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
Sunday, 27 November 2011
Wednesday, 23 November 2011
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
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
Tuesday, 22 November 2011
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
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
Sunday, 20 November 2011
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.
Love Clare xx
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
Love Clare xx
Saturday, 19 November 2011
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
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
Friday, 18 November 2011
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:
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
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.
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
Tuesday, 15 November 2011
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
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
Sunday, 13 November 2011
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
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
Friday, 11 November 2011
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
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
Tuesday, 8 November 2011
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
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
Saturday, 5 November 2011
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
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
Wednesday, 2 November 2011
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
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
Tuesday, 1 November 2011
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
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
Monday, 31 October 2011
Much better start to the day today.
Slept through from 10.50pm to 5.30am which is a first for weeks if not months.
Got loads done today. Got Jack's advent calendar ready as it takes a while to attach the match boxes so didn't want to leave it last minute.
After that I sorted out some cross stitch stuff as I need to a card for Jack for Christmas and a couple of other cards.
Then I finally finished my 'book' that I've done for Jack. It is all things about me that he may want o know, from my birth to his. All sorts of things in it, school/work/friends/family/fav things/ his birth story etc.
Just need to get it printed like and annual. So pleased with it.
Also amended some 'funeral' stuff and 'wishes' stuff and have done a list of things that I'd people to have. Found a fab website that uses ashes to make things. Showed Jon and he's happy for it to be done.
http://www.bathaquaglass.com/memorial-glass.html
I think it's a nice idea and then rest can still be scattered if Jon wishes.
So productive day without to much exertion.
Love Clare xx
Slept through from 10.50pm to 5.30am which is a first for weeks if not months.
Got loads done today. Got Jack's advent calendar ready as it takes a while to attach the match boxes so didn't want to leave it last minute.
double click and it will be bigger
After that I sorted out some cross stitch stuff as I need to a card for Jack for Christmas and a couple of other cards.
Then I finally finished my 'book' that I've done for Jack. It is all things about me that he may want o know, from my birth to his. All sorts of things in it, school/work/friends/family/fav things/ his birth story etc.
Just need to get it printed like and annual. So pleased with it.
Also amended some 'funeral' stuff and 'wishes' stuff and have done a list of things that I'd people to have. Found a fab website that uses ashes to make things. Showed Jon and he's happy for it to be done.
http://www.bathaquaglass.com/memorial-glass.html
I think it's a nice idea and then rest can still be scattered if Jon wishes.
So productive day without to much exertion.
Love Clare xx
Sunday, 30 October 2011
I feel crap.
So sick of waking early morning and my head pounding, makes me feel sick and I hate that feeling.
I know that there is lot going on inside my head (as in tumours not thoughts) but I just wish I could wake and feel 'normal', instead of wobbly/feint/sick. It's very scary.
Had a lovely time at Sue Ryder Fireworks and Halloween last night. Next years date was printed on the programme, do I think I'll be here to go? No, not if I'm honest and baring a miracle. I said to Wendy yesterday that I hope to make my 46th birthday but even that's now making me think I'm being too optimistic.
Oh this is turning into a 'poor me' post. When I feel ill that's how it makes me feel. I hate being like this.
I will snap out of it soon.
**update**
I did indeed snap out of it, by 9am I was feeling 99% better and had a good day in the end. Made cakes, did washing, ironing, roast dinner and bits and bobs around the house
Nothing keeps me down for long.
Love Clare xx
So sick of waking early morning and my head pounding, makes me feel sick and I hate that feeling.
I know that there is lot going on inside my head (as in tumours not thoughts) but I just wish I could wake and feel 'normal', instead of wobbly/feint/sick. It's very scary.
Had a lovely time at Sue Ryder Fireworks and Halloween last night. Next years date was printed on the programme, do I think I'll be here to go? No, not if I'm honest and baring a miracle. I said to Wendy yesterday that I hope to make my 46th birthday but even that's now making me think I'm being too optimistic.
Oh this is turning into a 'poor me' post. When I feel ill that's how it makes me feel. I hate being like this.
I will snap out of it soon.
**update**
I did indeed snap out of it, by 9am I was feeling 99% better and had a good day in the end. Made cakes, did washing, ironing, roast dinner and bits and bobs around the house
Nothing keeps me down for long.
Love Clare xx
Friday, 28 October 2011
Hospital again today, 3 weeks go so quickly.
Treatment done fairly quickly but then had to wait over an hour to see Dr C.
Told him I hadn't reduced steroids and he was fine with this and suggested that I reduced by 1mg from the weekend, so I will reduce Sunday as nothing going on Sunday and Monday so if I feel rough I can go to bed.
I asked what the situation was with brain tumours i.e. what can be done when they start up again. He said if one particular area was causing me 'trouble' they would consider a targeted area of radiotherapy.
I have a hard lump on my right breast and he said last time that he thought is was scar tissue from my lumpectomy. I asked again as not convinced but he is adamant.
He's planning a CT for after Christmas. Which is a good thing as it shows he thinks I'll still be here for that!
Met Mum, Dad and Jack in town. Back to their house and then Jono, Dad and I went out in the evening for a meal at Tampopo.
Love Clare xx
Treatment done fairly quickly but then had to wait over an hour to see Dr C.
Told him I hadn't reduced steroids and he was fine with this and suggested that I reduced by 1mg from the weekend, so I will reduce Sunday as nothing going on Sunday and Monday so if I feel rough I can go to bed.
I asked what the situation was with brain tumours i.e. what can be done when they start up again. He said if one particular area was causing me 'trouble' they would consider a targeted area of radiotherapy.
I have a hard lump on my right breast and he said last time that he thought is was scar tissue from my lumpectomy. I asked again as not convinced but he is adamant.
He's planning a CT for after Christmas. Which is a good thing as it shows he thinks I'll still be here for that!
Met Mum, Dad and Jack in town. Back to their house and then Jono, Dad and I went out in the evening for a meal at Tampopo.
Love Clare xx
Sunday, 23 October 2011
Another one succumbs to this hideous disease.
This time it's the daughter of a fellow BC suffer that I met on the BC forum.
Karen was only just 40yrs old and leaves a hubby and daughter aged 5yrs. She like me had extensive secondary cancers and ultimately they were in her head.
Jon immediately asks when she was diagnosed and I know what he's thinking. She was diagnosed with brain mets in March I think, my friend Paula was diagnosed in March last year and both are now gone 7mths on.
By my reckoning I may make end of Jan if I follow form...better do as want a nice Xmas and have just got tickets to see Blood Brothers at end of Jan!!
It truly is the most indiscriminate, hideous disease that there is (no offence to MS/Motor Neurone etc suffers but this is happening to me).
RIP Karen and may your Mum Marie have the strength to go on as the days go by.
Love Clare xx
This time it's the daughter of a fellow BC suffer that I met on the BC forum.
Karen was only just 40yrs old and leaves a hubby and daughter aged 5yrs. She like me had extensive secondary cancers and ultimately they were in her head.
Jon immediately asks when she was diagnosed and I know what he's thinking. She was diagnosed with brain mets in March I think, my friend Paula was diagnosed in March last year and both are now gone 7mths on.
By my reckoning I may make end of Jan if I follow form...better do as want a nice Xmas and have just got tickets to see Blood Brothers at end of Jan!!
It truly is the most indiscriminate, hideous disease that there is (no offence to MS/Motor Neurone etc suffers but this is happening to me).
RIP Karen and may your Mum Marie have the strength to go on as the days go by.
Love Clare xx
Saturday, 22 October 2011
Sad day as I decided that my wedding and engagement ring had to come off as my fingers have got so fat.
I tried yesterday using soap/vaseline/making my fingers cold etc but to no avail. Should have done it weeks back in hindsight.
Went into town and had both of them cut off. The man in the jewellers was so nice to me (he lost his 1st wife to cancer, she must have been so young as he wasn't as old as me I don't reckon).
I have engraving on the inside of my wedding ring but it was impossible to see where the writing ending and unfortunatley he cut through the date but promised that they would make good when putting it back togehter. I did go to a reputable jewellers with a doorman (get me!), so should be ok, just didn't fancy Samuals/Ernest Jones dealing with me.
Both rings will be ready in about 2 weeks.
I decided not to have then made bigger as I may have to have them off again so I'm having them mended and will put away safely for Jon to look after for Jack to have one day.
Couldn't have a bare finger so got a cheap silver ring that looks ok, well I think so.
Love Clare xx
I tried yesterday using soap/vaseline/making my fingers cold etc but to no avail. Should have done it weeks back in hindsight.
Went into town and had both of them cut off. The man in the jewellers was so nice to me (he lost his 1st wife to cancer, she must have been so young as he wasn't as old as me I don't reckon).
I have engraving on the inside of my wedding ring but it was impossible to see where the writing ending and unfortunatley he cut through the date but promised that they would make good when putting it back togehter. I did go to a reputable jewellers with a doorman (get me!), so should be ok, just didn't fancy Samuals/Ernest Jones dealing with me.
Both rings will be ready in about 2 weeks.
I decided not to have then made bigger as I may have to have them off again so I'm having them mended and will put away safely for Jon to look after for Jack to have one day.
Couldn't have a bare finger so got a cheap silver ring that looks ok, well I think so.
Love Clare xx
Monday, 17 October 2011
Busy old week last week...
Tuesday Paul and Janys arrived from Spain to stay a few days, which is lovely now we can put them up as I get to see more of them.
Wednesday Wendy's birthday lunch at London Street Brasserie..lovely.
Thursday was my lovely hubby's 40th Birthday...we dropped Jack at school and went into town to get Jono some new clothes...he managed to get 2 pairs of jeans/a coat/a jumper and a shirt. We had lunch at Prezzo's which was lovely.
In the evening we went for an Indian with Paul, Janys and Dad...again lovely.
Friday I went to Lucinda's Mum's funeral...very sad, as I kept thinking what if that was my Mum...she was a loved lady and so many nice things said about her.
Saturday was a day of bit's and pieces..shopping for tea on Sunday and tidying up.
Sunday we went to The Moat House for lunch to celebrate Jono's birthday with my family and it was really nice. Back here for cream tea and birthday cake.
So busy weekend but I had lots of help so not too tiring.
Love Clare xx
Tuesday Paul and Janys arrived from Spain to stay a few days, which is lovely now we can put them up as I get to see more of them.
Wednesday Wendy's birthday lunch at London Street Brasserie..lovely.
Thursday was my lovely hubby's 40th Birthday...we dropped Jack at school and went into town to get Jono some new clothes...he managed to get 2 pairs of jeans/a coat/a jumper and a shirt. We had lunch at Prezzo's which was lovely.
In the evening we went for an Indian with Paul, Janys and Dad...again lovely.
Friday I went to Lucinda's Mum's funeral...very sad, as I kept thinking what if that was my Mum...she was a loved lady and so many nice things said about her.
Saturday was a day of bit's and pieces..shopping for tea on Sunday and tidying up.
Sunday we went to The Moat House for lunch to celebrate Jono's birthday with my family and it was really nice. Back here for cream tea and birthday cake.
So busy weekend but I had lots of help so not too tiring.
Love Clare xx
Saturday, 8 October 2011
Woke at 4.30am and felt retched, the pain across my right eye and forehead was excruciating. I didn't want to take my daily dose of steroids at 4.30am so put up with it until 6am...felt quite sick with the pain so had some paracetamol as well.
For then 1st time since being dx with brain mets I was scared today...eek!
Went to Finchampstead as Jack had TKD testing and we got there, walked up stairs and I started to lose my balance, felt really wobbly and didn't feel as if I was in the room, had to sit down before I fell down. Recovered enough to have a shortbread and latte after which I felt a bit better.
Have had waves of lightheadedness this afternoon and feeling of not being too steady, but Jack and I just chilled out for a while. He is such a good boy as never asks to go anywhere or do anything when I'm not feeling too good...just tells me he loves me.
When I was with Jon yesterday, I was having trouble walking, dragging my left foot now and again...hoping that increasing the steroid dose from this morning will sort it out. I know that I can't keep the tumours at bay for ever but would like to see another Christmas/birthday feeling relatively well and of course Tim & Vic's wedding...is that too much to ask?
Love Clare xx
Friday, 7 October 2011
Hospital again today for my 'normal' treatment.
Went in about 9.30am (as they drug company 'forgot' to send tall the Herceptin orders!!) and was out and down in clinic for 11am.
Had a bit of a wait as usual but saw Dr C and went through my list of 'niggles'...main one being head and eye pain so, unfortunately he said double the dose of steroids for 10 days if it calms down reduce again to see if it is doing any good. Not what I wanted or need but if it's prolonging my life then so be it.
Jon was off today so he picked me up and went to lunch and then to Nationwide and paid off our mortgage...how lovely but a shame I have to be ill to do it!! Through a bit of a hissy fit at the redemption figure £751.00!!! plus admin charges of £90!
Popped round Mum and Dad's for a cuppa and chat, picked up Jack from school and went to do weekly shop at Asda...very busy and one miserable child...make me so angry!! - his legs hurt could he go in the trolley, can I have, can I have...I think my idea of shopping and phoning Jon to pick me up was the best idea...but no they wanted to shop with me...
All sorted and pit away for another week...think I'll go back to home delivery...much more calming!
Monday, 3 October 2011
Jack went to his 1st football match at the weekend Reading v Boro...not a good scoreline 0-0 and he managed to fall asleep for 20mins of the 2nd half!!
Nathaniel and Aaron stayed over corrupting their Uncle...not that it takes much, but good time was had by all and that's what counts
Mondays are starting to be a struggle..Jack's school stuff weighs a ton and there's no way he can carry it...it really hurts my back but it could also be due to the size of my huge stomach. The more weight I put on the worse I feel - no energy/aching/getting out of breath/walking slower. If I want to defy the odds I have to start helping myself. No one else can do it for me.
I have said it before but this time really want to make an effort with losing some weight. It makes me so miserable seeing what I've turned into..so I have done a dinner menu for the next 2 weeks, I do have quite a few meals out socially and will promise to myself to choose off the menus wisely.
Why is it so hard?..
Having cancer is hard enough without all the associated crap.
Sunday, 25 September 2011
Have had a lovely weekend.
Saturday was busy, flu jab for Jon and I in the morning.
Went up to Marlow to meet Tim and Vic for lunch at the Harvester, an hour(ish) in the park after to let Jack run off excess energy and then off to get Jack's pageboy suit fitted.
Sunday we had a bit of a slow start my head was hurting when I woke up, so went back to bed for a while. I hope it's a one off and tomorrow I'll be ok.
Off to Wendy's for Sunday lunch and as usual it was delicious. Had to leave at 4.30pm as Jono was off to Boro (his Nanna's funeral tomorrow) and he had to go and pick up Nathaniel from Kent on the way (not on the way at all but hey ho!)
Judith and Gerry called in on their way back from Gloucester and stayed for a couple of hours.
So a busy but nice weekend.
Wednesday, 21 September 2011
At last I have a nominated Macmillan Nurse. Her name is Ellen and she a lovely very knowledgeable lady.
She took notes on my whole diagnosis since 2006 and medication I'm on.
Has offered to send me leaflets and stuff on available activities at the Macmillan Centre and suggested we may like to go to the Macmillan Hotel in Bournemouth for a short break.
So although I don't feel I need her on a regular basis just now I know that she's only a phone call away if I do need any help or have any questions. She will also try and get Dr Charlton to get a move on with my life claim..he's had the request since June!
She also suggested that we may like to contact Daisy's Dream so they can talk to Jack...he's already started asking questions and they are much better qualified to help us with him rather than messing up and trying to answer ourselves. I will ring them next week.
Saturday, 17 September 2011
On my own tonight as Jono away at Nathaniel's.
Feeling a bit sad actually, doesn't happen often but every now and again it creeps up on me out of the blue.
TV is boring even though we have just had Sky installed there still isn't anything I want to watch. So I have been listening to music on You Tube.
I can't believe that I was a carefree 16yr old out and about with friends never breaking the law but on the edge sometimes...and having no idea what the future held, just living for that day.
Just went up to the loo and caught sight of myself in the mirror..how can someone be reduced to looking like I do...it's so cruel. I look at photos of me not so long ago and it's like a different person I'm looking at.
Not really sure what I'm trying to say but thinking back to my teens/20's is making me sad, I still have most of my friends from back then and of course I now have a lovely little family, so nothing to be sad about really.
I hate this disease and all that it does to you..bloating/baldness/bad stomach/tiredness/breathlessness/dizzy/nausea/anger/short term memory loss/blurry eyes and inability to write neatly!...every medication I take has horrible side effects ...I wouldn't wish cancer on my worst enemy...it's vile!
Friday, 16 September 2011
Another treatment over. Didn't keep my clinic appointment as I have nothing to ask/say and as my consultant was away (again), so thought I'd leave it for another 3 weeks.
Didn't take that long and was out by 10.45am, usual 'Friday Club' having a laugh...me, Charlotte, nurses - Kate, Sandra, Carol.
Charlotte is due her final Herceptin on Dec 9th so it will be great for her to not have to trudge all the way from Newbury but I will be left as sole survivor of 'The Friday Club'...there were several other ladies but all have finished treatment....I'll just have to recruit some newbies as I'll chat to anyone it shouldn't be too hard.
Finally getting Sky back tomorrow after 3yrs without. Jono is off to Kent to see Nathaniel and Aaron and to go to the football, staying over until Monday. Hope it won't be too long a weekend on my own with Jack.
We're baking Saturday afternoon (flapjacks and gingerbread men) - Jack's request. Sunday he has a party to go to and then we'll probably go round my Mum and Dad's as they've been away for a week.
Love Clare xx
Saturday, 10 September 2011
Well last night I met up with Fiona a lady from BCpals forum.
We've been chatting for ages on FB and when I had my latest diagnosis she was compelled to come and see me.
All the way from Aberdeen!!!...how fab is that?
Went out for a meal last night and didn't stop chatting all evening, got on like a house on fire.
Today we went to Nirvana Spa. A lovely relaxing day, still managing to chat. Fiona had a hot stone massage whilst I just relaxed by the pool, lunch followed (yum) and then in the heated lounger room...I managed to snore as fell asleep...oops!
Hydro pool next and then Floatation...which I loved.
Champers in the Garden Room to finish off.
Jono picked us up at 5pm and my day was complete with the Strictly launch show to pair up the dancers..really looking forward to it this year (always am).
Tomorrow Fiona is coming to lunch..hope my roast lives up to the hype!!
Friday, 9 September 2011
Today is the day I meet Fiona Smith.
A lady I have been chatting to on FB and BCpals forum for a few years..
She is coming all the way down from Aberdeen and staying at The Moat House for 3 days. Tonight we are going to The Walters Arms to have a chat and get to know each other, tomorrow we have booked a whole day at Nirvana Spa. Sunday she is having roast at my house.
I just know we'll get on as we have same sense of humour and our health situation is similar.
So I will report back as to how the weekend went.
Tuesday, 6 September 2011
So another school year begins.
Y1 for Jack today and he walked up the lane with Megan very nicely indeed. Pouring with rain mind you but he didn't seem to care.
Yesterday he asked me if he'll get chickenpox again and I said no you normally only get it once and I asked why he was asking. He said Alice had chickenpox and her Mum died - I have no idea how he's linked the two as they aren't! I said yes she did but she was very poorly. End of conversation.
He was upstairs with Jon last night and asked him if I was going to die soon. I think children know and feel a lot more than we give credit for.
I had a word with him on my own and said that yes I was poorly but not as poorly as Alice's Mum was and that I will not be going anywhere just yet.
So hard to protect them but should they be protected?...I'm not sure either way.
Anyway, enough of that enjoying my first day on my own resting and catching up with a couple of recordings.
Thursday, 1 September 2011
Another week gone by and I feel good this week.
The school holidays have gone so fast, can't believe that Jack is back to school Tuesday.
Been getting in training for the school run by getting up at 7am with Jon so by Tuesday I should once again be used to early starts...although laying in until 9.30 is lovely.
Had a lovely day with the 'Baby Club' ladies and the kids all played nicely. So lucky to have been part of a postnatal group that most ended up being really good friends and get so much support from them too.
Iris the funeral celebrant rang tonight to see how I was, I saw her before we went to Spain and she was just checking in...lol...such a lovely lady.
Something on everyday until Monday and that day will be spent very quietly, sorting uniform, ironing on labels, finishing Jack's 'Summer Holiday Diary' and generally chilling. Swimming for Jack re-starts Monday at 4.30pm so mustn't forget to go to that!!
Just went through school inset days for next year and Jon isn't able to book any...all taken and the only week he can have in the summer is the 1st week of school hols no other full weeks available...so bloody annoying.
He's had his hours changed at work from 8am -5.50pm to 8am to 3.50pm, so now he works 5 days instead of 4 days with a day off. Much better for helping me and taking Jack to things. Only took exactly 3mths for his boss to do it...disgraceful if you ask me but I have a laid back placid hubby who just lets things be...I would have been on his case after 2 weeks!!
Anyway, waffle waffle...can't help myself sometimes...
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