Had a very enjoyable evening with our friends Mo and Pete at our favourite Italian restaurant.  The chef Dagastino cooked me a wonderful vegetarian nocchi dish which was scrumptios and the other 3 had some poor dead fish.

This is Mo and Pete the best of friends anyone could have. It was Mo who took me to the Queen Elizabeth hospital every day and back  for my radiotherapy appointments.

   

A couple of days ago I had e-mails from some of my wonderful BRCA sisters asking if I'd write a letter to the Oprah Winfrey show about our story but it had to be no more than 2000 characters. I scribbled a few pages while I was at work but when I put it on the computer the next day it was far too long so I had to rewrite it several times which took hours and I was knackered afterwards! Anyway it's gone now. I hope we can see it in the UK if it gets on. It's a great way of spreading the word. We could always try and put it on a UK show too.


Had a really strange dream last night I dreamed my Dad was still alive and I went round to his house. He was at work but my brother was at home. I was hungry so I looked in the fridge and found some eggs and some scotch eggs which I put on a plate and was horrified when I put it in my mouth and realised it was a meat one! ( They do do veggie ones) I was off sick because I'd faalen over again and I suddenly realised I hadn't told the SCHOOL!!!! I was off sick! So I frantically looked in the pfone book and then thought " hang on a minute how come I'm still at school I'm far too old and they wouldn't remember me! I then went out to visit one to one of the neighbours who decided to take a photo of me while the phone rang and another member of the family put a piece of paper in to my hand and said " that's your surgery date. It's tomorrow!" Then I was on my way to the hospital!

It just shows you what's on my mind all the time. It's like a huge weight on top of my head.

I have just messaged someone on facebook who may be a cousin on my Dad's side. He has the right name in the right area but I know it's a long shot because it's such a common name-Smith!! Oh well here's hoping!!

I'm really trying to find out which side of the family our BRCA2 mutation comes from. As both are parents are dead and cousins on Mum's side don't seem to be interested in being tested it is very difficult. We have found our mutation in a couple of scientific papers from around the Cambridge area and Surrey. It is an unusual mutation so I suspect they are related and we lost touch with my Dad's side years ago. My Dad was a wonderful person but was no good keeping in touch!!! Bless him.   

Well here I am again. It's my Friday off work and I was supposed to be going to the BDTA Dental Showcase at the NEC but I fell over an uneven stopcock cover in the street on Wednesday evening smashed a tooth and my face is a mess. I look like I've been in the ring with Mike Tyson! I was devastated about my tooth as it was also loose. I was off on Thursday too as I had an appointment at City Hospital with the surgeon for my first annual exam and mammo results so I went into work in the morning and one of my bosses sorted it. I have cracked the root. Shedid a root canal treatment on it and splinted it but said it NEEDS TO COME OUT SHE SAID!!!!!!!!!!!!!! Arrrgggggghhhhhhh!!!!!!!!!!!!!!!!!!!! I said I cant have it extracted as I'm on bisphosphonates and I don't want necrosis thank you. She said to ask the surgeon about reducing the dose. But when Iasked at the hospital they said for her to phone the oncologists secretary herself!


My boss says I should have a Maryland bridge and she gave me a prescription for amoxycillin in case it's needed

I felt extremely self concious of my face and kept it covered with a tissuewhile out much to the annoyance of Gray.


As far as the hospital appointment, it went well.They took me in about an hour late as usual though! I first went to the breast clinic as I thought it was in there but it was in oncology.


I apologised to the reception staff for the state of my face and how I did it. I was so embarrased sitting in the waiting room with the other patients at the breast clinic day in oncology.


The nurse finally called me into the room and she asked if I wanted my husband to go in with me and I said yes. Of course I apologised about my face again! " Are you going to be examined today?"and "What are you here for today and how far on are you with your treatment?


I explained I was 1 year hence and that I was BRCA2 positive and had come for my annual mammo results aswell. The nurse didn't know what I was on about so I wxplained it ran in the family! She left me a gown which I was aked to don after stripping to the waist! After which we waited about 10 minutes and one of the surgeons team came in and explained she had had a letter from the genetic clinic sayinh I was BRCA2 and that I should have annual mammos and she would arrange for me to have my next one in a years time.


She examined my breasts and I asked her to show me how to do it as I had never been show so she described what she was doing and got me to stand in front of the mirror so she could check I was doing it correctly which was great because I'd been wanting to be shown for ages. I thought BRCA ladies were supposed to be show as a matter of course.


Afterwards she told me there were no lumps found and my mammmo was clear. Phew! So it's official now. She also mentioned that the genetics clinic had also discussed having a double mastectomy and that if I wanted it they were happy to do it for me. She could refer me to the plastic surgeon if I was ready but I said I didn't think I could face it at the moment. She said she could understand as I had only recently got over the last surgery but whan and I'm ready to think about it (and if) I could phone and they would arrange an appointment with him for me.


Since I got home I haven't dared to go out of the house with my disfigured face I just hope it heals quickly and doesn't scar. We were supposed to be going out tonight and to morrow to Leicester for a Tigers match but I can't see that happening bar a miracle!


Tigers beat South Africa last Friday. South Africa are the world chamions so does that mean Tigers are now!

It was an evening match so we booked into the Premiere Travel Inn for the night and met our friend Sarah and her friends in the Last Whistle which is the new huge bar in the wonderful new stand where we sit. A group of Tiger's fans have formed their own band and play in there. We had a very enjoyable night. There were even some Sprinbok fans in there enjoying themselves!

   


This is our friend Sarah in the Whistle Stop that night! Looking very happy!

This was taken a couple of days before my Birthday, it was my pre birthday celebration which my n laws put on for me. They live in a village in the middle of nowhere in Lincolnshire and we went off to visit them for a couple of days. This was taken with Gray's Dad. They put on a great evening for me with party hat, blowing bubbles and an Indian meal cooked by Andy my wonderful brother in law who is a great chef.



After we left Goxhill we travelled to York for the rest of the week. We travelled by train from Doncaster where Marion and Andy  (brother and sister in law) drove us to to catch it. The journey was a nightmare. 10 coaches and all of them packed. We had to stand all the way with me holding on tight to a handrail as the train was shaking about all the way. I had visions of being thrown down the train. Needless to say we decided to book first class tickets for the train back to Brum! They only cost £10 extra!

York was packed with kids and their parents as it was half term. Unfortunately my Mum gave birth to me in the half term period. It was great as a kid but not so good now!! WE managed to get round the huge queues for everything by going late afternoon. There is a lot of history in York and it's supposed to be the most haunted city in the country so of course we went on one of the ghost walks which was great fun. That was packed too and they don't even advertise that one.We were recommended it by a friend. The Jorvik centre was very interesting with information about the Vikings and the archeological findings from there. It was laid out with waxworks, sounds and even smells including a cess pit!! The Castle museum had different displays of rooms through the decades which we all enjoyed and the National Railway museum was amazing and free too. I'd happily paid £10 to get in there.


The picture above was taken on my Birthday. As we were staying in a hotel Gray got me some cup cakes instead of a birthday cake and put a candle on one! They were from M&S and were delicious!

This was me in front of the Pullman train which we saw my Grandad off in in about 1957 on his way to catch a boat. Look how huge it is!!! I look even smaller next to it!!!

Sorry folks. I've just spent about an hour updating this blog and I've just lost it all!! I've run out of time now and haven't got the patience to redo it at the moment but I will add that my brother has had his results and he also has the samr BRCA2 mutation as I have. His councilor has told him he will have to wait 20 weeks for his prostate screening!! He is upset about this and is covinced he nust have cancer already! Understandably he has taken it almost as bad as I have.

We still haven't managed to find which side of the family the mutation is on but we found a record of it in a scientific paper from Cambridge which hopefully we can find out more through my councilor.

Anyway I have a lot more to rewrite and picture to re put on and I don't want to rush it as it's getting late so I'll try and get on again in the next few days.

This is Emma the wonderful Dental Nurse who works with me. I promised her I would put her picture on here. She had a cold at the time hence the mask as she didn't want to give it to me bless her!

Nearly in October now and I'm typing left handed due to the RSI so I apologise for any mistakes.

My brother goes for his first counciling appointment tomorrow and he has decided already he wants to be tested but he has been told they don't usually take it at the first appointment but he's determined.

Had a bad day yesterday everything is getting to me again. Worrying about the cancer coming back the BRCA thing, stress at work due to being short staffed with no real help and now RSI! Have mostly tried to keep them all at the back of my mind but in the pub last night Gray snapped at me while I was tryng to keep a fly (one of the many around everywhere at the moment!) away from our beer and he lent on the table and my beer got knocked all over me and I just burst into tears! I seem to be on the edge most of the time!


It's breast cancer awareness month in October and Jordan at work is doing a sponsered pyjama thing round Tescos and some pubs! I said I'd consider joining them but I'm not so sure now I may just sponser her. It sounds great fun. 

Well here we are well into September and we are finally getting some summer weather and it's stopped raining!!
I was going to phone the genetics clinic to ask about the tamoxifen but I got distracted by my wrist which I injured during removing very tenacious calculus at work which I seem to be getting a lot of at the moment. I put up with it for about 8 days before phoning the GP's for an appointment. I was informed they don't book yo in with the GP but a triage nurse first! This was new to me I though they just did that at A & E! But they have nurse practitioners now don't they?


Anyway I went along for my appointment last Wednesday and saw a lovely chatty nurse called Banita.I ahd to wait about 30 minute in the waiting room and as usual when I had nothing else to do my brain brings the gene and breast cancer worry up again! The computerised display that calls the patients in was broken so the were having to go out to the waiting room to call their patient in as we do at work. I walked in after greeting Banita and explained I was a dental hygienist and that I'd injured my wrist and how I'm now finding my job difficult to do. ( I also suspect it's also to do with the fact I,m not suppose to carry heavy weights etc with my left hand due to the lymph node removal). The first thing she said was that she'd been waiting to see me to ask about her teeth! So we had a dental discussion and I advised her to ask her dentist about tepe brushes!  Getting back to my wrist she had a look at it and said she didn't think I'd broken it which is what I was worried about due to the osteoporosis but that it was tendonitis caused by overuse. I asked if it was RSI and she said yes it was caused by that. I told her how it's quite common in my job and I'd been lucky not to get it earlier! She advised Ibuprofen and co-codamol but I said I don't like taking painkillers and I'm on enough tablets as it is. So she said she could give me Ibuprofen gel or cream instead and gave me prescription ant told me to go back in 2 weeks if no better and she would refer me. I may have a trapped nerve and may need surgery!!


I took the prescription into Lloyds on the way home and they told me to go back in 15 minutes to pick it up so I did some shopping and went back but they said they'd got none in stock and could I go back after 1630?
This was all done on my day off  I might add.
Arranged to meet Gray in town on his way home from work for a meal. Had a shower and washed my hair preparing to go out but had a hot flush while drying my hair which put me back as I was covered in sweat. Yes it seems after all that bragging about not getting them it looks like now they've started. My friend Mo says she was on tamoxifen fopr a year before hers started. Needless to say I was ready too late to met Gray in town so I met him at the restaurant instead which is just round a  couple of corners. I was also too late to pick up my prescription as that branch of Lloyds shuts at 1730 so that would have to wait till Saturday. But I 'd been into another branch and bought some Nurofen gel over the counter so I used that instead until Saturday. After 4 days of use the puffiness has gone down today and my wrist is feeling improved but now my palm is painful and my fingers stiff.

This was the Bees against Bristol art Sharmons Park Road Solihull.

Tigers were playing away today and we decided to go watch the Bees play Bristol. It seemed strange to see Bristol ther after their demotion from the premiership at the end of last season. They didn't play very well cosidering and won by a small margin. Bees played much better than I'd seen them play before. We hadn't seen them play for about 2 years. It was refreshing to see quite a big crowd there but then  Bristol took quite a few people with them there was a huge queue at the bar! The Bristol fans must have felt like they were slumming it a bit!!! The game was very enjoyable to watch and the weather was gorgeous and I even got sunburned. I hadn't though of taking sunscreen or sunglasses in September. So now there's melanoma to woory about being BRCA2!

Have been reading worrying reports about tamoxifen causing secondary non oestrogen receptive tumours. Have been on the breast cancer care site and read their forums and advice. The net is buzzing with it. My breast cancer facebook friends are also understandably worried. Apparantly tamoxifen they say prevents a second tumour by 60% it's just that if you do get one it's less likely to be oestrogen receptive and so harder to treat. Should we be worried?  Even more to be worried about. Sometimes I feel like my head is going to explode with it all!!

I have also had a setback on my decision making of surgery due to yet another person having problems (permanent ones. Problems that is!).

http://beingcancer.net/

Last week my brother phoned the genetics clinic to make an appointment for his blood test. Apparantly there is a month's waiting list. He asked for a Wednesday before October so that I could go with him. I have Wednesday's off until October when I then have Fridays off which is what I wanted to do in the first place.

Last week at work was very hard going especially Thursday and Friday. I went with Gray for a balti at Varsha's Friday evening after work. But I had to get up at 0400 to vomit. I'm sure it wasn't the foos as we have eaten there loads of times and the food is good there. In the morning I felt exhausted as I did most of the day so we stayed at home. Hopefully I'll have the energy tomorrow.

I'm on amoxicillin at the moment as I have an apical abcess on a tooth that was RCT'd by Shobhna before our holiday about a month ago. She says I cracked the root when I fell over. A fes years ago I tripped over a broken paving stone and damaged 2 of my teeth. Perhaps I should have sued the council!

Had a great Friday night. Went for a Morrocan meal in Mosley at "La Fibule" with our friends Mo and Pete and Jill and John. Fantastic food and fantastic company. Jill and John are such a laugh!

Mo had the results of her blood test and her Thyroid was normal. So all her problems must be caused by the tamoxifen. I've obviously been lucky.

Visit BRCA Umbrella - The BRCA Gene and You

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Visit BRCA Umbrella - The BRCA Gene and You

Well, went to see he onc's senior reg on Wednesday. What a nice man and his nurse too. Showed him my lump on my wrist and explained how worried about it I was as it was on the same side I had the BC. He confirmed it is a ganglion! Oh the releif!!!!! Ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh!
He said it should go by itself in a few months or so. I told them I had had visions of going there for chemo! He laughed and the nurse Maggie said "bless!"
my next appointment is with the surgeon in November. Perhaps I may have made my decision about having a double mastectomy by then but I doubt it.
If the lump had been bad news I would have wanted it definately very soon.
I am worried about the weight I've put on since going on tamoxifen last November. I was slim at a size 10 before and now I am onto a size 14!!! I am told it will drop off after coming off in 5 years. I'm getting a bit fed up of buying bigger clothes!! The night calf cramps are beginning to get to me too.
However, the nurse said I could go on Arimidex instead if I asked Doc . However that also has side effects as has any treatment or drugs which includes joint pain. I think I'd rather put up with what I've got.

Tomorrow we a have our new vacuum cleaner!

I'm writing this at work in between removing tons of plaque, calculus and tobacco staining from patients teeth! Having a few DNA'S. I wonder if it's due to the swine flu and people are frightened to go places? Some of Gray's colleagues are off with it. We went to our local balti house last night and we were the only people there! They reckoned it was quiet because people were frightened of picking up swine flu and because of the summer holidays.

Had a fright last night while while using my tepe brushes, I found a lump on my wrist on the side I had the breast cancer. It is very hard like bone. I don't know whether it's a ganglion but I read on the net this morning that they are normally soft.

Didn't know whether to phone my GP, the breast care nurse or the oncologists secretary. Phone my good friend Mo for the breast care nurses number as she has had breast cancer too. She agreed she wouldn't know which one to phone either in the same position.

I phoned the nurse first at the breast care unit but got the answer machine as I expected. So I then phoned Lynn the oncologist's secretary and she brought my appointment forward from 26th August to Wednesday 29th July which is next Wednesday. I'll just have to keep my fingers crossed 'till then.

Today would have been my Dad's birthday. He would have been 86 today. He died 24th March 2007 due to a fall outside his GP's after a routine blood test. There was a gap in the disabled access ramp where the shutter went into when it was closed . He fractured his hip and caught MRSA and pnemonia after a hip replacement in hospital. I miss him a lot.

Came back from a wonderful two weeks in Tenerife last Wednesday morning. We had a great holiday and I actually managed to mostly forget this BRCA thing.










This was our favourite evening pub!


More photos to follow as I have to go out in a bit!


However now I'm back this gene thing is back at the forefront of the picture again. Now I'm back at work patients are still asking abut my health and as I have been seeing some of them for over 20 years they are like old friends and want to know all about it!

Gray's boss has expressed a wish for BRCA patients to do a talk for the lab staff to exolain what it's like from a patient's point of view and Gray has put my name forward and I have been accepted to do a presentation. I've never done one in my life before and heaven knows how I'm going to go about it but Gray is going to help! Nothing's definate yet though. The nearest thing to doing that are oral hygiene talks to new Naval entrants and and in school classrooms!

Anyway must go now. Haven't been on here for a while due to lack of time but will try and make up for it!

TTFN!

On Thursday we had Gemmas leaving meal at the Shalimar in West Bromwich. We started off in the Globe pub for a drink first. It was an enjoyable evening but we were very tired the next day. We will miss Gemma.

The weather has turned awful. Rain, rain, rain. Have gone back into jumpers and wearing a jacket in the house. It's hard to believe a few days ago we were sweating!

We went into Solihull today and actually bought an HD TV eventually! It is being delivered in the week. Can't wait.

Good news. Had a letter from the surgeon Miss Hoar this morning saying she'd had a letter from the consultant geneticist Dr. Ong saying I should have yearly mammograms so she is arranging for me to have one in November two weeks before I see her. That's a relief I wont have to fight for it after all. So the Senior Reg. got it wrong.

Worked Monday and Tuesday, today off and working tomorrow and Friday. My first 4 day week for 8 months an doing two consecutive days has left me shattered today.

Need to have some energy for tomorrow as Gemma is leaving and we are going for a meal after work. Gemma will be greatly missed.

Had a fantastic weekend with my BRCA Umbrella sisters. Was worried I couldn't see them Saturaday night as had no transport to get to where they were staying at Berkeswell near Coventry but Lisa e mailed me to say she would pick me up which she did with Leigh-ann which was wonderful cos I got to spend an evening with them, Flo, Susanne and Carol. Got on so well with them and felt I was accepted as one of their family.

The whole weekend was planned for the race for life and Leigh-ann and Flo and the girls had done a wonderful job organising it all. We met at Birmingham International railway station exept for Michelle who drove to the NEC with her boyfreind and met us there.
It was a gorgeous day, the sun shone down and it was reckoned it was up to 25C. Even though I put factor 15 on I got sunburned on my arms even though I had factor 15 on them! Gray stayed on the perimiters and took photos and got a very red face and arms! We got quite emotional looking at other peoples back patches and it hit me that nearlu all the people there over 4,000 of us either had a relative or friend affected by the disease.

After the event we all exept for Michelle went to the Boat Inn by taxi for a pub lunch and a couple of pints which I found very enjoyable.
We got taxis (9 of us) back to Birmingham International Station where the girls got a train back to Berkeswell to the Lodge and we said our farewells. Iwa sad to see them go and very much look forward to seeing them again. They are all lovely people and it's a shame we won't see them 'till next year. It was a very memorable weekend.

At the station who should we meet but Lewis with Erika's daughter's mother in law who was also Swiss like Erika. Lewis looked his normal scruffy self with stains from his previous meal down his t-shirt! They had been to Cornwall. Erika came to meet him and Rita and we had a few words with them before catching the 900 back home.

Today I had my 6 monthly check up with Dr. Spooner's senior reg. He was a lovely man but they had not had the letter from the genetics clinic. I went in explaining I was BRCA + with a copy of my lab report and he looked a bit stunnes. I went in armed with a load of questions and he examined me and told me I would not be having surveillence according to the NICE guide lines with MRI'S or mammograms annually because of lack of funding!!!!!! I feel very angry and frustated about this. I amm being treated no differently than a normal person who has had breast cancer but I am at a much higher risk being BRCA +. The senior reg didn't seem happy about it either and he got me to book for another appointment in 3 months.

I chatted to Rian later on the BRCA Umbrella site and she couldn't believe it. Had a lot of support from her. She suggested I phone the breast care nurse tomorrow. I am thinking I could also contact Estelle.

Had an awesome weekend with my BRCA sisters from the BRCA Umbrella sit. Spent a smashing evening with them last night and we did the Race for Life at the NEC today.Went fo a pub lunch with them afterwards at The Boat Inn at Catherine de Barnes. The weather was glorious, the sun shone and it was dry and warm. Gray got sunburned!
It was great to meet my BRCA sisters and they made me feel like one of the family. I found the walk quite emotional looking at other people's back patches it made me think about my Mum and the fact that that nearly all those girls had either a relative or friend who had been affected by cancer. A few people noticed our T-shirts and asked us questions and we had many people mote our umbrella hats. It will be interesting to see how many people join the BRCA Umbrella site from there. We all found the walk tiring by the end and we went for a pub lunch at The Boat Inn at Catherine De Barnes . It was an extremely enjoyable weekend which I will never forget.

I look forward to the next time hoping I will be fit enough for it!

The Offending gene!

Had a great weekend. Went down to London to watch Tigers play in the Guinness Premiership final against London Irish at Twickenham. Tigers are the Champions 10-9.
The match didn't start until 1730 and the last train back from Euston was at 2130 so we'd booked into the Premier Inn at Euston for the night.









Our favorite pub in Twickers was absolutely packed out even more than usual and Gray couldn't get near the bar. There were at least 80000 spectators at the ground.

Working 3 days this week Monday, today and Friday. Had a difficult journey into work this morning as the fire alarm was going off at Snow Hill station so it had been evacuated and I had to get the bus. Found the usual bus stop I use under such circumstances had disappeared! The journey shattered me and I arrived at work late with little energy and even less at the end of the day.

Am only doing 2 days next week. It's Bank Holiday on Monday again so I'm working Tuesday instead. On Wednesday I am booked in with Dr. Spooner the oncologist at City Hospital for my 6 monthly check.

Started the marathon job of filling out the form for the Embrace study yesterday but not completed yet. Am going to have to phone the genetic counsillor to find out about the blood test and how to go about it.

Am doing 4 days at work the week after next but don't know if I'll have enough energy I just hope I will.

Rob sponsered me for The Race For Life last night which I was chuffed about. Many thanks Rob. Tariq also sponsered me today. Thanks Tariq.

Still haven't had my T-shirts arrive yet for the race I hope they haven't got lost in the post.

Went for my appointment with the Consultant Clinical Geneticist yesterday at 10.30. Had a long chat with her for about 1/1/2 hrS. She explained because I've already had breast cancer I am no longer 80% chance but 2% a year above the general population so 12%. She put my mind a little more calmer. She says she will write to DRr. Spooner the oncologist and Miss Hoar the surgeon to tell them about my BRCA status and arrange my yearly mammograms to take place at the breast unit at City hospital. She said I need not rush into prophylactic surgery, sugesting I might want to think about it next time I see Miss Hoar. She also said Miss Hoar may bring my appointment earlier because of BRCA 2.

Had our Sky box fitted today so we can watch the Heineken cup final in Edinburgh on the 23rd. Unable to go due to The Race For Life. Been promised over £200 now. Doing really well.

Looking forward to seeing Mo and Pete for a Chinese meal tonight. Usually see them on Fridays but it's my brother Greg's birthday tomorrow.

At work yesterday, told Helen and Owain about the BRCA thing. Big hug from Helen and a lot of sympatthy from both especially Owain. Got upset again and beginning to feel angry about it as it is getting embarrasing when you have patients to see. Have had to book tomorrow off as seeing the Consultant clinical geneticist so felt I had to tell the bosses.

My brain is in an absolute whirl. One side telling me to have surgery and the other saying no and the side saying no is winning!! I will probably loose my mind over this the way I'm going!

It was Helen's first day back at work after her honeymoon as Mrs. Sahota! They both very much enjoyed themselves for a week in Edinburgh. Well Helen is half jock!!

Gray took me for a balti to try to cheer me up.

Had a text on my mobile from the NHS to remind me about my appointment!

Can't wait to receive my BRCA Umbrella t-shirts. Also waiting for my great grandmother Lydia's death certificate. But of course being Tuesday we had no post delivered at all.

The progress of the building of the new stand at Welford Road.


Very succesful day yesterday. Tigers beat Bath in the semi final of the Guinness Premiership so we are off to Twickers. The match was played at the Walkers stadium as the rebuilding of the Next stand at Walford Road is still in progress.


However the day was marred by me having a bad day with my brain in conflict over the BRCA gene again. One side is telling me to have preventative surgery and the other is horrified at the thought and the horrified side is winning. How can I put my body through major surgery when I'm only just beginning to feel physically like my old self after cancer treatment. My body is saying "GIVE ME A BREAK!"

Managed to finally persuade Gray for us to have Sky fitted so we can watch the Heineken cup final in Edinburgh on the 24th. We ordered it by phone and it is being fitted on Thursday. I score their customer services extremely high. Spoke to a nice Irish man called Ryan.

Finally managed to do it. Here's the bride and groom having a conoodle on the dance floor! Ahhhhhh!

Had a bad day on Tuesday. Had had a nightmare about c coming back with secondarys. Very scary. Very frightened and depressed. Thank heaven for the brca umbrella web site where people understand and give fantastic support.

Wednesday was a better day as I wa at work. I told Gemma H. but got no sympathy. She didn't seem to understand and thought I should feel lucky to be alive and get on with my life! Perhaps I'm better keeping quiet!

Our Race for Life preparations are coming on niceley and our t-shirts are on the way thanks to Leigh-Ann.

Managed to burn my waist on the iron this afternoon. Ouch... Put some frozen carrots on it!!

My first Friday back at work for 7 months tomorrow. Fridays are always the busiest of the week and tomorrow is no exeption but at least it should be easier having a nurse and 20 minute patients.

Desperately trying to find my Dad's side of the family and after much searching the web I found a possible cousins address and telephone number so I am going to try writing a letter to him. Fingers crossed!

Anyway, I'm going to try putting more photos of Helen and Bills wedding.

Forget it I can't get it to work!

Had a smashing evening last night celebrating Helen and Bill's wedding. Saw some old friends and had a thoroughly good time which did me the world of good.



Before we left for the wedding I phoned the genetics department as I hadn't heard from them. I had a chat with my consillor (must find out how to spell that!) and she made an appointment for Wednesday 13th.
Didn't mention it at the wedding as didn't want to spoil it for Helen. Mentioned it to Emma and Claire before we went in and Claire was a bit miffed because she'd booked an appointment for Dave to see me on that day and I haven't met him yet. I had confided in them eralier in the week.

Beginning to feel anger now, why me? Is ther no one else in the family about from myself and possibly Mum and Auntie Peggy? It's funny I haven't found anyone else and I've been doing the family history for about 5 years now. I will have to keep looking.

Will have to tell them at work on Tuesday or Wednesday as Monday is bank holiday.

Arranged to see my brother for a meal this afternoon and we told him as now it is official. I had been worried about telling him what his reaction was. I first asked him if he wanted to know and of course he did. He was very sad but kept his decorum in the pub. Said he was very worried about me and when he is invited for the test he will take it up. Also that I must tell Pat.

In work yesterday. Only had a one day break between this time and was very tired today. Was supposed to be working tomorrow aswell but booked it off for Helen's wedding.

Emma texted me this morning to say there were some plants to pick up so I had to go into work to pick them up after taking a repeat prescription request into the GP'S.

Spent the evening getting ready for Helen's wedding and the overnight stay at the hotel.

My cousin Pat phoned this evening, I always enjoy a chat with her. I also phone my friend Mo for a chat. Both of which helped to cheer me up a bit.

Still no phone call from the hospital and it's been over a week now. Still feeling downhearted and angry the hospital seems to have left me to my own devices. Feel a bit isolated. Don't feel I can talk to my family and the rest of my friends until I have spoken to them.

Feeling quite depressed about my BRCA status.

Was in work all day yesterday and told Emma who kept hugging me, both of us in tears and Emma kept saying "It's just not fair". Emma told Claire and she hugged me too. Nobody else knows yet but I did tell young Emma who was working with me it was not good.

Gray took me for a meal at La Nonna's to cheer me up which it did a little but it's always in the back of my mind if not the front and the whole lot!

I'm also very worried about the swine flu and have started taking Manuka honey today!

It isn't very Spring like today and I have put the heating on as I was feeling nippy!

Still waiting for a phone call to book my councilling appointment, it's been a week now and I'm getting rather agitated.

What can I say! My mind's on one thing at the moment.
I found out yesterday I have a faulty BRCA2 gene and I am in shock.

Gray went into the Patrick room in the cancer centre at tyhe QE in his lunch break to ask about the support group there. (I've been asking him to go in for ages as he works just next door at the BWH. They said the support group is full of old ladies and they thought I was too young to be interested!

Having lunch with my brother the day after my first full day.

Tuesday21st April

It's the day after my first full day at work for six months and I slept right though till 1100 and could have slept longer but I'd arranged to meet my brother for lunch.
I'm also working all day on Thursday. Was supposed to be working three days next week Monday, Wednesday and Friday but booked Friday off as going to a friend at works wedding near Kidderminster. But doing three days the week after.

Decided it may be a good idea to have a relaxing day at home doing the ironing tomorrow!

Work is much more tolerable with the help of a nurse and they are now booking me 20 miute appointments instead of the manic 15 I had before I got ill.


Had to buy a new mobile phone on Saturday as my favourite pink Sony Ericsson completetley conked out and I couldn't find the receipt or the insurance.
Of course I found the receipt with the insurance on Sunday!!!

Have tried to download a photo onto here from my new phone without success! Don't know what I'm doing wrong. Never had any problem with my old phone.

Wednesday 15th April 2009

Well Easter's over now. Marion Andy and Hannah came on Good Friday and stayed until Easter Monday. We went to the Dr. Who exhibition at the Coventry Transport museum which was very enjoyable and took them out for a couple of meals ovr the weekend. On Saturday we went to Leicester to watch the Tigers beat Bath. Great game to watch. Well the second half was!


Marion and Hannah at the
Dr. Who exhibition.

I managed to get through the two half days at work last week with the help of Jordan who was nursing for me. Yesterday I started my second week of two half days. Tuesday instead of Monday because of the bank holiday. I had the help of Emma (the young'n!) and Gemma Hazel!

Gemma Sheppard is leaving and she will be greatly missed.

Booked a holiday to Tenerife today but have had trouble finding travel insurance due to my medical conditions. Those companies that will cover them most of them want to charge approx £200 for two weeks!

Tuesday 7th April

Woke up this morning absolutely exhausted after yesterday. Had to drag myself out of bed at about1100 hrs!!

Managed to get to the local shops and walk very slowly back! Also managed to do some sorting out ready for our visitors we're having at the weekend for Easter. Looking forward to seeing my sister in law,brother in law and niece.

We are going to Coventry transport museum on Saturday with them to see the Dr. Who exhibition which should be enjoyable
We have bought plenty of red wine for them as they gave booze up for lent so want to get pie eyed!!

Monday 6th March

Went in to work last Thursday to take Emma's birthday present in before she went off to Brighton. Had a lovely welcome from all and they said how they were looking forward to me coming back.
Went in for my first day back at work for 6 months today. Just working Monday and Thursday afternoons for the first two weeks to see how I go. Had Jordan nursing for me and what a great help she was. Owain was wonderful and asked Claire to cancel every 4th patient and even saw one of them himself. He said how stupid it was to have booked 15 minute patients in. I could not be expected to work like I was before I became ill. He said how some people had no empathy.
Managed to get through the afternoon well with the help I got in spite of being exhausted after the journey in!

Thursday 26th March

Found out last night that my cousin died in 2003 aged 45. I had written to an address I had found for him on my Uncles death certificate to find out about any relevant family illness for genetic purposes. I had no family connections with his side of the family for a long time. I wrote to him at the address I had found but with no avail. Then I found on the ancestry web site his death death index . This explains why I didn't get a reply. I put a return address on the back of the envelope but got nothing back.

After a week or so of looking and admiring the flowers sprouting in the garden I realised how I felt after my diagnosis. I felt how I would miss Spring and the sight of flowers and blossom on the trees with all their colours and beauty.

We went to our local Italian restaurant this evening and were given a shock by the waiter telling us the chef had died on Saturday on his way home in his car from a heart attack they thought. There is going to be a post mortum. He was the same age as me. I was only talking to him last time we were there last week. The place will not be the same without him. I always thanked him at the end of the evening when he came out of the kitchen to talk to the proprieter Tony at the bar. His home made limoncello ice cream was amazing. He will be greatly missed.

It makes me realise how luky I am to see the flowers and still be alive.

Received my pack from the Race for Life today and I set up my fundraising website yesterday so I'm well away now!

Wednesday 25th March

It was the second anniversary of Dad's death yesterday and the memories came flooding back.

I phoned work today and spoke to Claire. I told her how I'm still feeling tired and don't know how I'm going to manage. Ok I'm only doing two afternoons the first two weeks bu t Claire says I'm booked solid with 15 minute appointments. I told her if I can't cope I'll just have to pack up. Dreading it.

.

Tuesday 24th March

Very tired again today had to force myself awake again. When will this tiredness go and when will I be back to how I was before the breast cancer. I'm due back at work in less than 2 weeks and I don't know how I'm going to manage.
Walked to Gray's doctors today (slower than normal!) to pick up his prescription before catching the bus into town to do some shopping. After meeting Gray from work we went for a balti which we enjoyed.
Was going to take my prescription into my doctors but didn't think I'd have the energy so will take it in next week instead.
Phoned my cousin Pat yesterday before they flew on holiday this morning. She asked if I'd had the results of my blood test yet. for the BRCA gene. I explained it had only been 2 weeks and I'd got another 6 to go. I think she's worried about her daughter Julie, understandably. So am I. This waiting seems to go on for ever!

Race for Life - Fundraising widget

Race for Life - Fundraising widget

Friday 19th March

Went to a meeting of the National Osteoporosis Society at Shirley Community centre in Solihull. A talk by an osteoporosis nurse, Alison from Heartlands Hospital. It turned out she had helped treat Dad after he'd broken his pelvis.
Very interesting talk and I learned a few things and asked some questions. Osteonocrosis was brought up and I added to the discussion. Some of the ladies asked me questions afterwards about dentistry.
Met a lovely spritely 83 year old called Molly who was sat next to me. She loved to talk as much as me!!
Caught the bus back into Brum and met Gray for a pint in the Wellie and a Thai meal.

Tuesday 17th March

Booked in for the Race for Life yesterday for Brum 24th May. The day before Gray's birthday.
Had tried to book on the net on Sunday but it messed up and I had to do it on the phone yesterday instead. Tried to set up an on line donation site but couldn't cos haven't got a registration number yet. 7 of us from the BRCA Umbrella site now doing it together. Hopefully we can get a few more. Looking forward to meeting them.

My Blog from today 16-03-09

Well we have both been very tired today as had a disturbed night due to my brother who has had trouble with a neighbour.
I caught the bus into town to do some shopping, met Gray after work and caught the bus home to go to the local Italian restaurant where we enjoyed a meal and company.

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My Background continued.

My oncologist also refered me to a consultant geneticist. My mum had had ovarian cancer and my paternal aunt breast cancer. My GP had also suggested my breast cancer was genetic.
I attended the genetics clinic on 9th March and it was decided I was borderline for genetic testing so I went for it.

My Background

I've never done a blog before but I've kept diaries many years. My first was in 1962!
I am an extremely lucky person as I have had 3 health scares and I'm still here.
My first was in 1994 when I was 39 when I had a diagnosis of precancerous cells on my cervix. In view of Jade's demise I was very lucky it was picked up. I had always had smears from the age of 21 which you could in those days. The abnormal cells were never found on any smears I was told by the consultant because of the position of them!!
They were only found after a blood marker test as I was having 6 monthly screenings for ovarian cancer as my mum had had it.
As it happened the CA125 showed up because I had endometriosis which had never before been diagnosed even though I had had symptoms since my 20's and had an ovarian cyst removed when I was 27.
As a consequence I had a hysterectomy. This was a shame as I partnered up with my husband 2 1/2 years later and we would have loved to have children but it wasn't to be.
The third was a second ovarian cyst in 1998. It flared up in the night and I was in agony. Gray wanted to call an ambulance but I wouldn't let him. I knew it was a cyst.
I managed to get an appointment with the GP a few days after and I explained what I thought it was and that my Mum had died of ovarian cancer. She refered me to hospital for a scan where sure enough was shown up an ovarian cyst.
When I had surgery it was found I'd also had acute appendicitis when I'd had the pain as the cyst was stuck to it!! How lucky was I !!
The third was breast cancer which was diagnosed on 21st August 2008 after my second ever routine mammogram. No lump was felt by myself or any of the medics! I had a lumpectomy on the 7th October 2008 I had a Ductal Invasive carcinoma removed by a left wide local exision and 2 axillary sentinal nodes removed. The tumour was 26 mm grade 2 and thankfully the nodes were clear. More luck!!
It turned out they didn't get clear margins and I had to have a cavity shave on 4th November 2008 and ductal carcinoma in situ was found at the inferior margin.
I aws booked in for radiotherapy 15 sessions plus 2 boosters. This started on 2nd January and finished on 26th January.

Meantime my oncologist had sent me fo a DEXA bone density scan as the hormonal treatment he is going to put me on after 2 or 3 years of tamoxifen is an aromatase inhibitor and that can thin your bones. He menttioned osteoporosis and I said that my cousin had it .
Ihad that done on 30th December 2008 and this showed that I had early osteoporosis. I was put on alundronic acid and calcium and vitamin D.

I am also on tamoxifen.

Anyway that's the backround!