I was told not to get a flu jab during chemotherapy -- okay before or after. But as @ktk says, check with your BCN or chemo helpline to see if the time between flu jab and start of chemo is long enough.
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!
Any advice will be gladly received.
Thanks K, yes that does help and is definitely worth thinking about. I'll speak to the oncologist on 25th 😉
💜 Fiona xx
Reddi, I just decided that I need to accept and deal with the situation, and to try and make it more "fun", so Humphrey it became. It's going to be tough, I know that, and I've had plenty of tears and so has my husband. But I can't change it, so I have to deal with it. And the best medicine is laughter, isn't it? (Well, I suppose chemo, surgery and rads might be the best medicine in this instance actually but it won't taste as good as laughter!)
I've just gone and started packing my emergency bag, and I don't start chemo for ages 😉 I want to be prepared though for any eventuality, so I've packed 3 pairs of knickers in there too! 😜
💜 Fiona xx
@FiMillan Totally surreal!
And I like that you named your lump Humphrey. I should have named my "good" lump. (The good lump's the one that got me referred to the breast clinic; the stealthy stuff in the other breast -- which nobody can feel -- was only found out because of it.) Now I've got a challenge to come up with a name before it comes out in a couple months.
Thanks ktk, every bit of advice is welcome.
Thats interesting about the Picc line, as the hospital really were pushing it. I'll see how I get on with the first cycle though. They've said I can change my mind at any time. How do you keep it dry in the shower? Does it stick out much? I'm sure there are so many questions I could ask but I just don't know what they are at this moment🤔
And I'll have a look at the Look Good Feel Better course too. Still waiting for the wig lady to call me back, guess I'll have to chase her up tomorrow. She only does 1 day a week at my hospital.
💜 Fiona xx
Reddi, please don't apologise for going on. Every bit of advice you all give helps us new members to this club. In fact you made me laugh, and laughs are in short supply most of the time these days. I haven't done the Why me?" question because it's not worth asking, there is no answer (unless when I'm tested to see if it's genetic) but it still all seems a bit surreal I think, as if it can't be happening to me. However, it is so I'm just going to get on and fight it.
Joining this forum has helped me tremendously, you're all inspirational having gone through so much yourselves. You all give me hope.
Yep, I'll definitely check with the oncologist on 25th as to how many FECs and Ts I'll have.
Thanks for all the words of advice, need to go and make more lists now 😉 LOL!
💜 Fiona xx
Seconding what @ktk said about Look Good, Feel Better -- the workshops are terrific and you get an amazing bag of goodies if you are able to go in person. Also check out Ellie's Friends to sign up for lotteries for freebies. I won a free oncology massage -- nice to have a little treat along the way.
@Aneeebel Short DVD sounds more like what I'd expect!
@FiMillan June 2018 starter here. As far as I know, they never give T (docetaxel or paclitaxel) at the same time as FEC. Typically, you get FEC for a number of cycles, then switch to T; there are quite a few people on the June 2018 chemo starters thread who are getting 3 FEC + 3 T; I'm getting 3 FEC + 4 T (and with the T, I'm getting HER2-targeted drugs, because one of my tumors tested HER2+).
In your pre-chemo cycle meeting (the "assessment" meeting), do ask the oncologist to clarify your treatment regime. They'll definitely know what they're planning.
My chemo day unit gave me a treatment diary in which I log both side-effects and ancillary drugs: steroids, anti-nausea drugs, injections to provoke production of neutrophils (the bacteria-fighting white blood cells that tend to plummet during days 7-14).
The diary suggests looking out for: constipation, diarrhea, fatigue, sore hands and feet (more an issue with T), nausea, vomiting, pain, sore mouth, temperature, and skin rash. Severity of side effects also matters.
Keeping track is important because at subsequent pre-chemo meetings you'll want to summarize your side effects for the oncologists, so that they can use the information to help decide whether to maintain your dose or lower it.
I also keep a personal diary just for me with more info on fatigue, mood, and my "observations" -- my little twist on Bridget Jones. I started taking my temp morning and night just to have a sense for what's normal for me -- I tend to be 36.0-36.4C, rather than 37.0C -- in addition to any time I'm feeling poorly. I log how much water I'm drinking. I also keep track of how food is moving through my system. (Gah, euphemisms for this topic are tough.) That was particularly helpful when I got severe diarrhea, as knowing how often was the difference between staying at home and being asked to go to the A&E.
I make notes of my mood in my personal journal because when you stop the steroids, it can hit you emotionally -- something I learned from reading posts by the June 2018 chemo starters who had begun treatment before me. Knowing that this might happen really, really helped me.
Some of the June women noticed a rhythm to when they got mouth sores, though I haven't had that side effect myself. (At the suggestion of my breast cancer nurse, I've been using a very soft toothbrush -- I boil it every week to sterilize it, but you can also buy fresh ones -- and swishing my mouth with water and brushing my teeth with children's Sensodyne toothpaste after every meal/snack; then either using Corsodyl or rinsing with bicarbonate of soda dissolved in warm water. It seems to have worked for me.) On FEC, hair seems to start to go around days 10-14 -- everybody seemed to have about this timing; in my experience, this shedding rhythm repeated each cycle, even though I had less hair with each round. (I ended up doing a DIY pixie cut and then letting it fall out rather than shaving.)
I'm on cycle 5 of my total 7 and I don't have a PICC line -- my veins have held up okay. However, I've got bilateral breast cancer, so they've taken lymph nodes from both sides, and I thus switch hands for each chemo cycle, which might be why I've not had a problem. They can always fit a PICC later, even quite late in chemotherapy. Drinking water the day before and day of chemo will also help make your veins nice and plump for the nurses.
And on emergency hospital stays: I keep a half-packed grab bag in case I need to go to the A&E. I've twice had to be admitted to hospital from the A&E -- once for a fever while neutropenic (very low neutrophils, but no ID of a specific infection), once for the diarrhea (ended up being an infection). Because of why I was admitted, I was given an isolation room both times. My grab bag has: ear plugs, earphones, moisturizer, wash cream (they have really drying gel in the hospital; my nurse recommended E45 emollient wash cream as chemo dries out your skin), lip balm, anti-bacterial hand sanitizer, tooth-cleaning stuff, sleep cap, non-slip socks, cardigan/scarf, extra phone battery, book(s), knitting. Never dawned on me to pack PJs! You're ahead of the game.
Sorry to go on for so long, but hope it has been somewhat helpful.
So, I start chemo on 26 October - I had the first meeting with the oncologist last week (TN IDC) . 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) . 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
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 💗
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.
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!
Oh Aneebel, thanks so much for that.
That does help take the fear away a bit....💕
How come you were there from 8 - 5 ?
Does it take that long every time...
I had my first chemo treatment yesterday (Fri)... I was in a bit of a tiz as we probably all are..never having been through this before, but it all went smoothly!
Like the other ladies say... The first treatment is done very slowly, then you have a break to check for side effects... Then the next bag is attached... Have another break to check for side effects... And so on...
There is a nurse there all the time or there is a buzzer if you need help...
I was was there from 8 until 5 so it was a long day but for all the right reasons!
I did have a massive headache which was probably to do with the 'not knowing' and totally shattered by the time I got home... But today I'm relatively okay today on the whole!
Hope this helps you a little bit xx 💗💗
Thank you for your reassuring message regarding the chemo treatment, it does help to hear that the nurses will give it me slowly & keep a eye on me.
I really do hope the fear will subside after the first one.
And Yes, I'm having the medicine to kill off any random cells & Yes, that is good, it's VERY GOOD.
Thank you so much....💕
Anxious-Soul - thank you for message.
Definitely need distractions as watching Atypical did help.
Need some suggestions for more series if anyone has any.
Don't feel up for doing much else at moment as still feel bit sore & weak.
Thanks for helping me A-S I was in a bad place.....💕
P.S. - I watched every episode by the way !!
Good morning MoDo,
I am just dropping by to see how you're doing.
It sounds like binge watching atypical is working for you. Other distraction techniques will work for you, you have just got to figure out what activities will help and this may be trial and error.
I have lost count of the number of films I have watched and the number of drama series. The CBT counsellor gave me a worksheet and one of the questions was ' where is the evidence?' I found asking myself this useful. We are different so this may not work for you.
Wishing you some calmer days ahead.
Thank you for message, really appreciate it.
It helps me to hear I'm not on my own, I've been torturing myself.
I will look up the book you recommended it sounds just right for me. I have some book tokens & will see if they have it in Waterstones, thank you for that.
I certainly over think things so this is magnified 100 fold, I have been trying to combat my anxiety - I watched several episodes of Atypical last night & I did calm down some.
Like you the anxiety has made me feel all sorts ( worse case scenarios ) which almost tip me over the edge.
Thanks for taking the time to help me Reddi, everyone is so kind & helpful on here.
This group has kept me sane, I've had so much support from day one.
I can't thank you all enough 💕
Hi everyone, I hope you don’t mind me jumping on the thread, I found out yesterday I’m due to start Chemo Thursday, we only found out a few days ago I would need chemo and I think I was in complete denial it would happen.
To say I’m terrified would be an understatement, I have so many questions that I’m not actually sure what they are anymore 😳 but it has been really helpful reading others experiences, I’m not sure what I would have done otherwise! I think my biggest fear is the whole loosing my hair, where do you even start with wigs and scarfs? Has any bought them already do you wait?
I have spoke to Maggie's today & they have specialist nurses & a clinical psychologist there each day, it's a drop in centre so I'm going to go there.
I have calmed down some but still extremely anxious.
Glad you have no sign of infection, I'll be one/two weeks behind you as my first chemo will be 24th.....😮 xxx
You're welcome MoDo.
Remember to tell the NHS staff you're highly anxious and they will response with compassion and understanding.
This is doable. You can do this.