Monday, 31 May 2010

4yrs ago today I was diagnosed with metastatic breast cancer...

I'm still here...

Clare xx

Sunday, 30 May 2010

Just a quickie as I haven't really got much to say at the moment.

Still waiting for my radiotherapy dates, will chase on Weds if I've heard nothing...guess that's me chasing then!

Have had 'twitchy' pains in my right side on and off for a couple of days so will see how it goes and if they get worse will go back and see consultant.

I have actually been feeling sad this week that all the plans we have for our future, our house and Jack, I may not see through...I know if I died suddenly (run over by a bus etc) it would be no different but it's the knowing I have a death sentence over me and now trying to hurry things up that I'd normally take time over.

Also I have a review date from DWP so I need to complete a large part of a huge (39 page) questionnaire and see my GP about it.  My GP is lovely and is very thorough so it shouldn't be a problem but still is on my mind niggling away. I have phoned DWP twice and had differing advice...one said just get your Dr to complete a DS1500 (under special rules) and the other said complete certain pages..may try a third time and see what they say this time!

Love Clare xx

Tuesday, 18 May 2010

Heart scan/Results day today.

Got to the hospital early (as always) and went along for my heart scan and realised that if my notes were in the cardiac unit how would my oncologist be able to see them?  I asked if I could take my notes with me and they said only if I took them staright there.  Oh how I would have loved an hour or so to have a good look through them!

Heart is ok so Herceptin can carry on until they dedcide otherwise.

Made my way down to the Cancer clinic (what a horrible but apt name) and was greeted with words 'we're running and hour behind'.  Blimey he was still seeing his morning patients!!

I sat and read my book for a while then my nose got the better of me and I had to stop so I could listen and look at what was going on.  I finally got called in at 4pm (appt was 2.50pm) and was seen by Dr Charlton's registrar, although he was in the next room dishing out advice (all good I expect!)

She said that the scan showed 'progression of disease' in the chest wall, which would explain the pain I've been in over the past couple of months. Plus a 'proper' tumour has appeared in my liver (before it was just a measly nodule/lesion...so it's been promoted) and I now have 3 lung tumours 2 of 7mm and one just a bit bigger.

They decided between them, after a brief conflab, that chemo should be kept for later on.  As I'm not presenting any 'ill' symptoms just pain it would seem silly to use one of the 'big guns' now rather than when it's most needed.

For the chest wall pain they are going to organise radiotherapy (5 sessions) and hopefully that will ease the pain.

I asked what about the liver tumour but apparently it should be ok for a while, however, if I feel nauseous or find it difficult to eat (yeah that 'll be the day!!) or drink, I need to contact them immediatley and we can get on with sorting it out.

I will have another CT scan at the end of July and take it from there.

So for now I get to enjoy the 'summer' without feeling crappy and being bald.

It's not the best news but it could have been worse as they could have said for me to start chemo straight away...

There's always a bright side...

Love Clare xx

Sunday, 16 May 2010

Back home after a week in Menorca.

We had 3 really hot days so managed to get on the beach a couple of times and in the pool at the apartment.

Thursday night/early morning we had a massive thunderstorm and torrential rain and it didn't stop until 4ish on Friday afternoon.

The apartment was fab and the owner had more or less thought of everything, flights were brilliant too.

It's been 10yrs since Jon and I went there and we still remembered most of the Island.  It has got very expensive though (blame the Euro) but that said we still ate out every day and enjoyed ourselves.

Only downside is getting back and having washing to do and cases to sort out.

Tuesday must have been on my mind whilst I was away as I had 2 really awful dreams about it.  Mind you I also had a bizarre dream that all my nails fell off!

I hope Tuesday brings some good news for us I really do.

love Clare xx

Thursday, 6 May 2010

Pain Pain go away...

I'm in quite a bit of pain now in my shoulders and round the front where my scar is.  I sneezed this morning and thought I was being crushed from inside.  I can't cough properly as I can't take a deep enough breath.

Haven't been sleeping well as it wakes me and then I can't get back to sleep so feel so tired all the time.

I just want to go and have a nice holiday next week and then get this sorted out when I get back. Just hope I can last the week without being in too much pain.  Taking painkillers but that's not ideal long term.

I'm scared of what going on in there but can't really complain as it will be 4yrs since diagnosis at the end of May and I haven't really been 'ill' as such or in any pain really.  I feel a course of chemo coming on - boo!

So watch this space as I have consultants appointment on Tues 18th...

Love Clare xx

Saturday, 1 May 2010

Having a busy couple of weeks...socialising and getting things ready for our holiday.

Went along for my scan on Tuesday and all went ok - the scan always does go ok it's the results that may not be what we want to hear.  I get the results on Tues 18th May - well at least I hope to, I have an appointment with my consultant booked for then and I'd hope that all the relevant info would be with him by then.

So two and a bit weeks to go and then fingeres crossed...

love Clare xx

Sunday, 25 April 2010

I have news of 2 arrivals..

Calum Dominic Grealis born Thurs 15th April weighing 8lbs

Jacob William Peter Banks born Sun 25th April weighing 8lbs 10oz

Huge congrats to Hilary and Kevin and to Lisa and Mark

Going for a cuddle with Calum tomorrow and hope to see Lisa and Jacob very soon.

So nice to have some happy news.

Think I'm nearly ready for our holiday, just need the suitcases down and to decide what we are taking, if we need anything I can go and get some bits in the week.

I have my CT scan on Tuesday morning...no nerves about the actual scan as it doesn't hurt or anything, just a bit concerned at what the lung tumour found back in October is doing...all will be revealed on 18th May (I hope they don't mess up like last year and lose my results for weeks on end)

Love Clare xx

Saturday, 17 April 2010

Yay...

Heard this morning that we got the school we wanted for Jack...

So pleased and a weight off our minds....

love Clare xx

Wednesday, 14 April 2010

Only 3 weeks and 2 days until our holiday...

Am feeing slightly nervous about going as I don't have any health insurance just my (European Health Card) and I'm having pain in my left shoulder/base of my neck and all over the top of my back (but only at night), which isn't going away.

I've got my scan on 27th April and have opted to stick my head in the sand (literally) and get the results on our return from holiday.  I don't want to know if there's anything 'going on' before we go, I just want to go and enjoy a week away.  Can this be done if I'm in pain though?  I hope so.

I know I should go and talk it through with my consultant sooner rather than later...but I'm not going to.

All in all feeling pretty shitty just now, so much going on in my head.

love Clare xx

Saturday, 10 April 2010

I seem to be surrounded by sadness at the moment and it scares the hell out of me as I wonder how much longer my luck can continue. 


For the first time since I was diagnosed I'm beginning to get really frightened...

When you meet people through support groups who have cancer or meet people at the hospital on long term treatment like yourself you do put yourself up for sad times...I just doesn't get any easier.

I'm sat here in shock at the latest bit of sad news I have had.

Neila passed away on Wednesday.

I had the pleasure of meeting up with Neila through a Breast Cancer support forum and as we both lived in Reading we met at Royal Berks every 3 weeks when we had our herceptin done together.  She developed secondary breast cancer in her lungs and bones about 18mths ago.

This time last year she was galavanting around the Middle East...

She got quite poorly just before Christmas with fluid on her lungs and had to use oxygen and had deterioration in her shoulder but I saw her in February at clinic and she seemed to be coping really well. Her scan in March showed signs of lung tumour shrinkage...good news I thought.

She had to stop Herceptin for a while and when she re-started she had to have a re-loading on a Wednesday which then made our hospital visits out of sync with each other....oh how I wish I'd had the chance to meet with her one more time.

I know the staff on West Ward will be upset at her passing as she was a lovely lady to have around on herceptin days..

RIP Neila I will miss you and your wise words, laughter and the fun chats we had.

Thinking of Lionel, Christopher and Jenny at this very sad time.


Clare xx

Wednesday, 7 April 2010

My thoughts are with my friend Jane and her family...

RIP Paris...another taken by this cruel disease...

Clare xx

Tuesday, 6 April 2010

Happy Birthday to my darling Jack.

In 2006 when I was diagnosed I honestly thought I wouldn't see his 1st birthday let alone his 4th.

We had a lovely day, Jon was off work too so that made it even more special.  We weren't up too early (7.15am) and all came downstairs for Jack to open all his pressies.  He was needless to say thoroughly spolit.  We went bowling and had a great time...Jack even won the second game!  Off to MacDonalds for lunch (not my idea of a birthday treat but Jack loves it).

Round to see Grandma and Grandad this afternoon and took his birthday cake with us.

He finally went to bed at 8.30pm after he'd played on his DS since his tea....

I truly hope that the run of tests I have coming up will have results good enough for me to see Jack's next birthday.

love Clare xx

Friday, 2 April 2010

Just at the moment I seem to have such sad news to write about.

My friend Jo's little niece passed away yesterday aged 18mths....cancer is a cruel cruel disease and doesn't care who gets in it's way.  Just feel so sad for them.

Paula didn't come home yesterday as they said her movement wasn't enough...I really hope she can be home for her 40th birthday next Sunday (11th) and Alice's 4th on the 15th.

My friend Jane is also going through a very difficult time with a close friend and my thoughts are with her and her family.

I've got a date for my scan (27th April) and I hope to tie in the results appointment with my next heart scan that way I only have to see Dr C once instead of wasting both our time and having 2 appointments....we are talking NHS so anything could happen!

I have been having pain in my shoulder area again and I just hope it's the side effect of the Zoladex as at the beginning of treatment it can flare up tumour sites.

All I want is to get through our holiday and have a fab time with my 2 boys - anything else can be seen to after we get back.

I did managed to have something good happen this week.  I ordered a swimsuit and it looks good (well as good as it can on me), so I'm pleased and I got a lightweight prosthetic to go with it. Cost quite a bit, I'm use to buying cossies for £10 from Asda etc this one was £37 (£22.50 for prosthetic)...mind you most of them to order are between £50- £80.  Now if that isn't playing on someones unfortunate deal in life then I don't know what is!!

Anyway mythoughts are with all those who are sadder than me at this time.

love Clare xx

Sunday, 28 March 2010

Had a lovely Saturday at the trampoline party for Jack and his friends 4th Birthday party.....they all really enjoyed themselves and so did the Mum's and Dad's...thanks to Nicola who organised it all..

Today though had a very different ending for me..I went to see Paula in hospital and I will be honest I was shocked at how she was.  She's been in hospital for a month now and is not really any further on.  She still can't walk unaided be it a frame or a person.  I did cut her hair though as she's never had long hair since I've known her.  She said she felt much better for it afterwards.

She should be going home Thursday but life for her will never be the same again she'll need carers in 5 times a day and a bed downstairs, she won't be able to drive anymore.  I just hope that the time she has left is quality as best as it can be in the circumstances.

Can't write much more as I'm so sad about it...

Clare xx

Friday, 19 March 2010

I just knew that my Drs appointment to have a Zoladex injection wouldn't go smoothly...

Got to the Drs on time to be told that the Dr I was booked with doesn't do the injections and they'd put me with someone else...that's fine I thought.

I waited 20mins past my appointment time got called and went in, I just knew straight away that something wasn't right.  The Dr started off by saying "we have a bit of a problem" the problem being that surgery don't hold Zoladex anymore as it was costing too much, so I needed to have a prescription and go to the chemist and get it, go back to the Drs and he'd fit me in between patients (that was good of him!)

Bit annoyed that this could have been sorted out when I booked the appointment but no probs (so I thought) Boots is just round the corner.  How wrong I was they didn't have any and so I phoned a couple of others chemists and no chemist stocks it as they have to order it in as it's too expensive (£60) to hold stock that may not get used. It has to be ordered in.

I went back to the Drs and said I couldn't get it now and it would be at the chemist Friday morning.  Yep guess what they have no free appointments on Friday (there are only a couple of Drs who are 'allowed' to do the injection).  The receptionist huffed and puffed about giving me one Monday morning but as I pointed out to her it was the least they could do seeing as it was them at fault in the first place.  She finally agreed to give me one of the 'emergency' slots put aside for Monday morning.

I walked out of there so angry and annoyed that something so simple as not giving me the prescription last week ended up with me having to chase around and phone local chemists and having to make another appointment.

I also have a concern about the length of the treatment, the Dr I saw said he'd give a months worth to start with and then it would be 3 monthly - I did point out to him that it isn't licensed to be used on a 3 monthly basis for breast cancer (only prostrate)  but only monthly, he didn't seem to think it mattered but I do as the drug may not have the staying power over 3 months.  I will print off the info I have from the Zoladex website and take it along should there be any disagreement!

So again I have to do the running around and sorting out....I thought I'd got early retirement but I guess not!!

Love Clare xx

Sunday, 14 March 2010

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

Friday, 12 March 2010

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

Wednesday, 10 March 2010

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

Thursday, 4 March 2010

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

Tuesday, 2 March 2010

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

Monday, 1 March 2010

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

Sunday, 28 February 2010

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

Monday, 22 February 2010

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

Wednesday, 17 February 2010

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

Thursday, 11 February 2010

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

Tuesday, 9 February 2010

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

Tuesday, 2 February 2010

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, 26 January 2010

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

Friday, 22 January 2010

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

Tuesday, 12 January 2010

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