Oh Sharon, I hope that the chemo process gets better orchestrated the next time. I hope your SE are minimal and that you can rest up and enjoy some of your 2 weeks away from the hospital and doctors! It will feel like a vacation. Please do yourself a favor and get a port. First thing my thing my oncologist does when you need long term chemo is look at your arms. He almost always says you need a port. I've seen very few people without them. Hugs, FF
Hello Sharon - glad you got your chemo in the end. Sounds like you had another very tiring day, though. Hope you got plenty of rest last night!
Best wishes. Hugs. Barton.x
Well done Sharon, i usually have a long wait. , our unit has four rooms, sometimes 20+ in three of them, just lately there seem to be less nurses too. Anyway, they wont pet you arrive before your time and then you are told'chair x, in Room x' yesterday there was still a lady in my chair! She told me tnat she would be another 8 minutes, but when the nurse came they chatted for a while about her daughters uni and then a lady opposite had a scary turn.....had difficulty breathing after her chemo....poor lady.
eventually nurse came, looked at my srm and them I had to ho and sit by the sink etc!
however whe got a vein straight away.
I agree with Carolyn, du try and have a lovely rest. Hope you are feeling well otherwise? I wont mention the s word!
love and hugs, Moijanxx
Good luck today Sharon, we'll be holding your hand.
Moijan. I think the placement of the port is pretty much down to the surgeon though I think I'd still have a word with him/her and state my preference if I were you, also don't be brow beaten into accepting a placement that you are really unhappy about. Mine was put in by a woman and she put mine on my 'good' side above the breast below the collar bone and slightly to the left. Unless I'm wearing something really low you can't see it and actually the port itself is quite small and not really noticible, just a little raised bump, the scar underneath, where she originanlly accessed it shows more. I do know someone who has it their arm. When it comes to the time good luck, don't be shy about where you'd like it, it's your body, but don't forget the nurses will need to get to it relatvely easily.
Julie D, how big is a power port? I understand my hospital uses one which is ct and mri friendly so likely its the same one? And is it obtrusive? Were you able to request the site? I hear some people have them in their arms...much less obvious than an extra erect nipple where you wouldnt expect one!( sorry!)
Good luck tomorrow Sharon, i went for mine today and the nurse gave me my blood results...all good, thank goodness. Strangely enough they got my vein first time! Isnt life odd? I cant believe how quickly im in and out of the unit when things go well,I trotted off to buy a purple wig, but they were out of stock!
Helen, I am on the same page about the forgetting things and the clumsyness. i am not sure if its the chemo re forgetting things, or just all the extra things to do that being on chemo has given me and trying to fit in my other commitments. One thing I have found this cycle, is that im much less tolerant, I think Eribulin is affecting my mood.... Time will tell.
Ladies, thank you all so much..... Helen, Babsy, FF and Julie D, for your helpful responses to my query.
to be honest, im likely to have one put in...a picc is not really going to be suitable because I use that arm vigorously in excercise, also I want to go back to swimming when. I can. They cant take bp on that arm and its my only one too, and im a bit fed up with getting infections. S**ds law, ill get one with a port!
I have a PICC line and love it though it has to be flushed once a week but the community nurse comes and takes bloods too and she is lovely. Trouble is I never know when she is coming so have to plan to be in all day, but I just arrange visitors that day so it's fine :-)))
Gosh my memory for words is getting worse.. Assuming it's just the chemo brain after 4 months of paclitaxel - does everyone else get that? Can't remember the word I want and keep doing spoonerisms!! Eg I said to my friend yesterday "do you Cancy a Fucca?" Instead of Fancy a Cuppa! Can be quite funny sometimes ;-). Fortunately she's got a good sense of humour.. Sorry to be lower the tone!!
Also ultra clumsy too.. Must be the peripheral neuropathy ...
Hi everyone, getting a portecath was the best thing I did. My daughter, a nurse recommended it but my hospital hardly does any for cancer patients. It really did give me freedom. Unfortunately mine got a rare infection, as the skin around the scar tissue ripped as it got thin so I had to have it removed but I had finished chemo and blood transfusions so timing was ok. Funnily enough they can still manage to find one working artery in my arm which wasn't really there before. Perhaps my body had time to heal? Still getting blocks of pain but hate taking painkillers. I've got my bone scan on Monday (5) but don't get results until 19th!! After the brilliant results last time, 60%+ reduction of cancer in bones I am SO nervous about this time, especially 'cos all of the pains. Going on holiday inbetween scan and results so hopefully will make time go quicker!! All the best to all of you who are poorly, sending loads of hugs. Xxxx
Moijan, I have had my port since March 2006! Mine is in the right side of my upper chest! It does not show with most shirts. It was the best thing I I ever did! I've never had any problems with it! When you are on an oral chemo they like it to be flushed every 4 to 6 weeks. My oncologist said since mine works so great every 3 months when I come for my check-ups is fine. I watch all these people playing the hunt the vein game just because they don't want a port. I think it's fear of the unknown. My oncologist has had me speak to other patients about it. I've convinced quite a few over the years to go for it! They have all thanked me later. No one complained about getting it. FF
Helen, glad you got your cold cap well done for sticking to your guns, hope it works well for you. When I was on chemo with my primary I didn't bother, thought I was going through enough without adding a cold head, but we are all different and losing my hair whilst not what I would choose wasn't a huge issue for me.
Sharon, hope you are feeling much better now and good luck tomorrow. Make sure you let them know just how much this one affected you as they may be able to offer something to make the next one easier for you.
Moijan, I have a port, it's a power port so in theory can even be used for contrast scans (though in practice lots of hospitals don't/can't use them for scans). It makes life so much easier! I only have the 'good' arm for them to use and the veins are now pretty non existent and very hard to find one and gain access. The port means I don't have to go through all that horrible hunt the vein, they can take my bloods and give me my zometa through the port.Even on days when they can't access port first time or if it decides to be temperamental and not give blood, it's a far better experience than hunt the vein, I wouldn't/couldn't be without my port now.
Hi Sharon, sorry about the tiredness. Eribulin is famous for it! I was warned....and it hit me the day after during the first cycle. Am on 4 th now and feeling much less tired. Erib cuts down both white and red cell counts, can happen suddenly. And the lowest point is often around the 6th day after but sometimes before.
The white cells are our immune defence and the red ones carry the oxygen and some nutrients to our tissues.....hence the tiredness. I think the filgrastin have helped me because both counts are higher than they ever were before starting erib! They teach you how to pop it into your tummy and it doesnt hurt! You just need a reliable fridge to keep it in.
Hi Helen, hope the cold cap works for you! You need to have had it every time apparently for it to work.
huggy thoughts ...im in again for it tomorrow. Have either of you got a picc or port in?
Hi Jeannette, snap! My last scan took ages too,later found out they were teaching!
i had all sorts of thoughts in my head till I found out!
Hi Helen...When I had the cold cap with Eribulin, it had to be on from half an hour beforehand, during chemo and until an hour after the infusion finished.......my hospital werent happy to give the cc as they said research showed it didnt work...but as I was so stressed, they did let me have it.
when you go, remember to take your headband to protect the skin round the edge and your baby conditioner spray for them to damp down the hair before putting on the cap.....very good luck with it.
Hi Corey Glad you've managed to avoid some of your trips to Exeter but shouldn't someone have sorted that out for you? I went to Plymouth with my grandchildren for school shoes on Friday. They seem to train up a lot of students as shoe fitters to cope with the rush. Hope you're OK x
Hi all, well flipping eck that was noisy! Thought it would only be a 5 minute job but it took around 40! Oh well at least it's all over with now just need results.
Hope everyone is okay, hugs Janette xxxx
Sharon, glad to hear you are improving,,i'm sure it will continue.
Corey..glad to hear you good news on 'both fronts'.
Jeanette, good luck with Mir...as you say that's the easy bit, but we,'ll all be 'holding your hand'.
Love to all.x
Carolyn, commiserating with you for "loss" of grandson, but hope you enjoy your nice lunch! Not much compensation, I know, but the time until half term will go quite quickly.
Hello Corey, thats really good news! So much easier than travelling all that way otherwise! I do hope the se's are mild or non-existant.
Janette, good luck with MRI today, will be holding your hand. Have you had an MRI before? They are noisy! Hope the results come through quickly so you don't have too many anxious days. xx