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

Yesterday was horrid, I was so bad in the morning (sick 3 times), Dad came to get Jack off to school and I called the Dr and he changed my prescription and also gave me some anti sickness tablets.

Had a CT brain scan booked for 2pm so I had to get up.  Started getting ready at 1pm and it took a full 30mins to get dressed.

My friend Kay picked me up as I couldn't possibly have driven myself.

Appt was for 2pm and I finally got in at 3pm..it is so horrible in the waiting room..a row of seats, dark walls and no sound whatsoever..just miserable.

Had the scan and felt so ill afterwards...light headed, dizzy and sick.

Got home and suddenly felt ok, managed a whole evening downstairs and went o bed feeling 'ok'.

Today, Jack was at Grandma and Grandad's and Jon at work so I dozed in bed until 1pm as had woken up fuzzy again.

I got up feeling a bit better, so I had a tidy round, put some washing on and made myself some lunch.

Watched some TV recordings that I'd done ages ago,had a long telephone call with Sharon and Jon came in at 6.15pm.  Fancied a curry so Jon collected Jack and got a curry on the way home.

I still feel ok with the occasional dizziness.  

Hopefully I'm on the mend.

Love Clare xx

My head pain was so bad yesterday that I couldn't get out of bed..

Luckily Jon was off work and so he saw to Jack.

I dozed most of the day, at lunchtime I tried to get up but it was so painful felt like my head was going to split open.

I rang the Dr's who called me back about an hour or so later..asked me what I was taking and said that they were the right tablets but I would need some stronger ones that were prescribed.

Jon went to get the prescription and after 20mins of taking them I was back in the land of the living.

Jack knew I was ill but wasn't sure what was wrong so he just sat on the bed stroking my face - so sweet.

I have an appointment with the dentist tomorrow to get a mouth guard fitted in case (which I thunk it is) the pain is tension pain caused by teeth grinding.

CT head scan Friday afternoon so by next Friday I should be a little more wiser as to what's going on.

Love Clare xx

Today I went along to the finish of the Ribbon Walk in aid of Breast Cancer care.

I should have gone years ago when Wendy started doing the walk but I didn't for one reason and another.

Today they walked in a group of 9 called the Rose Ladies (Hilary, Wendy, Angela, Allison, Sharon, Catherine, Mandy, Frances and Sara)

Wendy and Sara are missing from this pic as they'd gone to get their Pimms!!

When they came over the finish line I felt so proud and then to see Hilary and Angela had my name on their backs in fancy letters made me all teary and if I'd have hugged Hilary any longer I think I'd have started sobbing...how silly eh?

Well done girls especially raising nearly £3000...excellent.

Love Clare xx

2 weeks of headaches every day is wearing for the hardest of people...

Had 2 lots of painkillers today.

I think I'm inclined to agree with my consultant that the pain is prob due to stress.  I don't get outwardly stressed but what with everything that's going on (radiotherapy/loft) I guess I must give in and say that yes, perhaps I am a bit stressed.  

In my 30's I use to get bad migraines which was put down to stress and I use to grind my teeth at night...which I think I'm doing again now as my jaw hurts when I wake up in the morning.

Obviously, I hope that it is just stress related and nothing more sinister.  Still haven't got a date for a head scan so just as well they're not as bad as they were.

Love Clare xx

I have now had a bad head for 9 days.

Paracetamol and codeine is helping but can't take for long.

It's not as bad as it was as I'm only taking tablets twice a day now and not waking up with pain.

I am a bit concerned about it and hope the date for CT head scan comes through soon.

Love Clare xx

That's it final radiotherapy session done and dusted this morning.

This is me actually having it done...

Saw my consultant after and he took my headaches seriously, he's putting in a request for a CT scan of my head.

On a happier note I treated myself to a lovely pair of blue suede wedges from Office - just passing saw them and thought I deserve them..

Came home and the scaffolding has all gone, the loft is really getting close to being finished, just tiling and sanitary ware to be done then of course shed loads of decorating!

Love Clare xx

Only one more radio session to go  - thank goodness

My skin is doing better than the last time I had 15 sessions and just looks red not really sore at all.

Since Tuesday I've had the most horrible headaches, just like when I use to get migraines.  I have taken pain relief but it only works for an hour or so then the pain is there again.

Weds evening I put Jack to bed went to get ready for a shower and the next thing I knew it was 10pm...very unlike me to fall asleep that early.

It has eased up a bit this evening but was so bad this morning I actually went to bed despite the builders banging and hammering!

I did mention it to the radiographers and they said it was a side effect of the radiotherapy, making me dehydrated, I must admit I don't drink as much as I should and over the past few days have tried to drink more and it may just have worked.

Will see how I go over the weekend, seeing consultant on Monday so if still bad will  see what they can do.

Love Clare xx

Halfway through radiotherapy and so far not feeling sore but the area does look rather red!

Not been too bad really only had a few delayed sessions so far.

The loft is nearly finished just the last few bits to be done and the bathroom things to be purchased i.e...shower/tiles/flooring.

Off up to Middlesbrough tomorrow for a long weekend, Jack is so excited to be seeing his cousins

Prince William and Kate Middleton get married tomorrow and it was lovely to see all the children at school dressed in red/white and blue as they had their very own Wedding Picnic for lunch.

Love Clare xx

It's gone...I've ditched the wig!

Whilst we were away I couldn't really wear my wig on the rides, for fear of it being blown off into someone else's face!

I wore a baseball cap most of the time but did wear my wig for meals out.

Since being back I haven't worn it and now it's been put away until I need it again (far far in the distance I hope).

So what's my hair like under that mop of a wig, well it's been trimmed around the edges and back but it's still a bit sparse on top, there is hair there but not very thick.

I have no idea why it's taking so long to grow back this time, last time it only took 3mths to have a really decent head of hair.  It's been nearly 5mths since I finished chemo and it's taking it's time.

Yesterday I just thought sod it I can't do this anymore and am now going eau natural.

Managed to do an Asda trip without the wig and thought if I survived that then what the heck.

School next week will be hard I reckon but I have to do it and the sooner the better.  If people feel the need to stare then they should feel thankful it's not happening to them.

Love Clare xx

1st Radiotherapy today.

Long appointment as they had to take pics and get me in the right position.

I had an intense blast on my spine (T6) and then a blast on my clavicle/ neck and armpit.

The mask was horrible as I have a bit of a cold and it was very difficult to breath but they loosened it off and it was more comfortable.

I was told I may feel tired/sick/in more pain than usual and that during the 15 sessions I may find it difficult to swallow - all good for the weight loss though!!

Was in terrible pain this afternoon, just felt really weird all down my back and in my side/stomach.

Took some painkillers and went to bed - sorted me right out!

Love Clare xx

Disneyland Paris 11th - 15th April

Our trip began on the Sunday when we travelled down to Ashford to stay overnight in a Premier Inn. 

Breakfast Monday morning and then off to Ashford International Station.

Eurostar left at 10.28am and arrived Marne-la-Vallée at 1.30pm.

We booked in at reception and our room 3268 was ready for us.  Lovely room, 2 king size beds, dressing gowns, slippers, lovely bathroom, tv, chocs on pillows.

Jack managed to get 'autographs from and have pics taken with - Mickey/Minnie/Pluto/Goofy/Chip & Dale/Eeyore/White Rabbit/ Baloo/Donald Duck and Rabbit from Winnie the Pooh.

Here is what we did whilst there:

Day 1 - Monday

Disneyland Park 

Buzz Lightyear Laser Blaster x 2 - all

Star Tours x 2 - Jon & Jack/ Me & Jack

Autopia - all

Space Mountain - Jon & me

It's a Small World - all

Dumbo ride - all

Labyrinth - all

Tea at Bella Notre (fast foody type place)

Day 2 - Tuesday

Walt Disney Studios

Tower of Terror - all

Parachute Jump - Jon & Jack

Crushers Coaster - all

Animagique - all

Magic Carpets -all

Watched Parade - Stars & Cars

Back to hotel for lunch

Swimming/whirlpool 3-4pm - all

Disneyland Park

Disney Railroad -all

Star Tours - all

Indian Jones - Jon & Me

Thunder Mountain - Jon & Me

Dinner at Billy Bob's eat all you can buffet (77euros without drinks!!)

Day 3 - Wednesday

Disneyland Park

Disney Dancers Parade

Pirates of the Caribbean - all

Peter Pan Flight - all

Tea Cups - Jon & Jack

Snow White Castle - all

Star Tours - all

Lunch

Riverboat ride - all

Buzz Lightyear Laser Blast - all

Space Mountain - Jon

Thunder Mountain - all

Indiana Jones - Jon & Me

Dinner at Steakhouse (88 euros!!!)

 Day 4 - Thursday

Walt Disney Studios

Photo with Minnie - Jack

Rock 'n' Roller Coaster - Jon

Tower of Terror - all

Parachute Jump  - all

Crushers Coaster - all

Armageddon - all

Stitch Live - all

Motor Stunt Spectacular - all

Drinks at Sports Cafe

Dinner at Plaza eat all you can buffet

Day 5 - Friday

Disneyland Park

Looked in shops

Star Tours - all

Space Mountain - Jon x 2

Buzz Lightyear Laser Blast - all

Lunch in Main Street Square

Captain EO - all

Disney Parade

Shopping

Home on Eurostar 7.37pm arrived in Ashford 9pm

All in all a very busy few days but hey...it was worth it.

Love Clare xx

Another milestone reached...

Jack was 5 yesterday and had a lovely day at school and then tea out with myself, Jon, Grandma and Grandad.  It seems like yesterday that he screamed his way into this world and into my heart.

I feel incredibly grateful to the professionals at RBH who have made it possible for me to see Jack have his 5th birthday.

I will be reaching my 5year anniversary soon and although cancer is nothing to celebrate, reaching 5yrs when at the outset diagnosed with secondaries is, and I may just crack open a bottle of champers on the day.

Despite the crap I'm going through just now, life is good for me and my boys...

love Clare xx

I had my planning session today for radiotherapy.  Wow what an experience!

As I have to have radio to my neck and shoulder/armpit area I had to have a mask made to shield my face..

The mask starts out as a flat piece if plastic with holes in it shaped like head shoulders and chest and they get you to lay down in position and then the plastic is heated with warm/hot water and quickly placed over the face/chest and neck.  It was an amazing experience and the radiographers mould the pliable plastic to the face and then blow cold air on it to set it in place it is battened down with clips so that you cannot move!

Starts like this...

End up moulded like this...

I then had to have a CT scan with the mask on...I had my eyes shut when they moulded it so now I have to keep them shut as there is no room for movement at all!

I have appointment times for the first week of treatment and it will start on 18th April.

Love Clare xx

Have had a lovely weekend.

Jack had his 5th birthday party yesterday and everyone really enjoyed themselves.  We hired a hall and bouncy castle and Judith organised the children with party games which they loved.

Back at Mum and Dad's Jack opened all the presents he got and I must say all his friends are so generous...he was so excited to get so many nice things.

I had a lovely handmade card from Jack for Mother's Day and some chocs and wine.

Today I had my Mum and Dad to lunch - what a fab cook I am - it was really dee-lish!!

The loft conversion is coming along nicely, Jon went up the scaffold and had look around upstairs...it's going to be fab once it's all done.

Looking forward to the weeks ahead...birthdays/holiday/visit to Boro/loft being complete..it's what life is all about doing things that make you happy.

My family make me happy.

Love Clare xx

Results of biopsy and CT scan today...

You just know when something isn't right and I did today as my notes were on the reception desk and the registrar kept bypassing them...

Saw Dr C and he said the biopsy showed cancer in the lymph nodes in my neck and one in my armpit, radiologist report for the CT scan showed nothing significant in either my liver or lungs (so still there but minute after the chemo).

There is also an area of 'cancer' on my T6 vertebra (between my shoulder blades). Come to think of it I have had really mild discomfort there - or is that me now just thinking?

The plan of attack is daily radiotherapy for 3weeks to the neck/armpit area  and one shot of radio to the spine area.

Planning for this to be before we go away and then the actual treatment when I get back.

Also need to have a mammogram on my one remaining breast as there is 'thickening' by the scar but that maybe just what it is and nothing more serious.

I did say to Dr C so is this it are things are hotting up and he said well yes but nothing that isn't treatable at the moment.

He said he wants to keep me on all the current drugs and did think about another chemo (capecitabine) but would rather leave that until really necessary.

So not good news but not disastrous and the bit of positive is no new or larger liver/lung tumours.

Roll on Disney to focus on nicer things...

Love Clare xx

What a lovely week.

Mum and Dad reached their 60th wedding anniversary on March 17th...what a great achievement.

Paul and Janys are over from Spain and I've seen quite a lot of them this time which is lovely.  

Judith and Gerry came over Saturday morning and then Gerry went off to see his Mum and Dad whilst Judith and I got my house in shape for the 'Tea Party'.

I'm so lucky to have a sister like Judith, nothing is too much trouble for her, I thought I was organised and in control...she is worse...but that's good!

We always manage to cry with laughter at some point and Saturday evening was no exception...tears rolling down our cheeks at something so silly that only sisters could both find funny...very nearly wet myself.

Lunch out at the Moat House was really lovely and we all enjoyed ourselves.  

Back here for tea and it was a proper cake fest - Cream Tea, Cream Cakes, Cup cakes and a few sarnies thrown in for good measure...

I know Mum and Dad enjoyed it as they love having their family around them.

Jack was on his best behaviour all weekend and I was so proud of him at the restaurant as he behaved impeccably.

Busy week coming up...Baby visiting tomorrow, Scan Tues, loft starting Weds...

Love Clare xx

Had the Ultrasound and needle biopsy done today on the lump(s) in my neck.

The Dr doing it said they were larger than normal so I'm assuming they are lymph nodes that have come up/been infected or are cancerous.

I asked if they looked suspect and was met with silence so I said well nothing you can tell me is worse than being told you have incurable cancer....and then he did say that they don't look great!!

Depending on what they got out today will depend on what happens next if no definite results then they will do again with a bigger needle (ouch!!)

I was a tiny bit fuming when I left as I asked if they had shown up on the last scan and he said they didn't scan my neck in January...well I have the letter that says it should have been a neck/chest/abdo and pelvis scan, so if they had been there in January they would have been picked up.  He said to make sure next week they do right up to my ears as they need pictures of the lumps on a scan.

Does no one do anything they are supposed to these days?

Roll next Friday (25th) when I get the results

Love Clare xx

something working in my favour for a change...

2 letters from hospital today both with appointments one for an Ultrasound and needle biopsy (ouch!) on Weds 16th  and one for another CT scan the following week on Tues 22nd.

I said working in my favour as I have 3 things in my diary for ext week and was sure that it would be a double booking...but no the appt for Ultrasound is about 30mins after my nails will be finished just time to get to hospital park in time for the appt.

So double yay...no chasing appts this time and times that suit me and school run for a change...

As I've said before results should be with consultant on 25th when I go to see him.

Love Clare xx

Saw Dr Beyene today as Dr C wasn't there.

She had a feel of my neck and agreed that there was indeed a lump there possibly 2.

She is organising an ultrasound and needle biopsy to be done with 2 weeks and then I go to get the results on 25th March.

I hate all this faffing about to-ing and fro-ing to the hospital having to sort out Jack if the appointments clash with the school run...

So let's hope it's nothing and I can get off the roller coaster for a bit and enjoy things that are planned for the spring and summer.

Love Clare xx

Well, the lump is still there along with another smaller one and I have an appointment this Thursday at 2pm.

Not a proper clinic day, they didn't have any spare appointments for tomorrow.  The breast care nurse spoke to Dr C's registrar and she said to just pop in ad hoc and they will bleep her or cons when I get there.

So watch this space...

Love Clare xx

Why does this happen...?

Last saw Cons on Friday and we agreed all was well so I was signed off for another 3mths next appt 13th May...

Since then I have become aware of a lump in my neck...not like the swelling last year this is hard and just a bit bigger than a pea size.

I rang the Breast Care nurse this morning and she's going to fit me in at clinic on Tues morning but if it goes in the meantime then all well and good.

It's just a worry and I had hoped to have a good year - I still might if luck is on my side.

Love Clare xx

First parents evening today.

Was a bit apprehensive as to what Jack's teacher would say after a shaky second week!

Needn't have worried, he's doing really well.  In numeracy he is at the level they expect if not above.  Writing needs to be worked on but then he is only 4 (nearly 5).

He enjoys doing construction play with blocks of foam and cushions and also playing in the outside garden.

She said since the 'telling off' his behaviour is 1st class.  A very confident and friendly child that they all like working with and he's not afraid to speak up or join in.

The headmistress was in there too and she had a chat with me about how I'm doing and said if I ever need any help or need to chat about anything they are always there.

So proud of my little boy.

love Clare xx

After 2 weeks on strong antib's and now 5 days without my leg actually seems to be getting better...

Still on diuretics but not every day as the need to pee is not what I need when I'm out and about without easy access to a toilet!!

Hair has started to grow a bit faster and I could possibly have enough by April to not wear my wig when we're at Disney.

We've decided (finally I hear some of you say) to have the loft extension done, we were serious about it last year but there was no way I could have coped whilst having chemo.

We've had a quote from a builder who has done 4 houses like ours in our road and although a bit dearer than another quote we had I think we both feel that he has better knowledge of the house.

As I am so shy (hee hee) I took it upon myself to knock on one of the houses that has had it done and to my surprise it turned out to be one of Jack's teaching assistants.  I was only going to ask a few questions but she took me up to have a look and now I can't wait to get our done.

Not sure my Dad quite gets it..he asked how will get furniture up through the hole - oh dear..best he waits until it's finished as I've tried explaining but he still doesn't get where the stairs will go!!

Jon is away at Michelle's for the weekend and as soon as he's back we'll have one more chat about it and then phone to confirm that we want him to start the ball rolling and we're looking at starting mid April...

Love Clare xx

Went along to hospital today for my usual treatment (Herceptin and Pamidronate)...

Shocked that 3 of the nurses are leaving...

Tracey is going to a Royal United in Bath, such a shame as she's excellent at canulating and accessing ports.

Kristy is going to stay at RBH but is going to be a Breast Care Specialist

Sheila the vascular access nurse is off to work in Geneva 

Of course I'll miss my chats with them but more importantly they are finding it hard to replace them, apparently there is a national shortage of chemo nurses.

I'm seriously thinking of wrapping Dr C in cotton wool in case he decides to leave...would be devastated if I lost him as my consultant.

love Clare xx

Update on Jack's behaviour at school...

He's been good so far this week and as it turns out there have been quite a few Mum's who've 'had the chat' since the start of the year..

So either they're all really bad or they're all just finding where they fit in and how much they can push the boundaries.

Feel much happier now I know it's not just Jack!!

love Clare xx

Gutted..

Got called to one side at school today and one of Jack's teachers said his behaviour this week has been unacceptable...

Hitting, elbowing, answering back...even throwing himself on the floor when he doesn't get his own way.  I am so upset as I try hard to be firm with him but sometimes I just give in and let him have his own way.

I ordered quite a bit of Bakugan stuff for him yesterday (using his Xmas money) and now I know I can't give it to him until his behaviour improves.  He's ruined what should have been a nice surprise.

What frustrates me most is when either Jon or I ask why he does 'naughty' things he always says 'I don't know' or' my brain made me do it'.

Tough love this weekend...won't be going anywhere 'nice' as that would be rewarding him. May take him for a walk to feed ducks but NOT go to the park after.

No DS or Wii for him this weekend.

Love Clare xx

So relieved.

Went to see Dr C today and get the results of the scan done last week.

He said the report showed that the rib area although still inflamed was looking better than it did in October and all other areas of concern have remained stable.

He explained that the pain I was having could have been due to stopping the steroids, they would have been acting as an good anti-inflammatory and when I stopped them it may have just been aggrivated.

I'm so happy that the horrible chemo that I'm still suffering effects from did it's stuff for me.

Dr C had a look at my leg and wasn't very happy with it and thinks it's possibly cellulitis and has put me on 2 weeks of antibiotics...if t doesn't clear up he'll have another think..

So no excuse now get the leg better and get on with my life...I have a full year of stuff planned so need to be in tip top condition for it.

Love Clare xx

Jack's 1st day at full time 'Big' school today.

He looked so smart in his uniform (and also smart at the end of the day).

It's a milestone that I had thought I wouldn't get to see but thankfully I have and I did have special thoughts for Alice, Paula's daughter who sadly didn't have her Mummy to see her to school on her 1st day.

There were no tears from me as I was too busy putting everything in their place...PE kit/book bag/water bottle/lunch bag...so much to remember!!

Not quite sure what he did all day as he just said I did everything!

It was so sweet when they came out all eagerly looking for their Mummy or Daddy (or both), his friend Megan said to him "hey Jack, we get to go back tomorrow as well" - how sweet is that?!

So I'm hoping the 1st day enthusiasm stays and he likes school - unlike his Uncle Paul who hated it!!

Love Clare xx

Happy New Year.

My first 'wafflings' of 2011.

Decs down and packed away, very neatly all ready for next Christmas.

So now it's all over I can concentrate on things I have planned for this year.

First thing is to get back to healthy eating and lose some weight and feel better in myself.

I already have a few things planned to look forward to:

Mum and Dad's 60th Wedding Anniversary in March, Jack's birthday and party, Disneyland Paris.

Being brave and having Jack's party in a hall and doing it ourselves!!...must be mad.

Busy week this week, friends tomorrow for play, Jack starts school Weds, birthday visit to a friends Thurs, hospital Friday and then it'll be week 1 of 2011 over!! No wonder it all goes so fast!

Health wise - right foot and leg still giving me pain but getting better - I think?  Still on the diuretics but they are a pain as about an hour after taking them I need to go to the loo numerous times...ok if I'm indoors but when out and about it's a nuisance.

Rib pain is still there but build up of painkillers seems to be easing it a little.

Love Clare xx