I have been following your posts for a couple of days now. I like your sense of humour especially tonight when you talked about falling asleep during treatment. I used to do that during chemo - a friend of mine does distant Reiki treatments and when she did them on me during chemo I always fell asleep. My one worry was that I had snored, dribbled or made smells!!
I don’t know much about calcium levels and liver counts but I presume they are important markers for you. I am recovering from mx and axillary clearance at the moment, from dx of stage 3 grade 3 but so far so good. Reading your posts gives me such hope for the future and I hope that I cope as well as you appear to be doing if the tide turns on me.
This post looks a bit patronising when I read it back, but I am going to submit it anyway because I mean the words I have put and mean them in a good way.
It’s lovely that you’re still keeping us up to date with your life and what’s going on, Clare, please keep doing so. I hope the feeling of hogging this post has gone - after all it is YOUR post
I’m glad the transfusion went well and your energy levels are on the up. Good news about the other levels as well - something must be doing it’s job.
Looking forward to many more posts and updates from you.
Nicky xx
Goodness knows who’s blood I got…some hunky student (I hope)I just slept from my last post on here till 8.30 (missed my daughter going off to school completely) I have’t had such a peaceful night in ages, and there was I planning to make a cake last night!!
A lovely bright day, may go out later, just for a wander but its dvd’s aall the way today, with a fire.
Hope you all have lovely day and find a few ME moments to enjoy :o)
Clare xxx
Morning Clare, It is a cold but beautiful day here. I hope it is with you too nd you manage to ‘use a spoon’ nd enjoy it. Ive just read the spoon theory!!!
RevCat - I LOVE IT!! May be you should start a ‘spoon thread’ as i think it is so valuable!! I wondered why i was so tired today - nd now i know why! I borrowed a spoon from todays supply yesterday - it was worth it - but need to add a spoon in to my handful today nd hope lying on the couch may do this!! But even if not, at least im not using a spoon on doing the washing!!
What a strange day I had…I never did get out of my PJ’S or go for a walk. I had a few calls (auntie milly 9.45)everyday lol. Just chilled but felt so unbelivably tired again, my feet are very tender and are splitting and my hands hurt, slitting and they go into spasm and lock which is getting me down. So unusally, after lunch I went back to bed, had a very strange dream about ‘mass’ cards (i had loads from Ireland from my Bro in laws visit )Was rudely awakened as my daughter had forgotten her key. She was on great form and we had such a giggle for about an hour, she’s so descriptive about people, there looks and perculiarities, I just sat there and soaked it all in :o) Like I said on th spoon post, I sent her the link and she really understood which for the future will be good as I can do less and less.
My friend, who has been elusive texted me to borrow my fish kettle of all things lol. She had heard my hands and feet were bad and came and sat with me and did aromatherapy massage to both, what a star :o)She said she was reluctant to come and see me but would come again, armed with oils for another session ( lucky girl)
It was later that evening after much thought that I decided that maybe I should stop the xeloda as perhaps it was hindering quality of life in the long run…I mentioned it to my Ex-husband who’s reaction was explosive, to say the least!!! He said I was giving up, it was obviously doing good as well as the bad and that I should carry on…We had a great spat! but actually it turned out for the good as we talked and talked about the kids and that I thought he would crumple when I died and not manage, all my anxieties came out and for the very first time I saw a glimmer of what could be a stronger person underneath. He had a nervous breakdown when I asked to split up and divorce (married 22 yrs) He was so very bad that he was signed off work for 4 months, was in a very dark place where I had to watch as he had threatened me harm.
He was very open tonight about the councelling he had had.He said he was able to carry on now, as he still loved me dearly but he has already ‘morned’ my passing out of his life and is stronger now than perhaps when I carried him in our past relationship. He reassured me that he would never cut off my family to my kids and would seek help, especially with my daughter to my sister who will be her legal gardian.
He gave me the biggest hug but he’s also given me a little more peace in my mind where the children are concerned.
So a milestone day…
Still can’t sleep though :o)
Clare xxx
i’m so pleased you managed that heart to heart with your ex-you must feel comforted to know that he is stronger than he was and won’t crumble for your childrens sake-hope you have a good day x
Wow, what a great day Clare - well done you. So glad you had some lovely moments as well as routine and uber deep conversations. Also glad the ‘spoons’ were useful.
It is YOUR choice how long for and what drugs you take, you are not giving up if you decide you’ve had enough of something. There are tough calls to make between ‘quality’ and ‘quantity’ which only you can make. I am sure that you will make the best possible choices, the right ones for you and your loved ones and ‘nuts’ to anyone else.
Some resolution with your ex - sounds like a big ‘tick’ to me!
What a big day Clare! Definitely must have used a lot of spoons sorting all those things out with your ex However I expect (hope) you slept well last night as you have both been able to be so honest with each other, it must be a great relief. As to what you do with your medication - who are we to judge? You do what is right for you and your family. Having said that I hope you’re still around for a while yet! You’ve still got that cake to make LOL.
Nicky xxx
ps - Rev Cat - I did enjoy reading the ‘spoons’ link, unfortunately I’m not even sure any of my friends would even realise how that links in to me having secondaries!
Hi Clare,
So good tohear that you are being positive and are feeling a bit better.
Keep it up nad every-one else here. it’s good to read all the comments.
I still have very wobbly legs and finish the rads to-day, and more steroids so keeping fingers crossed that it’s beginning to work.it’s sich b*****y work walking around on a crutch thhough! Still it is moveing so better shut up.
Love
Rosie xxx
Morning Clare, your post is wonderful. I really hope i can talk to my OH about all those issues one day! Thank you for making me think about it. I will make it happen. Hope your spoons are pleantyful today!
Hope you will be waking up with a bit of a weight off your mind since your talk with your ex yesterday.
I haven’t done Xeloda yet (but there is a box out there with my name on it I’m sure!) but from other women I’ve spoken to, I know it can take a real toll on your hands and feet, as well as all the other SE’s. As others have said, it is about quality Vs quantity and you’ll know yourself, but would it help to have a chat with your Onc or Mac/BCN to see if there is anything else which would relieve the pain and make you more comfortable?
The massage sounds like a real treat and I hope that all your friends will continue to come around. Like you I have friends who have told me they wanted to come and see me but “didn’t want to intrude / bother me” etc and while I completely understand, sometimes I think, “Jeez, how bad do I have to get before you come?” I wish you lots of phone calls and door chapping - but not so much you get tired out. My friend who died of liver cancer used to have a system where she would put either a “You’re welcome” or “B-gger off!” sign up so we all knew where we stood which worked really well.
Hi Clare, I’ve been on Xeloda for nearly 4 years now. Some things that have helped me, Udderly Smooth cream (google brings up the sites that sell it…) Eucerin cream and if you’re having a pj day Flexitol heel cream is good but very greasy. For heel, feet, finger cracks, I really recommend silver plasters (they do seem to help the skin heal faster and they stick well!)…perhaps with a cushioning plaster on top of that. I have one plaster on at the moment and won’t use cream there until skin has healed. Also just to add you can lower the dose of the chemo if the side effects are not easy to live with. It can still be very effective on a lowered dose.
Take Care…x I’m off to visit the spoons thread…x
Clare, that really was a momentous day, I hope you feel a weight has been lifted after the talk with your ex. And lovely that you can still have a chat and a giggle with your girlie. I know my kids can drive me bananas, but I wouldn’t be without them for all the smiles they give me.
Clare,
Thank you so much for sharing. I only hope that I’ll have half the courage, dignity and humour you have when my time comes. Here’s to many more special, ordinary days! Hugs, Angelfalls xx
Retail theraphy with Mum happened today, I love to see her happy and having a ball…her eyes light up like radar at clothes.
She is having a tough time too,(dad has secondaries too, from rectal cancer) so anything to help her is a bonus.
She said she thought she had worn me out, which she had, big time but it was worth every spoon in the pot…
we did have a bit of a laugh at one sales lady said she would get a chair for her friend, I said she was my mum but then thought and said she was as good, if not better than any friend I have.
My ‘big’ day tomorrow, Parents evening. I know lol, I used to dread going to them but it was actually a goal to achieve. To also set up anything that I can do as support for my daughter.
So rest, rest, rest is the order of the day tomorrow…promise :o)
Best finish my port…(bad girl) and get some shut eye
night night
\clsre
Pleased to hear you had a good day, Clare. Your mum sounds a lively character, girly days with mum’s and daughter’s are always great, your mum will have gone home happy. Sounds the day was a tonic for you both.
Have a good rest, rest, rest tomorrow, parents evenings can be fun, my daughters’ and I always had a giggle, I mean some of the teachers comments!!
Hope the glass of port does the trick and you sleep well.
Sounds like very functional spoons (tablespoons perhaps) needed for this evening, so hoping you can find a shiny, silver one with a decorated handle at some point today too
