miserable few days

hi , just poppoing in hoping someone will tell me to snap out of this (nicely !) final
straw this morning hubby and daughter wanting to go out in our motor home and me end up yelling and crying uncontrolably to stop being impatient (they wernt ) telling them it takes ages for me to get ready with no fingernails , heavy legs , wig to brush etc , i have been feeling really anxious last few days with being on xeloda alone without the taxotere , really scared , morbid , tearfull , deep in thought etc etc , i dont want to live my life worrying about markers and scans and about every ache and pain , headaches etc i am an anxious person naturally but now so much worse , i feel i should be geting used to it , its been 1 year since my mets dx .
how do you do it ? sorry for ranting , told hubby to go and pick me up later , my eyes are so swollen from tears .
be back later ,
love Tracy xxxx

Hi Tracey

No words of wisdom Im afraid just wanted to let you know thinking of you and sending hugs. Sometimes a good rant and cry makes us feel better.

Love and Hugs

Karen

XXX

Hi Tracey

What can I say I also detest worrying about every b…y blood test, markers, aches and pains, etc., etc., I wish I knew what the answer is to being able to deal with it.

I don’t think we would be realistic not to let it get us down from time to time.

Don’t be too hard on yourself for feeling this way. It’s been two and a half years since my diagnosis and I still have days when I could cry for Wales!

These days do pass and as Karen says I find a good rant and cry gets it out of your system.

Denio xx

Hi Tracey

Like Denio says it’s been 2 and a half years for her, it’s been 3.5 yrs for me but living with secondaries is completely different to primary so try not to be too hard on yourself.

Are you able to tell your husband and daughter how it makes you feel and that it’s not actually them that you’re getting upset with? It’s really hard - last night I had a very good friend of mine sobbing on the phone to me that she doesn’t want me to die and I end up consoling her!!! I said to her that I just want her to take her cues from me - I don’t need her verbalizing what goes around in our heads.

Hope you’re feeling a bit better today. A year isn’t that long…

Pinkdove
x

Tracy

dont be hard on yourself, what people dont understand is just how frayed you feel after 6 taxotere…how awfully ripped apart mentally and physically by the whole thing. Last two weekends I have had something similar ended up crying telling my OH just to leave me alone as it was all too much for me, he was getting annoyed with me for something and I simply couldnt take it because i just didnt feel up to anything.

So I think what i want to say is i know how you feel and its only be 4 months for me, its hard. I hope you feel a bit better today as well…

love and a hug
cathy

Hi Tracy

So sorry to hear that you’re struggling at the moment - no real advice other than to say just be kind to yourself. If as Pinkdove suggests, you can talk to your husband and daughter about how you feel and that you are not actually angry with them but with the situation, it might help. Mind you, sometimes I do get cross with my family because they seem to forget very easily how difficult things can be practically for me - probably my own fault because I don’t make a fuss at all but expect them to notice and then all of a sudden I “blow”!

I also think those times when things are changing put a lot of pressure on us. So the fact that you are now having just Xeloda rather than with the Taxotere will inevitably take some adjusting to. What I’ve found as well is that everyone somehow expects me to celebrate when I’ve completed a treatment, whereas I (as you say) am worrying about what will happen next.

Hope you have had a better afternoon … and have some fun things booked in your diary you can look forward to. That is my best coping strategy!!

Lots of love

Kay xx

Tracy I still get incredibly anxious over my tumour markers and I’ve been having them taken since early 2004. Take Care…xx

Hi, Tracy

Hope you’re feeling a bit better now. That taxotere is a bastaaaard and no mistake. But it does get better, you just have to be patient. How well I remember the no fingernails and heaviness of legs, but you’ll wake up one morning and think, hey, the nails are growing and I’m SURE my legs aren’t as heavy today. And then things just get better by the day - HONEST!

Take care. You lucky lady to have a motorhome. I hope you have some pleasant trips planned.

Good luck to us all xx

thanks girls , went out in the end for a drive and a burger ,am having some wine now . yes katherine the tax really really does you in , i am strong physicaly but was no way prepared for this chemo it was horrendous fo me .
yes i did have a chat about stuff to hubby and youngest daughter and they understand , my hubby is a lovely man and treats me so well , i feel for them so much and how if effects them and the rest of my children , mum etc .
kay , yes i know what you mean about people wanting you to celebrate , chemo nurses etc and its hard because we are always th
inking now what…
pinkdove i know what you mean about friends crying i had one of mine crying down the phone a couple of weeks ago saying she could not bear to lose me etc etc (had a couple of wines she had ) and i was there telling her all will be ok ! bloody hell i dont even tell myself that !!
i am hoping that the leg heaviness goes soon and the forever streaming eyes then i can go plan stuff , the thoughts that come into your head are awful eh?
thanks for hugs and words it means so much xxxx

So glad you are feeling a bit better, Tracy. And that you have had a chat with your husband and daughter - it makes such a difference if they understand where you are coming from.

Lots of cyber hugs

Kay xx

Hi Tracy,
Please don’t be so hard on yourself, you’ve got through the dreaded Tax and the Xeloda is pretty good at holding things back I believe. It takes a awhile for the side effects of chemo to wear off, a lot longer than I thought. Still got my runny nose 9 weeks later,wish my nose hair would grow a bit quicker!!
Take care
Allie

thanks again girls .am off to london tomorrow (weather permitting ) to see london doc regarding this SIRT and have a few more questions . am so tired i feel like i need one of those little cars with a man driving at gatwick to wizz us through the crowds and the long walk from the plane !!!
I hope to come back with some answers and will ask if any new treatments on the horizon for us .
well will check in when we return , prob be thurs as we get back late wed eve .
love to all , Tracy xxxx

well back , nothing much to report just my dose needs reducing , had a poo time walking around as my feet were so sore and burning so didnt go far sadly , hope will feel better with the reduced dose .nothing on the sirt either as it is not carried out there so i suppose i will have to look into that more myself .
he did say that if i had not responded to taxotere i wouldnt be here now and that hit me hard and i cant stop thinking about it now , has anyone else been told this ? i guess i knew but it hurts when told eh ? #
well i am looking into meeting on the 24th , i will fly into gatwick so may need directions .
love you gals (and guys )
Tracy xx

Hi Tracy,
Sorry you had such a rubbish time yesterday - coming all that way and not getting answers about sirt is a bummer.
Hate to say it, but my onc told me at the beginning that when he started working in oncology, my liver mets would have killed me in 3 weeks! Unbelievable! Makes you realise how good these drugs are, much as we hate them.
Really looking forward to meeting you properly on the 24th.The cafe is right oppostite St pauls cathedral front steps - you can’t miss it.
Take care of yourself hon,
Jacquie x

i will fly into gatwick . so will have to find my route . what part of london is it ? sorry bit out of touch over here !!

there is a flight to gatwick get in at 8 am and leave at 6pm , how long do you normally spend together?xx

hi Tracy

I really know where you are coming from on the taxotere, probably will find out about the xeloda next. I think the cumulative effect really is awful isnt it, at moment everything hurts, and have to admit I am feeling pretty miserable.

If I were coming into Gatwick I would get train to Victoria and then the district line tube to Blackfriars - you can walk to St pauls from there. 5 minutes (i used to work right there) …its quite alot to do but gatwick express is comfortabke, if you get in at 8 you can come over when you like, last time we met at 11 AM and stayed there til well after lunch time, they were really good about it and let us sit and chat, we ordered lunch - I went off to work at about 2, remember when airports used to be easy - thats along time ago now.

Shame about the SIRT - its seems like such a good idea, I would really like to know why it isn’t more widely used - it seems that it must be quite unproven as from what I read a course of SIRT would be far easier than a course of chemo…but obviously its not as simple as this . I am going to ask my onc and he will do a blah blah about why its not appropriate, but I am bound to find out something I can share.

take care
love
cathy

Hiya,
Tracy,
There is also the Brighton- Luton line which stops at Gatwick and Blackfriairs takes just over 1/2 an hour, if that is any help.
cheers
Allie

Hi Tracy

We all stayed til about 4pm last time, although poor Cathy had to go back to work, so that should fit in fine with you and your flights. I could get there at 10.45 as my train gets in at 10.35. Let me know what you decide.

Bye for now
Dawn
xx