LIFES RICH TAPESTRY

And here's another oops!!!!

2008-06-24T16:24:00.003+01:00

Was it really last year that I wrote my last entry???!!!??? OMG (which means Oh My God by the way) I apologize profusely... I don't know who to but thought I would anyway!

I've been a bit busy since I last wrote (she says grinning like the proverbial 'cheshire cat') In February Paul asked me to marry him, and I; being eager as I am not to disappoint, of course said yes. He really is the most special man (he needs to be too!) and I can't wait to tie the knot. It won't be until at least next year though as I need to move over from SE London to Hammersmith in West London first. I'm trying to do a council swap with somebody but funnily enough there isn't anybody who wants to come to 'sunny' Deptford from Hammersmith..... fooolsssssss! In the meantime I'm finding in increasingly difficult to be patient! Patience is not one of my main virtues. Ha!

Haven't been doing enough campaining lately either but that's something I hope to rectify in the not too distant future aswell. I have a few ideas up my sleeve.

Anyway know it's been short but just thought I'd dip my toe... have you noticed how many little sayings I've been using... a bit worrying really!

love
Jen x

Breakthrough Advert...

2007-11-11T18:09:00.000Z

You might just recognize the ditzy chick with the bad hair day on the beach, but the real point is that there needs to be as much funding as possible going into breast cancer research as we can. There really are some exciting things happening in the laboratory at the moment and I just hope they see the light of day.....

love
Jen x

Ooops... it's been a while!

2007-09-29T01:48:00.000+01:00

Also it's very very late/early.... but was just surfing round and noticed that I hadn't blogged in AGES! so here I am with my boring inane banter again....

I'm going to be 39 tomorrow. Most people would be filled with ''oh no, woe is me'' and crushed by the thought of reaching such a ripe old age; not me, I'm thrilled! Just over 2 1/2 years ago I honestly wondered if I'd make it this far, and what would my life be like if I did? I could never have imagined even smiling ever again, let alone having the audacity to actually be happy. But here I am! On the verge of 39, and happy as 'Larry' (who the heck Larry is I don't know, but have heard other people talking about him so thought I might as well too)

I'll be spending my birthday with the love of my life Paul and my fabulous Son Sam. I consider myself to be very fortunate.

Oh and looks like I'm going to be on the tele again. Look out for an advert by Breakthrough from 15th October. I'm the one looking out to sea (and looking like a wally) if they use it this time. Ha ha...

love
Jen x (the sleepy one)

Ok last time......

2007-07-05T13:49:00.000+01:00

Right in the interests of your sanity and to save you all from enternal boredom (oh and also because it's a done deal and there isn't any going back now....!)

I STILL DO NOT SMOKE HA HA!!!

IT'S BEEN 5 WEEKS NOW, I CAN FINALLY TAKE A DEEP BREATH IN WITHOUT COUGHING (WHICH IS ALWAYS A BONUS I FEEL!)

Right now on to other things.....

I'm off to the London Live Earth concert this weekend yay! Paul and I have some great seats and Tina is taking Sam to the standing area (I wouldn't have been able to stand long enough to be able to do that and Sam has always wanted to)

Before that though I'm just about to leave for a ''job related interview'' at the local job centre.... I think someone thinks I should be able to work.... yeah ok then.....

Love
Jen x

Me?????..... chimney????

2007-06-06T11:21:00.000+01:00

What's the difference between me and a chimney........

I DON'T SMOKE!!!!!!!!!!!!!!!

Love (the very happy- can you tell?)
Jen xxxxxxxx

Still yay!!!

2007-06-04T20:10:00.000+01:00

I'm happy to report that I'm still not smoking! ha ha!

I gave up on Friday evening and it hasn't been as bad as I thought to be honest... I'm not saying it's been easy because there's been various difficult patches (suddenly things that didn't used to bother me at all, or rather that I chose not to let bother me, are now getting on my nerves a bit and I'm finding it difficult to keep my mouth shut, so you have been warned!!) (sorry Paul my love) :-)

Sam did the first part of his maths GCSE today and was quite nervous but it seemed to go well; and I'm so proud of him doing it a whole year early.

Anyway I'll have to be off because I'd hate to become one of those 'boring ex-smokers' who talk about nothing else.... (well... I have mentioned Sam's GCSE too....)

Love
Jen x (who smells very sweet)

By jove I think I may have done it.....

2007-06-02T14:30:00.000+01:00

Well ..... I am now a non- smoking person... it hasn't been that long but the longest time I've ever gone without a smoke! I really feel like I am going to succeed too.... watch this space.

YAY!!!!!!!!!!!!

Jen x

No more smoking????

2007-05-28T21:13:00.000+01:00

OH dear I hear you shouting at the screen ''how can a person who's had cancer smoke!" Well the same as anybody else is the answer... you just put the disgusting stick up to your mouth and take a drag...

The only reason that now I'm able to confess the atrocity of my smoking 'secret' is because I am, at last, ready to give up. The emphasis there should be on the 'I';- lots of my family and friends have been ready for me to give up smoking for an awfully long time- but as anybody who has ever smoked knows, that doesn't actually make any difference and it won't be until the person concerned is ready that the said person can even begin to imagine being successful and managing to stop completely.

So that's the stage I'm at now and have been for a few weeks actually. I've cut down dramatically on the amount I smoke and have decided now that enough is enough and I just do not want to do it anymore. I must confess to having been to my doctor for help and been given a new drug to help me. But I will still need an amount of willpower too and am really really hopeful that I can actually stop now.

I'm really looking forward to being a non smoker.... not having the guilt of making my boy a passive smoker being the main reason, but also because it'll be nice not to be embarrassed about it anymore and not having my clothes smell or my flat... and having some extra dosh... yay!!!

I'm not telling when the actual stop day is, but just to say that it is imminently imminent ha ha.... and I'm very happy about it.

When I think about it I've actually been a smoker my whole life as Mum and Dad smoked when I was growing up; so I wonder what it'll be like to live in a smoke free environment, as I've never had that pleasure.

love
Jen x

An explanation....

2007-05-12T12:48:00.000+01:00

Ha ha ha ha!!! Have you ever written something that makes perfect sense to you, then realised that it won't to any other sane being in the known universe.... well I have! The last post was my (rather artistic I thought) impression of my life at the moment; sometimes I'm 'up' and sometimes I'm 'down'...

Right so now I've cleared that up!!!!!!

Oh and by the way you should all read the comments, my friend Steph (the lady I was talking about recently but wouldn't mention) has left one.... (a comment that is, not a bad smell... well not as far as I know) ;-)

Jen x
(who's having an 'up' day in case you hadn't noticed!)

Up down..... up..........

2007-05-11T23:47:00.000+01:00

Up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... down... up... up... up... up... up... up... up... up... down... up... down... up... up... up... up... up... up... up... up... up... up... up... up... up..................................

Jen x

Hello you lot...

2007-05-10T00:42:00.000+01:00

Just thought I'd better post something... can't sleep you see and was just replying to a comment so thought I may as well. You dear bloggy friends are flattered now aren't ya...

So what have I been up to these last couple of weeks? well, I went to my friends beautiful bonsai centre and met up with a load of other friends who have been touched by breast cancer too. That was fabulous and we all had a fantastic time together. Then I got home and had a serious bump back down to earth session to hear of another dear friend who has been 'touched' by breast cancer a little too much for my liking. I won't go into too many details, because I haven't got her permission, but just to say that this one was a little too 'close to home' for me to handle very well and I was very upset at the news. It made me seriously question if it is healthy for me to continue with this blog or to continue with my Herceptin forum on the BCPals site (the site I belong to that is strictly for other breast cancer survivors)

It seriously messed with my head because I finally feel that I might be able to move on with my life in general now, especially having just met Paul, and that I'm moving in the right direction. Then to be reminded of what could happen... well it just wasn't what I needed to be honest. Then the friend in question posted a really positive message on the forum and it was just the kick up the backside I needed, she humbled me and I can only hope that if the same thing ever happens to me that I handle it in the same dignified way she has.... Anyway will stop talking about that now as I can't really put what I want to anyway and I bet it's not making much sense!

Another thing that helped me is a few days later getting a call from 'Breakthrough breast cancer' asking me to go to a meeting on their behalf about the Cancer Reform Strategy with among others the Governments Cancer Tsar. These things help me feel like I'm making a difference, and like I've said many times before, help me to make sense of all the rubbish I've had to put up with over the last few years. So I am very happy to have been asked and hope I can make a difference. Basically the strategy is about making the best of available recources for cancer services; so they want lots of charity and patient involvement. I'm hoping to get a chance to mention about making sure BC patients are treated in seperate wards when having surgery, and/or treatment, and having easy access to their specialists. So lets see what happens next week.

Anyway enough of my ramblings for tonight, I really must try to get some sleep- I have a busy few days ahead with visitors and car servicing and hair appointment and dentist appointments, oh and next week I start on my new MS injections too.... ooooo I'm having a flashback now, haven't I said that before?

love
Jen x

Wow what a brilliant weekend I've just been blessed with...

2007-05-01T18:35:00.000+01:00

This weekend has been extra special thanks to someone I've never even met before..... but even before I met her she was one of my best friends.

We live hundreds of miles apart and have never even seen each others handwriting for instance, and I don't think we've even exchanged addresses. Oh and forgot to mention the first time I so much as typed to her was only last new years eve!!!

My friend Mags has been here this weekend from Scotland- what a total whirlwind! But what a welcome one. All I can say is it's a good job I like laughing and that I don't mind having sore stomach muscles from doing so sooooo much of said laughing.... wish you hadn't had to go home today Mags...

tomorrow would have been fine... but today was too soon.

Jen x

Oh deary me....

2007-04-20T20:42:00.000+01:00

I'm upset....

On Thursday I had to go into Guy's hospital in London to have the Port-a-cath removed from my chest. This should have been a cool time for me, I thought I'd be almost excited to be having it taken out as it really marks the end of my breast cancer treatment FOREVER!!! But no... have you not learned by now that stuff doesn't always go smoothly for me!

For those of you wondering what the heck a port-a-cath is; it's a device that some cancer patients have fitted under their skin somewhere about their person (mine was in my chest but I believe you can have them put in the top of the arm for instance) They are brilliant devices because they save the 'long suffering' patient (and Doctors and Nurses) from having to go through all the trauma of having to find a decent vein to use when receiving treatment. I had mine in for when I was receiving Herceptin every three weeks because the veins in my arm had been ruined by Chemotherapy. The device sat in my chest and linked directly into my blood stream and was visible under my skin so there was never any problem trying to find it! (well there's nothing else there in the chest area to distract anyone)

It's always really difficult for me to even enter the Hedley Atkins Unit at Guy's hospital in London because Mum and I spent a lot of the time there just before she died in 2003, but that's where I usually have to go if there's any reason for me to be hospitalized because of the cancer. Most of the worst memories of my life were made in that ward. But, despite that, when I was first diagnosed with breast cancer myself I didn't need to think about which hospital to go to for too long, as, at the time, Guy's was one of the leaders in the country and had an excellent reputation. I would have to have been stupid not to go there. I kind of knew most of the staff (didn't think for one moment they'd remember me, but they did) they were leaders in research, always seemed to be involved with one drug trial or another (I think I've been involved with about 3 research projects over the course of my treatment) and it just seemed 'right' for me to go there. In fact whenever I heard of women with breast cancer in my area going to a more local hospital I really couldn't understand why they would want to.

February 7th 2005- the day before my double mastectomy, Dad and I walked up the corridor of the HAU and I was shaking and in tears. I think Dad presumed it was because of the operation the next day, but it was because of the memories that had come flooding back about mum; remembering the way she used to shuffle to the loo's, when she was still able, or to the bathrooms so I could wash her, and how she looked tiny in the beds they put her in. At that point in 2003 we'd been associated with Guys for 14 years since her original diagnosis and some of the same staff were still there from 1989. They understood my feelings about my mum and the loss of her because they saw me at her bedside everyday while she was dying. They recognised me from '92 when I arrived with a tiny Sam strapped to my chest and spent all day at her bedside even though Sam was only 5 days old (it's ironic that what made that easier to take Sam with me was the fact I was breast feeding him! I don't know how I'd have managed otherwise) So they understood that I wouldn't even be able to look down into that wing of the ward after she had died, and that I never would in my present situation. They were so kind and really helped me, often sitting on my bed in the day's after my mastectomies to make sure I was ok. Ok so none of this made it a truly pleasant experience for me but definitely made it easier to cope with. Still I was very relieved to be going home in record time 5 days after my operation in 2005.

Since that time I've been in to stay a couple of times with no problems really, when I had the port-a-cath put in place for example. But this time, with my first step down the long corridor of the ward, I knew something was different, I didn't recognise any of the staff for a start off, and by the time I got down to the nurses station it was confirmed as I noticed with shock that there were men on the ward (now while men do unfortunately get breast cancer too, it's very rare and I'm sure they wouldn't have stayed on the same ward as all the women patients) I managed to put it to the back of my mind though and told the ward clerk I was there and waited to be shown to my bed......

That's when my personal nightmare started, to cut a long story short the nurse showed me to a bed that mum had occupied for some of her final 7 months in the wing I'd been promised I would never have to face, and I showed myself up completely by just bursting into tears and running out of the ward. To be fair the staff were lovely to me (once I'd managed to catch my breath and explain) and put Dad and I into a small waiting area while they tried to sort something else out for me. But unfortunately they must have got the wrong end of the stick because the next bed they tried to show me to was virtually in the same place, just a few beds down, and I had to explain that over those last few precious months of my Mum's life she had spent time in most of the beds in that part of the ward, on and off, so it wasn't actually the bed position I had a problem with but the whole section of ward in general. By this time I was almost inconsolable. But there was worse to come...

It turned out that the Hedley Atkins Unit was no longer a breast unit. There wasn't even a seperate area for terminal breast cancer patients anymore. On the section where Mum had been, 4 years earlier, there were now women with all sorts of cancer. Even more worrying was the fact that the wing where I'd seen the male patients was now a mens cancer ward and there didn't seem to be a specialist breast surgery wing anymore. On further investigation it appears that the staff on the old 'HAU' had mostly left Guy's in disgust because they really hadn't been consulted about the changes and were only given 2 weeks notice of the closure. Worse still was that, as far as any of the staff knew, there had been no patient consultation. According to one member of staff in the ward where I ended up, now if you needed a mastectomy you would be seen in a general surgical ward! Totally totally unacceptable, and I have to say if I were diagnosed with my breast cancer now I wouldn't want to be treated at Guy's. I love and respect my consultant and he's still there I understand, so will continue to visit out patients though. I'm sure he's as upset about the whole thing as I am.

A couple of members of staff (from the other ward where I eventually ended up) encouraged me to campaign and ask questions about all this and see what I can find out, after they heard about the Herceptin campaign. So that's what I'm going to be doing. All this has come as a huge shock to me and I can't bear the thought of other women newly diagnosed with breast cancer, or even just frightened of the possibility, being denied a specialist unit to go to in this part of London. In a weird way it was always a comfort to me and my Mum to know that the Hedley Atkins Unit was there (and still being used for what it was intended for by the original benefactor's)

I'm sure I'll be writing about this again in the not too distant future as I'm learning all the time that this kind of thing isn't as unusual as you might hope in this country, surely this can't be right....

Sorry for rambling...

Jen x

OK then

2007-03-30T14:28:00.000+01:00

Right- have been having a bit of a rough time with the new medication.

The injection itself is easy peasy now have no problems.... until about 30 seconds later and then feel like I've been stung by the fattest wasp in the history of fat wasps from waspville (and I'm allergic to wasp stings)

It just seems a bit mad to me, the drug is supposed to set up an allergic reaction; well that's one of the known side effects anyway, surely that's not a good thing?? (well not in someone who's allergic to things like bee stings? I'm even allergic to plasters and any jewellery that isn't precious metal) I suppose it should have been me that thought about that before I started on the treatment but I just hoped it wouldn't be too bad in my case... should have known! Nothings ever simple in Jen's world! I have great angry red itchy marks and lumps wherever I've injected and it seems that every time I inject it makes the previous sites flare up again! I would just like to point out though that this doesn't happen to everyone and that some people swear by Copaxone® and it does them the world of good, but it isn't for me at this point.

So I've chickened out of doing the jabs for the past couple of days (I just did one today though) and on Monday, when my Nurse specialist gets back from annual leave, I'll try to sort out going back on to beta-interferon. It'll mean a weekly intramuscular injection but at least it's only once a week- with no injection sites reactions. Hopefully I'll even be able to get the nurse at my GP surgery or a district nurse to do it for me... we'll have to see.

Anyway rant over for now... until I think of something else to write :-)

Love
Jen x

Paul........

2007-03-22T00:00:00.000Z

I'd like to introduce you to paul... the love of my life.

Jen x

Mothers day....

2007-03-18T20:13:00.000Z

Well at first this morning when I woke up it was the usual set-up for mothers day in my household... ie;- whatever you do don't mention it, don't get me a card, no pressie, no flowers and whatever you do try not to think about mum's in general, and me ranting on about how commercial it all is now and how I didn't want Sam wasting his money on me anyway....

Then I got a pertinent message from one of my many dear friends to say that she knew how sad today was going to be for me but to remember that I also have a lot to be thankful for; not least of which is that I'm still here to be with my Sam. It reminded me that I'm being selfish by not allowing Sam to shower me with gifts ha- ha, no but seriously it reminded me that yes I do have an awful lot to be thankful for.

My son is growing up into a very special young man and is someone to be very proud of. Last night he gave me a huge Toblerone and said it was instead of giving it to me today... it was his ''day before the day we don't want to mention present'' He knows how much today hurts me since I lost my mum and has just been lovely all day... I never was one to mind having extra cuddles whatever the excuse. He really is an exceptional 15 year old.

I've got some other news to share with you all at some point too but better check with the person concerned before I do.... yet another part of life's rich tapestry :)

wooo and hooo

love
Jen x

Flippin eck!!!!!!!!!!

2007-03-15T13:51:00.000Z

But the bigger news than that (which I forgot to post in my last message! blame my chemo brain) is that I have just set up a new team to take part in the Breakthrough breast cancer charity walk again this year!!!!!!!!!!

I am sooooo excited about it! There are already about 8 of us on my team and these friends of mine have made me so happy, I've been really touched by their generosity. Love you all

The teams name is THE FLAT ONES and I'm sure I'll be filling you all in with more news as things develop.

Anyway am very excited but my lovely dad has just arrived to visit so I'll be off now, but just before I go let me just say one more thing......YAY!!!!!!!!!!!!!!!!!!

love
Jen xxxxx

Woooooo hoooooooooooooo

2007-03-15T13:44:00.000Z

Just a quick post to say that I've just had my first injection of my new treatment for the MS! I'm very proud of myself because I've become quite needle phobic since all the cancer treatment and I had to learn how to do the injection myself and REALLY wasn't looking forward to it!!

But job done and hopefully now I've done the first one it'll be easier tomorrow :)

The only side effect so far is a quite strong stinging on the injection site but I've coped with worse.

Anyway just wanted to share.

love
Jen x

Latest news article...

2007-03-02T13:27:00.000Z

If you click on this article it'll open in a new window with much bigger

text so you can read it :-)

Jen x

Scar tissue.....

2007-02-25T10:51:00.000Z

I think this fantastic Red Hot Chili Pepper song is quite apt.... don't you!

Enjoy!

Jen x

Decisions, friends and Chili's!

2007-02-20T16:10:00.000Z

Right at last decision made!... I'm going to be starting a new (to me anyway) MS drug called Copaxone in the very near future.... yay.... NOT

For a multitude of reasons, discussed with my fantastic MS nurse specialist Pauline, have decided the best drug for me at this point is the one that involves DAILY (yes DAILY!) injections... just the sort of thing a needle phobic needs!

Apparently I can use an 'auto-injector' this time though and the needle is only little. The only side effect I might suffer with is a tightening of the chest and feeling of not being able to breathe for 15 minutes just after the injection... oh that's all right then! Piece of cake...never did like breathing much anyway.

On a lighter and much more pleasant note I went to the Brit awards last week! Was brill, especially as the Chili Peppers were there too and saw a fantastic performance of Dani California by the band and got very tired through screaming and dancing to them, ok I'm biased but they really were the best performance of the night.

Another highlight for me was my friend Kay came too; she is a fellow Chili fanatic and we had such a laugh! The bitch is younger and prettier than me but- generous soul that I am- I forgive her lol she is such a great friend to have. (love you loads Kay x)

Now all I have to do is get me some tickets to this 'live earth' thingy and I'll be an even happier bunny..

This is me outside Earls Court at the Brit's

(Ok I should have worn something different!!!)

Jen x

If it's not one thing tis the other...

2007-02-01T00:51:00.000Z

So have had a clear scan result which means I am officially officially in remission now (I say it like that because I don't think I actually believed it before) So the check up schedule now, for the time being, is 3 monthly for a while then on to twice yearly then annual.... cool! So can put that right to the back of my mind in a suitcase with a padlock, which is what I'm now trying to accomplish, just one more little hurdle to overcome; which is to have the device in my chest that gave direct access to my veins, instead of them hunting around in my poor arm for one, surgically removed. This means a short hospital stay in my case due to the MS but it shouldn't be too traumatic I don't think. Mind you there won't be any TV camera's around this time.... gosh do they not know who I am ;)

So this is one door closing.... but in my typical style the 'other one opening' isn't all that easy either! Now I actually have to start thinking about the MS again, do I want to go back on my weekly injections?...... NO.... totally needle phobic now, so not fancying that much! Do I want to start on smaller every other day injections...... NO..... still needle phobic! Or do I want to go on a trial for a new oral medication that in earlier trials had a very impressive success rate in reducing the amount of flair ups for the MS patients taking part?... YES... well you probably can't because of your cancer history..... flippin eck! My MS nurse specialist is looking into it for me but I'm not holding my breath....

Did somebody mention tapestries....?

Take care
Jen x

Just another thing...

2007-01-13T03:03:00.000Z

Hi everyone,

Ermmmm wish they could invent a tablet or something to set your body clock back to normal! I've spent so many of my months over the last 2 years of treatments etc not being able to sleep at night and then making up for it during the day that it's almost as if I've forgotten what time I'm supposed to be sleeping.

Well you might say go to sleep earlier and set your alarm... been there done that, and am saving up for the t-shirt, no it doesn't work.

If I had a pound for every time someone says "well just try not to fall asleep during the day then" I'd be a millionaire! But again been there, done that and am saving up for that t-shirt also, and it too don't work.

Just when I think I might be getting it sussed something else happens to disrupt my carefully laid out plans. Something else to worry about for instance or a particularly tiring day. The latest one of these times came when my 'little' boy broke his big toe on Monday evening! He says it was my fault! But I was only pretending to chase him to give him a tickle (it's not like I could ever catch him up!)

So there ended the restful nights sleep for the start of this week because I was too busy worrying about if I should or should not bother taking Sam to the hospital (the ultimate answer to that was NO because they don't do anything with broken toes even if they are big toes and twice the size they should be)

It is amazing though the things you can find to do on the internet at this time of night, I could chat to some American friends, play games, flirt, or come and write my blog... mmmmm have you worked out which one I chose yet?

love

Jen x

Some photo's I thought I'd upload for the New Year

2007-01-02T19:15:00.000Z

Me and my boy on the way to the Red Hot Chili Peppers concert 22.11.2006 The Roundhouse, London.

My son, the most precious

Above is Mistie our cat (when she was cuter!)

Below is a picture from a set taken for The Sun Newspaper in October 2006 (they only used one!)

All the best for 2007!

Love

Jen x

HAPPY NEW YEAR!

2006-12-31T20:48:00.000Z

Hey, if I have a new years resolution for this new year it's ....... I don't know! Not saying I'm perfect but this year hasn't been too bad in all; and the things that haven't been all that good there's not a lot that a new year resolution is going to be able to fix....... (I make a new years resolution not to have cancer!!! erm no that's not going to cut it is it!) oh well just have to keep on keeping on then!

This year has been good in a lot of ways and I guess that some of the bad stuff is stuff that's overrun from previous years, so they don't count!

Oh yes- probably the worst thing to happen in 2006 was that one of my best friends fell out with me and I haven't heard hide nor hair of her since, I still don't understand why it happened to be honest, but sadly she chose to say something almost unforgivable to me (I can certainly forgive her for it but we won't be able to ever get over it, well not at the moment anyway) I care about her and her family very much though, always will and wish it (whatever it was) had never happened.

One of the best things that happened involved the decision by the government in this country to provide Herceptin to all the eligible breast cancer patients that need it in the UK, I'd been campaigning about that for the previous 11 months or so ever since I found out I needed it in 2005. There were lots of us involved in the campaigning and it was a good feeling when it happened sooner than we could have hoped for. America and other countries had had it available for some time for early stage breast cancer, but as per usual our government dragged their heels and many women had the additional worry of trying to get funding to start the treatment while they made up their minds.

Another great thing that happened was my friend Tina phoning to ask me if I wanted to be involved in the 'Breakthrough breast cancer' charities '60k weekend walk to breakthrough breast cancer'. Thus began a few months of fundraising that enabled me to realise that I had some great friends (at the time!) and family and that there was a lot of other campaigning work I could & should be doing. (oh and we raised the best part of £5,000 too!!) The actual walk weekend was amazing too but I won't go into that all again here because it's all documented on my main site www.janines-fight.org.uk

The other highlight was going to Parliament with Breakthrough but that too is all on my site and a bit here too actually.

I really have made some great friends too this year, both off-line and on. Enjoyed the media opportunities and had a great time with the Chili Peppers (in my dreams!!) but the concerts were brilliant!

Here's to us all, and oh I've just thought of the perfect resolution... to update my blog more often............

Love as always
Jen xxxxx

Here we are then

2006-12-27T00:54:00.000Z

Maybe now's not the best time for me to be posting this a. because it's nearly 1 o'clock in the morning as I start typing and b. because I'm feeling a little bit weepy at the moment. But hey that's me, life on the edge ;-/, so what the heck.

Had a surprisingly good Christmas actually. Surprising because really it's only now that I'm having a few tears about my dear Mum not being here with us; the previous 3 years it's happened much sooner in the celebrations, this is not making me feel good though, this is making me feel even more wretched. What am I forgetting about her or something? (No never) Think it's because I've managed to have my first Christmas this year that wasn't the same as usual therefore didn't hurt quite so much, we didn't spend it the same way we would have when she was alive (while desperately trying to pretend to all and sundry that everything's ok) Unfortunately couldn't get up to see Nanna and the Suffolk family this year as I'm still recovering from the operation- and trying not to overdo it too much.

So instead spent my first Christmas day for about 25 years with my Dad! and with my 'sort of' step mum, and Sam and I met my 'sort of' step sister shelly for the first time, goodness knows why we haven't met before! she is lovely! She's the same age as me (although looks about 100 years younger) and is a single parent with a son the same age as Sam! No chance we'll get along at all then!

Today has been another rest day as Sam's been off at his Dad's and I guess I've just had too much time for reflection, hence the dampness surrounding my eyes at the moment. Christmas is like that isn't it, it brings out all the regrets and shoves them up close and personal for you to scrutinise (or is that just me? answers on a postcard please) Also it makes me feel more lonely than ever- no one's ever going to be interested in me again... no boobs..... MS...... cancer.... good catch ain't I.

One thing that has touched me today though is the news that one of my very bestist online buddies, who I 'met' a few months ago through the breast cancer Internet support group I belong to, has been brave enough to go out for the day without a wig on. This may not seem like such a big deal to those of you who haven't had the experience of losing your hair through Chemotherapy, but believe me it's an important milestone in the whole cancer experience. It's the start of the real recovery, of accepting that you may be getting better; that it just might be possible. She won't accept that this was a brave thing to do, but I for one am very proud of her. (She probably did it so I'd stop calling her 'Slap head' but love, no chance- you know me better than that!)

I am so grateful to the Internet for enabling me to get to know so many other women with breast cancer, they support and encourage me, and hopefully, sometimes, I'm able to return the favour.

Maybe I need to sleep, that'll do it- I'll curl up under the duvet until my legs stop spasming and dream that all's 'different' then maybe in the morning I'll wake up and think about the things I have still got and not about the stuff I've lost lately......... at least my hairs looking good ;-)

love
Jen x

Operation aftermath.....

2006-12-17T04:50:00.000Z

Remind me, dear friends, never to have that done again :-/

love from a very sore
Jen x

Operation eve.....

2006-12-11T21:13:00.000Z

Got my operation tomorrow, everything is ready (well apart from me which will have to wait till tomorrow) my friend has been round to help me by doing my cleaning, so I don't have to be too ashamed of my place while my Dad is staying, Sam has the day off school because he's a bit nervous and my Dad is bringing loads of food prepared for us by his girlfriend (wow that was difficult trying to describe who she is!! I'll have to think about that one some more)

There's only one problem..... namely that 'chemo' brain me didn't realise that I was supposed to ring up the day surgery unit to confirm my appointment.......BIG WHOOPS! So now I'm left wondering if it's actually going to go ahead again! TYPICAL!

In other news my Chili Pepper infatuation continues unabated, but it's not something I'm worried about too much ;-)

Love
Jen x

Hello again...... why so soon I hear you ask?

2006-12-04T22:59:00.000Z

I just realised that my last message may have seemed a bit anti Red Hot Chili Peppers! Which wasn't my intention at all and couldn't have been further from the truth...... mortified.

Just thought I'd try and rectify that in case there are any other fans reading my blog and just so that everyone knows..... I LOVE THE RED HOT CHILI PEPPERS, (also just in case anyone needs any ideas on what to get me for Christmas!)

Is that clear? OK good.....

love

Jen x :-)

Here I am.....

2006-12-02T19:27:00.000Z

Well it's world Aids day so thought I'd put a new symbol on my site, was thinking about making a joke about how it's nice to write about something that I don't suffer with for a change, but figure that would be in very very bad taste so have decided against it......

Since I last updated I've been busy do nothing really, well went to the Chili Peppers concert and had a brilliant time but that's about it, the rest has been working on my sleeping and the campaign (a little bit) and eating 'party rings' to be honest. I can still sleep for England and seem to become exhausted very easily at the moment, despite the transfusion, but at least I'm not having as many spasms in my legs.

The Chili Peppers gig was FANTASTIC! It was lovely seeing them up so close but sadly I didn't get to meet them, didn't even bother taking my 'falsie' with me for them to sign. Usually when the Willow foundation are arranging something like this they manage to at least secure a meeting with the band or famous person in question, but the Chili Peppers wouldn't play ball :-(
I guess they must have similar requests all the time, but to be honest it did upset me a little bit to see some people have access to them on the night but not me, one of their biggest fans. End of rant.

Thanks still have to be said to the Willow foundation though, they really pulled out all the stops. We were driven to and from the show in a 34ft white limo, had champagne and were given some spending money, plus I had my wonderful Son and my very dear friend with me, it was still a magical evening.

Me and Tina in the limo on our way to the gig

Now I'm just hoping that I'll be starting to feel a bit better soon so that I can really get stuck into my campaign properly, it's getting a bit frustrating now! (If you don't know what I'm talking about have a look at my website and all will become clear: link on the right)

Love and all good things (and leave me some messages please!)
Jen x

Oh my goodness how bad am I at updating!

2006-11-18T20:47:00.000Z

For goodness sake, if I was getting paid for this I would surely get the sack; but fortunatly I'm not so there shouldn't be a problem.

Since my last posting some amazing and wonderful things have happened to me, first off I had my blood transfusion last week so now I'm really starting to feel better- my leg spasms have reduced quite a lot already so I'm very pleased. That's one of the worse things about my MS it really wouldn't be so bad if it weren't for that and needing a transfusion seems to affect it adversely.

The next wonderful thing is that the charity 'The willow foundation' have arranged for me and sam to go to an exclusive gig of The Red Hot Chili Peppers!!!!! I still can't believe it, it will be like a dream come true, it's at a place called the Roundhouse in London, which is tiny! (tiny is gooood as far as concerts are concerned) According to the charity a limo will pick us, and my friend Tina, up and get us home. It's going to be FANTASTIC; we can't wait. Oh & it's this Wednesday by the way. YYYYiiiiiiiipppppppppppppppeeeeeeeeeeeeee!

Just in case I get to meet them I'm going to take one of my false boobs with me to get signed (I don't wear them anyway and thought they may as well be used to make sure the band don't forget me!!!! ;-))

Jen x

Right soooooooo.....

2006-11-05T18:18:00.000Z

Didn't have the operation, wasted a whole day starving myself then the staff decided that being as my haemoglobin was only 10 something a month ago they better wait to get it checked again before surgery. Then decided my 'gag reflex' had deteriorated since my last op (I can stick my fingers right down my throat and not heave-great party piece!) I would need to have some tablets an hour before surgery.

Anyway went to have the iron levels checked again on Thursday and 'quell suprise' they have now gone down to 9 something; no wonder I feel so rough! So now I'm trying to sort out having a transfusion this week coming.

NOW FOR THE MAJOR BIT

Heard from my MP this week as she sent me a copy of the reply she got from the Prime Minister regarding our question.......

Guess what! He doesn't answer it, goes on trying to blind us with facts and figures about how well the Government has done over the years but forgets to mention that they haven't lived up to the promises they themselves made in the white paper they published in 2003 about waiting times for genetic test results, so when I feel better looks like we have a bit of a scrap on our hands; joyfulness.

That's all for now folks, bed beckons

Love

Jen x

More hospital time!

2006-10-30T19:20:00.000Z

No don't worry it's not the cancer but a side effect of the cancer :-(

The chemotherapy really mucked about with my system and has caused me to need a relatively minor operation of a feminine nature lol. It shouldn't be a big deal, and was all booked for tomorrow as a day surgery case. Wonderful you would think.... but no that wouldn't be the normal Jen way of doing things now would it!

I had my pre-op appointment today, and what should have taken 1 hour, according to the letter, in fact took nearly 5!

In the day surgery unit apparently they can't deal with ports (in fact it looked as if the nurse that was dealing with me had never even seen one!) Then she noticed that I was very anaemic and wondered if in fact I'll need a transfusion before I have any operation, or in fact if I'll just need one anyway. Then finally noticed about the MS and that the fact I don't have much of a gag reflex will need to be discussed with the anaesthetist, oh joy.... and then the icing on the cake; I'll still have to be at the Hospital for 8am tomorrow to find out, are they having a laugh!?! that's the middle of the night!

Oh well my Dad's coming over anyway to look after me and Sam for a couple of days so regardless it hasn't been a complete waste of time, and maybe I'd feel happier not being rushed in day surgery anyway..... what was that I said about tapestries?!

Jen x

Feeling more positive today....

2006-10-28T18:56:00.000+01:00

Am getting over yesterday (Mum's anniversary) and have been relaxing a bit today, I know I know so what's new!

Well the reason I've had to rest is because this week I've been very busy visiting with my MP Joan Ruddock and working with Breakthrough breast cancer on how to improve my campaigning skills. Spent a couple of days away with them and did a few workshops to hear what their campaigning strategies are, it was all brilliantly organized and culminated with the meeting with 'Joan'!

During the meeting on Tuesday I was able to put my points across effectively because of the things I'd learned at the workshops, it was fantastic and went really well.

Among other things I asked my MP to ask a question for me at PM's question time on Wednesday. She didn't hold out much hope of being successful, but I asked her to try anyway, and she did! The Prime Minister is going to 'look into' my issues and get back to us :-) There is even a clip of my question being asked on the BBC parliament website! Very exciting and hopefully will lead to more things on my campaigning front. Full updates will be on my site in the next couple of days. Sadly all this excitement (and stardom) is too much lol!

love
Jen x

Finally!

2006-10-27T22:30:00.000+01:00

Well it's quite late now and I've just managed to link this blog to my website! so I won't write much now, especially as it's actually 3 years ago today that I lost my Mum.

Not had the best day must admit, think my Nan Sam and I were the only ones that remembered, guess I'll have to start getting used to that though.

I have got loads of interesting stuff about my week to write though so hopefully will be able to do that this weekend sometime.

lots of love

Jen x

At last I've actually updated- bet nobody's lookin

2006-10-07T22:37:00.001+01:00

Hello!

Here I am again….at last, I know it’s been a while! I’m still here doing my thing. Just trying out the best way to integrate this blog into my site-not sure how it’s all going to work yet but one can only try.

As you can see from previous posts it has been an awfully long time since I wrote anything on here- that’s because since then I’ve set up my own website and have been campaigning for Herceptin to be made available to all on the NHS among other things, oh and raising money for charity with rather a lot of help from my friends. Anyway why don’t you just go and check out me site you’ll see what I mean. http://www.janines-fight.org.uk/

Love
Jen x

Not too bad thanks!

2005-03-03T04:21:00.000Z

Watcha!! Well here I am post my first chemo' which was on Monday. Not feeling too bad considering they pumped me with loads of toxic chemicals. I feel a bit queasy rather than full on sick, a bit tired too but it's managable so far. Can't stand the thought of tea or coffee but that's no great loss.

Anyway just wanted to update in case anyone's bothering to read this- but I have to go now as my favourite programme of all time is on the telly now (Fame Academy) :-)

Love everyone so much (oh yes that's something else Cancer will do for you, make you even more soppy)

Jen x

The worst is over???

2005-02-11T15:58:00.000Z

Hello!!

Much to my surprise it's me again (did Steve's message actually make any sense?!!)

I can't quite believe I'm out of hospital or that I'm able to type! Or that I don't feel too bad, wouldn't want to do it again though.

Am seriously tired but thank God I've lived to tell the tale!!

Love
Jen x

operation day

2005-02-08T22:17:00.000Z

As I write, oh and I'm the Brother, the operation happened today. Jen is happily back on the ward and in good spirits(Holy). Dad, Bruv and Son were at the hospital all day-worth it though.
Everyone is, especially Jen now very tired. Thank you all for your thoughts and prayers.

Here it is then.....

2005-02-08T06:43:00.000Z

Well, Steve is here, tormenting me as usual ;-) My Dad is here, Sam is here and I'm quite enjoying myself!!

I'm not too nervous or worried either, one of the only things that is concerning me at the moment is how it will feel walking into the Hedley Atkins Unit tomorrow, when the last time I did it was to visit Mum. All this has brought into sharp focus exactly what I have lost- but also has really made me see what support I have still got in my wonderful Family and Friends.

The other thing that's a bit of a worry is whether my Dad and the rest of the family will be comfortable enough in my flat while I'm away.

I'm hoping that Steve will be able to update the blog while I'm away, so if it's not done, for once, it's not my fault!

Take care now
Love
Jen x (who will be fine)

Time's marchin' on....

2005-01-31T00:43:00.000Z

Whoops haven't had time to post in a while, first I had the appointment at the hospital on Thursday then I went up to Suffolk on Friday to break the news to my wonderful Nan, I can tell you now that going to the hospital was a piece of cake compared to having to tell my Nanna that I'm ill.

The hospital appointment wasn't that bad really, I had to do some swabs which was weird- I had to sick extra long sticky buds up my nose and under my armpit so they can check that I'm not going into hospital next week with any 'bugs' (what if some jump on me between now & then?!) Then they did blood pressure and weight etc, then a doctor checked my heart and breathing. Next I took part in some research, by giving some blood, to look at the possible genetic causes of breast cancer- only thing was that the nurse couldn't find a decent vein so she pricked me 3 times then decided she couldn't do it so I had to have a technician do it instead. I have some amazing bruises to show for it. At the same time they took blood for testing for all the other stuff they have to do before an operation. Then we met with Rachel and she spoke to Sam for me about the operation because he's a bit worried, she told him I'd probably be gone from the ward for about 5 or 6 hours but the actual op' would only be about 3 or 4 (that's ok then!!!! not) A Nurse from the ward then came down to meet us and fill out some forms, she was really lovely, all the people I've met have been nice actually which is such a blessing.

I was much more nervous and worried about seeing Nan. I don't know how I managed to stay in my seat on the way up on the train. I've noticed that whenever I have to talk about this to someone I love I start shaking (teeth chattering and everything!) I'm so glad I told her face to face though so she could see that I'm not falling apart.

So now it's all out in the open at last. In a kind of selfish way I'm relieved ..... something else to feel guilty about.

Love
Jen x

All systems go?

2005-01-27T07:58:00.000Z

I've got a long appointment at Guy's tomorrow so they can check me out pre- operation. Don't know if they will be able to tell me anything new or what, but the nurse (Rachel) told me to expect to be there for 3 or 4 hours (so I'll expect to be there all day!)

Also have worked out that I'm going to visit Nanna on Friday to break the news to her face to face, so hopefully it'll be a bit easier on her. I want her to see for herself what I already know, that I feel ok and that I'm dealing with it ok. I hope to take away a tiny bit of her worry anyway.

Got a new strategy for dealing with my cat, she's now confined to the bathroom so there is nowhere comfortable for her to go to the loo except her litter tray. I feel I've already got enough sh** to deal with thanks very much!

Love
Jen x

Feeling better

2005-01-25T00:09:00.000Z

Sorry about whinging earlier, just wanted to say I feel better now. Have sorted out a few things and don't feel so down now.

Cat still prefers the carpet though......

Love
Jen x

Depressed

2005-01-24T11:19:00.000Z

Steve said the other day that I was too cheerful and that it would hit me at some point & well he was right because here it is. I don't feel sorry for myself or anything, it just feels as if I'm hurting the people I care about the most- which of course I am.

I know nobody blames me, of course, it's just the way I think. It's easy to be rational when you haven't just been told you've got cancer.

Sam told me at the weekend that he is really worried about the operation and the anesthetic in particular. What I couldn't tell him is that that is exactly what I'm worried about- not having my boobs removed, not the chemo' just getting through Febuary 8th 2005.

Anyway I'm just FED UP!. My hot water pump has stopped working, & my lights are still broken and all I have to do is phone the housing assosiation but I can't be bothered. Also the kitten doesn't know how to use her litter tray! Nice....

I'm sure I'll feel better tomorrow
Love
Jen x

Here we go then...

2005-01-19T06:49:00.000Z

It seems the Doctor was correct. Found out today that he was 97% certain after the mammogram and ultrasound. I think I was always more certain than he was.

Life's a series of strange situations when you consider it isn't it. It's really weird when I look back to watching my Mum ill to think that I'd have to ever face something similar without her about. But you know what? I think it'll be fine, everyone is being wonderful. I've just got to learn how to accept help when offered, some people seem to have a gift at making it incredibly easy for me to say "yes please" (Nadine & Kathy I'm talking to you especially also Pat and Tina)

My Dad has just been on the phone to me again and said something along the lines of that he "can't believe what is happening and that it must have been one of the worst days of my entire life" and I said "no Dad it isn't but telling you about the cancer tonight would have to be in the top two"

I promise you in a lot of ways IT IS WORSE FOR YOU THAN ME!!

Anyway I'm so tired I don't even know if any of that makes even the slightest iota of sense, so I'll be back tomorrow to try again. Sorry!

It might not have been the best day in the world but yes I've had worse.

Love
Jen x

It's me again

2005-01-18T07:40:00.000Z

Well it's the night before I will get my biopsy results- but of course if that isn't enough to think about, I'm now worrying in case the results are inconclusive which would mean not getting any answers and having to have even more tests.

I need to know, my head has been swirling with so many 'what ifs' for so long that it is now getting a bit old even for me! What must I have been putting my friends and my brother through?!

To my brother, Nadine, Pat, Karen, Dale, Ian & Chris and all my friends at Church; I'm sorry but thank you darlings x

"Do I look bothered?" ^-^

More tomorrow...........

Love
Jen x

Feeling guilty

2005-01-17T07:45:00.000Z

I thought I'd write today about how guilty I'm feeling about not having told most of my family about what's been going on. I've had to be really cagey and false with the people I love most since finding this lump on the weekend before Christmas- and I can tell you that has been one of the hardest things to bear (on some levels)

I've found it very difficult to reconcile myself to the fact that I may have to put you all through the 'cancer thing' again so soon after losing Mum, so that has been my motivation- the Doc could be talking a load of rubbish, so what would be the point of causing you all to suffer the uncertainty with me?

I've considered not even sharing the news if it is confirmed on Tuesday, but have kind of decided that Nanna might notice if I have to stay in hospital or if I lose my hair during chemo'. I bet she'll tell me off when she does find out how long I've kept it from her, hopefully I'll be able to make her understand. Lets hope and pray it's good news.... that'll soften her up.

Love
Jen x

What's it all about?

2005-01-13T23:00:00.000Z

Hello

As you can see this is my first post! The idea of this blog is so my Family and friends can check up to see how I'm getting on - that is unless the Doctor who told me last Wednesday that he thinks I have a potentially life threatening illness is wrong, if so it will no doubt become redundant, just another good idea gone to waste (I seriously wouldn't have too much of a problem with that though!)

When I lost my best friend and Mother at the end of 2003 I thought that would be the end of my association with Breast cancer, yet here I am 15 months later, having found a lump in my breast, having to visit the exact same hospital that she did and even being diagnosed (possibly) by the very Doctor who gave my Mum the bad news 16 years ago. Life's a bitch isn't it?

I can, at least, say now for certain that it definitely is more difficult for relatives and friends when someone they love is going through a difficult illness, I always thought so but now having been on both sides of the equation I know it for sure.

Whatever happens I know I'll be alright because I have great Faith, God won't abandon me, He'll give me the strength and courage I need, He always does.

Love
Jen x