bright white as though just purchased, just a bit dull. Oh rubbish! Mark didn’t seem to understand my dilemma when I told him walking back to the car park something. He said something like “isn’t a bra a bra?” which I told him it wasn’t and am sure that other women reading this can understand where I am coming from!!! Men!?

After both breasts and armpits were checked he said that everything felt fine. Phew! We spoke for a few more minutes while I put my tops back on, then he apologise for the delay and made his goodbyes.

After he had gone we spoke to the nurse about our plans for the future, including having my ovaries removed. She commented “it seems like a very sensible plan you have” and it made me smile. We thanked the nurse and made our way back to the car park.

I was so happy with the result and couldn’t stop smiling. I even skipped a little on the way back! “Right, let’s stop at the pub and order a big lunch and a pudding as a celebration!” I said looking at Mark with a glint in my eye. “Ok” he replied “Where do you want to go?”

We pulled up outside the Hungry Horse which was just down the road and I scanned the menu – big plate chicken New Yorker sounded perfect, with garlic bread, and ice cream for pudding. It was all polished off, with the exception of the peas, but I knew that I had over done it on the eating front. I had that horrible feeling where dinner and pudding was stuck in my throat, as if there wasn’t any room below for it to squeeze into. But I didn’t care. For a while at least I was free from the stress of it all and I wanted to savour every second!

Thursday 23rd September 2010 – Nail Varnish!?

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To be honest I haven’t been sleeping much. I had been worrying in case my MRI scan was going to find something there. Not so much as to what would happen to me, but more so that if they did find something, it would probably mean that I would have to have the mastectomy in the midst of winter and I would be ‘out of action’ with Mark having the hold the fort with the horses, dogs and house! Horses need a lot of unconditional love during the winter as its really bloody hard when you are in the dark, wet, and freezing cold! Only the brave, or mad, can survive it! After telling a few people how I felt, every single person told me the same which was something along the lines of “you are silly, stop worrying about everyone else and start thinking of yourself”.

So here it was. The day had arrived and as we headed off the Addenbrookes, I had a strange feeling inside. Again quietly looking out of the window of the car, Mark reached across and squeezed my leg. “You ok Hun?”
“Yeah, fine” I replied, although truthfully I didn’t know how I felt. Parking up and heading across to the main entrance we made our way, after a few detours, to the MRIS department. After reporting to reception, we took a seat and waited for our turn.
Looking around at the blue chairs and cream wall my mind wandered again to what the results might be on Monday.
What seemed like hours later, my name was called and we were led to the ‘changing rooms’. Here I went through a questionnaire and was asked to remove all clothing from my top half, along with jewellery. Mark was asked the same questions as he was going to be with me through the scan.
Mark then had to stay behind as I was led through to the ‘Prep Room’ where I was given a cannular to the inside of my right elbow. Looking the other way I hardly felt it being put it, but felt a stinging sensation as it sat there. The nurse told me that she would get Mark and that we had about a 15 minute wait till we would be seen.

Mark walked into the room a few minutes later and pulled a face. “What’s that for?” I asked.
“Don’t do needles!” he replied as he sat down. “Did it hurt?”
“Nope, stings a little now though” I said looking down at it. We talked a bit about a few things and were soon called into the MRI room. The nurse explained the whole procedure, explaining that there would be a number of scans, some of a minute long up to the last one which was 8 minutes long. It was this one that they would inject the contrast liquid. She explained that I may feel a cold sensation in my arm, and maybe a metallic taste in my mouth. I was asked to remove my robe and she placed what looked like a cod liver oil tablet on my left boob. This was to distinguish in the scans which boob was which!

I then had to climb onto the table and rest on all fours. Slowly walking my way down the table my boobs would rest into 2 plastic box containers, with my arms above my head. Laying on my front my head rested in a ‘horse shoe” cushion, similar to a massage table. The line was then connected to the cannular, some ear plugs were placed in my ears and the bed was raised to the correct height. I was then given the “emergency only” button and was told that only in an emergency should the button be pressed. If the emergency button was pressed then all the scans up to that point are ruined and you have to rebook another MRI scan. I was determined that I wasn’t going to press it!!!

Only being able to see about 10cm in front of my nose, I felt the table move and assumed that I was now going backwards entering the scanner. The light changed from a yellow glow to a bright white one, and once the table stopped, I felt Marks hand on mine.

The woman came over on the speaker system telling me that they were now going to start the scanning procedure and that various knocks, bangs and beeps would be heard. They also flushed some sterile fluid through the cannular in order to make sure that it was working correctly. I didn’t feel this happen. The scanning began and as I lay there, I found myself comparing the different sounds to computer games that I played in the 80’s. One sounded like Chuckie Egg as he collects the corn. Another sounded like Fruit Machine when you hit the jackpot and were collecting the coins, and the last one sounded like the ‘old school’ Mario when he jumped. The knocking sounds just sounded like someone was hammering against the wall. None if this was in any way scary at all, in fact I was quite surprised by how ‘easy’ it all was.

Before I knew it, the nurse came over and said “Ok now Charlene, we are about to start the last scan. This one is 8 minutes and this is where we inject the contrast liquid”. My heart immediately thundered in my chest. I didn’t want the fluid to make my arm all cold. Worried that my thumping heart may destroy the scans, I told myself to grow up and started to calm myself down. I didn’t even realise that the contrast liquid had gone in until I had a funny taste in my mouth, and I assumed that it must be going in. It tasted like someone had put nail varnish in my mouth, but it was gone shortly after. “Excellent Charlene, all finished. We’ll just bring you out now” With that the table began to move forwards. Mark was fantastic, holding and stroking my hand throughout the whole process. I think that is what helped me through the scan, knowing he was there. Even though he wasn’t doing much, it made me feel at ease somehow.

I jumped off the bed and took the ‘cod liver oil tablet’ off my boob. Making our way back to the changing room I pulled Mark back and gave him a kiss. “Thanks hun”

I got dressed and we headed off back to the car park and home. Now all we had to do was wait 4 days for the result, easy…

Not really!

Wednesday 1st September 2010 – More Time Off

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After I had checked that the MRI scan appointment would fall between the specified days, I called the breast cancer nurse to advise them that I had a confirmed appointment through. The breast cancer nurse had told me in advance that the scan normally happens on a Thursday, with the results the following Monday. An appointment for the results was made for Monday 27th September and I called Mark to let him know. “No problem hun, I’ll get the time off” He really had been a rock through this. Nothing has seemed to faze him in the slightest.

That night whilst in bed, I turned on my side to face Mark and said “I’m going to tell you something, but you will probably think that I am being really stupid and silly.
“What would that be?” He placed his book down on his chest.
“I think that they might find something on the scan when I have it done”
“You’re right, you are stupid and silly!” he said as he turned and looked at me.
“Thing is… I have got the same feeling now as I had when I ‘knew’ I was going to have the BRCA1 gene, it’s hard to explain” I looked at Mark and he stared right back at me.
“Well, let’s cross that bridge if we come to it. No point worrying about it now is there?” With that he kissed me on the head “Turn the light off?” he asked, I nodded. He kissed me again then turned off the bedside lamp.

Saturday 28th August 2010 – The Postman

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As it was the bank holiday weekend, my family had decided to descend on us to help finish the kitchen we had repainted. Mum, dad and my niece Megan were arriving about 10:20 that morning, my sister about 1:30 and brother in law and nephew were going to arrive on the Sunday. Once I had picked the first ‘lot’ up from the station we headed home and my parents did the usual “This road is so bad” discussion! We sat down and had a little ‘catch up chat’. Taking a sip of my cuppa, mum asked if I had heard anything from the hospital yet. I told her that perhaps I had got things mixed up and it was 18 weeks for the MRI appointment to come through. With that the postman came. I got up from the sofa, not really wanting to as I was more than happy snuggled up with my cuppa, and made my way to the front door.

Bloody hell – there it was. White envelope, Addenbrookes printed on the front. “I don’t bloody believe it! I bet this is the appointment!” I said waving the envelope as I walked back into the front room. I opened it up. Sure enough it was my MRI scan appointment, Thursday 23rd September. That was only 2 days before my friend’s wedding, so a busy few days were going to be had! Reading through the information that had been sent through, it advised that the scan had to be between the 6th and 16th day of your menstrual cycle, so I needed to check that out. Once I had read through it I handed it to mum as I knew that she would be keen to read through it all. Dad was quiet throughout, not really giving much away. Picking up on this vibe, I moved the conversation along!

Monday 23rd August 2010 – Waiting

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Still waiting.

Still waiting for those 2 appointments to come through. Just feeling a little annoyed that they haven’t come through yet, even though it was only just over a week since having the appointment at the breast unit. Perhaps I am being too impatient, wanting to get the MRI scan done, to see if there is in fact anything there, or if I can be given the all clear. Think maybe that’s why it is playing on my mind. I want to have this MRI scan done, but at the same time I am ‘cautious’ as to what it might mean if they do find something.

Wednesday 18th August 2010 – Brighter Day

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I am feeling a million times better about the night before. I was now totally happy about the decision to remove my nipples at the same time as my breasts. It makes total sense and I’m kind of thinking to myself “you stupid girl” for wanting to keep them before. Looking at the internet at nipple reconstruction and tattooing, I realise that some really good results can be achieved. I may even end up with better nipples than I have at the moment!

Now I just have to hope that the surgeon agrees with the removal of them!

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