A scary thing happened today.

On our way to Judith and Gerry's for Mother's Day.

Jack was sat in the front as there is more room in the back for me Mum and Dad, got as far as Bagshot and Dad suddenly said hanky quick!  He was having a nose bleed and there was no stopping it. Mum had 2 hankies but I had nothing...no tissues/wet wipes nothing!  Mum found a very small towel in the door pocket (I use to put it behind Jack's head when he was a baby and got hot).

We stopped in a lay-by and the blood just flowed out like a tap...this had now been going on for about 15mins, so I phoned Gerry to get directions to the nearest hospital.  We started off again and poor old Dad had the towel up at his face pinching his nose and his mouth was filling up with blood with no where to offload it!!.

We made it to St Peter's in Chertsey and went straight to A&E where he promptly off loaded a whole lot of blood on the floor.  That was probably a good thing as the waiting room was bursting so they whisked him off to be seen straight away.

They put a swab under his nose and bandaged it on. He was still spitting out mouthfulls of blood, this was now 40mins after it first started!!

Gerry came to the hospital and insisted that we all went on to their house and he stayed with Dad.

They put a 'balloon' up his nostril to stop the blood and then said he'd have to be transferred to Guildford to have it taken out in their ENT ward.

Gerry came home and told us what was going on and we rang Guildford after a while to see if he was there...he was and he'd had a funny turn.  He fainted and projectile vomited blood all over 3 nurses...so they decided to keep him in over night.

Can't fault the NHS in this instance as he was all sorted within 4hrs.

Mum has to phone in the morning to see how he's been and then hopefully he can come home.

Apart from that I had a lovely Mother's Day and had some lovely things from Jack...a book/nightshirt and herb garden pots.

Clare xx

I was booked to have a CT scan today at 12.15...

On Monday I phoned my consultants secretary to book an appointment in a couple of weeks time to get results of the CT scan...she got my notes up on screen and said that it had been suggested I have a scan sometime in April and thought radiology had jumped the gun and booked me one too soon, she would speak to Onc's registrar (onc off skiing!!) and get back to me.

When I have a CT scan I have to have a contrast dye that goes in through a vein, as I have a power port it is put through there but I have to arrange for one of the vascular nurses (Sheila) to access it so that the scan people can attach the cannula and do the dye.  On Tuesday I had a phone call from the ward sister on the chemo ward saying that Sheila would be off on Friday so could I go up to the ward and they will access the port for me...no probs at all and very kind of them to organise that for me.

I had no phone call during the week to say the scan was cancelled so arranged for my Dad to collect Jack from school at 11.30am.
 

I phoned the consultants secretary to double check as I had a feeling in the back of my over crowded mind that I shouldn't be going for the scan this early.

She said "Oh no you don't need it today Dr C wants it done in April"  apparently she meant to phone yesterday but was so busy!! (it wasn't X-Ray's fault at all Dr C's registrar had written on the request card (by mistake) '2 weeks time' when she handed it in).

The secretary said she'd phone X-ray and cancel for me - I hope she has as I don't want a black mark against my name for a no-show and also no one can now have my appointment as it's too late to give it to someone else as you have to fast for 4hrs before.

So then I had to get through to the chemo ward to tell them I wouldn't be in to have my port accessed.

Everytime I have to do my own admin for things...is this the same at most hospitals??

Can't fault the nurses/treatment etc just the booking of appointments and any admin bits and bobs.

It's a good job I'm not an anxious person as going for scans doesn't bother me but the logistics of it all does...I like to make sure I'm on time/ car parked ok/childcare taken care off etc...

Friends say complain but if I do what will change...nothing, most probably I'll just get a reputation for being a pain!!

Oh and to top it all I asked if as promised the letter re:Zoladex had been faxed to my GP - well would you believe it...not done!!  Will be done Monday.  If turn up for my appointment next Thurs and my GP knows nothing about itI will explode!!!

Clare xx

Have an appointment with my Drs surgery to have Zoladex injections starting next Thursday...had a a bit of a wobble yesterday and thought I'd made a mistake by asking to have them but after some words of support and good info from the BC forum I belong to I realise that it is the right thing to do.

Saw Paula again last night and she looked a bit better even though she was still very tired, she's got movement back in her left leg but not her right and they are starting radiotherapy on her brain mets next week.  Then she'll have the oral chemo.

Still in hospital until she's had an assessment done on her house and things sorted out there.  I hope she's home with her family soon...

Love Clare xx

Oh I just seem to be a doom and gloom person at the moment and that's not how I like things...

I went to visit Paula yesterday and she's doing ok...we both had a few tears and then composed ourselves...

She's very tired and still cannot walk, she's having 5 lots of rads to her spine and will start oral chemo for the brain next week.

Not sure if it was the meds or not but she did seem confused and forgot Jack's name a couple of times...scary stuff

Will see how she's feeling over the weekend and if she's up to visitors I will go and see her again.

On another sad note my friend and (SW consultant) Claire lost her step son to the pointless 'war' in Afganistan....just feel so sad for her.  He was only home a month ago and was due to finish there in about 4 weeks...now he will be coming home to full military honours - RIP Richard Green....you gave your life for others..

Love Clare xx

Devastated....

My friend Paula has secondary breast cancer in her back and brain - I'm just so sad...

I've only known her 3yrs, I was asked by our health visitor if I'd talk to her about chemo as I'd just finished and she was just about to start...

She had a baby girl (Alice) a week after I had Jack and instead of me just talking to her the once we have become good friends meeting up once a fortnight with the children.

She is a very good friend to me in as much as she will always remember when I'm at the hospital, having scans etc and always sends a text to see how I am on treatment days.

When we were at Madhouse time before last she said she had a pain in her shoulder but her Dr had said it was muscular.  We were supposed to meet last Weds but she had been back to the Dr and a bone scan was organised for that day.

I just texted her today to see if she could do either of the next two Weds and had she got her bone scan results, she texted back saying she was in hospital as the cancer had spread to her back and brain, she can't walk and is on chemo and tablets.

It's just so unfair...she is 40 in April and had been planning a trip to New York and her and Matthew have been planning a quiet wedding in May...

Hope to go and see her tomorrow evening

Love Clare xx

Consultants appointment today....

Didn't get seen until 10.30am!!

Saw Dr Hyde and she said that they now had the pathology reports back from the rib biopsy and it's the1st strain of cancer I had not the 2nd and that there probably wasn't much value in carrying on with the Herceptin...

I didn't agree and sais that the lung nodule may be HER2+ but she said it's more than likely the same as the rib cancer...so I asked how she can make that assumption without having done any kind of tests on it.  So she went and had a word with Dr Charlton and he said I can stay on it for another 3mths and then see what the CT scan shows (which I'll be having before I see then again).

I also asked if I could have ovaries stopped to with Zoladex injections and she agreed, so a letter will be on it's way to my GP as they do the injections...will have to make an appointment early April to get it sorted out.

So after a bit of haggling I'm staying on the Herceptin carrying on with Taxmoxifen, having my ovaries stopped and having a CT scan prob in April or early May.

Love Clare xx

Went up to London yesterday with Jon's sisters Michelle and Mandy, his Mam and Andrew's wife Michelle...

Had a brilliant time...started with Champers in the hotel before we went to the show and then the show...

Saw 'We will Rock You' and it was fantastic (not quite up there with Chigago but a very close 2nd).  After the show we went to a pub for a few drinks.

Went to Chiquitos and thought we'd have a long wait for a table but they called us within 20mins...Andrew, Aaron and their mate Kevin were joining us so we had a huge round table in the corner of the restaurant. 

Andrew got a very nice bottleof champers for us all and we just sat eating and drinking until 1pm!! Our waitress was lovely and put up with a lot of banter from the boys (she was a Geordie), she did say that it was nice serving people from her nack of the woods.

We had such a laugh and my only regret was that Jon wasn't there as he'd had to work all day and wouldn't have ben able to get up to London in time to make it worthwhile.

We got back to the hotel about 2pm and all crashed out in bed...Mandy was by far the worst but hey..there's always one!!

Got home about midday.

Clare xx

What a horrible time I'm having....

Started on Thursday by having a tickly throat, this how my colds normally start and then the throat normally gets better once the cold kicks in.

Friday it was a bit better, although only due to regular pain killers. I did go to bed at 7.30pm though shivering and aching all over. Woke up on Saturday and seemed a bit better, had a nice lunch here with Judith and Gerry and then deteriorated by the evening again.

Sunday I was in agony all day, just like swallowing razorblades and my ears felt like they were going to explode.

Had a  really bad night and phoned up the Drs as soon as I could, went along at 10am and she said I had a severe throat infection...on anti-b's now for 8 days.

It may sound ridiculous saying that I'm having a horrible time but I can honestly say I haven't felt this bad since I had tonsillitus in 1994!!...all through my chemo etc I never felt this bad..gall bladder pain was totally different as it didn't effect my head..

Let's hope the feeling of uselessness goes as quick as it came..

Clare xx

Feeling so much better since having the radiotherapy - amazing what it does.

Good news today, had a letter from Wokingham Council Schools Admissions saying:

"All the evidence you submitted with your applicaton has been considered by the panel.  I am pleased to inform you the decision made by the panel is that Jack's application fulfils criterion B"

Just have to wait until 16th April to find out for definite whether or not he got a place at Radstock Primary. Let's hope there aren't 60 children who fulfil criterion A!!

I was a bit nervous when I opened the letter as I knew who it was from amd thought they were going to ask for more medical evidence. I had already sent a 2 page letter from my GP and a one pager from me, so was worried they would want something from the hospital - Jack would be going to secondary school before I got that sorted!!

love Clare xx

Had my radiotherapy done today.

Had to wait over an ahour though as the piece of metal designed specially for me wouldn't fit the machine.  Then they realised the wrong piece had been sent down with my notes.

It must only have been about a 50second blast if that.

Let's hope it did the job and I am pain free for a while

Clare xx

I was at hospital today for my Herceptin and as it's been 2 weeks since I was told I'll need radiotherapy to my rib and I've heard nothing, I thought whilst I was there I'd go and see what the hold up was.

No request in radiotherapy dept (no surprise there then!).

I told them I would be upstairs having treatment until about 12.30 and they said someone would investigate and come up and see me.

No one came (didn't expect them to), so I went in to see them again on my way out.  Spoke to someone different this time and after a bit of a wait she said I'd been booked in for plannig tomorrow at 10am and that an appointment card had been taken upstairs to the ward where I was -no one gave it to me!

I managed to get her to book the actual radiotherapy appointment for Thurs afternoon as well.

So do you think I would be going tomorrow had I not have enquired - No I don't either!

I get home to find a message on my answer phone saying could I urgenty call the radiotherapy dept as they have me an appointment for tomorrow and they need to now if i can make it - YES!

Hospital admin drives me nuts, I could have had the planning done today whilst waiting for the herceptin to be made up today.

3 trips in 3 days when it could all be so much simpler.

Oh sorry that was a bit of a grumble but always seem to chase appointments and do my own admin!!

Just hope the radiotherapy gets rid of the pain!

Clare xx

Have spend most of the afternoon sorting through Jack's box of cards etc that he's accumulated since he was born.

I now have 4 boxes - 1 for my leaving work and new baby stuff, 1 for his 1st year, 1 for his 2nd and 1 for his 3rd...it was lovely to read through the cards and messages that we got, we had over 70 new baby cards!!!  Made me quite sad as when people wrote the messages they had no idea (nor did we) what we face now. Everyone was so happy for us after trying for Jack for so many years and then the happiness turned to saddness all round.

I really must get on and start a proper memory box for him with things in about our family not just things that he's had given.

There is a website where you can get help doing the boxes...I don't really know what to put in it to be honest.  I'll have to have a look.

Love Clare xx

Tuesday clinic only an hour behind today - it's getting better!

After what seems and age of waiting it has finally been confirmed that I do have cancer in one of my ribs.  At least that would explain the pain I've been having since about July!!

Bone scan showed no other areas of concern so that's good, although she did say that it doesn't mean it won't in the future...hopefully a long way off.

Plan of action is this...

One blast of radiotherapy to the rib 

They are still waiting for some results to come back to see if it's HER2+ or not, if it is then we will probably stop the Hercepitin as it is obviously not doing its job.  If it isn't then they will have a re-think.

She did say I could start chemo now if I wanted but they aren't too concerned with the lung nodule as it's got no bigger since October and to have chemo now would be a waste of ammunition for the future.

So all in all I'm pleased with results as it could have been a whole lot worse.

Love Clare xx

Hopefully that's it for scans and tests for now...just need them to hurry up with results so a treatment plan can be started.

Still getting bad pain in my chest mainly at night and when I lay down - bone scan should sort out why this is happening ..if not back to more investigations I suppose.

Not really got much to write about at the moment as it's just wait, wait, wait.

Clare xx

Ouch and Ouch....

Ouch No.1 was frost bitten toes from waiting for a bus for 35mins...

Got to the hospital with 1min to spare!

The consultant explained what they were going to do and the complications involved, I signed on the dotted line and off we went....

He'd said to me all I ask of you is to shallow breathe...easier said than done when you've just hauled yourself up on to table, re-arranged the gown and have your head face down on a pillow!!

The idea was to take a sample of tissue from my lung ....problem was the nodule was right under my shoulder blade and not very big..(thankfully)

They did a scan got ready with the marker pen and then decided to have a chat amongst themselves...

5 or so minutes later he came in the room and said they'd had decided it would be too painful for me and extremely difficult for them to get a decent enough sample, so I had a rib biopsy instead!!

Not just for fun ....there is an unidentified mass on one of my left ribs and he thought it would be best to get this checked out.  If it comes up negative then I will be going back and they will do the lung biopsy, however long it takes!

Ouch No.2 - it hurt briefly and all I could feel was the scrapping of bone...yuk!

Back in recovery and had to lay down for an hour just reading ...lovely..

The nurse asked who was collecting me and I said no one I was going to get a taxi - oh no I wasn't!!

They won't let you home unless someone is with you. I was so annoyed at this as I'd phoned and asked what the discharge procedure was and the lady who I spoke to said I would be fine on my own and that I could drive!!!  Only reason I didn't drive was the snow!!  The nurses were annoyed too when I showed them the letter that didn't mention anything about having someone to take you home...anyway my lovely Dad came and got me with his friend.

Spend the afternoon at Mum and Dad's being waited on and got home to another letter 'inviting' me for a bone scan next Friday 22nd...certainly getting my moneys worth recently...

So follow up appointment to see consultant on 26th where hopefully they'll have the results of both biopsy and bone scan..

Love Clare xx

All set for tomorrow...well actually that's a lie as I still have to sort out my overnight bag incase I have to stay in...wasn't going to bother with one but you bet I'd need it if I didn't take one.

Jack is at Mum and Dad's tonight, so just myself to worry about in the morning.

It's not a big procedure just uncomfortable (so I'm told)...

The procedure is this...

A CT scan will be performed to confirm the location of the nodule and the safest approach. Once the location of the nodule is confirmed, the entry site is marked on the skin. The skin around the insertion site will be scrubbed and disinfected, and a clean and sterile drape will be applied.

For nodules that are small and deep within the lung, or located near blood vessels, airways or nerves, CT allows better planning of the needle path for a safe biopsy.

CT-guided biopsies require patients to be able to hold still on the CT table for up to 30 minutes. 

A very small nick is made in the skin at the site where the biopsy needle is to be inserted.

Using imaging guidance, the physician will insert the needle through the skin, advance it to the site of the nodule and remove samples of tissue. Several specimens may be needed for complete analysis.

After the sampling, the needle will be removed.

Once the biopsy is complete, pressure will be applied to stop any bleeding and the opening in the skin is covered with a dressing. No sutures are needed.

You will be taken to an observation area for several hours. X-Rays or other imaging tests may be performed to monitor for complications.

This procedure is usually completed within one hour.

So easy peasy really....silly me read up on what can go wrong..damn the internet and me being so nosey!!

I have my Ipod loaded with Ice Age 1,2, and 3, just started a new book too so plenty to keep my occupied.

Having my nails done tomorrow evening and can't wait so I'd better not get stuck in the hospital overnight.

Love Clare xx

At last...

Hospital phoned me today to see if I was free next Tues (12th) to go in for the lung biopsy - eek!!

Have to go to Drs tomorrow to get a blood test done....here's the best bit that probably won't happen....because I was only phoned today at 4pm so couldn't really go to the hospital to get the bloods done as snowed in, so they asked me to make an appointment at my Drs for tomorrow morning and they will fax the form through and a copy of the letter they would have sent me explaining the procedure they are going to do....what's the betting I get there tomorrow morning and the surgery no nothing about it.....we shall see...

Bit nervous and already the logistics of going to the hospital and sorting Jack out are worrying me...Jon is on a course Tuesday (typical)...Jack should be at nursery (snow permitting)...if he is I will need to drop him off at 9am and then get to the hospital for 10am...easy peasy you may think, but there will be no where to park by 9.30am so I will have to drop Jack off, drive to Mum's and get a bus ....hopefully there will be one to get me there for 10am.  Mum will then have to go and collect him at 11.30am

I'm not a worrier of major things but silly things like getting somewhere on time and parking at the hospital really do make me fret.

Feel at last something is being done about the results of my last scan on 1 October .....3 and a half months later!!

Love Clare xx

It's official - I hate Tuesday afternoon appointments at Berkshire Cancer Centre!!

No appointments are nice but by the time of my appointment 3.40pm they were already and hour behind and I finally got in at 5.10pm....

Lucky for me I got to see Kate the lovely registrar...Dr Charlton is great but I always seem to have to chase anything he says he'll do...

First thing I did was say that I hadn't got a date for the lung biopsy and she was quite taken aback and said she'd get straight on to it.

I told her about the pain I was getting in my chest and under my left shoulder.  She examined me and said that it appeared to be either my 4th or 5th rib that was the problem.  She did say that they thought it there was a possibility of spread to the bones.  So next thing is a bone scan to see what they are dealing with and if their suspicions are correct I will need to have radiotherapy.

So at the moment I'm waiting for two appointments, then will have to make another consultants appointment to get results.

She asked if I was taking any painkillers and I said only when it's really bad, so she said to take paracetamol 4 times a day...so I will!!

I'm extremely scared of what lies ahead but will face it head on as always...

Also very worried about juggling appointments with looking after Jack and getting him to and from Nursery School.  As anyone knows a hospital appointment can be 10mins long but could take in total a few hours...getting there, looking for parking, waiting etc

I know I don't have to do the juggling on my own and I have friends who will help but they all have their lives to sort out too...just don't want Jack to suffer because of me..

Love Clare xx

Oh my how fast this year has gone......

Highs of 2009:

January - Jack started Pre-school on Friday 9th, started back at slimming classes

February - Monday 2nd Jack enjoyed his first taste of snow, Bathroom was finally done after dragging our heels over it for 2yrs!!, Jack was toilet trained (missed the potty out totally!!)

March - dinner party with Professional chef at Hialry and Kev's, Hilary's 40th at  the Calcot

April - Mum's 80th birthday 'do' at Judith and Gerry's, Paul and Janys over, Jack's 3rd birthday

May - get together for the 'Biddles' birthdays - Jon prob can't even remember it!!!

June - had my port-a-cath fitted, Lisa's wedding 'do', went to Spain to visit Paul and Janys

July - Oasis at Wembley, Mon 13th I was given Medical retirement, Pink Summer Ball

August - Exmouth for the day with Mum, Dad and Jack, Beale Park meet up with friends, new stair carpet at last so glad t get rid of the horrible old one, Jack and I stayed at Judith and Gerry's for a few days

September - Conservatory finished (plastered, painted new blinds,etc), Coldplay at Wembley

October - Paul and Janys over,went to Boro for a week to see everyone

November - New bed delivered

December - Strictly Final round here with 'baby club' girls and of course Christmas with my family

Lows of 2009 (none until November)

November  - being told that my lung tumours are on the move and being joined by some others too, our darling cat Pookie died on 9th Nov and I miss her everyday

Not a bad year really just ended on a bit of a low, and now heading into 2010 with all the uncertainty around what treatment I will be having

At Wendy and Guy's this evening, with Jack this year as he's now getting to be a big boy and able to join in and stay up late!!...lots of Champers I reckon and definitely a few laughs and tears (as always!!)

HAPPY NEW YEAR to all my family and friends xx

See you in 2010 - I'll be the one fighting all the way!!

love Clare xx

Went along for my dose of Herceptin today and my goodness it was busy...the nurses didn't even get time to chat today...

I did mention my chest and shoulder pain to one of the nurses and she's made me an appointment with Dr C next Tuesday...she said it may be nothing but if they are planning a treatment regime then it's best to get this looked into as I may have to have treatment for this too...

Me...well I think it's most likley bone cancer, starting in my ribs (going by what Dr C put in his letter to my GP), if this is the case then I will need treatment for it.  It gets worse at nights and feels just like you do when you've had an op and the gases get trapped under the shoulders...the chest pain is intermitent and sometimes I find it hard to get a big enough breath to cough...

Still no word of when the biopsy will be done so will tackle him about that too...

Scary times ahead I think but as usual I will face it head on and do my best to get through the tough times. 

Have decided not to continue going to Slimming classes as I haven't been too good lately and to be honest £4.50 to get weighed is a lot when you're not actually losing each week...also now I'm having my nasty nails done (and they look fab) the money I save on SW can go towards having my nails done!

Love Clare xx

Today I went to collect a letter from my Dr that she has done to send with Jack's schools admissions form (yes we are awkward and want him to go to the nearest school not the catchment one)..

The letter is just what's needed and hopefully we'll be in luck and get Jack into the school we've chosen...

However and there is a however...with the letter she enclosed a copy of my consultants latest letter to her...

Not nice reading really and I think she was under the impression that I knew what he'd said to her...

Yes, he's mentioned the original nodule increasing in size and that there is a new nodule, but then goes on to say there is possibility of subpleural ill defined nodules in the right hemithorax and that the texture of the left fourth rib in line with the anterior auxillary line, is also slightly abnormal and could be metastatic...

When I see him next I will most definitly be asking if I can have a bone scan to determine what is wrong with my rib.

It may explain the constant pain I'm experiencing in that area on and off since July but now there all day and at night it wakes me if I sleep on my left side.

So a bit pee'd off that my body is giving in so soon...but is it soon??  8 months was the original prognosis (given the type/size and locations of the tumours) Jon said we'd been lucky to have 3 nearly 4years of me being fit and healthy (obviously not healthy as such...but that's how I have felt)

So we'll be having a lovely Christmas and wait to see what the New Year brings..whatever it is it will be challenged all the way by me and my wonderful support network.

Love Clare xx

I've not been feeling great if I'm honest I have a pain in my chest that's there on and off it's like a muscular pain but I can assure any of you it isn't as I don't use muscles!!

It's been painful since about July and allsorts of things go through my head....lung mets sprouting up all over the place/bone mets in my ribs....heart attack!!!  Of course I've ignored it but now it's bothering me...

I have mentioned it to Dr Charlton but he didn't seem bothered but that may be because he knows I'm having that area looked at soon.

Who knows what next year holds for me....I just hope that it's not as bad as I'm thinking..

So with that in mind I'm determind to have a great Christmas and New Year...Jon and I are buying for each other this year and I have got him something very special...silly, but special that he can keep forever....

Love Clare xx

Good news - well sort of!!

Dr Charlton phone me this evening, apologised for not getting back to me sooner but did explain that he wanted input from all directions before he made a decision on what to do...

They (whoever that is) have done a fine toothcomb look at my last few scans and decided to go ahead with the CT guided lung biopsy but not until after 8th Jan 2010.....he's spoken to the 'lung bloke' who said waiting a few more more weeks wouldn't do any harm and the tumour could possibly have grown by a couple of mm by then giving more tissue to take to pathology.

I asked about chemo and it's on hold for now until they know what they're dealing with...if the tumour is Her2+ then they need to rethink the Herceptin treatment as it's obviously not working...if it's oestrogen + then they will prob go ahead with the Taxotere...

He reckons he'll get to see me end of Jan beginning of Feb for the results and then decide from there what to do.

So a bit of a reprieve over the holiday period.....

Love Clare xx

Yet another of my 'cyber' friends from BCpals has passed away...not unexpected but so cruel so near to Christmas....

She had a lovely outlook on life and was always there to support others and provide information on treatment etc..she wrote something in her blog that I think is so right...

There is no set age for death. People die when they die, not too early and not too late. They achieve what they are going to achieve in the years that they have. We should not mourn the years they did not have, nor the things they did not achieve. We should celebrate the years we shared with them, and recognise that they did what they did, and that it was enough, why should anyone feel angry or robbed when our time comes?   RIP Deirdre

I also had some awful news today that my Auntie Shirley (Mum's sister) has breast cancer and is having an op next Thursday and a scan to see if there is any spread - not sure of the full facts so will ring her later to have a chat.

That now leaves me wondering if either of the cancers I have are heriditery or not....do I need to know/want to know...I don't know!!

Still haven't heard back from my consultant and I have chased it up twice but hate to be a pest...I will ring again tomorrow morning as I think 17days is ample time to have a 'get togther' and decide what to do.

So all in all a pretty sad day for me today...

Love Clare xx

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