I agree - we have to keep smiling and remember that all this rubbish we're having to go through will in the end get rid of the cancer. That's the goal and we mustn't loose sight of it. I try to focus on the good moments, even if they are very small and seemingly insignificant. I'm getting lost of reading done and getting back in touch with friends whom I haven't seem much of in recent years due to work/kids. I am really working very hard at staying positive, not just for myself but for my family. It is very important to me that my kids in particular see that there is a decent time to be had, even when we are faced with very difficult circumstances. I realise that not everyone can do this, but at the moment this seems to be working for me.
Tizwaz: careful with the prune juice - I went slightly overboard with that, as I was really desperate, and ended up with a lot of regular toilet trips! The other thing that really worked for me was a visit to my lovely cranial osteopath, who was able to increase the bloodflow to my stomach and liver and really helped to settle things there. This is a completely painless and gentle treatment that I have used for years to combat all sorts of minor ailments, including ear infections, stiff neck (my speciality), bronchitis etc. It doesn't work for everyone, but for me it's amazing. If anyone is in SouthEast London and wants to give this a go, I'm happy to pass on details.
So far my hair is behaving itself - Im cold capping - and has not shown any serious signs of thinning. Who knows how long this will last. I'm starting on EC in December and even if my current cycle of Carboplatin and Paclitaxel doesn't cause any serious damage, the EC may still cause hairloss. Is anyone on EC at the moment? Another patient at the hospital yesterday scared me a bit by saying it's horrendous!?
Pat 73 I'm just a few days behind you with the hair loss, my scalp is sore and I'm finding hairs all over! I really want to be brave enough to just go out bald but not sure if I'll be able to, can't bear hats at the best of times so scarves and wigs are going to drive me nuts!
Jacqs i hope you're getting better, sending hugs xxx
I've been taking senna regularly but I think I'll try the prune juice instead!
Keep smiling everyone, we'll get through xxx
Aly, i was given Emend which worked beautifully . No sickness and minimal nausea which the Metaclopramide soon shifted. The Emend is expensive but be assertive, you're worth it. X
Bottles of hand gel all over the house for everyone to use. Yes,separate towels for you during chemo. Sorry, no kissing if in full snotty mode. Ask if you can take an immune medication from a well known chemist.Thieves oil ( beggars oil) from a large on line company. Check with Onco for use of Echinacea? Keep your thermometer handy as your temp can zoom upwards in a matter of hours. My hubby moved into the spare bed for months, and I elected not to see my grandchildren if there was the slightest sign of a snail trail or sniffle. Hard with kids, though, as they always want to cuddle . Someone with kids will be along to give more suggestions. Good luck with treatment. X
Pat73, I fully agree with KTK, you do see a pattern as you go through FEC and know what to expect and what you need to take. but you do get back to normality after a weekish and then can enjoy some normal time. And totally agree with KTK, the hair thing is really difficult and emotional but once you have dealt with it, you feel in control and watching it go was so hard for me, I braved the shave when it became just too hard to sit with it falling out... sending big hugs... and oh by my first T cycle my hair was starting to sprout, now have some fluffy hair all over, like a very short skinhead!!
Just wanted to say hi..Had my first chemo today..I’ve got grade 2 IDC with lymph node involvement-ultrasound & biopsy showed 1 but I’m still not sure how they can be certain more LN’s aren’t involved-I’ve stopped asking for fear of sounding like a broken record 🤣 I’m having chemo first up, 1st one today was ok- been feeling mildly nauseous. I’m going to crank up the anti sickness meds from tomorrow to pre-empt potential nausea. I’ve a 4 year old with a cold so wondering how this is going to work over the next few days/weeks..
Any advice/tips words of wisdom much appreciated!
Hi. Sorry it took so long for me last reply but it was a tough & exhausting weekend.
I’ve got 4 chemo sessions left. There’s a possibility of a delay on the next one ( due a week on Thursday ). I’ve one more Fec, then onto the t part.
Pulapula - I was told that if you’re going to have flu jab it needs to be before you start your treatment. It’s always worth checking though. And yes, i’m getting paranoid about infection.
In between my Chemo sessions i’ve been taking vitamin c & zinc tablets along with few herbal things - although maybe i’m not best advert cause i’m The one in here ☹️
Take care all. Love jacqs xx
Jacqs, I'm so relieved to hear from you. I was getting worried. I'm glad they've worked out what was wrong and are treating you.
I'm doing ok. I just feel like what should be a simple chore is really hard work! Even getting the energy to go and drive and get my son today was hard.
Is everyone else obsessive about infection risks? My 3 kids all have colds at the moment. They use the hand foam when they get back from school and I tell them not to cough on me (!) but I don't want to isolate myself from them...I just keep checking my temperature
Also are we meant to have flu jabs or not? Noone has mentioned it...
Hi Pulapula & A Little Pixie,
apologies for the delayed reply. It was indeed time for hospital. I was admitted on Saturday evening & what they initially thought was neutropenic sepsis actually turned out to be blood clots on the lung & pleurisy. They’ve been treating me with antibiotic drips, blood thinning injections & lots painkillers. I do feel a lot brighter today. On a more positive note, they don’t think the infection in my central line is anything to worry about but will know for certain on Friday when latest blood culture tests come back. I’ll be staying with the lovely NHS till the end of the week, then will be reviewed. thanks for your messages & hope you’re all doing ok too xx
Jacs, How are you doing today? Sounds like you are having a really time with it all. Sounds serious so hospital is the best place for you to be.
Hi Pulapula. I’m also on Fec. After each session I have had 3 days of steroids which do seem to help alleviate a lot of symptoms. I’ve then had 5 days of the injections. I’m not sure why hospitals differ so much but I would definitely ask them about this as I understood both were important for recovery from each session.
i’ve got a central line instead of a picc & had same issue with district nurses. I now go to hospital once week to get it flushed & dressings changed.
Had my 2nd Fec 10 days ago & have just been admitted to hospital with pleurisy & potential neutropenia sepsis. So gutted cause it all seemed to be going so well.
hope you manage to get something sorted. Jacqs xx
Thanks K. Good luck to you too for your last chemo. I’ll have one more Fec then 3 T. Fortunately I won’t have to have radiotherapy. Am just hoping this pleurisy won’t delay next chemomsession - fingers crossed x
Hello ladies. I have been following your progress but have not yet regularly contributed, but would love to join in. I started my chemo right at the end of August & had my 2nd round of Fec 9 days ago. Have got to say that since my diagnosis in May - triple negative grade 3 tumour, it’s been a hard slog. I had a double mastectomy & reconstruction at end June, followed by 2 infections & lost one of implants as a result. I’ve had to have a central line fitted which has not been problem free. Yesterday was diagnosed with pleurisy so back on lots antibiotics & strict rest. On Monday I am going in for a scan to check that I don’t have a blood clot on my lungs. I’m wondering when the bad luck is going to end!
I’m usually awake at all hours so will keep checking in to see how you are all doing xx
ElliesMum - regarding work. I know everyone is different and some have suffered more than others. I'm very lucky in that I work from home all the time (and only part time so just mornings and all day Fridays) but I have found when having FEC I took off days 1, 2 and 3 (Monday - Wednesday) and then was back at work on day 4 onwards for the rest of the cycle. On T I have the initial chemo day off (Monday) and then go back to work every day afterwards. My chemos are always on Mondays so with T I found the worst side effects are on teh Saturday - Sunday (days 6-7) and doesn't affect work. As I said I work from home all the time so don't have to consider travelling or avoiding anyone with illnesses so its easier for me. I do find working gives me normality though and I can just (try) to forget whats happening. I think if I had to go out to work I would have found it harder because it doesn't matter what I look like, I can work in PJs if I need and go bald at home. I would say if you can work you might find it helps but you have to wing it a bit with the first chemo and see how you feel... don't push yourself too hard, if you need time off then have it. Some ladies find it better not to have to worry about working but I guess it depends what kind of job you have. You may not be able to be in your place of work during days 7-14 when your white bloods are low in case of infection. My job can be very quiet so I can lay on the sofa and wait for the phone to ring.
P.S> you can never have "too many" scarves!!
Looks like you have had lots of tips so far. I am from June Chemos and have had 3 x FEC and 2 x T so far. Make sure you drink lots the day before chemo, its helps to get the veins nice and plump and easier to use. I kept a stash of ginger biscuits, mints and sweets with me and beside the bed incase of nausea. Keep a bottle of water with you at all times and drink lots especially the couple of days after chemo. It helps to flush it all through. Eat what you like when you like, little and often helps with nausea. Take all the meds they give you, and don't be afraid to call the hotline if you have any worries, they are great and answer anything! Do you have a good thermometre (ear one is good), you need to keep an eye on your temperature. First cycle I was paranoid and kept taking it every hour but you get used to that and by 2 or 3rd you don't need to take it so often but do keep an eye. If you take paracetomal for headaches or aches and pains remember to take your temp before hand as it can lower your temperature. I think you said you are having FEC? One part of the FEC is red and as soon as its finished your wee will be bright red.. don't panic thats normal and it soon fades!
On the day, as the others have said, comfy clothing, a friend to chat to, a book to read, nibbles and drinks. For FEC the nurse will sit with you and feed the chemo into your cannula so you'll have her to chat to as well. The thought is definately worse than the deed, I cried throughout my first one but it was over within about hour and half and I was off home. The side effects (mostly a bit of nausea... like morning sickness I found) lasted a few days and then I bounced back. You get more tired as things go on, but rest up when you need and most importantly of all... keep coming on here, we are all going through it and will help in any way and its nice when you have things to pass on to others too.
Oh and I keep a diary, I write down everyday when I have taken pills (theres usually a lot to remember) and also any side effects, you will get to see a pattern as each month usually follows the same pattern.
Hair - sorry to mention it, not sure if you are cold capping? I didn't and my hair started to come out by day 12 of first FEC, I then had to have it shaved on day 15 as falling out really quickly. Others have hung on a bit later than that. I had my hair cut short beforehand as my hair was quite long. Its distressing, I won't lie, but you soon get used to it, there are lots of lovely hats/scarfs and very cheap on ebay/Amazon. I also have a lovely wig, the NHS should provide you with a voucher to help with payment, I had to pay the first £70. Ask if they haven't already told you about it, as its good to have one ready if you choose that route. If you go onto June Chemo starters there are lots of photos of us rocking our baldies! Its very liberating and by First cycle of T my hair was starting to grow back, I have about 1cm now!
Oh and book onto a Looking Good Feeling Better course if you can, lovely morning where they show you how to apply makeup, draw on eyebrows etc and you get loads of freebies - about £250 of makeup! Well worth it and a nice pamper when you need it!
i am on day 12 after 1st fec chemo.
i went wearing comfort able clothes, layers as temperature will vary especially if you are going with the cold cap. (I couldn’t tolerate the cold cap but so far no sign of hair loss).
i took water to drink as I am not a tea/coffee drinker, they did bring drinks around but you could wait a long time if staff are v busy so yes take a flask.
something to read, crossword whatever you enjoy. Take sweets and snacks, I didn’t,t but others kept me well supplied.
i was only there a couple of hours, less time needed without the cold cap.
they will probably give you tablets to take there and a host of them to take at home over the next few days. Main aim to stop nausea and sickness, and to build you back up again. They will give you a thermometer.
I had a district nurse call to me the following day with an injection to help boost immunity. Others on the forum have been given injections to do themselves.
to be honest it has not been as bad as I anticipated but there will be a cumulative effect as I have more sessions. Side effects for me, not sleeping the first night, hunger both apparently due to steroids. My anti sickness meds worked a treat. Felt I’ll, flushed but my temp didn’t go up to cause concern. I was reluctant to drive as I just didn’t feel right. Sid effects progressed to sore mouth, they may give you a mouthwash to use and your dentist can prescribe toothpaste. Aches and pains which caused walking problems but only lasted 24 hours. Biggest side effect for me was tiredness.
will be thinking of you.xx
I'm on week 2 of chemo (Carboplatin & Paclitaxel). Here is what I've done for the past couple of weeks to prepare:
1. drink pently of fluids every day (at least 2 litres, more if you can manage).
2. I take the following in to hospital: water, a hot drink in a thermos (I take Lemon & Ginger to help with any nausea), lots of snacks (I seem to get very hungry and was told by by BCN it's actually good to snack through the chemo to combat nausea), some light reading, headphones, extra socks in case of cold feet, a thick cardi, hairband & conditioner for cold cap - basically, I prepare for an expeidition, but it's worth it as I can relax once I'm there.
3. Continue to drink loads after chemo
4. Beware of constipation - mine crept up on me and I had awful stomach cramps for seeral days in week 1. None of the pills I was given helped, but prune juice did! So I now have a glass a day and that seems to be doing the trick, but everyone seems to find their own remedy for this.
5. Finally, relax - I know that many of us here struggle with some awful side effects, but maybe I've been lucky or it's just early days, but I found the waiting for chemo far worse than the treatment itself. Everyone on my ward is very calm and professional, and the other patients are very supportive, particularly of "newcomers". It's obviously not exactly a fun day out, but it's what is going to get rid of this bl...y cancer, so I try to stay positive.
I hope this helps a little. I'm sure others will have many more tips and it's worth looking through the threads for other months as well.
Thats good MamaTony, like you say its weird how your priorites change. I went from total shock at being diagnosed to being glad it was only in 1 breast to happy that only 3 nodes had cancer!
Hope you got a good nights rest.