I’ve not been on for a while, poorly little people etc have got in the way.
I’ve made it through cycle 5, and since the tweaks in dosage have been doing OK. After the scan at the end of Oct, we finally got a straight answer to what’s what. Having been told initially that the liver tumour had grown and and not responded to the chemo, we waited another month to be told that the report was wrong and in fact it has shrunk, thank god! The person reporting used an old scan to compare with and the CNS FORGOT ( yes forgot) that she was meant to ring me with this news!
The down side to getting this far is that it took 5 painful attempts to get a useable cannula in today #feelinglikeihugged and angry hedgehog.
So I have agreed to have a port put in before the next cycle. Has anyone else got 1 and how if so how was it for you? Is it painful? Does it irritate you? How did you get on with it?
Sorry for the long winded post and thanks for getting this far.
Onwards and upwards.
Best wishes and luck to allxxxx
Hi Erin I have a portocath in my Right chest. I've had it since January and it will be in until March when I finish my last Avastin. It's a dream. They give me an Emla patch to put on 2 hours before accessing it and I don't feel a thing. It's completely under the skin so whilst I don't see it I can feel it. Putting it in is a big deal for them mainly as it's under imagery but I didn't really feel it. Pity you didn't get it at the beginning. Jayne
Hi Erin :-)
Nice to see you around again :-) Sorry to hear you've been given misinformation but very pleased to hear that the news is better than it was. Hoping everything goes well for you from now on :-)
Be lucky :-)
Thanks jayneee, that's good to know. Its being done on the 19th and fingers crossed will be easy enough.
Thank you Tivoli, I've been lingering in the back ground but not posting as didn't want to be a constant negative ninnie. The not knowing and having an over active brain weren't a great combination.
Best wishes to all.
Onwards and upwards xx
I'm sure they weren't!
Hi, i had a pic line put in which is inserted into tljearm and a tube goes up your arm (in the vein) and into your chest this is used to administer everything! Chemo, fluids, antibiotics etc i was hospitalised too many times and every time I stayed on the cancer ward they used this for everything I had 0 canulas....best thing ever!! It was annoying as you have a tube dangling and putting on jumpers or cardigans it would catch but you learn to move it and it doesn't hurt at all to insert as your arm is numbed and doesnt hurt when removed either - the only down sise is the dressing has to be changed every so many days - I use to leave mine until I went for my chemo which was every 3 weeks I always got told off but I wasnt travelling 3 miles when I had no transport just to get it changed!!
All I have now is a small round scar like a chicken pox spot that's all you wouldn't know I had one! i refused the one in the chest as I had a friend years ago who died from cancer and he had one and he kept picking up infections cus of his......(he died 5 years later because of the cancer not the tube!)
Hi Carmel, I hope you are feeling OK after your latest op.
Thanks for sharing your experience of the pic line. Between the nurses and I we have decided that the port (in the chest) is the best way to go. Having a toddler who is likely to pull/fiddle and touch the pic line isn't going to work for me.
Having the port means I can still swim and maintain a little normality when everything else allows. I'm dubious about having it put in, it was a decision I had to make there and then. I almost ended up with a temp pic line on Tuesday after 2 3/4 hours of them trying to get a cannula in.
I'm hoping it will go smoothly and not cause any issues once its done. Anything has got to be better than looking like a pin cushion and getting nowhere.
Onwards and upwards
Best wishes to all xx
nice to hear from you Im always wondering how your getting on 5th cycle done well done you are doing so good
I can't believe that they messed up with your scan results but if your in the uk I can relate to it like you said in my post
I haven't had a port fitted but if I'm to stay on the chemo I will be having one fitted I have chatted to some of the girls at chemo that have them and they think they are brilliant as they don't have to worry about getting them wet
i take it that if your having a port fitted then you must be staying on the chemo for as long as you can ?
Keep posting stay positive
onwards and upwards
Hi Michelle, its lovely to hear from you too. How are you?
Ive not posted much lately but have been lurking and reading. Getting to number 5 after such a horrid start seems mad to me, I don't count them, last year I counted them down but with no set number and counting up its not the same.
I am in the south west of the UK. When I think back about scans, the majority of them have been reported badly, not at all or have had to be redone. Its shocking and something I comment on every time I get a frigging questionnaire on the services.
I have spoken to people with both the pic line and the port and which ever people have they sing their praises. I'm really nervous about the procedure but looking forward to not having to worry about cannulas anymore.
Since the scan showed a response, the plan is to keep going for now and see how we go. I've been battling with myself for a while now about what to do for the best but I can not find the answer.
Onwards and upwards
Love and hugs
hope the port fitting goes good today
it's got to be so much easier than trying to put a canula in
onwards and upwards
love Michelle xx