Hi ladies! Hope you don’t mind me dropping by? Like Shi, I’m an oct 2017 lady. I’m er+ with no node involvement, I had surgery followed by 6 rounds of fec, rads and I’m now on tamoxifen. I cold capped fairly successfully through my chemo and I also worked. So if you’ve got any questions just let me know.
I was also very anxious and found yoga and meditation very helpful. I tried to do it every day even if it was just for 10 mins. My other tip would also be to make sure to drink plenty of water day before chemo, day of chemo and day after.
This forum is brilliant for support and I would say that the oct 2017 ladies kept me sane, but to be honest I think the chemo all turned us as mad as a box of ? ? ? Good luck!
Hi all. Just to say it depends on your regime how long it will take. With my FEC it was delivered by a syringe pump via my Picc line. You have a saline infusion first, antiemetics, followed by the three different drugs ( if you have FEC the E is red and will make your pee red too!). Then another flush. All in all about two hours. The first session was longer as the Picc line was fitted, which was easy and painless and made for stress free delivery. You will be monitored all the way and there will be lots of people to chat to and distract you. As you go on you are likely to meet the same people each time so it becomes a bit of a club! Not so bad really. Kx
For my first pre-chemo assessment, I just got weighed and measured, reviewed general fitness, went through my questions with the oncologist, and had my breasts examined and my wounds checked (I was 1 week after bilateral sentinel lynph node biopsies). For subsequent appointments we run through everything but the wound check. I got my tour of the chemo unit and my chemo hotline info, including detailed discussion of side effects, during my first day of treatment. So it can vary from hospital to hospital.
I find the pre-chemo appointments most useful for asking questions – I keep a running list through each cycle to ask at my next appointment. Things like test results, ways to mitigate a side effect (if possible), previewing next steps/tests, when/if to see a dentist, etc. And I leave space to write down answers or otherwise I forget!
One other idea: for big meetings – treatment plan, chemo consent, etc. – I have asked to record audio on my phone, so that I can listen again if I miss anything and follow-up with as much info as possible. The consultants have all been happy for me to do this. It was a tip suggested to me by my mother-in-law, who had breast cancer a few years ago and said that even with both her and her husband taking notes, they missed things, especially stuff related to medical jargon. I try to ask for a pause and explanation for unfamiliar jargon, but it’s not always possible. And my OH isn’t a big note-taker, so the audio was super helpful.
So after a terrible nights sleep (I have so many weird dreams/nightmares at the moment) I have to say catching up and reading comments has really helped me already today
Meesh73 thank you for sharing the tip about the water and Aneeebel thank you for sharing what happens at the pre-assessment, I’m hoping I feel better after that!
I do Pilates so def going to keep it up, I’m even going to try and keep up the running when I can, although I except it won’t be as far or fast! ??
Hope you all have a lovely day
To add to Meesh’s hydration advice: I was counselled to aim for at least 2 litres of water. I’ve been doing that every day and more on the day before, day of, and day after chemo (plus herbal tea, decaf diluted coffee, occasional juice). And when I have fallen short, I have had more side effects.
Reddi, it was a short Dvd as opposed to a video… I wouldn’t say it was amazing but it was quite informative… Just a brief insight into who to contact if you had to call someone in an emergency, and info with regards to counselling etc ?
So, I start chemo on 26 October - I had the first meeting with the oncologist last week (TN IDC) :smileysad:. I’ll be on FEC-T, but I’m not sure yet whether it’s all FEC-T or some of FEC and then some of T. I guess I’ll have to ask that question on 25 October for the follow-up appointment, so thank you for mentioning this in your posts - I’m not sure when I’d have been aware of that.
I’m reading all your comments and trying to prepare myself for whatever comes, currently waiting for the wig lady to phone me back with an appointment, headscarves galore on order or have arrived, sea-sickness band has arrived, as has ear thermometer. PJs bought for emergency hospital stays (hopefully what won’t happen but it’s better to be prepared, isn’t it) :smileywink:. Being a super-organised person, I want to create a chart with everything on it - sickness, nausea, temperature, appetite, blah blah blah. Do you ladies know what else I should look out for each day? I’m hoping that I’ll get into a rhythm and know what to expect each cycle.
I was offered the cold cap but declined. I also declined the PICC line but now, after reading some of your posts, I’m not sure that was a good thing to do. I do have good veins in my hand though. I guess I can change my mind after the first session?
I’ve got to have a clip fitted on Wednesday, and think I’m supposed to have an MRI scan but no date set for that yet.
I’m looking forward to actually getting on with treatment - we found Humphrey the lump on 31 August so it will be 2 months almost before treatment actually starts (all being well). It seems like a long time but it’s been interspersed with regular visits to the hospital for all sorts of scans and meetings.
Blood test is booked at my GPs for 24th, then the follow-up meeting (which I presume is the assessment meeting you all seem to be referring to) on 25th, and hopefully start chemo on 26th.
Good luck to everyone here - you all help me greatly and I hope I can be there for you all too :heart:
Hi Fiona and welcome!! You seem super well organised which will help you get your head around everything. The only thing I would perhaps think about is the Picc line. Even with good veins they can collapse with chemo and the Picc really does make everything easier. I wasn’t keen at first, but am so glad I had one and I have loved my Picc line covers. It doesn’t hurt and is easy to manage!
Have a look at what your cancer support centre offers too. Book yourself onto a Look Goid Feel Better course. These are very popular so need advance booking. Perhaps best when your brows have gone. Hair goes after a couple of weeks without cold cap but brows and lashes didn’t go until the T cycles.
I’m doing well thanks, Aneeebel! Wound check went well this morning. After 2 weeks of delays, I finally have the green light to start chemo on Friday. Who would have thought I’d be really pleased to get started! ?
Best of luck to all others starting this week. We’ve got this ???
Can I interest any of you in a game to help us combat chemo brain??? It’s on this forum in the coffee lounge /chat and games section and is called word association again. It’s a little bit of light relief!
Fiona, the Picc line is a thin line that goes in from your upper inner arm to your vena cava, so the drugs then go into a major blood vessel. At the arm end it is held very securely in place with a clip stuck to your skin. It has a waterproof cover which is changed weekly when the line is flushed. You do not feel it and wouldn’t know it was there. You can cover it with a pretty cover, but in the winter your sleeve will cover it anyway. To keep it dry in the shower they give you a Limbo, but some people just use cling film. Hope that helps. Kxx
Fi ??pair of Oct 17 gold hot pants coming your way, Hoike em up, clip onto that bunting chord and keep hold of each other on this journey, you are all amazing and ???and beautiful. We are all here ??? and will help all we can. Remember on chemo to keep yourself safe and phone that rapid response number as many times as you want, your units want to keep you safe too. Look out for pee burning but no temp, that’ll be a uti and will need hospital visit. Painting nails with black polish has saved a lot of nails as has rubbing vitamin e oil into the base of the nail, get baby bum wipes they will sooth botties and also anosol cream, sudacream and laxatives for when fec bungs you up. Ice lollies to suck while they inject the red on on fec will preserve mouth. Get to dentists before you start too, they will fit you in when you tell them you are starting chemo, oral hygiene is essential. If you do end up with thrush mouth get fluconzole don’t let them fob you off with drops. Also go in with a list of meds you want each cycle after the first one. I. E. Fluconzole, difflam mouth wash to ensure you are armed and ready A lot of us kept diary in a graph chart for each cycle I.e. week1, week2, week3 each cycle and found it helped as we could refer back. Right then ???Tune on the chemo jukebox symphony by Zara Larson keep ???keep ???and when the ???Chemo gets you all ???be ???together ???Shi xx
A quick question - my GP’s surgery is offering a flu jab drop in clinic this Saturday - should I take this offer up? My chemo doesn’t start until 26th October. It’s not something I’d ever thought of before but the surgery have included me in their round robin announcement!
They do advise you have a flu jab. Just check the dates. I think your timescale is ok but your BCN or chemo helpline will give you a definitive answer. Probably best to get it done now if you can. Kx
Hi ladies.
How are you all?
Fiona check with your oncologist. I was told not to get the flu jab if too close to starting chemo. Though remember your partner’s can have it. If they tell their gp that they are living with someone going through chemo and therefore at risk they should get it for free. My husband did last year. You’ll just have to put up with them moaning about how much their arm hurts for a few days after ?
WhyteFawn x
Thanks WhyteFawn. I asked the CNN but she didn’t sound confident so I’ll speak to the chemo helpline number and see what they day. Interesting thought about getting my husband to have it though, with the pressures of work he’s currently experiencing and my stress on top, he’s more liable to catch anything that’s going round work and it knocks him for 6.
? Fiona xx
That’s good news about partners being able to have the flu jab I wasn’t aware of that
Has anyone had a port fitted instead of of picc line? I had my pre-assessment yesterday and they were pushing for this instead of a picc line but I’m not going to lie it freaked me out a bit!!
Also I’ve been in complete denial about losing my hair! I’m trying the cold cap but I’m not sure how I’ll find it. Those that have wigs and scarves where did you start? I’m going to try some wig shops next week if I’m up to it but wanted to order some scarves or headwear soon really.
Hi Sarah, I’ve already started accumulating scarves and have some sleep caps on order too (Good old Amazon). I’m trying to get hold of the wig lady who comes to hospital once a week but she’s proving difficult to pin down. I decided against the cold cap, I just thought it’s a good opportunity for me to be more natural when my hair grows back. I’ve seen reports that the cold cap isn’t always successful and hair can still thin even if it doesn’t all disappear so I thought just accept that I’m going to lose it all, get some nice headwear and then wait for the new style to emerge ? Whether I’ll feel the same when I see the first bit of hair to come out will be a completely different story but I have a box full of tissues at the ready ? When do you start your chemo? Good luck and take care ? Fiona xx
Hi there fimillan I had my clip last week and mri Monday started chemo yesterday , like you I hate the post coming now it was bad enough when it was the bills now all it seems to be is hospital visits,
Lou ?
