Hi girls! Sorry I haven’t been much in. Tried catching up with some posts before I wrote this but my memory’s gone! Guess it being 6:30 and having beenup at 3 doesn’t help!
anyway, it’s been another rollercoaster week ?. First came the appointment for radiotherapist through over last weekend. Had to travel 1:30hs for the appointment, then find out the clinic was running 1h behind and then told to wait for CT to measure up… ende up coming home 6hs later!!! Then the day I was starting radiotherapy they were running behind, hadn’t received my paperwork AND had to take an antisicknwss tablet which meant waiting another 30’ !!! Thankfully both days the girsl were having fun with grandparents and cousin otherwise it would have been a nightmare!
On top of that I 've been sick for a week (before the radiotherapy) and now have constant feeling in my legs that they are going to cramp. Painful! ?
To top ot up got a call form the onc saying that he wanted to see me… (always dread the last minute appointmnets!) Saw him friday after radiotherapy to tell me that the blitters have taken residence in my liver, haven’t been accepted on the trial yet (they want me to have the next ct and the removal of ovaries that JT had) and to do an emergency ct scan of hte brain due to the vomiting…
aaaaaarrrrgggghhhhh - sorry for the massive rant, I know you understand! (And dont get me going on the waiting times!!!)
JT someon said about having an ice oack unde rthe pillow to be able to hold in the night for the night sweats and that it helped… ?
Hello pmol
Phew …no wander you have been too busy to post here …it’s bad enough going hospital but the waiting is worst …even for my simple bone juice jab …I can be there an hour but I people watch to help it go quicker !!
Holding our hands that everything goes to plan and things get started …
Hugs xxxx
Hello ladies
On another thread a lady has posted that she finds claritin hayfever tablets have helped with her bone pain …maybe worth a try rather than constant pain killers and the side effects …
I might try as I always have hayfever tablets here as all my menfolk sneeze and wheeze during summer and expect me to produce the tablets from my handbag !! It’s like my Mary poppins bag …I can usually provide most things from it in an emergency.
Hugs xx
Thank you guys!!! My husband came with me - the worse part was coming out of radiotherapy and seeing him soooo upset. He told me then and said that my onc was coming to talk to us more. I think the worse part was seeing him soooo upset… ?
CHILLOW! Thats the name of the ice pack and apparently it was in Wilko (UK). I’ll have a look on amazon and see if I find anything whilst my family is running around the house playing nerf wars!!! ?
Hello pmol
Yes Chillow pillows are available online e bay and Amazon have them.
Personally I hated mine …felt like sleeping on a lilo at night !! The dog did me a favour and ate it!!
Xxx
Ff.
Glad u had good results with it but we need to read the side effects from claritin first. That posting was on “going through treatment” …hormone therapy if anyone wants to read the full post.
Oh ff …I haven’t slept well either for 4 nights …I feel really grumpy afternoons if I don’t get my 8 hours shut eye at night! Trying to resist a power nap now as well !!
Hugs xx
Still here - Yes I’ve been told tthe same. No grapefruit, pomelo, pomegranate, star fruit, Seville oranges, marmalade, I think that’s it. Also I have to check every single med I want to take with my trial team.
PMOL - Good luck with scan xxx
I have a chillow that arrived yesterday, used overnight, it was a bit weird to be honest and warmed up pretty quickly! Not too keen but will give it more of a chance.
I’ve switched letrozole brands as I was on one that gave me no hot flushes (Dr Reddy’s), then I had to switch to another for my trial (Manx healthcare), I asked if I could change back and they said yes. So Saturday I took the first Dr Reddy’s again, hoping it helps!
I’ve been offered venlafaxine/gabapentin or amitriptiline for the hot flushes but I don’t want to take yet another pill, plus the side effects of all of those don’t look very fun. Am hoping I’m allowed to take evening primrose oil and sage tablets as have heard good things about those. I meet with my trial team again on Friday so should find out then. They will also take my bloods then and see how they are faring, I’ve heard most people on palbociclib drop down a dose, so I wonder if it will be the same with me in my ribociclib.
The doc also gave me amytripilin for bone and nerve pain …took them for a few nights …wow I felt spaced out to lunchtime everyday and they didn’t really seem to do much so they went in the bin but they are supposed to be good and well used by lots of ladies here.
Everything has side effects …even a rennie tablet so I suppose it’s better not to read all the paperwork!
Damn …I’ve got a mozzy flying around my lounge and they love me …fly swat and spray in hand now and I’m not afraid to use them Mr mozzy! !
Hugs xxxx
Hi girls! So ct of head was clear! ???
However I am now lying in the bed of our local hospital as was still being sick! They admitted me yesterday, had another CT for thorax and it was same which means the stomach is vlear and this could be some irritation of stomach.
So now on my 3 drip of fluids ? And praying they’ll let me go in the morning (ine can just hope, right??) xxxxx
Haven’t checked in for a while. Good to catch up with what’s going on. Well seaside lodge purchased outright and we’ re moving in next week. Can’t wait , so excited. We are literally just across the road from the beach. Cant see from lodge as the beach has a bank above it and our place has a bank at the top. But you can hear the sea from our decking. Like most people I absolutely love the sea and it is a dream come true
Hiya babsy
That sounds lovely …nothing like the beach sounds to relax …obviously it’s a permanent lodge you can live in all year round and not seasonal .
Pmol
Good news about the clear scans and hope the sickness is stopped now …ugh we all hate being sick. .I remember with my primary chemo …I was sick for 24 hours non stop . I remember saying to my hubby can’t go hospital. .too ill !!
Hugs xx
Hello ladies
Quiet here so guess everyone is busy and enjoying the last of the summer …can feel winter creeping in already.
Crissy …glad u get loads of nanny hugs …mine at 12 and 13 arnt keen unless I dangle their pocket money and then I can maybe steal a hug !! But I have twin grandchildren due November and they won’t mind! !
Hugs xxx
Oh Renee
You poor love …all those hospital trips to sort out when you have to rely on transport too…thinking of you. Xx
Crissy
The 12 year olds are twins and so this is the 2nd set. …I shall have to make sure son gets " doctored" after they are born.I call twins buy one …get one free ! Oops.
Hugs everyone xxxx
Hiya Renee
I think for some of us having cancer eating away at us makes our brains sharper and I hate it when people patronise me too …yep I might walk with a stick but I’m not deaf or senile yet !!
Living here in devon …everything is more compact …one hospital really but a good one …oncology and chemo adjacent so hardly any walking between.
Hugs xxx
still didnt figure out why had been sick but the promise of chocolate cupcakes to the jr doc that was on my ward might have helped send me home ? Anyway, it was all clear and although they eanted to do some sort of scopy down my throat, I’m glad they didnt as I’m fed up of being proded.
So now to enjoy my sister’s visit for 2 weeks (although I do have lots of appts) ?
Hello.pmol
So glad u home so you can enjoy the weekend and you will need to just be careful what u eat …no McDonalds or vino !! Most hospitals kick out as many as possible at weekends so they can half the staff.
Renee
Wow you have been busy with sorting out hospital appointments but it’s the waiting that’s worst …we all have to deal with it at one time or other but that’s our life now …
Try not to worry too much as cancer loves stress .
Hugs xxx
I’ve just had my two week check for my first cycle on my trial drug. Common issues other than the normal side effects at this point are low bloods, rarer are issues like heart problems. I was supposed to be there for 3 hours and was there for7.
I had bloods done, weight (have lost even more, it’s now nearly 2 stone since diagnosis) and an ECG. My bloods are ok but my heart rhythm isn’t. The QT something or other is too high (they did two ECGs) so they’ve taken me off the trial drug for a week ? I have to continue the letrozole though.
My oncologist said not to worry and that at the start they will always play around until they get the dose right. Easier said than done though. I guess it makes sense, as why would a dose for an 8.5 stone me be the same dose as say a 15 stone woman… I have to go back in a week for a repeat ECG and then they will look at what to do. So probably reduce my ribociclib dose down.
They gave me something to help me sleep (zopiclone), as I’ve not slept properly in about a fortnight so will be starting that tonight xx
Have been thinking of you all whilst I was away and keeping an eye on what has been happening.PMOL glad you are ok. I have just had the most wonderful week in Greece. This week came back to washing and ironing and a visit to ENT dr as persistent sore throat and swallowing causing pain in ears. GP referred me for chest c ray which was clear but wanted me checked out so me Me andhubby were petrified I had some other sort of cancer but got the all clear today ?. Am off out now withfriends from work so will have glass or 2 to relax before my next Onc appt where I need to mention my hip. But torrential rain aside today is a good day. Have a great weekend all. Wendy
all the best for your scan pmol. Xxxx