Love the weekends as I don't feel quite so vulnerable on my own with Jack. Except Jon was at work yesterday, only has to do 1/13 so not bad but he shouldn't be doing any at all.

Marie (and her hubby) from BCpals very kindly gave me a mobility scooter, will be very useful on days that I don't feel able to do the walk to school.  Jon has trialed it whizzing round the close and it goes quite fast actually. I'm off for a trial run later.

Out for Dad's birthday meal, only up to the carvery (with vouchers!!).  Mum was in bed poorly, think she may have got what Jack had - oops.

Slow start to today as had a cracking headache and was a bit fuzzy.  Wokingham Christmas Carnival today so will pop over there, us and a thousand others.  Jack may well get to see Santa in his grotto.

New tablets taken last night so we shall see what I feel like for the rest of today and if I lose any sensation in my right side.

Busy old day really but that's ok.

Love Clare xx

After a mediocre nights sleep woke up feeling bright and breezy.
Jack was at Mum and Dad's again so Jon dropped me round there at 8am.  Hate Wednesdays as bin day/recycling so busy busy even before we left.

Had brekkie with them (why does Jack eat a huge breakfast for them but not us - grrr) and then I permed Mum's hair, maybe I shouldn't have but I'll be damned if anyone else is doing it whilst I still feel I can (been doing her hair since 1982!!).

Lunch with friends and had a nice chat.

Jon picked us up at 4.30pm.

Ellen my Mac Nurse popped in with a prescription for Epilim Chrono - will see if that works, just trial and error for now.  Will collect tomorrow and see how I go.

Also had some lovely flowers from Sara and family and a rather large box of chocs from Helen R.

So a happy lady here today.  Hoping tomorrow is as good.

Love Clare xx

Feeling much better today, not 100% better, but better.

Rang Mac Nurse and she came out to see me and go through my medication.  Agreed that I should stop the anti convulsion tablets and will arrange some sort of examination, as I obviously need something (she thinks when I lose sensation in right side I'm fitting) but not those.

She wasn't too happy that I'm not taking the Omeprazole, as I really need something to protect my stomach, so suggested I change to a different one.

GP also phoned and did me a prescription for some more tabs. So by tomorrow will be rattling.

Jack was at Mum and Dad's last night and was sick - oops.

He may well stay there again tonight.

Love Clare xx

After a lousy day yesterday not being able to do anything, (and not even having the energy to go out last night), I decided not to take the new lunchtime tablet that I have been prescribed.

Know what, I feel so much better.  Went into town with Jon to take a few bits back and although I was tired not totally exhausted.

Googled the tabs and these are the most common side effects: - all that I thought I was taking the darn things to stop.

• Drowsiness
• Weakness 
• Vomiting
• Infections
• Loss of appetite
• An irritated, stuffy, or runny nose
• Coughing
• Dizziness
• A spinning sensation (vertigo)
• Bruising
• Coordination problems
• Memory loss (amnesia)
• Unusual sensations, such as burning, tingling, or numbness
• Double vision

So after reading that lot I decided to stop taking them.  At hospital again tomorrow so will ask Staff Nurse Kate what she thinks, may even get a cheeky quick chat with Dr C at Monday clinic.  I'd rather have a couple of collapsing episodes a week than feeling rough all the time.

Love Clare xx

Well, a bit of a pants day today.

Jack woke at 2am screaming, he'd been sick and there was poo everywhere!  Cleaned him and his bedroom up and he came in with me.  Consequently I didn't sleep well at all.  Well must have as woke at 7.30am and decided to just lay there.

Came downstairs and felt so tired.  Went back to bed until 12.30pm.  Moved from bed to sofa.  Not sure why I feel so tired and lacking energy, hoping it's not  the new meds.

Was supposed to be going out with friends tonight but I didn't even have an ounce of energy to get ready, let alone sit in a restaurant all evening.  Feel bad letting them down but I would have been crap company.

I have been offered a mobility scooter...very excited.  Jon and I have talked about getting one but I suppose the longer we put it off the less 'real' things become.  It will be fab to do the school run and get to Mum and Dad's.  Just hope I don't tip out of it!

Just need a new garage door now as it will have to go in there to charge up and our up and over door is broken and too hard for me to open.  Another thing we've put off, so all good as we'll have a new door and I'll be able to get about a bit more.

Looking forward to being a bit more with it tomorrow and not so tired, fingers crossed.

Love Clare xx

Shattered after a very long day at the hospital, mostly sitting around waiting.

Got there at 8.30am, (thank you Hilary for the early morning lift).  Called in at 9pm but told the Herceptin wasn't done yet but the could start with the Zometa.

I have a port fitted under my skin to allow easy (ha ha) access for treatments.  I have only ever had a problem with it once before.  9/10 (I lost count) attempts were made to access it but each time no blood could be drawn back.
They finally gave up after 1.5hrs of prodding and poking (it didn't hurt but is now bruised).

I went down to clinic and saw Dr C with my questions:

• GP suggested increasing steroids to 4mgbreakfast/1mg lunch - he is fine with this.
• Whooshing noise in my head just before I lose balance and use of right leg - he thinks it's 'electrical' happenings in my brain - prescribed anti-convulsion tabs to take.
• Co-ordination not good i.e. misjudging things like putting plates in cupboards and missing the shelf/ filling the water filter and spilling it all over the side - his answer, par for the course and live with.  Thought he may say that.
• Cannot write properly anymore - basically tough, just type instead
• Waking nearly every night approx 3.30am with a cracking head ache - his answer bin the Tramadol and try para/codeine.
• I asked also when I feel ill who do I contact - 1st point of call Macmillan as they are out and about in the community they can always cal in to see me.

So all in all not bad, he still doesn't want to do a scan until January.

Back up to the ward and they had to access a vein in then back of my hand.  Good veins now as not been used for over 3yrs.  Drugs all ready, so I was plugged in and left by now it was 11.45am.

The new meds prescribed were on the system but pharmacy hadn't noticed them and so hadn't made up the script.  I had to wait until 2.30pm for them to be done and sent up to the ward.

Finally, got home at 2.50pm, shattered, (thank you Anita for coming to get me). 

Jack was collected by my friend so that helped out enormously, he is as I type at his 1st school disco!

So watch this space as to whether the new drugs work or not.

I am going to have a very quiet weekend indeed.

Love Clare xx

So fed up.

Went to bed early last night as I was so tired, only to wake at 1.15am, what's all that about and when I say awake I mean wide awake.

Got back to sleep only to wake at 3.30am with a cracking headache and I mean cracking, was nearly crying.  Took some painkillers and tried to go back to sleep.

Just laid there until 6.30am when I took my steroids, hoping they'd kick in before I had to get up.  How wrong was I.  Did breakfast and still had a bad head.

Texted Lesley and asked her if she would take Jack to meet Kay who could then walk him into school for me. 

Went back to bed at 8.45am and stayed there dozing until 12.30pm.  Lovely under normal circumstances but not when you feel sick and have a bad head.

Got up and had some lunch and felt much better not 100% but better.

This afternoon was totally different, I hoovered/made lunches got tea ready etc, like I was a different person. So frustrating that for a good few hours i can feel so crappy and then seem to snap out of it like it never happened.

Roll on Friday when I will (again) speak to Dr C and maybe persuade him to do a scan before Christmas instead of after.

Let's hope tomorrow is a better day.

Love Clare xx

Had a lovely day up in London with Wendy for an Afternoon Tea at St James Hotel.

Went 1st Class to Paddington and taxi to Harrods, had a good look around the Christmas shop, very nice indeed.

Stopped off at Cafe Rouge for drinks, both of us had 2 glasses of wine. 

Then when we went to leave I had a 'funny' turn.

Lost the use of my right side and went down like a sack of spuds in the gutter outside Harrods. A family walked past and stared, so I said I'm not drunk just ill, then they came back for a better look!! A lady stopped and helped Wendy get me up, nearly got run over by a taxi, can laugh now. Was more worried I'd ripped my leggings or scuffed my boots!

It literally last 5mins or so, and after all is ok again.  Taxi to hotel where we had a delicious tea.  Champers to start, dainty sandwiches/warm scones with cream, jam and the best ever lemon curd/fancy cream cakes (small ones but very rich), washed down with blackcurrant tea.

Made our way back by taxi to Paddington and managed to get a few 'supplies' in M&S for the evening ahead.

Have woken this morning (5am) with really bad pains in my knees, feels like someone has knee capped me.

Maybe alcohol doesn't agree with me after all, saying that the last time I had leg pain I hadn't had any alcohol.

Will do some investigation.

So nice quiet day here with the exception of me wincing every 2 seconds!

**update** - knee pain has gone, didn't even notice it go just went, but that's all good.

Love Clare xx

Yay,

As the song goes - 'woke up this morning feeling fine'

Did wake up briefly in the night and took a Tramodol, back to sleep until time to get up.

No head pain or fuzziness which is truly wonderful.

Feel the best health wise today than I have in a long time.

Hilary took me shopping, back here for lunch, then nails done this afternoon.

Sarah E took Jack to Taekwando for which I'm really grateful, Jon went to collect him whilst I did us tea.

Really looking forward to a day in London tomorrow with Wendy, afternoon tea at St James Hotel.

Hoping that tomorrow morning I wake feeling like I did today.

Happy Happy Happy.

Love Clare xx

Went to GP this morning for me 4 weekly Zoladex injection.  Spoke to him about the head pain that starts up about 3.30am.

He suggested that I take 4mg of steroid as I have been when I wake up and then  another 1mg at lunchtime.  See how that goes and maybe drop to 0.5mg at lunch in a couple of weeks.

I did mention losing my balance, going lightheaded and not being ale to move my leg/foot.  Have to speak to Dr C about that next week...he may according to my GP want to scan sooner than January.

Also been to hospital today for Echo and all is ok, there so took results up to ward and they will get them authorised for next Friday.

So really a case of trial and error with the steroids.

Love Clare xx

I want to know what is happening to me.  So frustrating to feel ok one minute and then completely drained the next. Losing my balance at least once a day and the use of my right leg now and again.

Woke up with yet another banging headache.  Right across my forehead and in my right eye.  Luckily Jack was at Grandma and Grandad's last night so I had a lie in until 11am!  Once painkillers and steroids taken the pain eased.

Think I need a serious chat with GP on Tues about meds as they obviously aren't lasting all night and then I'm waking up in pain.

I'm sure between us we'll sort something out.

Had to do a weekly shop at Asda and that was tough as it was busy and hot.  Lunch at Mum and Dad's and a bit of a rest.  Jack asked to stay over again and of course they said yes.  So Jono and I came home and I had a lay down (again).

Nice chilled evening watching 'Strictly'.

Love Clare xx

Ah, that's more like it. No head pain in the night and got straight up this morning. Very strange indeed.

Feel human today - until lunchtime.

Only worrying/scary thing was my friend Helen (D) came to pick me up and we went to Sheeplands Garden Centre for lunch.  After having lunch I had difficulty with my right leg.  It didn't seem to want to work.  Helen had to hold me up or I'd have been on the floor.  I've had trouble 'dragging' my left foot but never my right.  Only lasted a few minutes but was very scary.

Good job I brought a snazzy walking stick to use if I need to.  Just have to get over the fact that I may need one!

Love Clare xx

One step forward two back.

Woke up this morning and knew as soon as I got up it was going to be a struggle.

Texted my friend Lesley who we walk to school with and she came to collect Jack.

Back to bed for me after I'd been sick, much to Jack's delight - wow did you see that - er yes I certainly did!! Wouldn't normally do it in front of him but he was cleaning teeth and I couldn't wait.

Head was thumping all day long and felt nauseous, managed to ring Macmillan nurse and she said straight away to go back to 4mg of steroid every morning.  I also mentioned that there was blood in my sick (I say sick but it was literally bile), she didn't say too much just asked if it was streaky or not!

Dosing all day is just so boring. 

Jono got his and Jack's tea/lunches etc ready and he actually said that although he doesn't want to think about it he knows he can do the things I do.  He's a brilliant Daddy.

Got up at 8.30pm to stretch my legs etc and I will be going back to bed soon.

Let's hope tomorrow is a better day

Love Clare xx