My friend Mo came round this afternoon to take me to our GP's so I could ask for a prescription for more heparin injections as the hospital had told me to. She said they weren't allowed to prescribe it because i's too expensive but she gave me 10 anyway!
I'm not getting much sleep lately due to pillow problems. They're just not working for me. After I had the brain bleed uthey told Gray to call a paramedic every time I had a neck ache cos I may be having another. How ridiculous! So we went off to John Lewis and bought one of these Tempur neck pillows which worked for for me for while but I had to sleep flat on my back which was uncomfortable. It worked for a short time and then started giving me neck ache as it was too hard.
I've had trouble with my neck for years due to my job. As a dental hygienist you have your head in one position looking in people's mouths and we and the dentists had to live with neck ache. They still do. One day mine totally seized up and the doctor explained because of having it in one position for a long time it had gone in to spasm and gave me stretching exercises to do which I did for years to help prevent problems.
So I decided to buy another pillow. We went out yesterday to catch a bus to Solihull to buy one but the local buses were'nt running like they should have been and when one turned up it wasn't going anywhere so we gave up and went home..Gray is back at work today so I've asked him if he can find me one in Brum on his way home from work today bless him
I had a text message from an old work friend I haven't heard from for ore than 2 years the other da I phoned her yesterday and she was really pleased to hear from She wan'ts to come and see me in the new tear It was lovely to hear from her. It's now0640 am and Gray should be getting up for work now!
On Tuesday 22nd I had a CT scan done on my liver and lungs and horror of horrors they found a small clot on one lung and prescribed daily heparin injections I certainly didn't want to stay in hospital so I voluntered to do it myself at home as I was quite capable as I have been trained to do them previously So I was shown and watched on the ward. We then had to wait 2 hours for the pharmacy to bring a supply of injections down We were at the hospital for 8 hours altogether It was very frustrating
It isn't very pleasant injecting yourself in the stomach daiily
The snow has arrived big time. We had decided to go shopping for some last minute stuff for Christmas as it was the last Saturday. So we went off to Solihull. But neither Birmuingham nor Solihull councils had done any gritting on any road. We were worried we would have to walk back but luckily we didn't have to.
I am still suffering from side effects from the steroids and the double vision is causing me eye strain with a headache over my ryes.
Gray's sisterr is coming down from Goxhiill to see us tomorrow and we are hoping to take her out for a meal.
Tuesday I'm booked in for a CT scan so I'm hoping to be able to get to the hospital.
I've been on steroids for nearly 3 months and the longer I'be been on them the worse the side effects. Loss of strength in my legs , getting out of breath very easily and now double vision. I am being weaned off them slowly 1/2 a gram a week but it's taking a long time and he wants to keep me on a small dose indefinately! It's the double vision that's getting to me the most.
At Gray's work today they are having their secret santa and I've been invited but I'm not sure as it's difficult with double vision and anyway it's snowing..We will see.
Hi SOrry about the long gap but I was waiting to hear about the parp inhibitor trial. We travelled down to the Royal Marsden 2days ago by taxi. Very long journey from Birmongham to be told no due to the fact they say I have metastases in the lining of my brain. It was suggested I have another drug by chemotherapy called carboplatin which I was told works just as well. It was also suggested I get a ct scan of my liver. I saw my oncologist yesterday and he has put me down for chemotherapy after Christmas and also a ct scan of my lungs. I'm typing this on the iPad. I intend to have the best Christmas ever this year you never know it may be my last. How depressing.
Yesterday ate I saw my oncologist we went in to my work place for the first time since I went off sick. It was great to see everyone. I really enjoyed it.
A very wet day! At least the daytime TV has been better today after phoning Sky and getting another package. Unfortunately we wanted 2 as we wanted ESPN so we can see live Rugby but it's too expensive.
Had a phone call from a very old friend from my childhood and we talked for hours on the phone.
I am very much looking forward to seeing my oncologist on Wednesday.
Also had along conversation on the phone with my best mate Mo. We are going out for a meal with with Mo and Pete on Friday. And Gray and I are going out for an Italian meal tonight round the corner.
I am finding I'm sleeping better now my evening steroid has been halved. I was having disturbed night's for a while constantly waking up and using my reading light to look at my watch! But now I feel more rested. Gray saw our next door neighbour today who joked that she was disgusted by me going down to the porch one morning in my pj's to pick up the post! I said to Gray she does know I'm off sick doesn't she? And he said of course.
Gray's old boss died last week and he is going to Berkeswell. for the funeral tomorrow.. Also one of our neighbours died last week and she was in her 4'0's. avaer sad. we have been invited to the funeral and I have nothing to wear and can't afford anyting and Gray is stressing he hasn't even got a black tie for tomorrow. All I've got is a pair of jeans and a a black T-shirt to wear!
Walked to the chemists with Gray today to the pharmacy with a new prescription and to do a a little shopping before the walk home. It's been a lovely sunny day today but it is getting very cold now it's after 16.00 and starting to get dark.
Went out early this morning to go shopping to buy new sofas. Very happy with them. They will be delivered in January. Being vegetarian they are made of faux suede. Just the sort of thing I have been looking forward to for a few years or more. Very happy we have found them.
Also did a a big shop in Boots for toiletries which willl last for months. spent over 80 quid! And managed to buy a new mobile phone very similar to the one I lost a couple of months ago on special offer from Carphone warehouse which I'm very happy with but am finding it hard work to work out how to use and yes of course I've lost the instructions! It will keep me occupied during the day!
Yesterday was am amazing day. My oncologist phone to say the neuro surgeon didn't even want see me . And he is putting me on Parp inhibitors. I will have to go to Cambridge for that as They are doing BRCA 2 down there which makes sense as it was found down there by Professor Mike Stratton. I can't remember smiling for so long in one day. I am to see my oncologist at 14.30 on Wednesday about it. I awas actually in taers of happiness as well!
I phoned my oncologists secretary Lynn this morning. A very nice lady to ask about this neuro surgeons appointment and she said she'd get back to me. I also phoned the GP's surgery and asked if I could swap the prescription they had given me for Ranitidine tablets for the liquid version and they said they would sort it for me and post it as we can't get there for a week and it takes 2 days for the prescription. I can't get there on my own and Gray can only get there on a Saturday morning as he is working.
My oncologist has just phoned and he says the neuro surgeon don't want to do anything. Wow!! And my wonderful oncologist is putting is putting me on Parp inhibitors bit I wil have to go for Cambridge for it as they are doing BRCA1 in Birmingham and BRCA2 in Cambridge which makes a lot of sense to me a it was Proffssor Michael Stratton at the Welcome Trust there who found the BRCA 2 gene and I'm going to meet . I'm so exited and happy. I 'm absolutely extatic.
Was supposed to be receiving an appointment this week but the post csame with junk makil. Iphoned my oncologists secretary as asked but she was off today. Will try again tomorrow.
Bit of a nondescript day really except for getting stressed up about this hospital appointment.
Did some knitting and then managed to trip on the wool and managed to unravel what I'd done. I have not been in a very good mood today. Managed to do a bit of net shopping too.
Had a web chat with some friends too.
Tonight I'm looking forward to going on the Breast Cancer Care web site primary chat site to speak to my old friends. I was told last time I should go on the secondary chat instead but my old friends say they have missed me. The secondary chat is on a Tuesday and I missed it anyway.
Boots phoned this evening to say my contact lenses were ready for collection so I tried to phone Gray to ask him to pick him up but as usual I just kept getting stressed up getting through to his voicemail all the time which is where all my credit on my mobile goes. (don't ask me what is wrong with the spelling of voicemail is! perhaps because it's English spelling!) Eventually I got him after about half an hour.
Right I'm now going to chill out in front of the telly and try and repair the knitting.
It's very early - 0730 and have just seen Gray off for work. I have had a lovely veggie bacon and egg sandwich for breakfast made by my wonderful husband ready for when I take my steroids. There is a routine in the morning. I always seem to wake up first and Then Gray at 06.30. I take my Thyroxine which has to be taken 30 minutes before food and then breakfast.
Last night Gray managed to find my lost contact lens on the bathroom floor. I cleaned it and soaked it overnight and it's absolutely fine for another week when I'm due to change to change them for a new pair.
When I started on the steroid tablets they gave me a very acid stomach and I couldn't eat anything but eggs and cheese which I haven't touched for years as I used to be vegan but now vegetarian again. Everything I ate felt like battery acid. Then when I saw my oncologist I mentioned it to him and he suggested some tablets but they had gelatine in so he gave me a prescription for Ranitidine - 2. 5ml spoons twice a a day and it worked wonders and lo and behold I could enjoy food again. The prescription has now run out and our GP has given us another but they are tablets. The pharmacist ensured us there was no gelatine in and I checked the ingredients label. I am due to take the first one this morning and have decided to dissolve it in water. I just hope it's as effective. They say take 2 a day 12 hourly. 30 minutes before taking the steroids. Well I'm supposed to take my steroids at breakfast and lunch but that won't work now. It will be morning and evening meal My oncologist had suggested at lunch time so as not to keep me awake at night.We shall have to see if it works. When we get my next prescription we will put a little note in for the GP asking for the syrup instead. I was not in a good mood when I realised what she'd done. It was written by one of the doctors I'd never seen before so she doesn't know me. I'd rather one of my two usual doctors had done it.
I was woken in the night by torrential rain on the windows!
The knitting is now going strong and Gray's jumper is on the way
Last night we got a taxi to one of our favourite balti houses. We hadn't been there for about 6-8 weeks and we know the staff there so it was lovely to see them again.But I chose too mild a dish which didn't have much flavour but it was still enjoyable to get out.
My brother came round for a couple of hours to see me yesterday afternoon and brought a couple of DVD's his friend Dave lent for me to watch.
The morning started well with a couple of rested hours lie in then DISASTER!
While putting my left contact lens in it decided to fall out goodness knows where. In spite of lining everything including the s ink with white tissues so I can see the blue tinted lenses when they're dropped. So I had a few old disposable daily ones which are to a higher power and now I have to wear reading glasses all the time for any close work like this.I pay a monthly direct debit for my lenses and am supposed to receive them by post every couple of months but haven't for a while . I was only given 2 weeks of lenses and I have only a weeks worth left. So I phoned the opticians and the recepitionist insisted I had lost 6 weeks worth which is absolutely ridiculous but I couldn't be bothered to argue with her. You're not due your next delivery 'till December she said. You're joking I said. Could I pay extra for some more for now as I was desperate. So I had to pay about £70.00 extra on top of the direct debit while I'm on sick pay. What a rip off!
Thaen my reading light got lost again, the one I use in the night if I need a pee so as not to wake Gray up. So I went on Amazon .co.uk and ordered another 3. Made a right pig's ear of that! Ordered them on my name on my card and then it came on Gray's card. Luckily my Brother was here to help me sort it but it was very frustrating.
My cousin Pat phoned today and she always helps to cheer me up.
I'm just waiting for my brother to go home so I can get ready for Gray getting home as we are going for a balti for the first time in about 8 weeks and I'm really looking forward to it and seeing our friends that work there.
Today I managed to get an hour's lie in after Gray went to work. The tatters man woke me up earleir than I wanted to! It's unusual him coming round during the week while people are at work but it's dustbin collection day tomorrow morning. Perhaps that had something to do with it.
Last night Gray tried to show me how to make a rug! I'd never in my life made one before but had and made it look very easy but not for me and he is going to have to try and teach me again.
Wore myself out during the day stating knitting a jumper for Gray. Quite a complicated pattern. Watched a couple of DVD's and then had a doze on the sofa before tidying up before Gray got home. Also had a chat on the macmillan cancer support chat site with a few of them which I used to do a lot the first time I had breast cancer and it really cheers me up.
Had my shower and hair wash which to start with I needed Gray's help but not any more. I just love my independence and I'm feeling great now and trying to enjoy life as much as possible. Hoping to go for a Balti tomorrow to one of my favourite Balti houses " Spicewoods" for wonderful food and to see our friends that work there who we haven't seen for about 6 -8 weeks. They will be wondering where we have been. We will get a taxi there as Gray thinks it's a bit far tot far for me to walk at the moment. We are not sure exactly yet how far I should walk. We will ask the oncologist next time although I feel like I need the exrecise as I'm putting on weight with the steroids and they are making my face go puffy and I just hate that. As you can see I haven't put any recent photos of myself on here yet as I'm a bit ashamed!
Anyway, a lovely veggie roast meal awaits which I'm really looking forward to!
What an awesome day yesterday. Gray took me to Sollihull by taxi as I haven't got the confidence to get on a long bus journey yet.
It was the first time I'd been there or anywhere much for about weeks and I really enjoyed it.
We've been wanting to buy a couple of new sofas for quite a while. Me being vegetarian altough I like the look of leather sofas I could never sit on a cow! We actually found a shop that sold some faux suede sofas a while ago but they were huge and wouldn't have fitted in our lounge. Then yesterday we found one almost the right size and the most comfortable sofa I'd ever sat on. I want it.
We also went to Hobbycraft to buy things to keep me occupied during the week which include a rug making kit 9which turned out to have the grappling hook missing and knitting patterns and magazines. I was taught to knit by my Mum when I was about 6 and used to knit for hours. I have always worked with my hands and I was getting itchy hands! I found a couple of patterns and decided to knit Gray one first. So I'm sending him shoppping with a list for wool and knitting needles! Can't wait to start1
What a lovely evening last night. 4 of my work mates came round Shobhna, Levi Leah and young Emma. They really cheered me up ant they brought some birthday presents and cards round.
Today my brother and sister in law Paul and Corrinna arriving this afternoon with our niece Rae and her boyfriend Robbbie. We are taking them for an Italian meal at their favourite Italian restaurant. They have said they like it so much they would consider travelling up from Leigh-On Sea to eat there! They usually stay with us but they didn't want to put on us with me not well so they are staying in a a hotel at the NEC instead. I'm really looking forward to seeing them.
Tere's a funny little story about Robbie!
Years ago we had a police dog trainer handler living next to us and the first dog he had was a lovely docile labrador and his name was Robbie. He had to give Robbie away to a neighbour unfortunately because he was so docile. He omitted to tell us h'd got anew dog and the shared fence was down. We go out to put washing on the line and practically got attacked by a new dog!
When Paul and Corrinna, Rae and Robbie came to see me in hospital I said "ooh Robbie the dog!" He hasn't lived that down yet! So that should be fun.
I've decided to carry on celebrating my birthday over the weekend as it was a bit of a damper on Wednesday having hospital appointments. Gray is hoping to take me in to Sollihull by taxi as a long bus journey my oncologist thought would be a bit iffy just yet
Anyway I have some steroids to take and it's still very early so I will try and get a bit of a nap before the visitors arrive.
What a great Birthday I had yesterday! The night before I said to Gray it just doesn't feel like it's my birthday tomorrow as We've gotta spend it at the hospital. But he made up for it with a beautiful birthday balloon he tied to the bottom of the bed and he showered me with presents first thing in the morning bless him. And a big gooey chocoltae birthdy cake!
The hospital appointment included a screaming head mri. The noise was horrrendous I thought it was going to gtake off at one point1 They offered me piped music so I aked what and they said Heart fm which is a local soft rock radio station. "not my type of music, have you got planet rock?!" "No they say and give me a pair of useless faom earplugs! As it was my birhthday they gave us a couple of pieces of cakes. The staff were very pleasant.
Aterwards we saw the oncologist and for once we got in very quickly. He showed us the digital mri on the computer and basically we are non the wiser. He is going to refer me to a neuro surgeon at th QE. He says he really doesn't know whether I'll need surgery or not but he wants to get that sorted first. The thought of brain surgey scares me more that the cancer and that's a face. My friend Helen's Husband Bill had brain surgery a few years ago and they are coming round this afternoon so he can speak to me.
Ialso aksked him about parp inhibitors and he going to consider them for me for later but I will have to go th London or Manchester for it. I would prefer Manchester and we have some family up there. I also asked him if the bone mets could be treated and he said yes after we get you head sorted. That really please me as I didn't think they could.
Mycousin Pat and Gordon were going to pick us up from the hospital to take us for a birtday meal but as we got out early we went home first so we could get a few things done and the Pat and Gordon picked us up from home. Had a lovely meal but as usual I got tired afterwards so we didn't stay out too late..
Will probaly have a rest on the sofa a bit later today to prepare for our visitors.
Last night was a big victory. Gray walked me to a local restaurant for a meal and back. I don't get out much so it was really enjoyable though I did feel tired afterwards. I tend to get tired easily these days.
My contact lenses arrived in the post yesterday but only 2 weeks worth. Which means I wil have to phone them yet again for more when they're supposed to be posting them every month as I pay a lot of money on direct debit.
The postman also came this morning bearing cards and packages for my birthday tomorrow. And my birthday will be spent at the hosptal in an mri scanner and the oncologists waiting room. My cousin and Pat and her husband Gordon are picking us up afterwards to take us for a birtday meal and I'm really looking forward to that. We really get on well with Pat and Gordon.
So today a rest day. Thursday my friend Helen is coming round with her husband Bill who had some brain surgery a few years ago and wants to talk with me.
On Friday Grays brother and his wife Paul and Corrina are coming to see us and we are taking them out for a meal. They usually stay with us but they are staying at a hotel at the NEC so as not to put on us while I'm not well. They didn't want to stress us up I guess. They breed canaries and had offered us a couple but we had second thoughts in case I had to have more surgery in case of risk of infection. But they would have been lovely company and they sing so beautifully.
I've been watching a programme on gene therapy. Now why couldn't they have done that for us BRCA ladies to save our lives.
Lovely sunny morning to lift the spirits today.
We had a couple of visitors who cheered us up this afternoon and Mo and Pete brought us round a lovely big pumpkin which would look proud on Halloween! a recipie for agorgeous pumpkin soup they had made for us a few weeks ago at their house with moussaka.
Gray goes back to work full time from tomorrow so it's 06.30 rise. He then makes me breakfast bless him so I can take my steroids and organises everything for the day for me. I just couldn't quite manage without him totally but I don't do too bad.
I'm feeling a bit fed up as I've lost my mini reading light I use to get up in the dark night to go to the loo so I don't trip on anything I just hope we can replace it.
Gray's gone shopping but he's back now thank goodness. Been so bored I've been watching QVC! And dozing on the sofa again.
I had my appointment come through for the MRI scan with a questioaire which included to cut a long story short had I got any metal in my mouth. Well yes I have on my bridge. So I have phoned a friend at work to ask my dentist about it. Thaen i will have to phone the hospital about it.
Had a lovley visit from 3 friends and a boss from work last night bearing gifts and cards for my birthday for next week. We had alittlw wine but the acid got to my stomach. It was wonderful to see my friends but I wsa very tired afterwards.
When Gray got home from shopping today he took me for a walk around the corner and back.
Wea re a bit pissed off this afternoon as we can't watch Tigers play on Sky sports anymore. They're trying to get us to pay extra to see it and we just can't afford it and of course we can't get to Lecester to watch for a while because of me. We were talking of going for a meal at our local Italian restaurant tonight but Gray thinks I'm too tired.
A day on my own as Gray hsa gone back to work. I'm tryin to strengthen my thigh muscles up and hey're aching now!
Been watching Sky telly. absolutely nothing worth watching. I think I'll hit the videos!
My brother came round to keep me company yesterday which was nice. Today I have several friends coming round this afternon which will be nice. I tend to get tired easily so I may go for a nap this afternoon.
thae opticians sent me another latter yesterday saying I need to go in for an eye test for my glasses to get my contact lenses. I phoned them again after about 4 times previously and told them I couldn't get in and had run out of contacts and couldn't seee. She apologised and I said Gray would go in and pick them up on the way home. They ha said a week ago they had posted them but they hadn't turned up.
So they gave me 1 pair. Totally wrrong prescription. One too stron, one too weak. we'll have to see!!!
They said they posted them 2nd class 1 Gray pointed out our 2nd class post takes 2 weeks. I'd rather have paid the fiirst class postage myself. I wouldn't mind so much but I pay direct debit for them and they're about double the cost of my old ones . I'll have afigh getting them in before my friends arrive and hop I dont't loose one as I have only 1 pair.
Long long wait at City hospital for can results from my oncolgist. Ct scan inconclusive unable to tell anything from it. Bone mets very scay but as I said I know of people with bone mets lived 10 years or more and he agreed on that. My wonderful breast care nurse arranged for occupational health to deilver a commodo.
Our friends Mo and Pete piclked it up in tyheir car afterwards and took us for a meal at The Lord Clifton which I was looking forward to today after the day we had. It kept me going.
Went to City hospital again today for a Ct scan. Was quite nervous about it as to what tyhey might fid. The staff were very nice and reassuring with a good sense of humour. I had to be injected with a die so anther great bruise on my poor right arm! They asked me if I bruised easily? " no" i said. " only when i have injections!" 2Was I on blood thinners? 2 no said I!
When we got home I was shatteredand slept until 19.30, waking up thinking it was the next day1 slept with my contact lenses in and my make up on. How disgusting! Friends from work phoned to see how I was and it seems wer're having a party Friday evening.Even one of my bosses is comimg round. He was even trying to get me back to work. 2no way I said and I spoke to my friend and manageress and she said nt to worry. I actually had an agency phone me the other week to do some work! A very definate NO!!
At City Hospital again tomorrow to see my wonderful oncologist for the scan results. Quite worrying but our friends Mo and Pete are taking us out afterwards which gives us something to look forward to
I add I am staying hugely positive about all this still. I don't really believe it still I am a great believer in positive thinking. My Dad brought me up with that.
At the hospital they asked me if I had any allergies: plasters, pollen, dust mould spores " they run in the family "I said and some nasty things like breast cancer and the brca 2 gene. They seemed quite interested.
Amanda the wonderful breast care nurse hasphoned this aftteernoon after ordering a commode for us from the ocupational therapist. for wednesday. Only trouble is we need our own transport so we will either have to take it bback by taxi or get a friend to pick it up but it will be a godsend .
Spoke to the breast care nurse for advice this morning and she will be seeing me on Wednesday when ai asee the oncologist.
I have a ct scan tomorrow which I'm a bit nervous about but they say it is done by computer so houl;dn't hurt.
Then Wednesdyay with my lovely oncologist and results of bone scan and ironically my annual mammogram. That was originally boked in fo Thursday but we phoned to say we didn't want to be at the hospital quite every day! So they kindly changed it.
I'm still not 100% sure of my balance but slowly gting a little mor now. I am still using a stick just in case forbalance and I need watching going up and down stairs. My husband has ben such a brilliant carer for me but he is going to have to go back to work on Thursday as we will be runnin out of money He is going in at 10000 and leaving at 1600. We have asked my brother to come and cover for us but not sure how reliable he is. Gray has just gone out shopping and he isn't here yet so I'm on my own. I just hope i don't need the loo. We think a commode downstairs with a very nice screen round would be very useful for when Gray goes back to work. We will be talking to the bresat care nurse about this on Wednesday.
I've had some really lovely messages from all my BRCA Sisters and many friends. They've all been very concerned.
So bored n my own with the telly on and wrting my blog. Ill have plenty of time for that now! i Spoke to an old friend I haven't seen for yeras yesterday and she is praying for me. And my Auntie Mary in Mancheser who has sent me a healing prayer card and is praying for me. I am very lucky to have such god friends and family even though they did give me this dam gene
Sorry haven't written for a while but I've been seriously ill in hospital.
My husband and I went down south to Dorset for a couple of weeks holiday.
THe day before we'd gone out with our best mates Pete and Mo and I managed to slip in the toilets and couldn't get back up again. Mo helped me out. It was like my legs went like jelly. The three of them took me to A& E AT THE LOCAL Heartlands hospiital much as I hae that place as my Dad died there in 2007. They checked me over andthey pointedoutmy bruising and that was that.
When we got to Poole in Dorset we went for a snack meal. Baked spud andbeans and I instantly spewed it up. After a short nap in the hotel my hubby thought I llooked a bit more wierd than normal so he called an ambulance and they took me to Poole where they saved my life. I'd had a brain haemmorhage. A ct scan was taken and they put me on iv steroids to bring the swelling in my brain down. I couldn't talk so clearly, my balance was shot and so had some of my memory. They had practically written me off that night. Gray says I was on a moniter and hespoke to me and it went right up. I was unconcious apparantly. They rekon THR BREAST CANCER HAS SPREDA TO MY BRAIN aaaaaaaaaarggghhhh!!!!!1111 I'm scared stiff now. I will be seeingmy oncol
Thya were gobsmacked I was still alaive the next morning and gradually they kept saying it was amazing the improvenent in my balance and walking and such.My wonderful cousin and cousin in law Pat and Gordon drove all the way down from Birmingham to Poole and drove us back to Birmingham. I had a lovely afternoon yesterday. My work friends came to visit bearing huge gifts Helen cooked some lovely shottrbread and a wonderful lemon drizzle cake. They said they'd come ropund again this afternoon but no sign yet. And one of my bosses Shobhna may come too and perhaps another couple of fiends.
I'm having serios problems with the steroids as they are ver acid on my stomach so I've been slugging gavison but I find vanilla ice cream is the most soothing and my appetite has gone right up. They say that's the steroids too. I Cn't tzke the tablets they wanted to give me or that as they have gelatine in and I'm vegetarian.
I've just written this once and lost it!
I'm feeling bit depressed and tearful today. Am I the only one ever in my family who'se ever had to cope with with this Brca thing. I'm mentally exhausted and frustrated still searching. It just doesn't seem fair. I ordered the death certificate of my great great grandmother today. A shot in the dark I know but worth a try.
And on top of that I feel like Gray is trying to force me to fly to the sun with him. I am a very nervous flyer and I can't cope with that for a while. The stress of a flight spoils a holiday for me sadly. I worry through the whole holiday about the flight back. It goes back to a bad flight we had to Singapore a few years ago.
Anway back to the exiting ironing! Sorry to be a bore!
Searchjng...searching...searching for over 2 years for my Dads's side of the family. II really want to know where my mutation has come from before I have my pbm. It's a mental thing and it's very frustrating as I'm getting nowhere. I've worked so hard for it and time is running out.
Got though my apppointment wiyh the shrink at the QE. I phoned one of my wonderfuI BRCA sisters the day beforevto ask what to expect and she was definately right.. I was asked why I was doing it !! Because I want to live!!
Had a wonderful weekend with my brother and sister in law hubby and niece and friends
Also have found out from a fellow blogger that I have suffragettes in the family which Im very proud of.But I still haven't been able to get in touch with my Dad's family which is very frustrating.
It's August bank holiday tomorrow and we are having Autumn weather already but I am having bad hay fever symptoms due to grass pollen.
Today I had my first appointment with the plastic surgeon. What a lovely man and he's giving me the cohesive silicone implants I want in a one step prosess as I want to go smaller. He was very happy about that.He also sent me for before photos which was weird as I'd never done any modelling before. Then introduced me to a lady he had treated earlier who talked to us for a while and invited us to join Butterflies which is a support group based at the hospital. http://www.butterflies-support.org.uk/Which I have often thought it would be nice to join which is run by my plastic surgeon bless him. I am a very happy bunny!
Oncology appointment over. He gave me a thorough examination and asked me lots of questions and said I'm doing very well. He also sent me for a blood test he said as a base.
Getting the house ready for my sister in law and family coming on Friday. And tomorrow is the big day with the plastic surgeon for the first time. I intend to stick to my guns about the silicone implants.
Well I have one day at work then one day at the hospital for an oncology appointment and then one day at the hospital again for an appointment with the plastic surgeon about my pbm. I am very stressed out and finding it difficult to sleep which is making work very difficult.
Managed to get in touch with an old friend who can help me with my problem. Had a long conversation on the phone with him this evening and Gray and I are meeting him for a meal tomorrow night.
Tomorrow evening I also pick up my new trial contact lenses. I'm looking forward to it. It will be very interesting. The optician will also give me my 6 monthly contact lens check. I have to have them 6 monthly due to the tamoxifen. It can affect your eyes but luckily I've not had that problem.
It's turned out a nice Summer so far but it's turning out a nightmare for me. My employers are on my back complaining I look stressed and they don't like my health problems and I feel like they are trying to push me out. I suspect it's because they know I'm going for preventative surgery and that I've got carpal tunnel. They don't like me wearing my wrist brace and I've gotta get a letter from my GP! They gave me a verbal warning through our manageress who used to be a friend but not any more! I can't believe they've done this after 24 years. I feel very hurt and keep bursting in to tears. I now know what it's like to have clinical depression. We have a friend who is an employment lawyer who I'm trying to get in touch with through a couple of friends. I also have spoken to a family member who went through a similar experience. I am very grateful for any advice As if I haven't got enough problems with the BRCA and the breast cancer. It's enough to throw me over the edge.
Great news. When I got home today there was a letter from the hospital for me with an appointment with the Plastic Surgeon I wanted to see and was referred to in the first place. The appointment is 12th August. I'm so pleased.
I had an appointment with the plastic surgeon for 3 days time on the 22nd June. But I saw a friend a couple of days ago who had worked with him and the one I had originally been booked in with and gave me some bad reports about him including the fact that he's unapproachable. I had phoned the surgeon's secretary when I got the appointment through the post as it wasn't with the one I had asked for or been referred to. I was told the one I was booked in with had an earlier appointment available and that he'd trained the other one anyway. I said ok as long as he's good and I get on with him ok. Then I saw my friend who advised me to cancel the appointment and ask to be booked in with my original requested one. Which I did. I was told the one I wanted was booked up in theatre for 6 months but I said that was ok I'd rather wait and have him. But you need to be seen within a month I was told. They thought I was a breast cancer patient. I pointed out that I was having a risk reducing double mastectomy and she said that was ok then. I wouldn't have been happy with a Plastic Surgeon I couldn't trust or talk to. I feel it's very important to have a good relationship with your Plastic Surgeon. She said he wasn't in until Wednesday and my original appointment was on Tuesday. Did I still want to cancel and I said yes. Now I am waiting for another appointment through the post.
I apologise if the colour of this text isn't right but I'm sitting in the blazing sun still nursing my possibly broken ribs! At least I've found a bra loose enough round the back to wear. Am thinking about going to the GP's to get another sick note. The one I was given at the hospital takes me up to Wednesday and I'm day off on Friday anyway so I'll only be in for two days and I could do with another week for these ribs to settle at least. They're not going to be very happy with me at work but it's better than dragging myself in in pain and thedn having to do the long journey back again. The journey would be enough to make it feel worse! I am wearing the splint just at night now and it has kept the pins and needles away that I get at night with my carpal tunnel syndrome exept for last night. I probably didn't tighten it up enough. I bought another splint from Amazon so nI can wash the other and I think I'mm have to wear it to work in. I wet in to town on Friday to get some more things for his rebirthday which is today. It's 9 years since his heart attack and we celebrate it each year. This year being his 9th I got him a 9th birthday card and a lego alien! Anyway after my shopping we went for a Thai meal and my ribs really suffered!
We're off out tonight to celebrate Gray's 9th for a balti at one of our local balti houses Varsha.
On Tuesday it's his real birthday. Gray is at work on Tuesday and so would I be if I wasn't off sick. We're going for another celebratory meal at our local Italian restaurant La Nonna.
Well as if I haven't had enough problems I've now got another!
On Sunday we went to Leicester to watch Leicester Tigers beat Bath to get a place in the final at Twickenham. On our way back to the station walking along the path with the crowd of fans I tripped on a kerb. There I go again! I hurt my hand quite badly and managed to lacerate it. And of course it was the side I've had the lymph nodes out which puts me at risk of lymphodoema. We were debating whether to have it looked at because of my osteoporosis. So we we visited the A&E department at our local hospital Heartlands on the way home. I don't really like going to that hospital because it's where my Dad died but we don't know of any other A&E's round here.
We were in A&E for four hours! Apparantly the government guidelines say a patient should be seen within four hours! Because of my osteoporosis they x-rayed it and the doctor said it wasn't broken but I had " funny looking carpals " and asked me if I'd ever broken it which I hadn't. Although I have broken my other wrist. He gave me a splint to wear and said he wanted me to see a hand surgeon in the fracture clinic on Tuesday. He passed me on to a nurse to have my wound cleaned and dressed and I booked the fracture clinic on the way out. They couldn't get me in on Tuesday, they were fully booked so they booked me in on Wednesday. I found the splint a great help with the pain but it did tend to rub a bit on my cut. He told me to stay off work at least a week and that they would give me a sick note. Oh he also said I hadn't actually broken it.
On Wednesday I went off to the fracture clinic with my splint on. It was quite a warm day but I had to wear my winter coat because I couldn't get my other one on as I had to bend my wrist to get it on and it was too painful. I waited one hour after my appointment time until I was seen which was quite good really as I was once kept waiting nearly four hours for one of my oncology appointments! They apologised profusely for the wait bless them. The doc said I hadn't broken it but I had a displaced carpus bone which he showed me on the x-ray. ( I think they have digital x-rays like we've got at work!) He said it hadn't been done when I had the fall it was work related. I said I'd had pins and needles in my hand at night but I hadn't had them while I'd wearing the splint and whether I'd got carpal Tunnel Syndrome. He said yes I had and I should wear the splint when I was in pain and at night. He also gave me a sick note for another week as he was worried about the cut on my hand getting infected in my job as a dental hygienist. When I got home I phoned work to tell them and my manageress/friend asked what was I going to do about my job and didn't I think my hands were trying to tell me something? I said I'll just have to see how I get on and that I'd just have to wear my splint while working if needs be. Gray took me out for a balti in the evening to cheer me up. The photo above shows the splint in action. The nurse at A&E asked me to take my rings off as my hand was swelling up and they didn't want to have to cut them off!
3 days ago I went for my first appointment with the breast surgeon to discuss my risk reducing surgery as they call it. As she described the risk reduction and the surgery I kept saying that I knew it already! I said I know what I want and who does it! She seemed very happy with that and asked if it was one of their plastic surgeons I wanted to see and it was. I said if he wont do it because of the radiotherapy I would go to someone else! She still seemed happy about what I was saying. She is going to refer me to the said plastic surgeon and a clinical psychologist. If I don't hear anything within 6 weeks to contact them. I was asked if I'd seen the DVD on reconstruction and as I said no the breast care nurse came in with some booklets and the dvd. I also told them about the wonderful support I'd had from the BRCA sisterhood and gave them the addresses of BRCA Umbrella, FORCE and the BRCA sisterhood group on facebook. They were happy to have them. The breast care nurse was one that looked after me through the breast cancer and it was really good to see her again.
Now my brain is totally taken over by it all I think I'm going insane! Perhaps I need to see that shrink!
Have now managed to sync the camera with Windows 7 but unable to do so with the printer on the new pc! What a pain Windows 7 is, nothing seems to be compatible with it..
So Here's the first picture I wanted to put on of my old friend Jenny who was the cleaner where I work. She worked there about 20 years ago, left and came back a few months ago but has now left again. I took a photo of her just before she left for the second time. I will miss our chats.
Was in London again last Saturday. Left home at 0600 to catch a train and arrived at the Breast Cancer Care site where I met my good friends from BRCA Umbrella I did the Race for Life with last year in Birmingham. Leigh-ann , Lisa and Rian and others I'd met on the web but hadn't met in the flesh ,Caroline, Jennifer,Karen, Lulu, Liz. I hope I haven't left anyone off. We were split in to different breakout groups and I was put in one without most of my friends except for Lulu but I made lots of other friends. Someone asked why are group was formed and the counsillor who took us said we all had something in common-we'd all had breast cancer. Interestingly there was only a couple of us over 50 and the rest were younger. That's what you get with BRCA, I was told previously I'd gone so long without because of my healthy diet as I'm vegetarian and was vegan for many years. Caroline pointed to a lady called Jackie I think she was a counsillor to ask my implant question and guess what? She said a lot of surgeons will do implants for ladies 6 months after radiotherapy and I've gone 15 months. YIPPEE!!!!! The day was invaluable but very tiring for all of us. Gray went down with me as I'm a wimp and don't like being in London on my own though I used to go there quite a bit during my time in the Navy on my own! He obviously couldn't go to the forum but he went to the Imperial War Museum as he'd wanted to see it for a while and he quite enjoyed it.Afterwards we went to a pub with Lulu and a couple of the other girls for a drink and a chat before catching the tube back to Euston. I asked them about their implants and one of the ladies had her expanders in and one of them said "yo've got your expanders in too haven't you!" Lulu pointed out that mine were real! It was quite funny because I'm quite well endowed!
I'd like to apologise for not putting any photos on for a while but my camera wont work with Windows 7 and are old pc has given up the ghost! I went to Boots to buy a new camera and the lady there looked at all their digital cameras and not one of them was for Windows 7. Can you believe it1 So my camera is useless!
Joy of joys! I received a letter this morning from the breast surgeon about my pbm! She says she wants me to see her so she can explain to me the pathway that they have for undertaking a bilateral risk reducing mastectomy. It's on Thursday 13th May. So the ball is rolling! I've booked the day off from work to make sure I get there on time and I can mentally prepare for it. Gray has an appointment at the Biobank on that day but he's going to change it so that he can come with me.
I'm on the phone at the moment trying to book Tigers tickets for a final match- and they've cut me off! Grrrrrr!
As days go by I'm getting closer to wanting to book that appointment with the plastic surgeon. My first big worry is whether he will agree to give me cohesive gel implants as I've had radiotherapy treatment. If he wont I'll ask to see another plastic at the QE through my counsillor. If I can't have the implants then I'd rather go flat chested. I really can't face having a flap done due to the longer surgery and recovery time. I'd rather use breast forms.
I've put my question on several BRCA webites including the BRCA sisterhood facebook group, BRCA unbrella and Force. A few wonderful people have replied to me, some positive and some negative but I'm still sticking to my guns! Would love to find others who have had succesful cohesive gel implants after having radiotherapy previously.
Easter weekend is over and it's back to work. Haven't eaten much of the chocolate egg I was given at work from the bosses even though it's Green and Blacks plain chocolate which is one of my favourites. Gray and I decided not to get each other Easter eggs this year as we both want to lose weight and I seem to have gone off chocolate since I went on tamoxifen. Can't understand that as I have loved plain chocolate all my life. We went to Leicester to watch the Tigers beat Bath and Sunday we had lunch with my brother Greg at the Wheatsheaf carvery. Gray spent most of the rest of the weekend decorating while I did a mountain of ironing. I'm afraid I'm allergic to wallpaper paste so I can't help him with thev papering or I sneeze my head off!. We put lining paper on the walls and then paint over it as the house was built in 1938 and the walls are less than perfect! When the paper is up I will be able to help him paint the awlls when we've chosen the paint. We have ahad lovely oak wood flooring put down in that room and the hall. We are very pleased with it.
The weekend was a bit marred by me worrying about my possible future pbm. Teri,one of my wonderful supportive BRCA sisters sugested listing my fears so they can all help me with them as they have already gone through the surgery. I am very lucky to have them in my life. Isn't the internet a wonderful invention I'd never have met them without it.
Right hi folks! Where was I? Oh yes down the smoke!
Next we trained it to Portsmouth where amongst other things we managed to get lost trying to find HMS Nelson which is where I did my dental nurse and dental hygienist training at the Royal Naval Dental Training school which isn't there any more! We managed to find it eventually after walking all round Southsea and Portsmouth We couldn't go in obviously but the entrance with the gate house hadn't changed a bit and it brought back so many memories.
We took a tour ound HMS Victory which was about my 4th time, Gray had been wanting to do it for years and he thoughrely enjoyed it. He was fasinated. Years ago there you to be naval matelots showing you round but now it's civilians I suspect volunteers. They used to say Admiral Nelson died on the ship but they don't think so. He certainly was fatally injured on the ship during the battle of Trafalger.
It was the first ship to be made of iron and was the pride of Queen Victoria's fleet.t
Another highlight for me was seeing my old friend Jayne. I lived in Plymouth for 6 years after leaving the navy and Jayne was a really good friend while I was there. I was very sad to leave Plymouth, I love the place. I t was my first draft in the Navy. When I was 15 I went on a Youth Hosteling holiday and saw Plymouth for the first time and fell in love with it then. I promised myself I'd live there one day and hey presto I did! I had to move eventually as it was in the time of Maggie Thatcher the destroyer! My work days were dwindling and I live in a slummy awful flat in West Hoe which was in a lovely location but was the pits and cheap! I wanted to buy my own little place but property prices there were prohibitive. My mum told me there was a full time job going near them in Birmingham and I could live with them while I got back on my feet. I very reluctantly arranged for the removals and dragged myself to Plymouth rail station to catch the train to Brum. http://www.plymouth.gov.uk/homepage/leisureandtourism/tourismandvisitors.htm
Jayne and I kept in touch for a while, I was even her Cheif Bridesmade when she married her husband Ian who was a Naval officer at the time ( a pig as we used to call them!) and he wore his ceremonial uniform with his sword! I visited Jayne in Plymouth and she visited me in Brum. After a few years or so they moved and she sent me her new address and phone number which eventually got lost and sadly we lost touch for years. Then about a year ago while I was recovering from my brast cancer treatment I had a phone call out of the blue and it was my old friend! She had found my phone number on a piece of paper! I've been trying to get her to use facebook to keep in touch and so has her son Tim but Jayne isn't very computer literate but she managed to video skype me!
Gray and myself met Jayne off the train from Portchester after she'd finished work and we went to a pub at the gun wharf for drinks, meal and lots of talking! It was so good to see my old friend again!
I'm going to publish this for now until later as I have a load to do. It's my day off and we've got a friend coming to lay a wood floor in one room and the hall on Monday and Tuesday and the room has very full book shelves in it so it's got to be emptied!
Here I am late again! Is it 3 months since my last entry I think! Oh dear! I want to add photos but I'm writing this on the laptop and haven't been able to add pictures to this yet as the camera's softwear wont bwork on Windows 7. What a pain in arse!!
Anyway since I last blogged my cousin Pat on my mum,s side has been for counsilling and testing and thank heavens has come back negative. She is now trying to persuade her brother to be tested as he has a daughter and grand daughters. I got nowhere trying to get him to do it , perhaps Pat will have more luck. She's told him if he wont go for testing he ought to tell his daughter and give her the option. On a more positive note I've found some cousins I never knew I had and have been in touch through facebook. Isn't facebook wonderful! Two of them have already contacted the genetic clinic and are waiting for appointments.
We've had 2 wonderful weeks off work! This time was spent as follows:-
The first few days in London as we wanted to go to the Who Do You Think You Are show at Olympia.We weren't impressed with Olympia it isn't a patch on the NEC. It was very interesting and we learned afew things. I learned I can now buy my grandmother's birth certificate on the net with credit/debit card. It wasn't possible before as they said I needed to use an Irish bank. Iwas thinking of opening an account with one! We liked the area of London we were in. The people were politer than in Birmingham and there wre lots of lovely freindly pubs.
That was part1. Part 2 will be on a later date as time is pressing and husband nagging!
Hi. I can't believe how long it is since I last updated this. Did I tell you all my brother got his results back and he carries the same BRCA 2 mutation as me and has already started his prostate screening. They told him he would just be having a consultation but when he got there the doc offered to do the in Greg's words "fingers up the jacksey test"! He said no thanks. So he just had the blood test. He had it done at the QE but the doc wants him to go to another hospital for his subsequent appointments and says he'll put his fingers up his jacksey then! Which he is non too pleased about. He took his result badly but as most of us do he's getting a bit more used to it now.As I said to him his risk is not as high as mine is for breast cancer. He is also at higher risk of male breast cancer than normal men so he has been told to keep an eye out for that too.
Christmas has been and gone. It was quiet for us with just the two of us and Greg but that's how we wanted it.
New year was also quiet except for constantly messaging my wonderful BRCA sisters who have been a great find for me and wouldn't be without them. I love them all and I'm so pleased they invited me into their sisterhood.
On New Years eve our local pub where we usually go for a couple of drinks every Saturday shut at 2100 as it did on Christmas Eve and as it does each year. Think of the money they're loosing!
At work they have made me change my Fridays off cos most of the patients have Friday's off and want to come in then. The bosses said I had to have Friday off one week and Wednesday off the next! I told them Wednesday is no good to me in the middle of the week and suggested I had Friday off the one week and Monday off the next which means I get a 4 day weekend every other week. They agreed on that. They now owe me 3 days leave in lieu as Christmas day and New years day fell on my days off and I have to go in on one of my days off this month as we are having some training in the morning which I don't want to miss as I need more CPD hours.
I am a breast cancer survivor and a very lucky person.I have also now found out I have a BRCA2 mutation-not so lucky after all but then perhaps I am!
After being a 2 year survivor I have now been diagnosed with metastic secondary breast cancer and I'm scared stiff.