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

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

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