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

Another year gone by...

Highs of 2010:

January - Jack started at Radstock Nursery albeit a week late due to the snow closing the school!

February - We will Rock You in London for Carol's 60th, with the girls - Michelle, Mandy and Michelle.

March - Paul and Janys over from Spain. Mothers Day at Judith and Gerry's.  Jack's Birthday Party at Bracknell Trampoline Centre.

April - Jack's 4th birthday. My 44th!

May - Biddle's birthday in Shepperton. Holiday to Menorca.  Paula and Matthew got married.

June - Lounge finished and new sofa arrived

July - Mandy, Nicky, Olivia and Megan and Mam came to stay. Strawberry tea at Houses of Parliament with Wendy. Jack's 1st Sports Day.  Paul over for a week.

September - Purchased wig!! Mega shop for the day with Wendy and meal/cocktails after

October - Paul and Janys over.  Centre Parcs for Wendy's 50th.  Boro for a week at half term/Halloween party

November - Friday 5th last chemo

December - BCC Carol concert with Wendy.  Jack's Christmas Concert. Strictly Final round here with 'baby club' girls. Jack's 1st Panto and of course Christmas at Judith and Gerry's 

New Years Eve - Just staying at home with Jon and Jack tonight having a curry and a few drinks - I'm sat here in tracky bottoms, sweatshirt bald head and have my laptop on my lap both boys on the sofa watching 'Flushed Away' - it doesn't get much better than that...oh yes I could have well trained locks flowing around my ears...(next year maybe!)

Lows of 2010 (not that many thank goodness)

January - having to have a rib biopsy/bone scan

March - Paula going into hospital and being unable to walk

June - Radiotherapy to ribs and Dr C saying that he though chemo should be done as I have swelling in my neck

July -  5th July started chemo again, 1st (and last) visit to Legoland

November  - Paula died on 3rd and her funeral was on 18th

December - Health wise I'm feeling the worst I have since I was diagnosed with BC in 2006 and wondering what delights I have to come in 2011 treatment wise and even daring to wonder if I'll be here this time next year to do a 'Highs and Lows' of 2011.

**************************************************************

 HAPPY NEW YEAR to all my family and friends

Thank you for all your support over the past year, especially through the months I had chemo...and thank you for continuing to read my blog.

love Clare xx

So it for another year...Christmas is over and it went by in a flash.

Had a lovely time with some of my family.

Friday Jon, Jack and I went to see Sleeping Beauty at the Panto...great fun and lots of laughter.

Jack went to sleep as soon as we got home, but not until he'd got a plate ready with mince pie and oats and milk.  Jon and I finished wrapping the last couple of pressies and sat down with a few drinks and nibbles.

We were woken at 6.15am and Jack was so excited that Father Christmas had eaten his mince pie, Rudolf had eaten the oats and drank his milk and in return left presents!

After opening our presents we went to pick up Mum and Dad and we all headed over to Judith and Gerry's.

Dinner was lovely and so much of it!

Everyone including Jack chilled out for the rest of the day.

Boxing Day and Tim and Vic joined us.  They are great with Jack and kept him amused most of the day.

Jon and Tim were on a mission to get as plastered as they could and boy did they do it in style.

Both looked like the they were dead when they got up and I think they felt it!!

Adrian and Jess came at lunchtime and we all had a chat and then it was time for us to go.  I drove back as Jon was probably still over the limit.

I love being with my family at Christmas, just a shame that Jon's are so far away.  This year Mam and Brian went away and Mandy, Nicky, Olivia and Megan joined them for New Year..just as well as even if we'd have wanted to go up there Jon wouldn't have been given the time off!!

So just winding down now.  Still in pain on the left side of my ribcage but taking painkillers still.

I have a date for my CT Scan and it's 11th Jan so not long to wait.

Love Clare xx

Went along to the Dr's today to have my monthly Zoladex injection and it was booked in with the nurse as usual.

However, due to 'protocol' she isn't allowed to do it anymore so I had to see Dr S.  He's not the Dr I normally (just recently as he does the injections). 

Over the last few months he's got to know me better and we normally have a bit of a chat.  Today he asked how I was and I explained the pain etc and that I was going on to another drug as well as carrying on with Herceptin.

He was astonished at how I remain so positive.  I have people tell me that all the time and ask me how I remain so positive, it's hard to explain how I do, but I just do.

I told him that I consider it such a waste of time being negative over it as that would just make me miserable and what's the point in that?.  Also I have a 4.5yr old that needs a happy environment to grow up in and I have a huge support network of family and friends.

We had a really good chat about how I felt re: the future (or lack of it!) and he was amazed that I'd made funeral plans and have written my Order of Service.  I did explain that they aren't written in stone and can be adjusted/amended at anytime!!

He ended by wishing me a Happy Christmas and said he'd pray for me to get through treatment as best as I could with the least pain as possible. 

I knew he a practicing Christian but it was really nice of him to say that to me - after all he's only a Dr at my surgery who hardly knows me.

Love Clare xx

Saw Dr C and his registrar today and between them they think the best course of action is to start me on Pamidronate for the disease in my rib area.

Also do another CT scan (next, chest abdomen and pelvis) to what's been going on since I finished chemo.

I'll start the Pamidronate when I next go for Herceptin...so my very quick treatment time of 30mins will now be lengthened by about 90mins.

So that's what's happening..

Love Clare xx

To say I'm gutted is an understatement...

Had my last chemo on 5 November still getting over the side effects from that and now I have the pain back in my rib area that I had this time last year.

I was hoping for a good few months without pain or intense treatment  etc

I rang to see if I could get an appointment with the consultant as my next schedules one with him is 18th February.  The earliest date they have is 18th January (due to bank holidays etc).  So it will be pain killers until then.

I really hope this isn't the start of something really horrible, of course I have Paula's death fresh in my mind and that is making me think all sorts of scary thoughts.  

I told Jon what I was thinking and he said he wasn't ready for anything like to happen yet, especially next year...I asked if it was ok for it to be 2012 (tongue in cheek of course) and he just said "I'll never be ready for you to die as I love you too much"

I just hope that when the time does come he will be strong enough to cope with Jack and have a good life with him.

Time is moving so fast and I need it to slow down...Jack starts full time school in January and there was a time when I didn't think I'd see him start school. 

Just read that back and it sounds very negative...I suppose I am allowed the odd negative thought now and again...I won't linger here and will get back to being my happy cheery self.

Love Clare xx

Not a lot going on with me at the moment, just trying to catch up on seeing people I couldn't see when I was feeling so rough.

Although chemo is over I'm still suffering side effects.  Have bad fluid retention in my hands and feet.  It limits what footwear I can put on.  I do try and sleep with them elevated but then when I wake my whole leg is stiff and very painful.

I think my hair is on the move as instead of soft downy hair I can feel stubbly bits, I hope it comes back soon.  mind you it is nice to just get up in the morning and have to do nothing but a bit of eye make up and plonk the wig on.

Nearly ready for Christmas, cards written and most of the presents brought just need a few bit's and bobs , mainly for Jon!

We had snow overnight and it managed a covering but nothing like elsewhere in the country.  I did go out and it was quite scary as after lunch it had started to turn to ice.

Hoping that it goes as quick as it came and we can all get back to normality and be ready for the festivities.

Love Clare xx

It's only been 4 days but I'm back on SW and so far so good...

Not strayed off plan at all and even today had a friend round for lunch and managed to stay on track.

It's 18 days since my last chemo and I'm feeling much better already, right arm and leg are still getting swollen and I've stopped taking the water tablets now (I don't think they made much difference).  Hopefully they'll settle down totally soon and I can have my ankle back.

I seem to be sleeping ok at the moment although it still takes an age to drop off to sleep..up to an hour some nights.

Still feel tired if I do too much but my hands are no longer sore, skin still a bit peely.

So back to healthy eating and trying to get myself a lot more healthier and fit than I have been this year..

Love Clare xx

Paula's Funeral...

I was dreading it and I'd only pulled off the drive and my lip started to quiver.

It was drizzling when I got there and that always things seem worse than they actually are.

As soon as I saw then hearse coming in the distance the tears began.

The doors opened to the chapel and I nipped in at the back in the corner where no one could see me and I couldn't see the coffin.  Intermittent crying from me and quite a lot of sniffing.

The celebrant (not sure what denomination he was) gave a nice 'chat' and Matthew had written about Paula - lovely words.

Alice wasn't there as Matthew didn't think it appropriate for a 4yr old and I tend to agree.

2 hymns, a reading, Lord's Prayer and to finish her grand exit was to Bohemian Rhapsody by Queen.

We all followed the hearse to the burial plot and by then the sun was trying it's hardest to come out.

I found it all rather strange as there was virtually no one (except within the family) of the same age as Paula.  It was also a very sombre and dark funeral...most wore black.

Which brings me to my own thoughts and what I'd like at my funeral...it's all written down and the Order of Service is half done...must finish that off or I may get hymns etc picked that I don't want!!

I will go up to the cemetery in a few weeks and say my own goodbye to Paula as there were so many people milling around I didn't want to go to the graveside today.

Love Clare xx

I'm so excited...and although I am normally quite positive I'm bursting with positivity now..

Chemo finished and now I'm on a mission to sort my weight and health out.

Have made enquiries into Pilates classes and am waiting to hear back, I don't actually want to start until the New Year.  I need time to gather my strength and get rid of the fatigue.

I've made menus and food plans for my re-start of SW from next Saturday and recipes have been sifted through, I hope to have a bit of a weight loss before Christmas/New Year.

It will be a challenge but after this shitty year I need something to focus on and it's going to be a new me.

No more fat and frumpy...

Fingers crossed my hair grows back nice and quick as that is something I will have no control over!

Love Clare xx

Felt so bad today...

After a long night of sleeping/waking/sleeping/waking I thought all was ok to carry on as normal today.

Took Jack to school (by car) and popped to Asda just to get a loaf and some salad bits.  Spent the morning watching something I'd recorded last week.

Set off to pick Jack up at 11.30 am and didn't feel too bad...was only gone 45mins and by the time we got home I was feeling so rough.

Helen J came for lunch and thank goodness she was here as I just felt so ill...in the bathroom not knowing whether to be sick/faint or just sit on the loo!!

Managed to get out of there twice and lay on my bed only to head straight back again feeling all sticky and cold (like you do when you're feeling faint).

It passed within the hour but the colour did drain from me and I felt wretched.

Not long though and I'll be on the up again.

Helen R popped in to tell me news of their 20week scan - all good and so pleased for her and James.

I'm know most people have good friends but I am so lucky to have friends who are willing to help out and step in when times are tough.

Love Clare xx

Paula's funeral is next Thursday at 11.30am....

Dreading it already...

Love Clare xx

OMG - I made it...last chemo today and not once did it have to be put back due to low blood count..in fact Dr C said today looking at my bloods you'd never know I was on chemo - I am made of strong stuff!!

I started the day in the X-Ray dept as when I went to have my blood taken yesterday they were having trouble getting blood from my port, so they wanted an X-Ray done to see if the port was ok i.e the catheter was still attached.  Had it done and all ok...humm...

The nurses weren't happy that yesterday I could feel a stinging sensation so they arranged for me to see the consultant radiologist for him to put dye in my port to check it wasn't damaged in any way.  Only thing was they could only do it at 1.30pm so it meant waiting around.

Back to clinic to see Dr C and he said he was happy that this would be my last chemo and he would suggest a CT scan in about April but if I felt ill in anyway before then to get back to him.  

I'm going to carry on with the 3 weekly Herceptin.

I told him about the Oedema in my feet /leg and hand (right side only!) and he said he'd give me some water tablets...I jokingly asked if it would help weight loss...his reply was...oh you'll be a size Zero before I see you next!! I have been warned to only take them at breakfast any later and I won't sleep for a fortnight - yikes!!

I asked about doing Pilates after the New Year and he is all for gentle exercise but said not to try any cardio vascular stuff...I laughed pointed to my body and said "does it look like I enjoy that sort of thing"

I went back up to the ward and got the port accessed ready for later and my friend Fiona who I started Herceptin with (she's now finished) popped in to see me and gave me a lovely box of Belgian Truffles to celebrate my last chemo...how nice is that?

I went back down to X-Ray for 1.30pm and they put a black dye through the port with no leakage so the consultant was happy for them to continue use of the port.  He did say that they dye bubbled at the end of the catheter and this may have been caused by some sort of fibre stuff - didn't catch what he actually said.  too busy looking at him as he's rather dishy!

Back up to the ward for 2pm and away we went with the chemo, followed by the Herceptin - left the hospital 4.50pm, just  in time to hit the rush hour traffic.

So all in all an eventful last chemo.

I was so happy to walk out of there knowing that I possibly only have 2/3 weeks of side effects and then I can work on getting fully fit/losing weight and not forgetting 'Operation Bob'..

Fingers crossed I have a good stint at just Herceptin before they have to re-think my treatment.

Love Clare xx

Well the decision was taken away from me...

Paula passed away peacefully last night...

RIP Paula

Love Clare xx

Feeling extremely sad this afternoon...

Matthew phoned to tell me that Paula is back in the hospice and has very little time left..

I hope to be able to go and see her tomorrow afternoon but the coward in me doesn't really want to go and see what I may face in the future...it's a hard call but if I feel strong enough I will go.

Love Clare xx

Had a lovely few days away in Middlesbrough.

Lots of drinking, laughing and eating - right up my street.

Jon snapped out of his sulk before we went and we both enjoyed seeing his family.

I felt really tired but had late nights so that didn't really help.

Halloween party was great and Jack loved it as there were lots of other children there.

Friday is my last chemo (providing my white blood count is ok) so by the end of November I should be feeling more like my old self.

I've set a date to re-start Slimming World and it will be Saturday 20th November.  I am determined to lose all this excess weight.

Love Clare xx

Energy seems to be picking up which is great as we're going to Middlesbrough for a few days to see Jon's family.

I sometimes really don't think Jon gets how I feel.  When you're tired/no energy and just plain sick of feeling crap you are going to be snappy - but oh no I just told it must be PMT (which let's face it is one of the worst things you can tell a woman) - well shows how much he knows about the meds I'm on!

So in repayment for me snapping/daring to say something he didn't agree with on Sunday he's been lounging around in bed watching tv for 2 days...instead of having good quality time with Jack...Monday was lovely and they could have gone out.

I really dislike sulkers and he knows that which is why he's doing what he's doing...I just think it's a waste of time and days off.

Moan over - he really is a good hubby but every now and again he seems to forget that no matter how bad our situation is for him it's 100 times worse for me as I'm the one with the shitty disease and going through treatment with the knowledge that there is no cure!

Love Clare xx

5 days in and not doing too bad this cycle...so far.

Hands are sore but no where as near as bad as last cycle.

Right foot oedema seems to have calmed down a bit.

No acid reflux the tablets are working a treat...so nice to eat what I want without thinking I'll be uncomfortable later in the day.

Still feel so lethargic though and have been extremely lazy this week...driving to school there and back and basically lounging around with Jack in the afternoons.

I should be elated after Fridays results but feeling so low...as in health not spirit..hopefully I'll get to enjoy the good news once I start to feel better.

Clare xx

Results day.

...and it is good news:

All visible tumours that have previously been measured have shrinkage and the lump on my neck has shrunk. Dr C even said where I had the radiotherapy to my chest wall in Feb that has healed too.

He did say to keep an eye on my cough as there is inflammation in the upper left lung lobe and if I start to cough phlegm then I will need to contact him or my GP...at the moment it's just a dry cough - an irritating dry cough that seems to want to appear at 3am - grrr!

I did  tell him I get out of breath really easy these days but he wasn't too concerned - prob took one look at how much weight I'd put on and thought, no wonder love...you're huge!!

I showed him the pics of how bad my hands were and he's reduced the dosage slightly for the last two cycles.

I mentioned that the reflux had been really bad last cycle and that it ruined my intake of Champers at the weekend...he said that wouldn't do at all and has prescribed a daily tablet of Omeprazole.

So the plan is to have my last Taxotere on 5th Nov and then carry on with 3 weekly Herceptin.

I do like my consultant and trust what he says and suggests, I really think that helps as I never go home worrying if what treatment he's giving is the correct one.  All the chemo nurses think highly of him and I think that says volumes.

One of my Tuesday Herceptin buddies whose finished her course of treatment was there today to sign consent forms and have tests done for a years trial of a drug to take after Herceptin has finished.  The stats show Herceptin can reduce the risk of recurrence by 50% and with this new drug as well it adds another 10%.  

It's hard to get on trials as you have to fit the criteria - age/stage of treatment/type of breast cancer etc, so far she's the only one eligible at RBH.

So all in all a good day.

Clare xx

What a week.

Had a brilliant time at Centre Parcs, just relaxed and enjoyed the hot tub and a fab villa and extremely good company.

Loads of food and drink and so much laughter, just what the Dr ordered.

I was forced to watch XFactor but it was noticed that I was 'getting into it'...I wasn't honest!

Lots of Champagne was flowing but sadly I couldn't have as much as I wanted as my reflux was bad and so I had to make do with Gaviscon!!

Limo ride was shall we say an experience...after the (woman) driver had crunched the back end on a boulder we went on a high speed ride and all ended up feeling a bit dodgy!!

It didn't put us off the meal at Strada which was lovely and the manager there allowed us to have our own bottle of champagne opened.

Tuesday was Wendy's birthday and I went to help her celebrate at The Elephant in Pangbourne - lovely food and great company.

Wednesday was Jon's birthday and we managed to go out in the evening for an Indian.

So after a nice weekend away and a couple of birthday meals - back to reality.

Not looking forward to tomorrow as it's scan results day..not sure what I'm expecting Dr C to say but I just hope the chemo has shrunk the nasties. If not I will be intrigued to hear what his next step is.

Love Clare xx

Really looking forward to the weekend.

Going to Centre Parcs, Longleat to celebrate Wendy's 50th.

Looking forward to having a weekend away although I'm sure I'll miss Jack and Jon.

Weather looks like it's going to be good so I may have to revise what clothes I'm taking.

So a weekend of laughter, tears, eating, chatting, sitting in the hot tub drinking lots of Champers...

Just hope that I can handle the pace as have been feeling so tired.  Hands are much better and so I'll be able to go in the sauna/steamroom/hot tub.

Love Clare xx

So glad that the time between treatments this cycle is 4 weeks.

Hands are no longer bright red but now the skin is peeling off the back and finger tips.  Better be ok to have my nails done Thursday ready for my weekend away.

Don't feel so tired but ankles are swelling in the evenings.  eyes are still very watery but not as bad as last week.

Not long now and I should get my scan results when I go next, so will be asking what his plans are after chemo.

Love Clare xx