Hi everyone,
Thank you so much to everyone who replied to my original post when I had just been diagnosed. The last few weeks have included more scans and lots of waiting. I've had one MRI scan saying no lymph node involvment, and a second opinion that said that I had 1 groin lymph node that would need to be included in treatment. The PET CT confirmed no other spread of disease so that was great news.
My diagnosis I'm told is good and I have just received my appointment to have my CT planning scan on Tuesday. Then I'll get the dates for my chemoradiotherapy, as you all said, that will be 5.5 weeks (2 rounds of chemo).
The oncologist also said I would have a PICC line and sent home with my chemotherapy in a pump for the first 4 days of my radiotherapy and then again during week 4.
Does anyone have any advice on the PICC line? What's it like? Does it stop you doing anything? Can I wear my normal clothes?
To be honest hearing about this PICC was a pretty big shock I wasn't prepared for and I'm scared. Any words of reassurance/advice would be greatly appreciated.
Hi Georgie6775 . Not from this group but had a PICC line for a couple of months and a chemo pump for 2 separate weeks. The chemo helps the RT work better. Usually painless going in and most of the time it is taped up and doesn't cause a problem. Just try and do nothing too strenuous. When the pump is attached it is a bit awkward getting dressed as you have to pass it through sleeves as it can not be disconnected. You cannot get it wet. You can get waterproof covers for bathing but I made do with clingfilm. You generally wear it in a pouch on a belt. In bed I found it best to wear the pouch and have it on my tummy so didn't really disturb my sleep. The chemo is administered slowly over a long period so shouldn't cause too much problems. It has to be flushed out once a week by a nurse with a fresh dressing. I had a district nurse calling to do it to save going to hospital. Overall, no problems with it. hope i haven't overloaded you with info. I hope all goes well. Best wishes.
Hi Georgie,
I agree with Rily's comments, I didn't find the PICC line a problem. It doesn't hurt when they're putting it in, and the chemo unit supplied me with a handmade "pouch" like a crossover handbag to carry the bottle around in. It wasn't noisy at all, and although it was a pain showering with cling film over the line, and the bottle out of the shower, it was manageable. I didn't find it a problem sleeping with it either.
Good luck with it all, not a fun period but you'll come out the other side.
Kate
Hi Georgie6775
Sorry I can't offer any help on a PICC line. Hospitals have different protocols regarding how chemo is delivered and I had daily tablets. The end result I believe is exactly the same and my biggest fear was swallowing the tablets which were bigger than any of my daily supplements - it must have been mind over matter and I managed! I am pleased you have had some answers and I am sure more will respond.
Irene x
Hi Georgie,
The PICC line was super easy for me and made the whole chemo-in-a-bag thing much easier. While I was getting the chemo I had to keep the PICC site dry, so had to use the handheld for everything above the waist. Pretty minor discomfort. It's been out for almost two years now. I have a small scar that itches occasionally.
I really didn't want oral chemotherapy and appreciated not having to sit in a chair for the infusion.
Getting out was even easier than putting it in. A couple of numbing needles and boop, right there in the doctor's office, wide awake.
The PICC line didn't interfere with any of my clothing. When I was hooked up I carried the bag o' poison spirits in a fanny pack.
Suz
The PICC line was the best thing ever. I hate needles and finding veins can be challenging. Bloods were taken weekly to check blood counts were all OK and no blood transfusions required. Whilst the PICC line was in for around 40 days. insertion and removal were painless. Buy a limbo neoprene sleeve to help with showering. It proved a God send.
The chemo can which you are likely to have on weeks 1 & 5, Mon-Fri is challenging simply from the logistics of sleeping with it by your side and showering ( I slipped into a food bag with a double seal so I could still shower) and had it hanging around my neck for ease. The dressing is replaced weekly and flushed with saline and the can replaced mid week as it only lasts 48hrs. All straight forward and painless!
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