I also didn’t get all the details on my disease until asking for a copy of the pathology report, and people (nurses/consultants etc) keep getting things wrong! Having a read of that is a must.
I’ve got some of those left over from when I had Norovirus in the spring. Will try them! Thank you
Wee reccommendation for you all – easy tie turbans from this Paris shop. Not that expensive, they deliver quickly to the UK. I got a turban and some earrrings delivered this week, the quality is very good. I will now be imagining myself one of their models in a Paris cafe while I doddle about Glasgow with no hair https://indiradeparis.com
@arty1
My first paclitaxol was okay. In fact the antihistamine and steroids gave me the best nights sleep Ive had in months! Just been out walking the dog with slightly lowered energy but that could be me in a normal week!! Paclitaxol is weekly now so we’ll see! Wishing you well for Friday x
Yeah- I’m just eating rubbish! I’d have thought having cancer would’ve made me look at my diet but the stress has been stronger!
Hope you have a great weekend xo
I find it tricky to navigate too I’ll have to make the effort to get fluids into me, I find drinking water so difficult x
Wow- it’s not like it’s a small insignificant thing!! I’ll ask for my info x
Oh my goodness the mammogram biopsy is sooo the devils work! My breast is still black/blue/yellow ten days later plus a huge lump! Couldn’t bear to have to have another one!!
I responded to one of your posts in August and was wondering how you were getting on. I see you’re in South Wales, same as me. I’m nearer the English border and had my treatment at Velindre and Royal Gwent/Ystrad Mynach.
I also had 12 weekly Paclitaxel and Herceptin, so if you have any questions I’m here for you. I noticed you are HER2+ and there is a group of us on here that you might want to join the thread, and anyone else that’s HER2+, as our treatment last longer than chemo alone. Here’s a link
@arty1 is in our group. Hello!
you will all continue to be captured too post treatment for Covid and flu jabs too as currently happens Shi xx
You are eligible for a Covid jab, I started chemo last September and had my Covid jab 2 days before my infusion in my 2nd week of weekly Paclitaxel. I’ve also had the Spring booster and the most recent Autumn vaccine as I’d only just finished Herceptin. You are eligible under the immune suppressed section, chemo, radiotheraphy etc. I was told by the oncologist at Velindre that I should get the Covid and flu (had for years being asthmatic). It is usually available into December so if you want it go back to your GP as it’s their responsibility to mark your records correctly for eligibility.
For anyone coldcapping. Here’s some handy links
www.coldcapping.com Paxman’s own website to ensure correct wearing for best possible outcome.
www.cancerhaircare.co.uk is a charity run by Jasmin who worked for Trevor Sorbie, they offer help with hair, eyebrows and lashes.
I think Little Lifts has already been mentioned and there is also Cancer Care Parcel who send you a bags of goodies.
Be thinking of you all. You can do this
Hello Everyone
I just wanted to post a message to you all, wishing you luck as you start chemo. You are all stronger than you know and will be ringing that bell soon enough.
It’ll be 4 years ago exactly this week since I started my chemo and I remember joining the November 2020 chemo starters thread wondering what the hell was going to happen. Everything was a big fat question mark and extremely daunting. This forum is so helpful and so reassuring, knowing there are other people in the same boat.
One thing I often searched incessantly for before I started chemo were success stories and to feel some hope and reassurance that things would one day be ok again. So, I wanted to come on here quickly and say hello and that it’s now 4 years down the line for me - I’m still here and life is dare I say it, all rather “normal” again (whatever that is).
I was diagosed with triple negative BC in Oct 2020 and later learned I was BRCA 1. I decided to cold cap and had EC for 2 months followed by carboplatin/paclitaxel for 3 months. I personally found EC side effects much worse than carboplatin/pac so would say mid Nov-late Dec was definitely the hardest bit with Jan-Apr chemo much more manageable and energy much much better. 3-4 weeks after finishing chemo I had a double mastectomy with immediate reconstruction (expander implants first, then replaced with gel). I didn’t need rads as no tissue left to blast.
I never really understood the typical timeline of cancer treatment so to give anyone else wondering an idea, I started my chemo mid November, finished chemo first week in April, had a double mastectomy early May and was told there was no evidence of disease around mid May. As I write all this, it sounds so very straight forward and simple which of course it wasn’t.
I know you are all facing a very tough, uncertain 6 months right now but all I recommend is, just take each week as it comes and do call upon anyone that is offering their help, support. Accept the help! Us women are terribly guilty of powering on and putting a brave face on without complaining especially when we don’t want to worry our family/friends. We can people please to our detriment. Be selfish & look after yourselves because you need to do everything you can to get through it. Accept that each day you may feel differently physically and mentally and that it’s normal to feel different emotions going into each chemo session and ahead of surgery. Come Christmas/New Year some of you will already be half way through chemo and be well on your way to ringing that bell. You will get there!
My advice is:
*Google is not your friend when researching your diagnosis and definitely do not do this late at night while the dreaded steroids are keeping you awake. Go watch an episode of Friends instead!
*Do not compare yourself to anyone else. You will be surrounded by fellow amazing, fabulous women and perhaps not come across one person that has exactly the same diagnosis or treatment plan as you. You are unique, your body is unique so just because one person did x/y/z, it doesn’t mean the same will apply to you.
*Gratitude and a positive attitude really will help see you through this very challenging period. Assume the chemo and surgeries will be successful and focus on the fact that come Spring when the daffodils are beginning to show, you will have overcome so much.
Have something in the diary next May/June to look forward to believing that by then you’ll hopefully have received very encouraging/positive news.
*The NHS nurses and doctors are truly wonderful, there is great support offered so use it, ask questions and seek advice. There is no such thing as a silly question.
Am aware I am waffling but really do want to wish you all so much love and luck. You are all incredible and stronger than you can imagine. You might not be able to/dare to believe it but brighter days are ahead, I promise you.
xxxx
Hello.
I think everyone’s experience of EC differs. I had my chemo 4 years ago in November but wanted to just give you an overview if it’s of any use.
I had my very first EC session at 2pm and made the mistake of eating dinner when home which made me feel a little queasy come 10pm. I felt flushed and a little spaced out plus the steroids had kicked in so remember laying awake till 4am wondering if I was going to be sick but never was. The next day I felt ok, a slight fogginess but the steroids gave me some energy. I never felt the need to be bed ridden and was happy to sit on the sofa with my two children. I think day three you have to be careful to not get constipated - if given laxatives perhaps do take as advised. I didn’t initially and it can cause serious stomach cramps. I learnt from my mistake!
Some other tips, I found asking for an early morning chemo session meant for a better sleep that night. I always requested a 9/10am session so come midnight I was actually able to sleep.
I discovered my initial queasiness/burning may have in fact been heartburn so for my 2nd chemo session I was given an extra anti sickness tablet and I chewed indigestion tablets after evening food and kept some by my bed for night time. I think you might be a little zombie like for the first week but if not feeling nauseous you may be ok with the two little ones. I personally found sessions 3 and 4 worse than 1 and 2 but everyone is different. 1 was not anywhere near as bad as I had feared and it meant I went to session 2 feeling so much calmer, feeling like it was doable.
Wishing you all the luck xx
Popping in from October to thank you for answering my concerns about my growling tum!!
Hope you November starters are going on ok. Im 4/16 treatments in on paclitaxel, to be followed by EC.
Thank you. That’s such a lovely and thoughtful post.
Hi I have just had my 2nd round of EC on Thursday. After my 1st round of EC on the 24th October I felt very fatigued for 5-6 days & had some heartburn which I have experienced the heartburn again from this 2nd cycle. I would advise you to get some help with the school runs if you can. I didn’t drive for 5 days either because I felt like I had a bit of brain fog & a little dizzy on & off. Everyone is different but if you can get some help I would take it. Hope your symptoms aren’t to bad for you I used the cold cap on my 1st session but by day 17 my hair had shed so bad that it wasn’t worth keeping so decided to brave the shave & then I didn’t bother cold capping for my 2nd cycle. I think that most people I have spoken to on EC haven’t had much luck with their hair even with cold capping. Keep us posted with how your treatment is going. I’m having 6 rounds in total 3EC followed by 3 Docetaxel 3 weeks apart x
I cold capped but my hair is shedding like mad today - this is day 16. B**ger!
Hello to everyone on this thread and thank you all for your lovely replies to my messages, your sensible advice and just for caring enough to post.
I’m probably posting this in the wrong place but I can’t work this platform at the best of times and I’m currently drowsy and drained after a night in hospital following severe D&V side effects, fainting, falling out of bed and cutting my lip.
When I’m home and feeling a bit more with it I will send you all proper replies and try to work out how to use the correct threads.
Hope you’re all doing better than me today xxx
Oh no. So sorry to hear that. I hope you feel better soon. xx
Sorry to hear you’re suffering