What a grim appointment I had today...

I was lucky enough to actually see Dr Charlton, he came strolling in to clinic at 9.50am (my appointment was 9.30am).

He said my scan done in October was compared to the one I had done in March and the 5mm tumour (the one that's been there since the beginning) has grown to 7mm and there is a fresh tumour of 5mm on my lung under my mastectomy area.

He said he wants to have a biopsy done on the new tumour to ascertain which cancer it is ..the 1st oestrogen+  or the 2nd HER2+, so that they can treat it with the most effective treatment.  Problem he has is knowing whether 5mm is too small to get a proper reading in the pathlab...he's going to meet with a 'lung expert' and ask them their thoughts and try and see me again within the next 2/3 weeks.

He knows my feelings on the chemo Taxotare and said that there is possibly another route we could take but I said I want to have whichever chemo he thinks will do the better job.

If the new tumour is oestrogen+ then I'll be having monthly Zoledax injections to stop my ovaries working. He did ask if it would bother me or not...I replied 'I'll jump for joy at the thought of no more periods'!!

So the plan is for him to meet with whoever, decide if a biospy is worth it at the moment or to wait until it's a bit bigger - eek!.  Then decide on which treatment and when to start...he thinks if going on Taxotare to start at my first session in the New Year and have it at the same time as my Herceptin.

Taxotare is quite a harsh chemo...I could have any of the following to look forward to... 

Drop In Number Of White and Red Blood Cells 

Fluid RetentionDiarrhea

Nausea/Vomiting 

Chemotherapy Hair Loss 

Chemotherapy Fatigue 

Muscle Pain and Bone Pain 

Nail Changes - sometimes they fall off completely!! 

Eye Changes  

Infection 

Mouth and Throat Irritation

Obviously I will hate to lose my hair again and put loads of weight on BUT I'd rather be bald and fat and still be here than the alternative option....

So a bit of a scary time for us all...to say we're gutted is an understatement but knew that one day we'd get news we didn't want to hear.

Love Clare xx

Been a tough week...Pooks is back with us albeit in a wooden cat but she's here where she belongs...

I am feeling rather guilty of not crying my eyes out at every thought of her..but I'm a realist and I knew she was poorly, old and she'd had a wonderful life with us...she knew I loved her.

Tonight I'm sitting here wondering what delights await me at my consultants appointment tomorrow...the results of the CT scan I had way back in October should be there, together with my latest blood results.

I hate the waiting, Dr Charlton is never running on time and that just makes my whole day longer, this time I will make sure that I ask all I want to and will mention my horrendous periods and if there is anything that can be done or is it just a put up with senario....hope not..

So Jack is at Grandma and Grandad's tonight as I have an early start and hopefully I will get a good nights sleep...don't normally as my thoughts go into overdrive... 

Just hope that I can come home tomorrow with good news 

Love Clare xx

I knew this day would come and dreaded the thought of it...my darling Pookie is gone and I'm so sad...

Since Thursday had she been struggling to walk properly, it got worse over the weekend and I had to carry her to her food/water and litter tray..

I was on my own Saturday night as Jon and Jack were at Michelle's, so Sunday morning I went downstairs picked her up and took her back upstairs with me for a 3 hour cuddle and snooze...

I'd made the appointment with the vet knowing that I'd be coming home on my own.

The vet said it was a classic case of Lymphoma of the spine and by the time 5.30pm came round she couldn't stand at all...there really was no decision to be made ..I wanted her to be at peace.

I stayed with her and cradled her head and kissed her whilst they injected her telling her that I love her...

I was left to say my goodbyes to her and gave her one last cuddle and thanked her for making me so happy....even through my tough times she's been there always willing to give me a cuddle.

She's being taken to a Pet Crematorium tomorrow and then her ashes placed in a carved wooden Sleeping Black cat...

There will be no more cats in my life as I only ever wanted a black cat and I had the best I could possibly have for 16yrs 9mths...I loved her and will carry on loving her...no other cat could give me the love she did.

RIP Pookie  (14.2.1993 - 09.11.2009)

Another treatment under my belt as they say!

Quite an emotional one today as Fiona was having her last Herceptin and although I don't want to see her again on West Ward I will miss our chats and laughs..

Managed a hug and a goodbye then I could feel myself welling up and so was she so I left sharpish so we didn't both blubb..

Actual treatment went ok, the nurse who acccessed my port had to take a blood test from there too as it's needed for my next appointment...when she flushed out after the syringe slipped and saline squirted all over my face/hair and neck...I couldn't stop laughing, she was mortified - at least it wasn't the syringe full of blood!!!

Not really looking forward to my next appointment as it's results day/check over - bloods/scan and heart echo..which means a bit of 'scanxiety' over the weekend before and then I'll prob have an upset stomach on the morning...roll on 16th November is what I say...

Feel a bit frightened that my good luck (if you can call it that) may run out soon...one of these days the scan will show some movement of tumours and I want that day to be so far away it's unbelievable...

love Clare xx

Had another treatment this week...all went well and I was home in record time ..back by 12noon!

A lady I have got to know there will be having her last treatment in 3 weeks time and to say I'm jealous is not quite right but I so wish it was me and that I could say I'm 'cancer free' for the time being...

I think we'll be having a bit of a celebration on the ward that day, as to reach the end of treatment is a huge thing. I bet we both cry as we both got teary the other day just talking about our situations to each other.

It's funny how people are different though..I had my mastectomy and chose not to have reconstruction...my surgeon ruled out immediate recon and then after they didn't encourage me to have it done either, so I haven't bothered. The other lady on the otherhand had immediate reconstruction tweeking and fiddling about until it was right for her and is having more surgery to make it exactly as she wants it...she even refused a port in her chest wall as she felt it would look odd....for me having one in the arm is odd!!

Funny how two people going through the same thing think so differently. Maybe if I hadn't got secondaries I would be going down the recon route and trying to get my life back to 'normal'...my life will never be the same, no amount of surgery will rid me of this disease so I'm just glad to be here as I am for as long as I can be.

Love Clare xx

woohoo...

My Power Port lived up to it's name and delivered the contrast dye for my scan as it should...no reason why it shouldn't have but I was a bit anxious that it worked properly!!

As usual no one knew what was going on....te radiographers hadn't heard of the dye being passed through a port before and hadn't heard of Esme or Sheila who are the hospital's line/picc and port specialists....

I got there at 1pm and started my barium drink....yuk! Luckily Esme turned up at 1.50pm to get me ready for my 2pm appointment.  She explained to the radiographer in charge what it was she was doing but they still looked a bit confused!

All hooked up and ready for my scan she connected the contrast dye tubing and asked the radiographer what psi their tubing was and it's 300psi.....to my relief she told them that the port tubing is 400psi, so that made me feel better as I knew it would withhold the pressure.

Scan went ok and I had a audience watching the dye being delivered direct to the central line.

All done and Esme explained to the radiographers that although they can't deal with ports now it won't be long before they do as RBH are slowly getting people to have power ports fitted instead of  picc lines as it just makes thins a whole lot easier.

I must say it was a damn sight easier for me and no pain of them trying 3 or 4 times to canulate me and bruising my arm.

Now all I have to do is sit it out and wait for the results...16th November!!  I could make an appointment in a couple of weeks time but I can't see the point of going to the hospital and waiting around more than I have to I have to have a full set of bloods done too and another heart scan before my appointment in November so I'll have all the results together.

Love Clare xx

After my last post about being fed up I've 'had a word' and got back on SW 100%.

Had a lovely day today cooking with Wendy, we managed 4 recipies in all and shared the proceeds!!

For some reason, and I think I may know a small part of it.....I am extremely happy at the moment.  

I belong to a forum for BC 'sufferers' and sometimes it's just so upsetting to join in on there...I belong to the secondaries forum and we have a couple of very poorly women who aren't doing very well at the moment..

To be honest I've not been on there much at all and when I have I've skipped through the posts...

I know what's going to happen to me eventually (if the proverbially bus doesn't get me first) and I really don't need to live through someone else's suffering in a way that I may well suffer...

The forum is fantastic for info on treatment and trails available but sometimes a bit miserable for everyday mutterings...I shall leave it for a while as I love this lifted mood I'm in...

Obviously it's not just that that's making me smile...not sure what it is...but I'll have some more please...

Love Clare xx

Oh I'm so fed up with myself....

I really would like to lose 14lbs and am struggling big time with it.  I know what to do and how to do it it's just putting it in practice.

When you get told by 'medics' that you have a limited life expectancy, I know no one knows when the grim reaper will turn up but being told that in all probability you may not live another 5yrs the thought process changes and I then go on to think I should be able to enjoy what I like and not bother about watching what I eat....I do that and end up putting weight on.

I know the medication I take is renound for changing metabolism and I'm also being thrown in to the menopause un-naturally.

What can I do to get my head round this 'dieting' block that I've got?  I hate the thought of having more chemo, losing my hair again and ballooning like I did last time with the steroids.

I'm just so fed up think I'll eat some cake!!  You think I'm joking.....Jon has just cut me a slice of Porter Cake...yummmm.....

I will get this 14lbs off and by Christmas.....hopefully Christmas 2009, if not maybe 2010.....

Love Clare xx

My brother-in-law found this in the free newspaper 'Metro'

Despite the development of many newer drugs, tamoxifen -- which prevents tumors from being fuelled by the sex hormone estrogen -- has still remained the gold standard in treating hormone sensitive tumors.

According to the study published in Cancer Research, the long-term use of the common breast cancer drug places the consumer at an increased risk of developing a more aggressive, difficult-to-treat tumor.

Tamoxifen lowers the reoccurrence risk of estrogen-positive breast cancers by 60%.

It, however, increases the risk of developing a second ER negative (estrogen receptor negative) tumor in the opposite breast by 440%.

Scientists urged women to continue taking the medication despite the findings of their study, adding that the odds of developing a second tumor is very low in these individuals. 

So do I think I'm one of the unlucky ones and had been taking Tamoifen for 18mths when my 2nd harder to treat tumour appeared in the opposite breast?

Can I really have been that unlucky to be taking a drug to help my liver and lung tumours and ended up having a mastectomy?

Two questions I will never know the anwser to....

I'm still taking Tamoxifen - should I continue, what would my consultant say I wonder (I will be asking on my next clinic appointment), they always seem to brush these sorts of things to one side as they hate to be challenged on the treatment they are giving....

Something else to think about on top of everything else....

Love Clare xx

 

Herceptin treatment - have given up counting what number I'm on.....

Jack normally stays at Grandma and Grandad's the night before treatment day so I can get a move on in the morning...last night he stayed here and low and behold he had a sleep in this morning!!

Anyway that's by the by and we managed to get to G & G's by 8am, so I could get to the hospital and park before all the spaces went!

I 'booked in' on West Ward in the hope that they'd 'order' my treatment then, no....they wouldn't (or should I say the receptionist wouldn't **see below!!) until I had the 'ok' from clinic that my heart scan was ok and the treatment card signed off....

Met up with a lady called Fiona who I've met a few times before and we exchanged health updates...thankfully neither of us had anything to report.

I have to put some numbing cream on where my port is and it's not easy ....well it is but not for me! I managed to get through 3 sticky dressings as missed the target twice and the cream splodged out over my top...nice!!

Having managed to do that I went downstairs to clinic...and waited...and waited...my appointment was at 9.30am and a friend of mine had her appointment at 9.50am...she managed to get seen before me and we both laughed at the the system down there only to be told my blinkin' treatment card had gone walk-abouts, I swear it has legs as it's always getting lost!

Dr Charlton was....on holiday (again) surprise surprise!! I saw a lovely registrar called Kate who was extremely thorough, which sometimes isn't the case with Dr C. She suggested a CT scan before my next clinic appointment in November and bloods too, did a thorough examination of my chest and neck nodes and checked my liver - which she couldn't feel, gosh I was sure I had one!!

I questioned whether I was staying on Herceptin indefinitely and she said they initially thought a year would be good but seeing as I had a good scan result in February it must be doing some good so they'll keep me on it at least until I've had the next scan. If my tumours are on the move then they'll take me off it and have a re-think....

After a heart scan they give me the results and also put them on my notes...well the one time I forgot to take my copy they hadn't put them on the file, so that caused a bit of delay..

I had a good chat to her about how I feel when people question my illness...and what I mean by that is someone was shocked that I had been given ill health retirement and more or less implied I was cheating the system as I look well etc.... I said to her that it's so difficult with BC as it's not a major organ that's diseased it doesn't make you look ill or be unable to function properly unlike bowel, colon or lung cancer.

Also the one thing that really pee's me off is people saying 'oh you'll be ok' - well I bloody well won't! That isn't being negative it's being honest and a fact!

She got quite cross that I was having to hear these comments and said that we both know there is something major going on in the background and you only have to spend a day at the Cancer Centre to realise it's not all plain sailing...

We had a good chat about it all and I felt so much better for it.

It was so nice to have a chat about how I felt in my head rather than than the usual 'are you feeling ok with the treatment' sort of chat.

Back upstairs for 10.30am and my treatment was ordered...would be up about 12noon!!

They were so busy today as they were short staffed and I didn't actually get called in until 1pm..

All ok with the treatment and I was free to go at 3pm..

** asked the staff nurse if I show my heart scan results to her next time can they get on and order my treatment before I go to clinic....answer...most probably!!

So all in all a good session today...just hope the scan date comes through and I don't have to do the chasing for it

Love Clare xx

A year ago tomorrow I had my left breast removed....has it effected me ...yes and no...

The actual look of the scar and surrounding area doesn't bother me at all...it was a body part that was infected by a hideous disease and had to go...

...what does is the fact that it's so difficult to find bras that are any good, I desperately want to scream when I'm in Marks and Spencer/John Lewis...I want to shout out to anyone that will listen that it's not all about pretty pink/blue/purple size 36b's...there are some of us that have extreme difficulty find even a bog standard white bra that I can fit my rather large prosthetic boob into.

I hate the fact that I can't just go in and buy any top I like.....I have to try them on to make sure the neckline is ok and it's not to low that it'll show the hollow in my chest....

One year on ....It's not as hard as I thought it would be.

love Clare xx

After a year in the planning, Wendy's 'madcap' idea of holding a 'Pink Summer Ball' was pulled off in magnificent style.

It was held at the Calcot Hotel and the room was fantastic, so much work had gone into it by Wendy , Lesley and Sara.

140 people all there for one cause.... to raise money for Breast Cancer Care.

The food was lovely, drink flowed and all the women looked lovely and the men scrubbed up well too!

On arriving at the hotel we booked in and I was given a lovely bouquet of flowers from Wendy, Sara and Lesley...they are so thoughtful and kind.

I had my make up done by Amy and Katy, it looked fab and so professional. Jon looked fab in his DJ too..

When I got to our table there was an envelope at my place setting....a lovely card with lovely words from my best friend...made me very emotional..

Wendy got up to do a 'thank you' speech and again said some lovely words which made me all teary again...

The dancing started and the band were great...Rock 'n' roll, disco after and lots more to drink!!

I had such a wonderful time with wonderful people.

The evening ended at 2am when Jon and I finally gave in and staggered back to our room!!

I'm extremely lucky to have such lovely family and friends....

Love Clare xx

That's it.....

Went in to work today to do things officially...

My employment has been terminated after 3yrs of being off 'sick'.

I had 4 options to chose from and really it was a no brainer (well I thought it was anyway):-

1. No work no pay but keep pension and benefits
2. Go back to work
3. Be dismissed on grounds of being incapable of doing the job
4. be dismissed on ill health grounds and take ill health early retirement- subject to the application being approved by the Pension Trustees

It's all signed and has been sent off and I was officially retired from 1 May 2009.

Without the help of my 1st line and 2nd line managers I doubt it would have ever been sorted out. They have been 'on the case' since last June!! as they knew that it needed to be sorted by the end of April this year...only 3mths late but it was worth the wait...(it was all very complicated due to a Company takeover last April)

Now I am free to enjoy Jack (and of course Jono) without the worry of work hanging over my head.

So thanks to Spencer and Clive for sticking up for me and ensuring I was treated fairly and getting a result that I am extremely happy with.

Love Clare xx

Finally been given the go ahead to take ill health early retirement...

Spoke to the Pru who need to send me new pension quotes and then said it would take 10 working days...are there really that many people retiring from the Pru that it takes 10 days to get a quote out??? - I don't think so as most of the now work for Capita....silly woman even asked if I was still wanting quotes under ill health retirement...Felt like saying "no I've made a miraculous recovery from an illness that your Trustees deemed bad enough to grant me ill health retirement"

At this rate I'll either be an OAP or dead before it's all sorted out!!

Have to go in to see my manager next week so hoping we have some figures to work on by then.

love Clare xx

Had a lovely time in Spain....

Jack really enjoyed his first plane trip, so much so he fell asleep about 5mins after take off!!

Arrived at Malaga, greeted by the car hire rep and taken to the car...all quick and painless...sat nav programmed and off we went...

Ihr 20mins later we were sat outside a bar with Paul and Janys having a beer or two!!

On to their house and to unpack.

The changes they've made to the house are really great, new bathroom in the upstairs house, new kitchen in the downstairs house and lots of different bits and pieces to make it really Spanish and homel...oh and of course Sky for British television!!

Had a very lazy week really, a couple of trips to the beach, a visit to Gibraltar to get cheap(ish) booze and a lovely afternoon spent at Janys and Paul's friends enjoying their jacuzzi, pool and proper Spanish paella.

My diet wasn't really scuppered as I had a mouth full of ulcers for most of the week so couldn't eat or drink as much as I would have liked - think I only put on about 3lbs.

Jack was good all week and only had one meltdown moment on the last day (possibly due to too many late nights and the heat).

Back home now and back to normality...

Looking forward to Oasis next Saturday and 'The Pink Ball' the Saturday after....

Love Clare xx

15th Herceptin

Today I had my treatment, a few days early as I didn't really want to have it done the day before we went on holiday.

The port I had fitted last week was accessed successfully by the vascular nurse (Esme). It really hurt though, as it was still healing I couldn't have the Emla cream applied to numb it and Esme had to press down hard on the port to determine what length needle to use. Once the skin was pierced it didn't hurt at all.

I sat there all the time hands free and it was excellent as I didn't have to worry about a canula getting in the way.

I also opted out of having piriton as that makes me so sleepy. I survived with no reaction so won't need to have piriton again.

Finished off the session being armed with spare needles, Emla cream and dressings...

So glad I had it done. Only thing I have watch is if I don't have any treatment for 4 weeks for whatever reason it has to be flushed out...there was mention of teaching me how to do it!!

Love Clare xx

Today I was fitted with my port....but very nearly wasn't!!

The port was ordered from Belgium and when it arrived yesterday morning apparently it looked like someone had sat on it!!

Another was re-ordered and delivered to the Bard rep in Oxford this morning and she drove it down to Reading for them for this afternoon...

I had to starve from 9.30am no mean feat seeing as I scoff all day usually!!

Dropped Jack off at Sinead's, as it was Mia's birthday treat this afternoon at Madhouse (soft play)...

Got to the hospital at 12.45 and realised as we were halfway there I'd forgotten my book - drat

Was told to sit in the 'Intervention waiting area' where there was not one magazine in sight not even one from yesteryear!!

Went through to the X-ray room at 1.45 (a tad late but hey ho!!)..canulated up for the sedation, ECG pads on and marked up with a black marker. Sheila the nurse specialist who was doing the procedure started to sing the Umpla Lumpa song and orange iodine was spread VERY liberally on my neck/shoulder and right side of chest...

I was given sedation and was so disappointed as I thought I'd be in a state of wooziness...but nothing happened...well I thought not but apparently I went to sleep...as I said the sedation did nothing for me and Esme the nurse who was administering it said well it's 3.50pm and you've been drifting in and out of sleep!!

I could feel them routing around by my neck and pressing on the port to get it under the skin but it didn't hurt.

As I was stitched up, I could feel it but as I'm rock hard said it was ok and didn't need anymore local anesthetic...glue went on next and then I was unhooked and sat up for a while to regain my bearings.

I was given a load of gumph and a special needle to take with me when I next have a CT scan as they will need to use this instead of the 'bog standard' ones.

After a lovely much needed cup of tea I waited for Jon to come and get me.

There were no dressings on either cut but the port cut started to bleed a little at the end so I now have a dressing on it and can take it off tomorrow.

Started taking Arnica tablets last week and will carry on next week in the hope that it will minimise the bruising...and taking Ibroprofen/paracetamol for the pain and any inflammation.

So next Friday will be the first time it will be used -fingers crossed it's all ok.

All in all a 'strange' experience but much needed to ease the discomfort of nurses trying to find veins everytime I need treatment.

Love Clare xx

14th Herceptin

Another 3 weeks have passed by and I was back at the hospital today. Had my 3 monthly appointment with the consultant this morning only he wasn't there (as usual), so I saw the lady oncologist who is rather brusque...but I quite like that.

Waited over an hour to been seen and was in the room for a total of approx 4mins!!...must be a record!!

She said my heart function was ok and that I could go ahead and have the treatment, when I said that I had already booked my next (and last heart scan) she said that I was going to be on Herceptin for the foreseeable future. Which for me is excellent news.

Off I went and reported upstairs, only to be told I was down on the list for tomorrow!! I do normally go on a Tuesday except for the times I have to see my consultant as his clinic is only on Monday mornings...he had forgotten to change the date on my treatment card -doh!!

The receptionist managed to persuade pharmacy to make up my drugs for today but they said it would be approx 3hr wait. So I went into town and did a bit of shopping.

They are so good considering they're so busy they even rang my mobile to let me know that the drugs were ready when I was.

Now for the exciting bit (well exciting to me anyway!!)

On Friday 12th June I'm having a Power Port fitted - no more fiddling around trying to find veins. It's a brand new design that can also deliver contrast dyes for CT scans at the right pressure.

It's done under sedation and takes approx 2hrs.

http://en.wikipedia.org/wiki/Port-a-Cath

I'll be the first at our hospital to have one of the 'power' ones fitted. There are only 34 others in total who have a port and at a cost of around £3k I'm not surprised.

So when others are moaning about the treatment they get at our hospital I have nothing but praise,they really are looking after me and doing what's best for me. it doesn't always go smoothly but that's life...nothing ever does!!

Love Clare xx

3yrs ago today I was diagnosed with primary and secondary breast cancer...

Considering in the report my consultant did for my employers a couple of weeks ago he said my prognosis (without responding to treatment) was 8mths...I reckon that's pretty good going!

Talking of reports...after my employers pestered me to hassle my consultant for the report they now say that the Trustees of the Pension scheme aren't meeting until 30th June....so I have now been paid my last sick pay and have no more 'pay days' until I can start taking my pensions (and even that's assuming they give the go ahead).

I can't even decided what to take from my frozen pension as it all depends what Capita will or will not offer me....

My 1st and 2nd line managers are furious about this but apparently the trustees only meet twice a year and nothing they do or say can speed it up!!

Anyway not an anniversary for celebration really just glad to have got this far -phew!!

Love Clare xx

Yippee!!!

I've finally managed to shift a stone in weight, took a while mind you but that's because I kept straying and thinking half a bag of crisps/one biscuit/ a few nuts/ some sweets wouldn't do any harm...

Last week from Wednesday morning until I got weighed last night I stuck to the 'rules' and lost 3lb. To say I was chuffed is an understatement. So my plan is to do it again this week!!

I went out Saturday for a friends Hen 'do' and did feel that I was a bit of a party pooper by offering to drive and also not fully indulging in the curry. I had a biryiani, one poppadom and some diet cokes..yes I wanted a starter/naan bread/side dishes and a few bacardi and cokes but once the table was clear and the food eaten or taken away the feeling of want had gone.

Did it do me any harm...not in the least. I woke up on Sunday feeling fresh and not hungover and very pleased that I hadn't given in.

My reward was 3lbs off and that feels so much better than a bloated stomach due to too much curry!!

Ive got 12lbs or so to my target so it's doable and I hope to lose more by the time I we go to Spain so I can relax a little bit and enjoy good food and wine.

Love Clare xx

13th Herceptin

Another 3 weeks have flown by and I had my 13th treatment today. All going ok except the fact that yet again it took two attempts to get the canula in.

The nurse who was doing it said I should speak to my consultant about having a portacath put in as it would make it so much easier. My oncologist has said that if I had to have more chemo I would need something doing whether it be a portacath/pic line or hickman line.

I got up to leave today and said the lady next to me that I wouldn't see her next time as I have to swap days and the time after that swap again due to my holiday...we then realised that the next time we'll see each other is in July - very scary indeed, where have the months gone?

Diet is going ok, trying to be good but it's so hard to keep up and I only lost half a pound this week. I have 6 weeks until my holiday so I need to lose some weight as I'm bound to put on whilst I'm there.

Not much going on really, have had a pension quote from The Pru and am waiting to see if Capita can manage to get their act together...or indeed tell me if they will give me ill-health retirement!!

Will try and update more frequently but it's so hard to write posts about nothing really...but that's good as I don't want to have things to write about really...does that make sense??

Love Clare xx

I now have my consultants report for my employers....not I might add until I'd pestered his poor secretary until I think she was ready to resign!!!

He only took 7 weeks to do it...apparently that is good going!!

Got the news on Friday that he'd done the draft and sent it to me for my consent to send off.....Nothing had arrived by yesterday so his secretary said I could go in and pick up another copy.

I collected it this morning and all looked and read ok....except my address. He'd used my old address from 2.5yrs ago and sent the original there!!!!

I expect the lady in my old house had a nice time reading all about my illness.

I just don't understand where he managed to dig that address up from as I get all my scan/echo etc letters to my new address.

Oh well at least the report has been done and will be faxed to Capita tomorrow.....wonder how long it will take them to decide if I qualify or not for Ill-health retirement.

Love Clare xx

Mixed feelings today....

Got up happy and had a good morning at playgroup with Jack.

Phoned the Pru pensions admin and they told me I've been accepted for ill-health retirement -yippee. Just have to hope Capita also decide the same. My consultant is dragging his feet where my medical report is concerned, I know I'm not his only patient but come on, 6 weeks ago he got the request!!

Back here for lunch and found and Email from Kate's neice Emma...I knew the email would tell me what I'd been dreading...Kate had passed away..for those that don't know she was a 'cyber' friend that I met through a forum for women with breast cancer 2.5yrs ago. When I joined the forum she sent me a private message welcoming me and we had quite alot in common, just little things but it warmed me to her and she was a huge support to me (albiet over the internet) when I was re-diagnosed last year. She was such a brave woman and fought to spend every last precious minute with her beloved family.

RIP Kate.

So happiness and sadness all in the space of 30mins...how strange life is.

love Clare xx

12th Herceptin

Haven't written here for a a while as I haven't had much to say (yeah I know that's unusual!!)

Had 2 extra Herceptin treatments since I last did a treatment update as I had to have a weekly dose and a two weekly dose after I was poorly at my 9th March session. Everything is ok again and it must just have been the fact that I was feeling rough to begin with.

Went for another Herceptin today and all went well. I normally have a sleep as soon as the drip starts as I get very dozy with the piriton they give me. Today I didn't sleep at all as I got chatting to another lady who was having the same treatment as me.

Consequently I was very tired this afternoon and laid on my bed with sunshine streaming through the window...lovely.

Have had a busy couple of weeks over Easter...Jon's sister Mandy, Nick, Olivia and Megan came to stay Easter Sunday for a couple of days and we had a lovely time. Jack loves his cousins being here and they all behaved themselves too!!

Jack had a go on the Wii but we won't be getting one soon as he's far too young (so say I)

The weather has been glorious this weekend and Jon has sorted all the plants in the garden and it's looking good.

Still haven't found a work surface that we both like....I won't compromise as it's something we have to look at everyday.

Diet is going well again after a couple of weeks gaining and losing a few lbs, back on track and am determind to get to my target by the end of June.

love Clare xx

What a week it's been so far and it's only Wednesday...First Mum's birthday, then Jack's, then mine...

Jack had a lovely birthday on Monday and took opening all his presents in his stride.

I got thoroughly spoilt today and have received lots of lovely presents from very generous family and friends.

Was at Mum and Dad's this afternoon and there was a ring on the bell so I went to answer the door and at first I didn't know who it was standing there...bugger me it was only Ray...he'd been to visit Sylvia and Dom and thought he'd pop into Mum and Dad's to see how I was doing!!

I haven't seen him for over 11yrs, of course I get to hear how he is through Ang and Hilary. Considering he's had bowel cancer he looked very well indeed and I'm not sure if it was a brave face or not but he seemed really positive now his chemo has been sorted out.

He's 'step' grandad to two little boys and seems to be enjoying life - I'm glad he is.

So another year older and one I thought I'd possibly not see 3yrs ago...how lucky I am that treatments seem to be working for me and I've been given so much more time with my gorgeous Jack and of course Jon.

Looking forward to the weekend as we have Mandy, Nick and the girls staying....

Love Clare xx

My wonderful Mum......80yrs old

What a lovely day I've had with my family over at Judith and Gerry's celebrating Mum's 80th birthday.

We got there about 11am so I could give Judith a hand with a few bits but she'd done most of it anyway.

Jack was entertained all day by his cousins playing football and he even went next door to play with the children there on their trampoline.

It was lovely to see Martin and Danuta and have a nice chat with them both.

Buffet was ready for 1pm and my goodness it was a very nice spread indeed...I ate far much more than I should have but hey..your Mum's only 80 once!!

We gave Mum a digital photo frame and had loaded a memory card with photos from each of us and a few special ones that I'd scanned and put on there for her from years back...here are a couple of them....


My Mum means the world to me and has done so much for me over the years and as far as I can remember she has never once raised her voice to any of us, has always been there to comfort me and laugh with me.....she is the most wonderful, loving, selfless mother anyone could wish for...and I was lucky as she's my Mum.


Love Clare xx

Why are things never straight forward??

Went into town yesterday to have a look at a dress for the ball in July....it wasn't really suitable for me so whilst I was in the mood I had a shop around...

Tried on several dresses and all looked pants on me! I just happened to be walking past Country Casuals (yes, I know...ha ha) and spotted a dress in there that looked perfect for me and it was in the sale, so I went in tried it on but it was too big (at last). They didn't have anymore so I left feeling deflated and thinking will I ever find a dress with a suitable neckline?

Got home rang CC customer services who gave me the name of stores who stocked the dress...the first one I rang in Henley had one in the size I wanted and they let me pay over the phone and they would post it to me.

It arrived today....tried it on and it fits like a treat..BUT I noticed all over the front there is red marker pen....grrr!!

I rang the shop and they were very apologetic and said to take it back for a refund...they didn't have another one.

I rang another couple of stores who didn't have my size either...beginning to think it was not meant to be and rang one more shop in Beaconsfield...yeah they had one and will send it to the store in Reading where I can exchange the other one.

So semi-happy about it will be very happy when I have the replacement hanging in my wardrobe.

Can't really fault the shops as they all tried their best to help me and the Henley manageress was so embarrassed...(red pen is what they use to mark down reductions)

So I will wait for the call to tell me it's there.

Love Clare xx

After a 4 week wait I finally have my scan results...

It took my consultants' sidekick (his registrar) - the lovely Dr Scott-Brown, 40mins though to track them down as I could hear him on the phone through the door!!....I was going to give him what for but didn't have to, he was giving the radiographers what for and he wasn't a happy man but it 1got a result for me.

All looks ok BUT...there is a 5mm nodule on my lung that they aren't sure if it's the same one that's been there before or a new one - work that out 'cos I can't!! - surely you just look at previous scans or is that too logical??

The scanner is brand new high tech and he thinks that it has just showed the original nodule up much clearer...Yes, you've guessed...we'll keep our eye on it and re-scan in a few months time.

I had a bit of a reaction last time I had Herceptin and they've decided to give me 3 weekly doses once a week for the next 3 weeks together with steroids (urgh!!) and if there's no reaction then I can go back to 3 weekly doses (without steroids) I did admit that I'd been feeling poorly the night before the last treatment and think I may just have been dehydrated and not 100%...hopefully that was the reason and not an allergic reaction.

I did mention to him that I need 2 health reports doing and that my consultant's secretary said she'd pinned the medical request to the front of my file....registrar said the best place to pin the request was to my consultant's forehead!!! - looks like I'll be chasing that too...grr!

My appointment there today was 10.10am, went into one of the side rooms at 10.40am (30mins late not bad really)...got out of there at 11.40am and the look on people's faces when I walked out of the door...I, for once, was the one who took ages!!

Love Clare xx

Since my diagnosis I've been in a long term sick scheme through my employers. (I didn't ask to go in to it they automatically did it for me).The scheme runs for 2 years and my 2 yrs are up on 23rd April..I have the chance to apply for ill-health retirement under the Company I am now employed by (Capita) and to apply to my previous employers to take my frozen pension (Prudential - Capita took us over last April)

I have had a letter from my old employers saying their requirements and how much per annum my pension will be.
My current employers won't give any indication of the amount I may receive if it's granted and to be honest it's really worrying me...

At present I get 65% wage and incapacity benefit which I presume will have to be given up if I take IHR..I can't understand why they won't let me know how much I'll get as they must know how much I'll get.

I'm also very miffed that I should have been given the chance to take IHR when they put me into the Long Term sickness scheme, as my previous employers enhance the pension to normal retirement age...but alas it's now frozen so only get 20yrs service worth instead of 39yrs...

Again my current employers won't indicate what enhancement, if any is applied..and unfortunately under TUPE a pension isn't counted like other Terms and Conditions.

I'm seeing my consultants on Monday and know that he's already had the request for a medical report as his secretary said she's pinned it to he front of my notes for him. She said I should press him to make it urgent as she's still chasing a report that he had in November - if it takes 6 months to sort out I'll be so annoyed.

If I was still employed by Prudential they would have it all sorted by now and have been thoroughly professional...BUT...I'm now employed by Capita and they haven't a clue!!

Even if I get accepted for IHR I don't have to take it but knowing the figures would help...

I have been given the options of:

• Go back to work - even though there is no job for me now as all our work has been migrated to Mumbai! - (I was offered redundancy 2 yrs ago but declined)
• Stay employed on a no work no pay basis - that way I get to keep my death in service
• Take IHR (if they think I qualify for it after getting medical reports)

So not really much choice but to hope the Trustees of the Pension scheme agree that I can take it and then that the figures are ok.

Scary times....

Love Clare xx