[@Praise]‍ 

Nel,

Just to let you know you're not alone re side effects.  Now on day 3 post first Paclitaxel and my lower body is well achey, feels like I've done umpteen marathons with no practise or warm up.  Am hoping it will pass shortly as I've been told it should.

I hope your side effects have become more manageable and that everything is OK with you.  Despite my very small set back above all is well and managing to do normal stuff and , more importantly, retain my sense of (bad) humour.  Have even done all my Christmas shopping!

2nd MRI showed less dense lump area so doing well re impact of chemo on naughty hamster, hope yours is progressing well too.

Sam X

Hi Sam 

Good to hear from you,  yea it's never 100% good but manageable,  mine sometimes bones from shoulder down hip, ,thirsty. 

Am glad with outcome of the MRI, am going for second ultrasound on Thursday, I did first one when I just finished first treatment, FEC, showed a decrease in size and less dense,cracked, and on Thursday will do second one let's see how taxol is playing its magic in there, if am not pleased will ask for OP first to get lid of hamster, I hate it seeing its eyes on me, Lord have mercy,.

So far I did 4 taxol ,8 to go, my port still hang around like a dummy, cant use it,and my veins are not good at all but i give praise to God, He is in control of it all.

I haven't much into work,i am taking time to relax, my job is more physical so mmmmm sometimes I should love myself than money.

Wish you well Sam, this night I had a band on my leg and had small cut,as soon as my daughter looked she cried and said mum"i dont want anything like this happens to you" she wept inside me I was like oh God have my on my daughter, heal me Lord so she can be happy.

Good night sam

Nel xxx

Hi Sam

Well I was due to get results/plan on the 8th, surgeon called the afternoon before to see if I wanted op next day! 

So Horace was removed, had to have the open thoracotomy because it was to big for vats. I have my follow up appointment tomorrow to see about further treatment/results from lymph nodes he took. Recovery hasn't been too bad, every day I found things slightly better. I'm out walking every day and more or less self sufficient again other than not being able to drive or lift anything heavy.

Hope things still going well your end

Take care

Kez x

Kez

Fantastic news!  So glad you've had op and are recovering well, you must be chuffed.  Am so glad for you and hope that lymph node news is good.

Not so good here, my bl***y feet are driving me mad, its the side effect of the new chemp drug which has been particularly severe (post just one cycle) and has curtailed cycling, gym and makes walking painful & very slow.  Also means little sleep.  I've made it known to the team that I want to come off this drug and have a meeting with oncologist next week to discuss.  There's also a risk that this could be permenant!

Anyway am glad your news is good, that makes me happier.

Sam X

Nel

You seem to be coping with the taxol better than me, well done!  I've just about had it with this chemo lark, it was fine with EC but paclitaxel is a whole different ball game....and I hate being miserable, its not me.

Glad you've taken it easy work wise, I hope that's working out ok for you & your daughter.  I'm still plodding on work-wise as bills to pay but my job isn't as physically demanding as yours I suspect (as I sit on my bum all day long).

Glad your scans are showing good progress, there's definitely someone looking after you Nel.

Why can't you use your port?  Mine is a god-send, I would be even more annoyed than am if I couldn't use mine.  I had to have some stern words with the MRI dept who have been refusing to use it for contrast and I've reached the end of my tether and told them they really need to speak to the chemo dept and resolve the fact that it can be used between them!

Your daughter is strong like you Nel and I know you'll both be just fine.

Sam X

That's my next dread - the chemo!

No spread to the lymph nodes they took but tumour was 9.5 cm so still want to do chemo, no one believes it hasn't spread given the size! I have to come off steroids and wait until drain site has healed (took swabs today it's yuck!) before they can start it but referral has been sent. As soon as I know what the plan is I'll be picking brains for advice on how to cope lol

Hope oncologist can sort out treatment for you x

Good luck to you too Nel x

Take care

Kez

Hi Sam

Honestly this journey is not an easy one, that's why when we complete and triumph we will be changed people altogether, the way we think,love,decide, handle or think because it's like you went through fire furnace and came out.

Day to day the giant of fear is awaiting just to mess up the day, but may God strengthen us so can stand tall until the end.

When I was on FEC had different issues but no pain in bones ,but taxol mmmm pain like am not on treatment, am like what's going on inside? So it's not only you, its giving me tough time that's why cant work like I used to but good thing is circles are numbered, each week we count down very soon we will look back and and say "what?" Have i finished?

Sam it takes the strong to conquer becoz going in the battle ring without fight then enemy will win but we have to fight ,fight, fight till he is defeated. 

My port not working, chemotherapy unit said it's not in right place to use and i tell you coz am desperate for treatment, i still use hands which not even good at all.

I had to go to patient complaining desk but at same time let God be God, i let Him be in control of it all.

Try not to be miserable Sam, be what you are  daily its getting better,you will be ok.

God bless and enjoy week.

Tomorrow is my treatment day

Nel xx

Kez

9.5cms, that's a beast! Well done, I think??  And all clear on nodes, (insert swear word) great!!!

Do feel free to pick away, I wish I had done a little more chemo style picking in light of feet-gate!  They're slowly getting better.  Went to the gym today as was sick & tired of being indoors and not doing anything, did not feel brill afterwards (though was glad I went) so thought I'd have a lovely bath, turned out it was a very shallow mildly warm one...doh!

It sounds so delightful to have a drain site doesn't it, I have to say the thought (and I can only imagine) of a drain is yucky to the max!  Am not squeamish but it makes me think of when the stupid male cat gets abcess's and they start oozing...nice (and if you're not familiar they bl00dy honk too).

And on that note have a fabby weekend.

Sam X

Nel

I do hope you've raised the issue re your port with your breast care nurse or cancer support team as I find that unacceptable and they should fix it.  I am surprised that they can easily find veins to use at this time in your poor arms.

I have pushed back to the MRI team who have told me that they can't use my port to deliver the contrast during MRI, told them they need to speak to my doctor (who says I can use port for contrast) and not to bother me until they've done so, its is ridiculous that we get caught between depts in hospitals who can't be bothered to talk to one another for the good of the patient.

Also if you're having side effects are you letting your team know as there may be things that they can do to alleviate some of the pain or at least adjust future doses, please don't suffer unnecessarily, it shouldn't be too bad a journey.

I am fine, feet are improving so don't worry about me, plus all I have dependent on me is stupid cats, you've got your daughter so need to be looking after yourself & making sure you get a good service from the NHS.

Please do assure me you've done the above.  If the drugs are causing real pain they can look at other options, don't suffer in silence...please.

Sam X