What a week - new chemo - without scalp cooler
This week I have had more ups and downs than a rollercoaster! It has given me an opportunity to think about a lot of things. Firstly I heard from work about my official retirement date - then read the notification on the work intranet about me retiring on the grounds of ill health and I realised I am quite sad that I wont be going back to work and being 'normal' again. However I also had messages from my work colleagues and I realise what nice people I had the privaledge to work with - as well as the young people I helped at work. Some people never enjoy their job I am lucky - I have had many jobs that I have enjoyed, including being a Nurse, Managing a coffee and gift shop, being a Nanny in Toronto, and laterly as a careers adviser after getting a degree in 2005(and getting breast cancer half way through my degree).
I have travelled my breast cancer road with a lady who was diagnosed on the same day as me in 2003 (April 2nd to be exact) - we are extremely close and have always shared our fears, worries and joys together. Along with the angst of cancer I was gifted with this true friend - every cloud has a silver lining. My friend owns a cottage and suggested I organise a wee break for some of the ladies on the site who are also nearing the end of their treatments. So in November a selected few ladies will be spending a week together in Northumberland recouperating and sharing experiences together - isnt that wonderful. I will let you know how it goes later in the year!
On Wedneasday I went for chemo (cycle 4) but ended up being told that the chemo wasnt working as well as they had hoped and didnt get any treatment - I then had to see the consultant oncologist. Without going into details I have to change my chemo and have some more Radiotherapy - things are not going quite as well as we had hoped. I came home deflated and bewildered and had to explain this latest set-back to the kids. I was consoled by all my friends at home and here on this site (you know who you are :o) ) and for that I thank you all. As for the silver lining - new chemo wont make me lose my hair.
Tonight I went out for an unexpected meal with friends (I had been expecting to be on the sofa like a dying duck after chemo!!!) We went to a restaurant under the promenade right next to the sea - and had a good laugh together. Again I am gifted with lovely friends who would do anything for me at the drop of a hat - get shopping - walk the dog - you get the idea!! I got an extra night out with good company - every cloud.
I also made my first purchase on ebay this week - now this is dangerous - I should never have been introduced to ebay - I am the sort of person who watches QVC and thinks she needs everything they are selling - so I hope I dont become addicted to ebay - but dont hold your breath!!
I am going to meet my friends at the Fiesta soon and I cant wait to meet you all. I know this has been a ramble but I had to get it off my chest. I have realised no matter how dificult my week has been I have true friends and they are priceless. Happy Friday people! Jools x
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Hang in there...
Hi Jools
Just read your entry and just wanted to say me and everyone else on this website are with you all the way - good to see you have such wonderful friends to boost you up - keep fighting Jools - and keep smilingxxxxx
Tania
hi jools
hi jools , just want to echo taina's message . we are all with you girl keep up the good fight .friends & family really show what they are made of at times like these & this only echos what you have put in to the relationships before this nasty diease came into your life. you reap what you sow & they are powerfull seeds .thinking of you & keeping smiling that wonderfull smile with love n hugs treeze xxx
friends.
hi jools you are so right about this site what wondefull human beings they are. iam so pleased you have such lovely friends and support network. may i also say you yourself are a truly warm and supportive person and have helped many people including myself overcome fears. iam also looking forward to next week in meeting all these fantastic people. take care.
love babs.
Thank you
Jools my sweet - thank you for being such a loving and caring person. Cancer is a very humbling experience - not only do we discover how many good friends we already have but we have the privilege of meeting new people who become close friends almost immediately through this shared experience. I can't believe I've known you for less than 3 months - you've been such a rock and given me such wise advice. Thank you Jools ... and I can't wait to meet you in person in Leicester.
Lots of love, Kate xxx
PS: Have also just made first purchase on ebay - very dangerous! You see what a lot we have in common [even if you are keeping your hair ....]
URGENT - RE E-BAY!
Sell, sell, sell! It is addictive. I let my husband buy the Ebay stuff and I buy the Amazon things.
It is always best only to look for things you actually want. i.e. the things you had decided to try and buy anyway. Then armed with a retail price, you buy at a bargain. Yes, I know, why we now have at least a dozen rangefinder cameras, I don't really know. Except the pictures are wonderful!
Jools, sorry to hear they are changing your chemo, I hope this one works better. A cottage in Northumberland for a bit of a do. How nice! I hope you have a great time.
All the best
Ruth
u are a lovely friend!!
hiya babes...
u are so lovely (and u know it!!!)..the next chemo would be better babes...i am keeping fingers cross! and yes u have many friends that we can annoy u when u fancy lol
i truly feel honour to have u as a one of my dearest friends.. u are more strong that u realise and laura and i we cant wait to go to the cottage and have fun....
being in cancerbacup open u to make friends that truly understand ur journey and if u have a blue day they can make u smile ; )...
cant wait to meet u in person...
u are truly a gem babes!!!
keep smiling (p.s ..i thieve this phrase from lanzyboy..hope he dont get copyright lol)
hugz babes
mayte/ the troublemaker of the chat lol..xxx
Rollercoaster you said and rollercoaster you meant!
It's been a difficult week for you, sweets, and I know what you mean about the enforced retirement feeling significant. It's so sad that you worked so hard for your degree and then hardly had time to pick the fruits. Sorry about the chemo - but I hope that the RT and the new chemo combine to be more efficacious. I shall no doubt be joining you very shortly.
I hardly dare hope about the cottage - but let's be "positive" and say, See you there and that we'll both be well enough to really enjoy it. Thinking of you xxx Penny
we're here
Hi Jools
Just wanted to say, Im with you all the way through your treatment. You are such a special person, you are there for everyone on here, whenever they need it. Its your turn to take a bit of support from us. We love you and hope your treatment goes well. Helen xxxxxx
new chemo
Hi Jools,How disappointing for you to hear the chemo wasnt working. Looking on the positive though they have realised and are changing it.So heres to the new one working extra hard to get you back on track.Looking forward to meeting you(and all) at the fiesta next week.I echo what you have said about friends,we are truly blessed to have some special ones in our lives.See you soon.Lesleyxx
Thankyou all for replying
I just heard that my Radiotherapy can be delivered after the Fiesta - so I should be on tip-top form to be there with you all! Yay - Party time. New chemo starts 27th - lets see how that goes. Love to you all Jools x x x
Good luck for your new treatment
and thank you so much for your support of me yesterday after my visit to London. xxxx Penny
hello
You are very welcome Penny - as well you know. Sending vibes your way :)
Love Jools xxxxxxxx
Hi Jools good luck with the
Hi Jools
good luck with the new treatment hun
thinking of you !!
looking forward to meeting you on sat at lanza's
tc sys
love
lell
xx
Hi Jools I'm sorry things
Hi Jools
I'm sorry things didn't work out as well as they thought. I really hope that the new chemo goes ok, and the radio.
I will talk to my Mum about the money if I don't forget about. But you said you'd text me to remind me - you know me, I always need a kick up the bum before I actually do something.
Anyway, thanks for all the late night chats me had. I have missed you over the past month or so...don't know how you put up with me chatting all the time. Bet you were glad to have a break! Haha.
Lots of love,
Hayley xxx
Hi Jools, Just wanted to say
Hi Jools,
Just wanted to say good luck with the next treatments and thanks for all the support you have given me (and for putting up with all my moaning!).
Jen xx
Thanks guys!
You are both great girls - and youre both very welcome!! Am taking it easy today and tomorow - Rt over today new chemo etc tomorrow!! Jools x
Good Luck!
Just wanted to say best of British with the chemo - wishing and hoping it all goes well - xoxoxo
Update
So far so good. Have had one large dose of radiotherapy to my spine - still waiting for that to improve my pain and tingling but another two weeks and it should have worked. In the meantime my new best friend is steroids. Began the capecitabine tabs on Thursday and nothing to report there at this time - maybe as the tabs are taken daily it takes time for symptoms to kick in? Having two cycles and then a scan.
Thanks for all of your best wishes, it means a lot. Jools x
Hoping the effects will kick in soon
It must be horrible for you to have the pain and tingling constantly against your spine (sympathy as I have lymph nodes affected close to the nerves there!), and I really hope that the effects of the RT hurry up and work. Wishing you all the very very best with this new one, and that the scan this time shows improvement. You mean a lot to US, Jools! xxxx Penny
Hey Jools, Just want to let
Hey Jools, Just want to let you know that I'm rooting for you, hope you start to feel a benefit soon, Love and good vibes, EJ x
Baby Jools
I'm pretty useless at thinking up original words of comfort that haven't already been said. I can't imagine what it is like for you when treatment is not working, but at least there are still more treatments available for you to go through and I'll keep everything crossed that your next treatment starts to work!x
But Jools you are a lovely person with an infectious giggle and you are always there for everyone else and this Northumberland week you have organised is going to be a ball. Lots of love Laura xxxx