Feeling it today...

So tired all the time, doesn't help that I'm not sleeping well.  Have sleeping tablets but if I take one I go straight to sleep and wake at 2am...wide awake! If I take 2 I am so groggy in the morning.

Just can't seem to slow down. Laid on the sofa this afternoon and got bored so did some ironing instead.

Walked to Taekwando with Jack and the lovely Letitia gave us a lift home...I was going to bus back but I actually think I may have collapsed!

Hoping the tiredness will wear off and I'll get back to my 'normal' self soon.  Radiotherapy is renouned for making you tired but I must say never felt this bad before...then again never has it to my head before.

On the up side Paul and Janys have booked flights to come over for Christmas...yippee..first one in 8yrs or so.

House is nearly there, Jon is off for 6 days starting Thurs and will finish Jack's room, and the painting of the woodwork, conservatory furniture chosen just need to order it (bit of a mess out there as boxes for new furniture everywhere, so will order as soon as we can) and maybe we can finally enjoy the house as a finished thing!

Blinds in Jack's room and his old room being fitted next week hopefully.

So although I'm feeling exhausted a lot is being done..just need to learn to slow down..not really in my vocabulary..

Huge thanks to those who have given me lifts so far ...really appreciate it.

Love Clare xx

Today was 'Happy Saturday' with Wendy

Left home at 11am to get the train to Paddington.

Taxi to The Ivy...had drink in a pub nearby (Bacardi/coke) then made our way to our lunch date..

Both of us had a very nice glass of champagne, warm bread and ordered our main meal..

I had Roast Somerset Lamb with summer vegetable hash & rosemary, buttered Cornish new potatoes and cauliflower gratin washed down with a Rioja Rosado 'Tremendus' 2009 and for dessert chocolate pudding with peppermint ice cream.

Waiters very attentive and the whole atmosphere just perfect.

After we made our way to Covent Garden where I managed to buy some Mac eyeliner -oops!, a Sulley (monsters inc) and Toy Story pea pod for Jack's new room...

Pimms on the Cattershall Castle riverboat,  walked to Oxford Street to find an M&S so I could buy some flip flops...managed to get 2 pairs as I really couldn't decide what colour...blue or purple!

Back home at 7.30pm and nibbles/dips/choc/popcorn/wine and watched DVD Charlie St Cloud (not as good as the book)

So a fab day had with my dear friend Wendy...

We managed between us (Jon, Wendy & I) at home to down, one bottle Pinot, one bottle Zinfandel, one bottle Pinot Canti and 3 bottles Cider...hasten to add Jon was worse for wear....Wendy just tipsy (hardened drinker that one) and me well...considering I haven't been able to drink for a while I surprisingly sober...what's that all about?

Love Clare xx

Met with the lady who will be celebrant at my funeral.  Lovely lady called Iris Rhodes, she looked over my stuff and has agreed to it all, even the bible reading (some refuse to do a reading).

She wrote loads of stuff down and asked me if I'd write something for her to read out, so this afternoon was spent typing away and I think I've done it!..will run it past Jon and hopefully it'll be OK not too long but covers most of my life..briefly..

Now if there's anyone out there who is electronically minded who will take charge of my 'special bit' on the day...I'll give details if there's anyone willing to do it, all sorted with a visuals company they just need a person who will be in charge of it on the day. Obviously the Audio CD etc will be done ready just need to press play..lol

And...anyone feel they can do a reading?  Iris will do it if no one else will but she thinks it would be nice if family or friend does it...it's a short Bible reading 6 verses...easy peasy!! - sorted..thankyou Paul xx

So that's it all sorted and now I can leave all this 'fun' stuff until it's needed - hoping it's ages away and I will forget what I've chosen!!

Love Clare xx

Yay...

Thought I'd lost my bright pink hoodie...only hanging on a peg at the local community centre left it there a week ago...so there are honest people out there.

Then I get a call from HSBC fraud line to check that some 'large' payments have been made by me..indeed they have and I am grateful for them for looking out for me.

Health wise doing OK...tired but that's to be expected, reduced steroids right down but can increase if I have.  I've been waking up (since Friday) with a really stuffed up nose and it's really hurting my sinuses...driving me mad actually.  Seems to be easing off everyday but it's just something I don't need, feels like my teeth are falling out!!

Head seems to be OK..bit fuzzy in the morning but then tabs sort it out.

Still managing to do all that I did do before just takes me longer..never really suffered tiredness like this but I'm sure it'll pass.

Managed to walk from school (20mins) to Taekwando and back (25mins)...should be a size '0' by end of week all this walking...oh hang on maybe not as I am so hungry always and I'm eating rubbish too, need to get a grip...

Love Clare xx

What a fab weekend I've had...busy I grant you and I am now shattered.

Saturday and Lucinda popped in for lunch and a lengthy chat, finally arranged an evening for her and Ollie to stay so  we can have good old reminisce..(known each other since 5yrs old).

Lisa and Alex came over at 5.30pm and we had a catch up and then headed out for an Indian...which I might say was deelish..

Back here for a couple glasses of the old vino and that truly set me up for a good sleep.

Today was Father's Day and I ad my Mum, Dad, Judith, Gerry and of course my boys for Sunday Roast.  Judith did the sweets things I did the savoury...Beef was fab melted in the mouth - it was the cook not the actual joint!!

Judith made a fabby french apple tart and of course we had everything with it...cream, custard ice cream..

Tim and Vic came about 4pm and we had tea with loads of lovely sandwiches and cakes.

 Jack despite being up since 6am lasted all day without incident.

Feeling shattered now though and I certainly couldn't have done today without the help of my lovely sister.

So am chilling this evening and falling into bed later, hopefully sleep most of the night for a change.

Love Clare xx

Wow..really feeling tired this end of the week.

Mind you whole head radiation is prob quite a lot to take on...just sat here..just chilling and surfing...

Tried to have a nap no good, watched tv, load of rubbish.

Just need to rest and that's not one of the things I'm use to doing.  Although not driving sure does mean I'm not as busy buzzing around and that can only be a good thing.

Up the school later for the circus and I'm really looking forward to it despite the wet.

Busy(ish) weekend...Lucinda popping in to see me Saturday afternoon, Lisa and Alex coming over to me - going out for an Indian...yummy.

Sunday Father's Day and I'm doing dinner for Mum, Dad, Judith, Gerry and my boys...Tim and Vic coming for tea..of course Judith is on hand to help for which I'm very grateful..

Not such a busy week next week ...Mon free, Tues just round Mum's, Weds apt at 12.30 for an hour, Thurs Gill round for a chat and coffee..Friday hosp...so all good.

Love Clare xx

Last radiotherapy to my head this morning.

Saw Dr Charlton afterwards and he went through plans (vague ones)...reduce steroids to 2 x 2 from today, 1x1 from Sunday, if I get any pain just up them by one at a time to no more than 4x 4.

He wants to full scan me in August (to see what else is going on) as then he can do a head scan as well...no point in doing one now as radio takes approx 4/6 weeks to take proper effect.

I spoke about timescales and he said at the moment he's treating a woman in same situ, that is a year on from brain diagnosis and there isn't any reason why if kept under control I can't do the same.

He wants to see me every time I have my regular treatment so that's every 3 weeks which is good.

Asked about Spain again and he said of course go, as long as we can afford to pay for treatment should I need it but then said if you were ill I wouldn't expect you to be going and if you feel ill out there just make sure I've got a bucket full of steroids as that's all they would give me and send me home.

He actually spoke about my attitude and that he really can't believe how I am so 'positive' seeing as I use the Internet for info etc...scary stuff!!

He likes my attitude and he said it can only help in the long run..

I just explained that I have a 5yr old who needs his Mum right now to be focused on our family and not mope around.  I told him I'd done all my arrangements etc and that I intend to now just carry on as I have been for the last 5yrs.  Until a time when I can't there is no reason on earth to be any different.

He said he wished it was different for me and that he will keep up to date with any breakthrough treatments for me. 

Seeing him today in radio is so much different to seeing him in clinic where he's pressured for time..he had all the time in the world to sit and chat and go through things.

He's said my friend can do Reiki on me, so I'm booked in for a session end of June.
Oh and as I was leaving he did apologise that my hair will go and touched his head (he's rather bald!!)...cheeky git!!

Love Clare xx

I'm all weekended out.  Tidying, cleaning, de-clutering and generally buzzing around on steroid stealth.

Thought I'd do a bit of de-clutering this morning.  Turned into a full scale clear out of basically junk that I have accumulated in my wardrobe.  It's not huge just a built in one that holds more than Mary Poppins bag!

Make up that's years old, shoes that are hideous, toiletries that don't smell...and probably never have. No amount of jewellery bags, you know the ones like pouches. Flip flops that have seen better days. My top draw by the bedside had some glycerine throat sweets that were so hard I fear my teeth would be out if I sucked on one!

I now have 2 small drawers of very nice toiletries, shoes in boxes, only decent flip flops. All tops etc in colour order hanging in the right direction.

One huge bag of junk to go out Weds and now when I need one for the 'old' clothes I'm ditching not a charity bag in sight.

Felt so good to streamline some things.

Lunch followed a visit from Jan and Joel and it was great to see them and chat albeit only for an hour.  Must say Jan looked just so fab and so happy.

Jack off to Mia's party and Jon and I went to pick up Mum and Dad from Heathrow.  Jack stayed at Sinead's after the party, so we all went for something to eat and have a chat about their visit to Paul and Janys.

Picked Jack up at 7pm, got home straight upstairs showered him off (face paint and tattoo) in bed story, songs and asleep by 7.30pm.

Quiet night for us to finish off a busy weekend.

Love Clare xx

What a lovely day I've had.

Just mooching at our own pace...well Jack and I ...Jon has been flat out in the loft doing the flooring in Jack's new room..and he finished it and it looks fab - so proud that he just gets on with things and will have a go at anything.

Shopping early, whilst Jon took the car for it's MOT (passed) then over to Anita's to scan some pics.

I did quite a bit downstairs..washing, ironing, cleaning, tidying and generally sorting things out .  Jack re-found lost toys in his room and had a great time playing with some different things.

Rang Mum and Dad to reassure them I'll be there at the airport tomorrow with Jon to pick them up...their week away has gone so quickly.

Day finished off nicely by Jack eating what we had for tea (new to him) and eating it all and then a long bath and in bed asleep by 7.30pm...

The evening is ours...that then will mean 2 episodes of Homes Under The Hammer that I recorded during the week...we know how to live it up!!

Love Clare xx

Calm is restored in my head.

Not just because I had my 1st radiotherapy session but I have finally got myself a 'Tailor Made' funeral plan and I know exactly what I've got etc...nothing missed off the list - oh except the banjo playing man in front of the horse drawn hearse...seeing will be believing!!

Just need to get in contact with the officiant and meet with her to discus finer points.

Jon sat and listened to my choices and is pleased with what I want but dared to ask how much the coffin was, my answer..cheaper than a couple of months worth of clothes purchases!!

So hard to judge how many will attend as it's not an invite 'do' just had to guess and hope I'm not way off the mark either way!!

The one thing I really do want is for people afterwards to go to the get together and make it a happy day for my family and for themselves, to sign the book of condolence for Jon and Jack to keep.

So 'Mrs I'm in control' has decided and I just hope all approve...shame I won't find out eh?

Love Clare xx

Me again at the crack of dawn...

Just having a play around with what I think it going to be something special.  Nothing like insomnia to get the creative juices flowing!

Busy day today...all practical things and then I think I'm done with all the organising.

Visit to crematorium at 10am for a look around, I know I want to go there but just for piece of mind I'd like to see where I'm going to end up!  Funeral planning 11am - got it all sorted on paper and chosen everything, order of service, newspaper notice done. Then carvery (I do have to eat), then radiotherapy at 2pm.  My lovely neighbour Anita is driving me around today for which I am truly grateful.

The only thing I need to sort out after to day is who is going to hold the service, I went to a funeral last year and a lovely lady was the celebrant, calm soothing and a lovely reading voice, do you think I can remember her name?...not a hope! I want to meet with her and discuss things as there's nothing worse that someone saying their bit about you without having known you at all. I do a  know that a lady who works at the library knows her name just need to get in there and ask her.

So possibly an emotional day (especially the paying for part!!) but at the end I will have what I want and hopefully Jon, Jack and family and friends will be happy with what I've chosen.

5yrs a go I started a scratchy load of documents and it seems unreal that they are now complete and ready to use..tweaked beyond recognition mind you but now it's final...well maybe I could do a bit more tweaking if I have time to mull it over..which I won't as after this I'm going to concentrate on enjoying the life I have left.

Love Clare xx

Radiotherapy planning this morning and I have another smaller mask to wear this time.

On time and out by 9.30am,  so Angela and I went into town to get a few bits.

As I'm having whole head radio and will lose hair I have decided to go along the lines of hats..I still have my wig and will wear if it if I have to but it's so hot when it's warm.

Managed to get 4 Baker Boy style hats and one pretty sun hat and I think they'll do..

3 of the hats were £10 each and the very kind girl in the shop said if we went back in an hour or so they would be cheaper...got all 3 for £12 in the end - I do like a bargain!!

Radiothrapy starts tomorrow, not next week as first suggested and also saw my consultant briefly who said not to lower the steroid dose until we see how I'm doing.

Have just filled in my terminal illness claim for and as claim forms go it was relatively painless...just hope they are quick at sorting it out...

Jack has his first Taekwando Award Ceremony tonight and I'm so looking forward to it...we missed the last one as we away in Disney - proud Mummy moment and the camera will be out!!

Just sorting through some more paperwork...so much to sort and that's with me being organised!!

Love Clare xx

Here I am at 2.30pm wide awake thanks to my lovely Dexamethasone.

Still has it's good points, dishwasher emptied, breakfast things sorted so, not so 'rushed' in the morning!

I'm a bit of an idiot really as sat here on my own I did a bit of the dreaded 'googling'...yes we all do it but for many different reasons..

I just happened to look up 'brain metastases' on good old Wiki - I've done it before but that was ages ago when 'it wasn't going to get me there'.

Not nice reading at all and if I'm honest I'm now even more terrified and scared for those around me.

I have so much to sort out before I'm no longer able, either due to feeling ill and not being bothered or just plain old incapaciated.

I have made a good go of things I started way back 5yrs ago...Think I've just about finished an 18 page 'book' for Jack (all about me, pics, words, explanations of my life), funeral plan, people to notify, order of service (although that gets tweaked daily depending on how I feel!!), newspaper obituary (of course the dates have been left out!!), where all my important papers are kept etc etc..

Going to the crematorium this week to have a look around, as I quite fancy East Hampstead Nine Mile Ride.  The crematorium at Caversham is so creepy and dull it would make anyone miserable let alone going to a funeral!  Also paying a visit to the undertakers, choosing what I want and paying for it.

I have many capable family and friends who could organise such things but why should they?  I know what's to come and if it makes it easier for just one person that I've done it all before hand then it will have been worth any tears along the way from me - I don't do tears easily as I've said before I find it a waste of energy buy hey I'm a woman and we all like a good old blubber if we're honest.

Just have to work on some foodie pointers for Jon, he is a great cook with instructions but no one should be forced to eat 8min steamed carrots!!

So maybe I should this week go through my documents one by one finish them off, print and enjoy what time I have left knowing that all should be in order on day of departure!

Sorry for rambling but it just happened...just like the warm milk and 2 biccies I've scoffed!!

Love Clare xx

Today's delight 'Normal' treatment today and appointment with Dr C.

Saw Dr C and discussed recent news...he admitted that perhaps I should have either been in hospital last week or at the very least treated with steroids as an out patient, but not having the scan until Friday made it awkward as they didn't know what was what until Tues.

The plan is this...radiotherapy planning on Weds at 8.30am then start 5 days of radio the following Monday.  I will lose hair again (off to a non starter with this barnet I have, may as well give up and bring the wig out for special occasions and hats/scarves for all others)

Still on the steroid dose of 4 breakfast 4 lunch until Monday when I can reduce to 3 and 3 then when I start radio reduce to 2 and 2...if I get pain just up them again.

I couldn't actually bring myself to say why the hell in all the 5yrs haven't you done a head scan especially with my neck nodes being cancerous...he's not God he's my Dr and is only human and he did say he was totally shocked at what the scan  showed as he wasn't expecting it so soon after chemo and radiotherapy.

Even if I had a scan 4 weeks ago the buggers would still be there just wouldn't have had to in pain for all that time.

Up to West Ward for treatment and the usually Friday gang were there, nurses run off their feet but still having time to speak to us all and make us laugh.  cannot wait to see pics of Ward Sister's wedding reception - a scream apparently.

Got out at 3pm and Hilary kindly came to pick me up ad dropped me Mum and Dad just to prove I am still alive can walk and talk just like last week!!

Got home at 5pm to some flowers sent by friends - thank you lovely ladies they are gorgeous

Love Clare xx

Right then where do I start..

Yesterday (31st May - 5yrs since original diagnosis) I was so bad again that I called the Dr for a phone consultation.

I got a call from Dr Shaw who said he wanted to come and see me.

Spent most of the morning between dozing and  in the bathroom throwing up.

Dr S came round at 1pm and did lots of tests eg. eyes, ears, strength of arms legs..etc etc

He wasn't happy and immediately got on the phone to Royal Berks to get a bed organised in Clinical Decisions Unit.  An ambulance was called and as I wasn't an emergency it would be approx 1-2hrs.  Just enough time to get a bag packed!

My neighbour Anita came over and helped me get a few bits together and at 3.30pm the ambulance arrived.  3 very nice paramedics and a bumpy journey to the hospital..so much paperwork it's madness.

Taken straight to CDU and luckily for me got a side room on my own (due to sickness and diarrhea)

All usual things done bloods, vital signs and went through symptoms for a 3rd time.

Didn't have to wait long before a lovely lady consultant came to see me...again (4th time) went through symptoms (was beginning to think it was some kind of test!)...she did all the tests and more that Dr Shaw did but not before telling me the results of the CT brain scan.

She said, no beating about the bush, but in a nice calm way, that I had 4 areas of metastasis in my brain .

At that I promptly threw up! Then cried.

Straight away they gave me steroids and painkillers and within 20mins the head pain had gone.  She explained that the tumours swell and push against the skull and the skull being hard doesn't give way to the pressure.

I dozed most of the evening and was so glad to be in a side ward...outside in the bay old lady shouting to herself, one died!! and all the others moaning between them at the noise..I just shut my door and managed to sleep...until the night consultant woke me at 2am to go through it all again and have obs done!

This morning another 'team' came round and his time they told me my symptoms and I just said 'yes' to it all.

Finally someone from the Oncology team came at 2pm and went through the plan..5 doses over 5 days of radiotherapy to the whole of my head which means I could lose and probably will lose hair and it won't grow back..what a total piss take..excuse my language! Steroids to stop the swelling so bald and fat once again..

I got out at 4.30pm when Helen (Roberts) came to pick me up, she'd had Jack all day and rather than wait until 6.30pm for Jon to pick me up she came for me.  Only prob was I had no clothes other than pyjamas and dressing gown, did I care did I **** waited outside the hospital, got a few funny looks but I couldn't have cared less (they prob thought I'd escaped from Prospect Park hosp!!)

Now for the hard part..Breast Care Nurses said there would be no problem in claiming on my 12mth terminal illness policy..but I may defy the average yet again and get longer..I hope so.  If I miss the Olympics in our country I'll be so annoyed!

Driving license has to go to DVLA no more driving for me and that will be a tough one to get use to...one car for sale!!

So still positive frame of mind as what's the point in being anything else.

I have so much support from family and friends and I just hope that I can learn to ask for help and take the help offered, it's hard when I can't offer anything back.

So spare a thought for us and the tough times we face as a family.

Oh just one more thing spent £95 on a mouth guard that I probably don't now need, teeth grinding causing bad heads seems so much more attractive than the diagnosis I got.

Enough from me on this I'm all brained out.

Love Clare xx