Tuesday, 8 February 2011

Monday 8th February.

Well I better give you all a quick catch up on what has been happening.
About 6 weeks after my operation I found some messages on my husbands computer... from another woman... love messages between the two of them.... the top and bottom of that is.... Dave has left me for this big breasted tart he met on facebook .
I was already feeling down about the cancer and the mastectomy so you can imagine i was totally devastated... I thought my world had ended..... I have all this surgery coming up for reconstruction and i have to deal with it alone.... I felt more lost than ever.
Then I found a lump......... oh no... not again.... I can't cope again... not on my own.
There's no saying the cancer is back, but every ache and pain you just think it's come back... so I tried not to panic, "it's only scar tissue, it will go away in a couple of days" but after a week it was still there, so I made an appointment to see my GP, she will tell me its only scar tissue and there's nothing to worry about... but when i got to the doctors, she was worried and sent me back to the jasmine suite......... oh my god... it's history repeating itself
I have two days to wait till I'm at the jasmine suite again... and I can honestly say i must have spent one and a half of those crying.
Friday comes and I go to the jasmine suite at the hospital.... I don't have to wait long, the doctor examines me, and she feels two lumps... I just thought i was getting paranoid and imagined a second lump..... but I'm not that lucky.... she wants me to have an ultrasound.... so I get taken round to where they do the scans, and they sit me in a private room..... that scares me even more than if they had put me in the main waiting room....... after what seems like an eternity, they call my name, and the scan begins..... the guy doing the scan says he see's nothing suspicious, I have got something called NARCROSIS (I think that's how you spell it) it turns out its just the tissue inside breaking off and dying... but to be honest I didn't hear much after he said IT'S NOT CANCER..... i just started crying... sheer relief
I went back in to see the doctor again and she explained that I have to go back in 3 weeks to check if the lumps have dispersed naturally, and if they haven't, I will have to have them biopsied to check for any calcification.... because calcium is an early warning of cancer returning,so I am back on the 15th.... It's just another thing to worry about.
The one thing I have noticed is that Cancer makes you look at things so differently... It brings a mortal fear into your life that never goes away and it really is a continued rollercoaster of emotions.
But this latest scare did make me take a good hard look at my life.
If two different types of cancer didn't keep me down.... then why should I let my husbands betrayal keep me down.
I AM A SURVIVOR........ I have survived a killer disease and I have survived the ultimate betrayal... and I'm still here and I'm still smiling... That's got to count for something.
So I now get up every morning and make an effort... I put my make up on... paint on a happy face, so to speak... and I live.... I have started to go out.... even a trip to the shops is a normal thing for me now......... I still have my bad days.... but there are more good days than bad ones now.
I have got my reconstruction starting at easter, but I will tell you all about that tomorrow.
For now... I have to put my boobs on... and go to the hospital for another bloody injection.
But the one thing I know from now on is....... I am going to start living again.... WHY?????
Because I can. Xxx

Saturday, 6 November 2010

Saturday 6th November

Well it's been just over a month since i put anything on my blog,  so I think it's time to catch you all up on what has been happening.
I went back and finally saw the oncologist (Dr Ramm) he told me that I am herceptin negative so I don't need to have chemotherapy, he has put me on Tamoxifen tablets for the next 5 years and I am going back next month to start having a depot style injection in my stomach for the next 2 years to bring on temporary menopause, to stop my ovaries producing estrogen.
I have had my chest cavity (the space where my breasts used to be) drained 6 times so far, the first 3 times the fluid was a orange/yellow colour but clear. on the 3rd time, Miss Rogers injected a steroid into the cavity to stop my body producing the fluid, and told me to come back in a fortnight, Then the right side sounded like a hot water bottle, you could actually hear the fluid moving around, but I guess the noises meant there was air in there as well, but the left side filled up as usual, and I felt really ill, high temperatures and terrible hot flushes, after only a week, Dave rang the hospital up and arranged for me to go in and get the left side drained, when we got there, the nursing sister stared to drain the left side and the fluid came out all cloudy..... in fact it looked like cold tea.... She went and spoke to Miss Rogers and came back with a prescription for some heavy duty antibiotics.... and told me to go back the following week.
I was still feeling crappy, and the scar went a bit red in the middle, but after a couple of days, the scar went back to normal.... I went back the following week and told Miss Rogers I was feeling much better, she inserted the needle and the cannula, but nothing came out, so she tipped it down and a blob of brown stuff came out, Miss Rogers started panicking, she attatched a large syringe to the cannula and started to pull out syringe full after syringe full of brown muck, the colour of strong tea and the texture of mud, she said my chest wall should be bright red with an infection that severe, and she did tell me that if Dave hadn't got me in last week I would have been admitted immediately...... another weeks worth of antibiotics..... The following week, I went back and had the left side drained and it was like cold tea again..... so I am hoping that this is the end of the infection....... and that was Tuesday this week, so we are up to date on the medical stuff now.
the physical stuff I can handle, it's the emotional effect of losing my breasts that I am really struggling with at the moment.
Dave is being fantastic and he keeps assuring me that it doesn't matter to him..... and I know he really does mean that.
But it's how it's affecting me that is a problem.... I genuinely cant get my head round the fact that I haven't got breast anymore.
Friends often ask how I am getting on, and I tell them that I am ok, in fact I think my exact words are.... I'm getting there!
But I'm not...... when people ask how I am, I just want to scream at them... HOW THE HELL DO YOU THINK I AM?
My mum says she knows how I feel because she had an operation to remove 2 massive tumours in her stomach............ but she doesn't.... she can't..... Mum's operation was to remove something that shouldn't have been there..... I know that my operation was to remove the cancer..... but they also removed part  of my body that should have been there...... it should still be there.
When I have tried to tell the breast nurse at the hospital how I am feeling, she just tells me that I am having reconstructive surgery next year and then I will have breasts again.... but what am I supposed to do until then? How do they expect me to cope until then?
Do you know, when I first found the lump, they couldn't do enough for me.... but since I have had the operation to remove the cancer and remove my breasts..... I feel like they are not bothered.... the after care is lousy... all they have offered is an opportunity to attend a, once a month meeting, called "life after breast cancer"........ As far as the hospital is concerned, I feel like I have been thrown in the bin with my breasts.
I can't look at my scars in the mirror... I feel deformed.... I don't feel like me anymore.
Last week we went to a wedding..... and I just stood and cried, everywhere I looked there were cleavages on display.... Dave just looked at me and said "it's too early for you yet, isn't it?" he was brilliant and after only an hour he took me home.
I know I am miserable but I can't help it...... I am so unhappy with the way I look and I don't know how to change the way I feel.........
This bloody cancer has cost me my lovely hair and my breasts......... I have never been a slim woman, even as a teenager, my parents used to call me dumps (short for dumpling) and my lovely long hair and my cleavage used to make me feel feminine.... now i look in the mirror and I feel butch... even make up doesn't make me look feminine.
I know my dark moods are effecting the whole family..... I know Dave loves ME, but every time we talk about my new body image, I just start crying, and I don't want to be a misery guts wife... I want to be that happy upbeat wife I used to be.
I just want to feel like a real woman again.
I went on the cancer chat site and tried telling them how I feel, the people on there are amazing, and they explained that each of them feel very similar and they think I a being very strong....... but I don't feel very strong, I feel like a pile of snot and tears.
I understand that I am in a downward spiral.... but I don't know how to get out of it.... I don't want to feel like this, I don't want to hate the way I look.... but I don't know where to turn next.
I have cried almost all the way through writing this, and I have realised that writing this blog is probably one of the best things for me.... because it helps me get it out of my system.... I will definitely be writing in here more now... I think I need to.

Friday, 8 October 2010

Tuesday 5th October

Why can't I stop crying?
I seem to be crying all the time for no reason, the doctor gave me some new painkillers yesterday, but they still don't take the pain away, I feel sick when ever I try to eat anything and I am constantly having hot sweats.... how much more of this do I have to take.
I rang Macmillan this morning to find out when my grant is coming through because I desperately need some new clothes (all my old ones are fitted or low cut) and all I did was cry down the phone at the poor woman.... when she told me that my grant application wasn't even on her system, I just cried even louder...... god, I'm a mess.
I have to go to the hospital today to get my chest drained and find out about what happens next.... but to be honest, I don't want to leave the house.
I have no breasts and it feels like everybody is starring at me... I feel deformed and I don't feel like a woman... I feel like a freak.
I tried ringing the hospital to speak to Barbara, but I just cried at the receptionist who answered the phone, so she asked if I was alright "No....  just want to talk to Barbara"... the receptionist said she would get Barbara to ring me back. about 5 minutes later the phone rang, but Dave had to answer it because I was sobbing my heart out..... he explained to her how I was feeling and asked if I had to come to the hospital as I don't want to go out... but she said I have to come in.
When we got to the hospital, we walked into the Jasmine suite, I was, as usual, hunched over holding my the front of my shirt out (so nobody could see I was deformed) Dave has had arm around me, we were only waiting about 2 minutes and we got called in, (Dave says I should cry down the phone more often, I must have scared them) Jenna (the registrar) came in with Pet (one of the nurses) and she asked me if I was ok..... More tears, floods of them, they were brilliant, they gave me tissues and just listened, they then went on to explain that the way I was feeling was normal... "why don't I feel normal then" I cried, "because the tears show us that you understand what is happening " Jenna went on to explain that because I have coped so well with everything that has happened to me in such a short length of time and because I have been doing so well that they were a bit worried that I was in denial..... but the tears proved that everything was sinking in... Jenna and Pet went on to drain my chest, still a lot of fluid but not as much as last week, still lovely and clear so there is no sign of infection.... Jenna then went on to tell my that I didn't have to have the intravenous chemotherapy, I was going to go on a tablet chemo... great news, I get to keep my hair (I think I would rather lose my hair and keep my boobs.... my hair will grow back)
Jenna then went and got Barbara, Barbara was brilliant, she said she would chase up the grant people and make sure it got sorted... Then Pet said, "can she try a softee?" Barbara explained that a softee was a fake breast made of foam that I could wear inside my bra when I went out... she then took us into a room and we just talked... about everything, she explained how they were one breast care nurse short because of funding issues, so her and Dave had a chat about Dave doing some fund raising for the Jasmine suite... and then she started to look through the bra's she had and got some "softee's" out... to be honest, they looked a bit like airline pillows, but when she helped me put the bra on with the "softees" in.... I couldn't believe the difference.... I know they weren't real, but I didn't feel deformed anymore. she also showed me the silicone breasts that I would have when my wounds were fully healed, I was surprised at how heavy they were, but she said it was so they wouldn't ride up in my bra like the softees would... she made me an appointment to see my oncologist next Tuesday, and we left.
I could not believe the difference that these 2 bits of padding made to me... They gave me so much more confidence, I didn't feel deformed anymore, I could walk around with my head held high again... who ever invented these things deserves a medal.
And that little bit of confidence changed me........... it gave me strength, a strength to carry on. 
We went home and had a cuppa and we told our daughter everything that had happened she looked so pleased, but to be honest, I think she was just happy that I had finally stopped crying .
Dave said he had to pop to the shop to get something for tea.... and I think I surprised us all when I said I would go with him. Dave said "come on then gorgeous" so I smiled back and said "hang on for a minute while I get my boobs" and we all fell about laughing.
We got to Morrisons and got out of the car and I had to laugh and tell him to wait, "What's up?" he asked, but also started laughing when he saw the the seat-belt had pushed one of my "boobs" up nearly to my shoulder.
So today I learned that by telling the nurses and doctors that i am miserable doesn't make me seem weak, it makes me normal.... and it shows them how they can help me.
And now the crying has stopped and this meltdown is over, I feel so much better for it, maybe I needed to let it all out.... all I know for definite is, with Dave my my side and my fake boobs on... I can survive another day.

Monday, 4 October 2010

Sunday 3rd September

Every day I seem to get more and more depressed, I think that could have a lot to do with the fact that my pain killers don't seem to be working, even though I have doubled them up, and I still can't sleep... In fact the last decent sleep I had was those few hours when I first got home from the hospital.
Dave is being brilliant, he is constantly telling me that he loves me and he keeps cuddling me and kissing me and showing me that he loves me.... I feel so rotten because he is being lovely and I am just so miserable... it's not fair on him.
Loads of people on facebook really care and often ask me how I'm getting on, and I tell everybody that I am fine and I'm on the mend..... One of the ladies on the cancer chat site I'm on, left a message asking if I was ok and telling me that she would be there when I was ready to talk.... So i wrote down what i felt and started crying... Dave came over and asked me what was wrong and it all came spilling out, he listen, cuddled me and kissed away my tears, he never made feel stupid or anything, he was brilliant, so he said "Why don't you write it down in your blog? do what you do best and write, it might help."...... So here goes...
Before the operation and everything was hurry hurry and lets get this sorted... but since the operation, I feel like they have just chopped my boobs off and thrown me away.... ok, we got the cancer, now go away and pop back now and again to get your chest drained.... Nobody has actually said anything like that, it's just the way I feel.... I don't even want to go outside because I feel so deformed, When we went out I wore a baggy shirt and kept pulling it out at the chest so nobody could tell I had no breasts.... it's so hard to explain how I feel........ I don't feel complete.... I just feel broken.
I just want to cry and when people ask how I am, I just say to Dave, "Why do they ask? they wouldn't know what to say if I told them how I really felt"
I don't know why Dave put up with me........... yes I do, it's cos he really does love me.... I feel like I am being a lousy wife, it's been nearly 3 weeks since my operation and I am still crying because I haven't got any breasts...... I know that also means I haven't got anymore cancer either, so why cant I focus on the good points?..... Why do I just want to cry all the time?
Everywhere I look there are breasts and cleavages on display, on television, in the paper, on the adverts, women just walking down the streets, even teenagers coming home from school... It just makes me more aware of my own body's shortcomings.
I think we can safely say that I am having a wobbly day... or even a wobbly week, I am definitely on a downward slope on this rollercoaster.
I have just read this back to myself and it reads like the ramblings of a mad woman.... well I know I'm not mad, I'm just very sad..... I want everything to be the way it was before I got this bloody cancer... I want my breasts back..... I want to be that positive, upbeat, self confident woman I used to be..... I don't want to be this me anymore..... I want my life back

Tuesday 28th September

Today is the day I get the results from my sentinel node biopsy, and we will also find out what happens next as far as my treatment goes.
As we get to the hospital and start walking to the Jasmine suite, I tell Dave that I can cope with anything, Chemotherapy or radiotherapy, just as long as it hasn't spread.... He agree's, he said no matter what comes next, I won't be facing it alone.... and I know that he means that, whatever happens next, he will be right by my side all the way.
We get to the Jasmine suite and sit down to wait, We are waiting about 25 minutes before we get called in, the nurse takes us into an examination room and leaves us there for another 10 minutes.
The door opens and in walks Miss Rogers, Jenna and another woman who introduces herself as another breast nurse who is standing in while Barbara is on holiday..... Miss Rogers asked if I was having any problems, so I told her I had a bit of swelling... Well to be honest, it was more than a bit of swelling... it looks like I'm growing a new set of boobs! But Miss Rodgers told me that she could drain the fluid out, but she had my results.... did I want them first?
Yes please, So she told me that the Lymph nodes that they had taken out were all clear, and they got all the cancer out.... I felt sick with relief and then I started to cry, God what a girl! I cry with bad news and I cry when I get good news.... but it was a different type of crying, it was crying with relief, tears of joy... I felt like somebody had lifted a huge weight off my shoulders. I asked about whether I would have to have chemo or radiotherapy, She told me that she didn't think I would have to have radiotherapy but she didn't know if I had to have chemo or not... Jenna said she would drain the fluid from my chest, so Miss Roger said she would see me next week and she left.
Jenna said she had asked to come in while miss Rogers told me the news so she could see my face, bless her, unfortunately she is moving to Sheffield hospital next week, but she will be back in the breast care unit just in time for my 6 month check up.
Jenna drained the fluid off and I must admit, it was totally painless, but I was surprised at the amount of fluid that came out, but Jenna said it was lovely and clear, which meant no infection.
I got an appointment for next Tuesday and said goodbye to Jenna.... shame she's leaving, she is lovely. 

Monday 20th September

Today is the day I am supposed to get my drains taken out, even though they were really full yesterday (over 300ml in each) and they are pretty full today as well (250ml in each) but they are so uncomfortable that I just want rid of them..... the district nurse has been coming everyday to empty them, but I'm hoping when the drains come out I will be able to get comfortable and maybe finally get a decent nights sleep.
the district nurse turns up, her name is Sue, I try to tell her that there is still loads of fluid in the drains, but she's not interested, as far as she is concerned... the drains come out today! Well she's the nurse, she knows what she's doing..... at least that's what I think until she asks me if I have a stitch cutter.... "What the hell would I be doing with a stitch cutter?"
Sue starts getting everything she needs sorted and even manages to find a stitch cutter of her own, then she says we are ready to start,
Dave comes and holds my hand as neither of us has ever had drains so we don't really know what to expect, but it was surprisingly pain free, but it was definitely one of the wierdest feelings when she cut the stitch holding the tube just below my dressings, the she started to pull the tube out, I was expecting it just to pop right out of the little hole... i certainly didn't expect to feel it moving just below my collar bone, and then I felt it as it moved down my chest until if finally came out.... what a strange experience, I think the only thing I can think of to compare it to was when I was pregnant and the baby kicked, a movement inside your body somewhere you are not expecting it to be.... after that Sue put a little dressing over the hole the pipe had left, and then repeated the process on the other side.
But.. "Oh my god," did I feel better after they were out, but it took a bit of getting used to, not having my 2 little bags everywhere with me.

Friday 17th September GOING HOME

Another bad night... hardly any sleep and generally feeling crappy.
Everybody in my room went home yesterday so I am all on my own in here, I heard the usual noises about 6ish but nobody came to my room, so at about 7.30 I got up and went looking for a cuppa, after speaking to the nurse it turned out that they had forgotten me when they too the drinks round earlier.... bloody typical!
The surgeons and the registrar came to see me and are really pleased with my progress... In fact they are so pleased that they are letting me go home today, I will still have my drains in and I have to take it easy, But they are letting me go home.... As soon as they go I ring Dave, he is so pleased, so I tell him to get a bit of rest and tell him when to come and pick me up.
The room I'm in starts filling up with new patients in for day surgery, so I dont feel so alone anymore, and in no time at all, Dave turns up with a big smile on his face, he's came to take me home.
He helps me pack all my stuff away and get dressed, and then we wait for the tablets to come up from pharmacy ... after another 2 hours of waiting, my tablets arrive and I say goodbye to the nurses and all the staff.
I am so happy to be home, but I have to admit, I am so knackered, I've only come home and I feel like I've walked for miles.... it's strange how the body works.
I know I will recover better now I am home, I won't be worrying how Dave and the kids are..... Well to be honest, I wasn't worried about the kids, I knew Dave was dealing with them, but I was worried about Dave, me being in hospital was the first time we have spent a night apart since we moved in together... I missed him and he missed me.
Even when I went upstairs for a lay down, knowing he was only downstairs and would come running if I shouted him.... I was able to relax and immediately fell asleep for about 3 hours.
It was so good to be home.