Thats not me!

Hi, I have been meaning to write for a long time to say that I am still here and doing well.  So apologies for dropping off the face of the earth.

I have been prompted into writing tonight after my face was plastered over an online article about gay women suffering from discrimination during breast cancer treatment and they have used my photo without my permission.   I am happy to raise awareness for Breast cancer in anyway that I can, but I do not want it said or implied that I faced discrimination because of my sexuality as I genuinely don’t remember it being an issue.

My partner at the time, lived about an hour away, so she wasn’t able to be there at the majority of my treatments or come and see me when I was in hospital.  So I cant comment on what it would have been like for my girlfriend to visit me, I don’t think I was asked about a boyfriend during my stay, certainly not by the staff, possibly by the patients in my ward, but then the majority were two generations older than me, and I understand that they have very different views on sexuality as that is how they are raised and I am not going to ask someone I don’t know to accept my sexuality and be ok with it if it is not what they feel.

The nurses and Drs at the hospitals were fine with me, I didn’t hide my sexuality.  I may have referred to my “partner” rather than just saying my girlfriend, but I don’t feel its something that needs ramming down everyones throat.  If I am asked directly then yes I would say I have/had a girlfriend.

ah well… rant over!    (during my rant and several tweets and postings later – the photo has been changed!)

http://www.gaystarnews.com/article/why-gay-women-are-suffering-breast-cancer-care101113

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Tis Only Me!

I thought I had better do an update on how the fundraising went for the End of Treatment Celebration Auction and Party…. well… it went REALLY WELL!!  I should get it to over £1000 once everyone has paid which is fantastic!  I am so proud of my friends and family for all that they have done and their support!

The party raised £333 roughly on the night and the auction raised £611 (I think) and since then I have had a few more donations which is awesome.

The party went really well, I had a good turnout of friends and family and as far as I know most people had a good time, I have to admit the party was a bit of a blur as the first section I was running round like a headless chicken trying to get stuff sorted (I should learn to delegate more!) and then once all the official business was done I hit the shots hard and the rest of the night was a different kind of blur ha ha!

But I enjoyed myself….  I let my hair down (yes its growing and I have a nice fine covering of very grey hair now lol)

I did a little speech and made myself cry, I tried thanking my Mum for coming to pretty much every chemo treatment I had and waiting for hours and hours with me and I broke down and couldnt get my words out.

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I then presented her with some flowers and made everyone in the room cry too lol!

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Once I had done all the thank you’s (although I am sure I had forgotten a few)  I played this video and made people laugh and cry ha ha!

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After this we got dancing and threw some crazy moves 🙂

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ha ha Ruth will kill me 🙂

I was so grateful for all the love and support that my friends and family have given me over the past 11 months, its nearly a year since it all began and I really feel that the whole experience has taught me a massive life lesson.  I want to do something with my life and not regret living one single second.

I have another adventure up my sleeve that I will be revealing soon, I just need to work out some details first 🙂

This weekend I am taking part in Race for Life so will upload some photos from that if I get a chance as I am planning to “horse around” ha ha xx

I’m fundraising…. twice

I know that some people would consider me one of those annoying people who is constantly fundraising and yes I have to put my hands up and admit to being one of them but the way I look at it, is that even if I raise £1 that’s £1 that my chosen charity wouldn’t have had before.

So I have decided to combine the celebration of my “End of Treatment” party on the 1st June with a fundraising opportunity. So on the actual night I will be holding a raffle and will be collecting donations but my biggest fundraising tool is an online auction that I am running currently.  I have been asking friends, relatives, local and national companies for help with donating items that can be sold online.  I have been astounded by their generosity and have managed to get some fantastic items which can be found at: http://www.tiggertots.co.uk/auction

Information on the whole event and reasons why can be found here: http://www.tiggertots.co.uk

 

Ok my second fundraising event is a bit more regular!  I am taking part in Race for Life at Gloucester Park in Gloucester on Sunday 23rd June 2013.   I was lucky to be asked by Cancer Research if I would be willing to use my story to feature in an article about Race for Life so last week I was in the local papers!

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Anyone wishing to sponsor me please do 🙂 – http://www.justgiving.com/Amanda-Westlake1

Please help me in anyway that you can, it will mean such a lot 🙂 xx

 

Catch Up

I know I havent written anything for quite some time on here so I apologise for that, I have found the last few weeks have gone so fast it has been a blur and to be honest I dont really know if I am coming or going!

I am now three weeks clear of all of my treatments!  Wahoo!  <<does a little dance>> I finished my Radiotherapy on the 24th of April.  I have to say that I found the Radiotherapy to be a piece of cake compared to the chemo.  Yes its inconvenient going in every day especially at middle day, but the appointments were quick and on time.  No more waiting for hours in the depressing Oncology Waiting Room.  The staff and nurses were lovely, it felt like there was more interaction with them than before, but I think that was more to do with how I was feeling, I was more relaxed and didnt get nervous before the treatments like I did for my chemo.

Each session took around 10 mins, with the exception of the first couple which took longer as they were setting up and preparing me and describing what is going to happen.   I didnt find any of the Radiotherapy process scary, in fact I was almost captivated by the machines and the way they move around you and the technology is amazing!

I found myself quite often escaping to another place in my head and would actually almost doze off at times, even the nurses commented on how relaxed I was.  There is no point in getting worked up, there is nothing to worry about and it just makes it uncomfortable if you are tense as the position you have to lie in isnt the most natural feeling in the world 🙂

I found walking out of the hospital on my last day quite emotional, I had been told that quite often people find it scary when you finish as there is no structure with appointments and being around health professionals so much.  I must admit I poo pooed this, but have to admit it is real.. I walked out of there thinking…. what do I do now…..  For a brief moment I felt quite lost.

Luckily I am a positive thinker and also keep myself busy with lots of things, such as getting back to work, organising a fundraising “End of Celebration” Party, being part of the committee for Gloucestershire Pride and so on….. I think sometimes I take on too much, but other times I just love it!

I have found I have good days and bad days emotionally, mostly good but when I get tired I get quite down as I feel frustrated at not doing what I want to do. I have returned to work now, my first week was a 4 dayer and I did mornings only and that was ok.  I felt ok during the week but the weekend, wow I was hit for six!   I was as much use as a chocolate tea pot!  I had all these plans of tidying the flat so that I can get an estate agent round to get it valued.  I am really keen to move now, I am desperate for a place with a garden and have seen a place I fell for so am itching to get things into place but tidying my flat is my nemesis!

This is my second week back at work and I did my first full day yesterday and boy oh boy did I feel tired afterwards!  I had to man up and get my tired butt to choir, as I have joined a choir in Cheltenham that is part of the Everyman Theatre.  I am the only “true” newbie this term as everyone else has been going for some time now so clever me joins when they have a massive concert happening in July!  All 8 everyvoice choirs are joining on the main stage to perform songs and guess which choir pretty much sings every song…. yup mine!  So I have shit loads to learn and I am struggling so any tips from my actor chums on how to learn lyrics would be most gratefully received!

Links to the show: http://www.everymantheatre.org.uk/m-shows/ev-one-voice-everyvoice-concert/

Well that’s it for now I am going to write a post about my End of Celebration Fundraiser.  🙂  Ta ra xx

Reaction to the last chemo

Well the last post was about my last treatment of chemo and so i was very happy about finishing chemo but as per most thing with chemo its not always over when you think it is.

Saturday I didn’t feel too bad, Sunday morning I was ok but by Sunday afternoon I started to feel very nauseous and tired. Monday I didn’t get out of the flat apart from a brief walk to some grass to let lily out. I was glued to the sofa, dozing on and off all day. Tuesday I felt a little better so was up and about and Lavinia and Caroline came to see me which was nice. Then I went out for a meal with Mum & Ron as I’d booked a meal at a local pub a few weeks before as I’d been given a Living Social voucher for a meal for two etc. The meal was lovely and the Every Voice Choir were performing there that night which was good as my friend Libby is in it and I am signed up to join them next term, so felt it was nice for Mum and Ron to see what I was going into.

I got home about 10ish and felt fine, pootled about and went to bed.

At 2am I woke up with really bad stomach pains and stomach cramps, I then spent the next 30 mins with an upset stomach and I’d never had anything like that before, I thought my stomach was trying to tie itself in knots! I thought it could have been a reaction to the amount of garlic I had eaten for my meal as I’d had creamy garlic mushrooms and then haddock goujons with a garlic dip, which was a lot stronger than I was used to.

So I finally got into bed and was there for a few minutes before I had to rush off again.

After that I can’t really remember if I got really cold then or whether that was later, but at some point I felt so cold and was shaking so hard I was actually scared. I couldn’t get out of bed to try and put some more clothes on, my feet felt like blocks of ice and my head was freezing too.

I knew I should have rung the chemo helpline, but to be honest I was scared, I didn’t want to be told that I had to go in, I knew if I went in they would need to take blood tests and it would be likely that I would need a cannula put in and the mere thought of this made me physically sick. Plus it was around 4am and I knew that if they said I had to go in, I would have to ring and wake either my sister, my mum or dad to take me in as I wouldn’t be allowed to drive myself. So I tried to ride it out.

I remember at one point trying to cuddle lily for warmth but she felt cold, so I knew I must have a high temperature as normally she is a really good hot water bottle, she radiates heat big time 🙂 Even lily got fed up that night of me trying to cuddle her as I was shaking that much and my teeth chattering, it must have felt like cuddling a pneumatic drill 😀

Eventually this stopped and I started to warm up and managed to drift off to sleep, I then work just before 6 in a pool of sweat, I felt a bit more awake so took my temperature and it said 39.3 which I knew wasn’t good. I waited a few mins and did the same in the other ear. 39.3 bollocks!

I was still too scared to ring the chemo helpline, so text my sister as she was normally awake around 6 and she was, I told her what was up and she rang me straight back. She told me I had to ring the chemo helpline and I got upset saying I was scared that they would keep me in and I’d need a blood test etc and just saying it out loud made me heave and I was instantly sick… (Poor Lavinia had the phone but down on her at that point!) She gave me a few mins and then rang back and said I had to ring the chemo helpline so I said I would.

I rang the chemo helpline and explained what had happened and was told off for not ringing in the night, and that with my temperature being what it was I really needed to be in with them within the hour. I explained that I would try but my family didn’t live that close they they were all about 20-30 mins away. (It’s times like this when I do feel very aware of living on my own and although I have the most amazing friends in the world, ringing them at some ungodly hour to take me to hospital just seems too much)

Lavinia rang me back and I updated her, she said she could take me in but wouldn’t be able to be with me within an hour, so I rang mum, she was awake and up thank god, but I knew she had a busy day planned with taking my great aunt to a specialist, so she said to ring dad. I rang dad but couldn’t get an answer. Mum then rang back and said she was on her way, then dad and Lavinia both rang (one on landline, one on the mobile) so I was able to explain mum was on her way.

This is one thing I hate about what is going on, feeling vulnerable and not able to do things myself. I hate having to put my family and friends out and calling upon them to take me into hospitals etc I feel really guilty and I know I can’t help it but it doesn’t make it any better.

Well mum arrived and we got to the hospital just after 7. We knew we had to go in through A&E but Lordy lord, I’d forgotten how far it was in the maze of the hospital to find Lilybrook Ward, which is the chemo helpline area. I was quite out of puff by the time we got there, they explained they were full up in the main helpline area so I was put in a small side room with 3 comfy chairs in so Mum and I went in there.

Well they came to take my bloods and the nice nurse who did it remembered me from a previous visit and knew I had problems with my veins and as she had problems herself with giving blood etc, she knew some little places to try so managed to get one on the second attempt. It didn’t hurt and it didn’t upset me, so I was happy.

A bit later they came to put a cannula in and I was sick again, so they gave me some time and came back, the first attempt failed so the cannula expert was sent in. She had to go in to my hard veins so that did hurt alot but I was relieved she got in and was able to use the cannula. She hooked me up to antibiotics and so I had to have all of that then they switched it to saline and I don’t know what happened but feeling the saline go in made me sick again. It was cold and just made me feel really bad.

Eventually it settled down and I had to let that go in. Now I’m getting a little hazy as I wrote the majority of this a few weeks ago and had to stop as it felt a bit wierd and I felt sick.

Basically I ended up having to stay in over night and had 3 litres of saline pumped into me. I was up and down like a yoyo in the night going for a wee as my body isn’t used to all that fluid lol.

I was told I could go home the next day but wasn’t allowed to go home on my own so I went to mums for a few days.

Well that’s it for now. I need to move on to the next chapter… Radiotherapy!!

Fec’d Right Off

So today was meant to be my last chemo session, but as I said in my last two posts I was worried that my white cell count wouldn’t be high enough and I was right to be worried. They were not high enough and they wouldn’t let me have treatment.

So I have to wait till next week now and that also means my radiotherapy dates will go back too.

I have had a little cry and was pretty pissed off but am calming down now, I can’t do anything about it, just have to hope I am ok for next week.

So no special celebratory sandwiches for next week, I made special sandwiches for mum and I to mark the occasion as mum has been to every chemo treatment I have had. I wanted this one to be special so packed a monster lunch with a monster sandwich with ham, cheese, turkey, mayo, tomato, cheese and pulled ham spread etc I was going for one of those American style mega sandwiches lol. Oh well it can be a special sandwich for International Women’s Day now lol xx

Ladies and Gentlemen its time for Radiotherapy Planning

Well tomorrow is scheduled to be my last chemo session, I feel a strange sense of relief that its nearly over, then also pretty nervous about it as the last few chemo sessions have made me feel pretty yukky, which is understandable as I knew that the more sessions I had the greater the impact would be.  But I know that compared to a lot of people I am lucky that it hasnt affected me hugely, but then if I look at some of the stuff thats happened, I know it hasnt been the easiest of rides, but the main thing is that I have made it through so far and only have the one to go.

I am hoping and praying that my chemo will take place tomorrow, I am a little nervous as I have had the start of a cold for the past few days, but I am hoping that my white cells must be dealing with it as the cold hasnt progressed into a full cold yet.  I just hope there are enough of the little buggers to get the chemo tomorrow!  So attention little white cells, I want you all present and correct for tomorrow ok!!

Well today is my Radiotherapy Planning day, I will have my first CT scan and then they will mark where the radiotherapy will take place, so that each time I come in for radiotherapy the machine will line up with these dots they put on my body and hey presto I should be out within ten minutes.  Well thats my understanding anyway.

I went in last week for a chat with the Radiotherapy trials nurse, as I have been invited/accepted to take part in a Radiotherapy Clinical Trial. This is paid for by Cancer Research UK which is a cause very close to my heart so I am glad its something for them, as I have done a fair bit of fundraising for them over the past few years.

Well the clinical trial is called Import High and today once I sign to say I want to do it (which I will) I will get entered into the computer and allocated at random one of the following radiotherapy treatments:

IMPORT High is looking at radiotherapy after surgery for breast cancer in women with an average or above average risk of the cancer coming back (recurring).

It is recruiting 840 women in the UK into 3 groups

  • Group 1 has standard radiotherapy of 15 daily doses of radiotherapy to the whole breast and 8 doses of radiotherapy to the area of the breast where the tumour was
  • Group 2 has a boost dose of radiotherapy to the area of the breast where the lump used to be. At the same time a medium dose of radiotherapy is given to the area around this, and a low dose to the rest of the breast. The treatment takes 3 weeks.
  • Group 3 has a similar treatment to group 2, but the boost dose is a bit higher.

More info on the trial can be found here if anyone is interested:  http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/what-is-the-import-trial-for-breast-cancer

Now initially when I was given my radiotherapy schedule it had me down for 3 weeks, starting on the 4th April and ending on the 24th April so I thought I was accepted for either Group 2 or Group 3 trial, but I found out last week that they just schedule me in for 3 weeks as thats the minimum time I will need radiotherapy, so I could end up with the 4.5 weeks anyway so I was a bit disappointed with that news.  As the thought of driving in to Cheltenham Mon-Fri daily for 10-15 mins of Radiotherapy is a bit pants!  I’d rather the higher dose 3 week schedule and get it over with, even if I do end up with a glowing sun burnt boob lol 🙂

Apparantly I should find out tomorrow what schedule I am on, so will have to keep my fingers crossed.

One thing I am looking forward to is the CT scan today, I have never had one and I have seen it on the tv loads and find it fascinating,  Apparantly they scan my breast to see the exact area that the surgery took place and apparantly there should be some “clips” left in the area the tumour was removed so that the radiotherapy planning can line up with them to enable them to precisely target the right area.  I have to admit I nearly jumped off my seat when they told me that, what do you mean there are clips left inside of me, so I plan on finding out more today!

CT Scanner aka The Stargate!

Anyone else look at this and think of the Stargate TV Series?? or is it just me??? I can pretend lol

I will be so glad when the chemo is over, to start with I found I coped with it pretty well, but now the thought of that toxic crap going into me makes me feel physcially sick.  My right arm is knackered from it, my veins are hard and lumpy, even the main vein down my arm is hard.  They dont tell you about those side affects when you go in.  I wish I had known as I would have fought for either a PIC line or a Central Line if I had known.  I cant stretch my right arm out fully as the vein is quite sore and feels like an elastic band that wont stretch, I have been told it will get better but can take around a year to heal.  So it makes me very aware how toxic that stuff it, no wonder my veins shrink when the needles come out.  They cannot use my left arm as thats the side I had my lymph nodes removed so that arm is shouting hey use me, save the right arm but the Drs and Nurses say Noooooo.

I just hope it all goes ok tomorrow, as I am an emotional wreck when I go in now, I have cried the last couple of times when they are struggling to get my veins for either the blood test or the actual chemo.  I dont like getting upset there as there are so many other people going through alot worse or even new people coming in for the first time, they must be nervous as hell, they dont want to see someone crying as it would upset them, but sadly my control on my waterworks (hmmm I mean tears not bladder lol) is useless, they just keep making my eyes leak lol.  I have no control on them 🙂

Right time to get dressed and prepared for today, lots to take in and I must ask questions 🙂

Toodle Pip!  🙂 xx