Hi all
For those on 3 weekly EC i found the 1st week the hardest & then the “veil” lifted i began to recover - the tiredness is a bugger though.
Also prevebtative steps before chemo helped with the constipation.
Notjing really helped with my migraines but i tried a bit of “hypo birthing” technics / imagining i was sonewherw else…
And I also am utterly fed up with heing told how brave ive been - the truth is ive had no bloody choice as my children are watching & i refuse to let them see chemo beat me!!
@bettyb24
The headaches I had on cycle 1 was the worst. I sat with a cold migraine cap on. But cycle 2 and 3 were ok. I took paracetamol but also used the 4head stick which really did help as you can use it as often as you want. Xx
Sorry I haven’t messaged in a while. A close friend died suddenly last week and sent me into a massive downward spin made worse by being post AC #3.
Catching up on everyone’s news. Those on paclitaxel keep going with the poly balm Jennifer flowers nail balm. My nails survived and thrived during the treatment. They’ve been OK on AC too. I read about dark nail varnish and did loads of research and couldn’t find a scientific justification for it so stayed clear just in case and kept them moisturising instead.
So sick of blood tests and worried about the results. I used to get my done on the chemo day and always had that horrid wait to see if good enough. Now I go the day before to take the stress away and shorten chemo day. Sorry @donna_51 you’ve had a temporary blip. I had four weeks off between my cycles and you make up time. Doesn’t feel like it right now when every day and week counts when the end is in sight. Your body knows best.
I’ve now have both AC/EC and paclitaxel. Round 16/16 (AC #4) this Thursday. It was tough watching the Amy Dowden documentary and cold cap. I think I have enough hair for the final round and have asked for stronger pain relief. I’ve also asked for better anti-sickness meds as it really made me nauseous on #15.
For me AC was far worse than paclitaxel. Hair loss on pax - 0%. On Ac about 75%. Fatigue, nausea, constipation (piles) oral thrush, crap stomach and general I don’t want to carry on with this anymore. It was biweekly instead of every three weeks as my oncologist has wanted. I’m OK today but can’t believe I have to go through it all again this week and next, to get to the end of the tunnel.
Pax was so much easier. I carried on walking, seeing friends (outside) and generally life was OK. I looked good and my hair was long and shiny.
Maybe AC at the end is harder because the body is full of chemo and those who have had EC and then pax find it hard because of they haven’t got over the AC. I’m not sure what is the best order in which to do it. As for cold capping whose who do it after AC and through pax are amazing because I can barely get through the last one.
Sorry for long post. Team June - we keep our heads high and March onwards to the end because we are bliddy amazing xxx
Hope everyone is doing as well as they can be. Sounds like lots of people have recently changed chemo etc and trying to find their feet with new side effects. All we can do is keep putting one foot in front of the other and moving in the right direction.
I had my first pax and Phesgo injection last Thursday and feel very achy. Just hoping it’s a normal side effect and hoping for the best. Feel about 100 years old today .
It does all totally suck. Sending you a big virtual hug, I’m so sorry that you’ve found yourself with treatment being delayed.
You’ve not jinxed yourself, but I can totally understand why you say that and I’d probably feel the same. When you think you’ve got a plan and something sh!t happens it makes all the negative feelings come to the front of your mind.
It’s ok to feel upset & miserable about this, let it all out, look after yourself, eat lots of cake and only when you’re ready put your positive (V-JJ biting) pants on and you’ll see the end in sight again.
We’re all here for you, that’s the great thing about this space-we all understand and will do our best to get you through this!
I hope you come out the other side of this asap, and that if you’re on a 3 week cycle you get some time feeling normal again. I’m sorry that you’re suffering so badly. Big hugs to you too
@ljlj I didn’t speak to them. Today is the day we have our 2 year old Granddaughter for the day and there was no-one there when I phoned. Then, having had a lovely trip out, I felt really unwell and retired to bed for a sleep - very unusual for me - and it was too late by the time I woke up I’ll phone them tomorrow
Hi all - my first post today, but just wanted to say thank you for your honest and enlightening posts - I’m having a particularly crappy day today and turned to the forum for some hope as I feel and look like Gollum!! Had my 4th (and last) EC last Weds and then start 12 weekly paclitaxol in two weeks time… praying that the side effects are kinder than the hideous nausea I’m feeling right now. Some of the posts seem to suggest it might be easier so I’m hanging on to those lol. Wishing you all the very best June chemo starters xx I need to get Gollum back in his cave!!!
Lots of ups and downs for everyone…i hope you all have better days tomorrow…
Has anyone started to think about the after chemo? Im due to have 15 rounds of radiotherapy but know NHS is likely 3 month wait. In meantime onc is talking about Tamoxifen for 2 years followed by Letrozole. Ive been reading about the drugs and am feeling apprehensive, the thought of all the same side effects ongoing for years is not appealing…anyone else had any thoughts?
Sorrt long post but i wanted to end with a positive story…since im no longer working (my contract finished in June…) ive been volunteering when im well enough. Home cooking for a homeless charity…cooked and potted up 50 meals this avo…
Im exhausted now but it was good to do something positive! Im also helping with a mental health charity supporting parents with kids with MH issues… out of bad and dark, good can come…
Sleep/ rest well all xxx
Mine has suggested two yrs of something called a CDK 4/6 something ending in the letters ib? Along with letrozole…
I too feel dismayed at more treatment but also happy there is treatment to have. I think as my cancer was in 5 lymph node.
Such mixed emotions…
but yes still have radiotherapy to get through first…
Thanks everyone for your kind and funny words - it really helped yesterday. My family and friends were sympathetic but they honestly just think another week/weeks is nothing but a blip - but we all know another day in this hellish situation is too much I wallowed in a pot noodle, a ‘sharing’ bag of walkers and 2 scones yesteday … all on top of normal food of course!
Going to try to attempt to enjoy this extra time with the boys being off school but got up this morning and said ‘let’s do something’ only to get grunts in return!! Am going to take the dog out and see what our little local bakery has in the window… sod em!!!
@jbb … sorry about your friend. What a horrible thing to have to deal with. I hope you get to take some time to grieve through all this. It’s the last thing you need when you need to focus on you. Hope you get through it ok.
We all do seem to be hitting a weird wall don’t we? The symptoms all sound similar amidst all of us but I think months of this + all the stress of being diagnosed is taking it’s toll. Our bodies and minds have been through sooooo much, it’s all getting too much. Some days seems like an eternity and although it’s September next week and we’re all closer to the end, it seems never ending!
I too wonder about what’s next… I know I have radiotherapy on the cards and bone infusions for 3 years, every 6 months (?) + some meds for 5 + years… I’m trying not to think about it but it does make me feel like I’ll be a ‘sick person’ forever. I long to feel normal again, both physically and mentally. Some days I just cry because I want my old life back… the one that I moaned about far too much … sigh, if we could turn back the clock.
@sarahw6 welcome to the group. Glad we can help each other through this all. Gollum is a great description!!!
@nicd how nice to volunteer. There’s lot of research that shows that volunteering helps our mental health so glad you’re helping yourself with it too!
And finally @charley and @charlie22 … I may have been getting you both confused!!! I didn’t realise we had two char names!!! xx
Bizarrely although named charlotte I’ve never been known as Charlie only Charley.
I feel the trauma of the situation is only now beginning to sink in, even though this all started in the middle of March. …
Any way
Good luck everyone and for those with school age kids good luck getting the back to school stuff sorted. My husband is doing the school shoe shop for the first time in forever ! My kids are now 20,18,14 so at least only one to get school shoes for . The other two Uni and college supplies…
@charley my hubby has had to do all the school uniforms and lunches and now the back to school shopping. Part of me feels for him as he’s picked up all the slack for the last 6 months or so but a bigger part of me is smugly thinking ‘see how hard it all is’ !!!
Funny that you mention trauma… the counsellor that I’ve been chatting to (only 2 out of 4 sessions so far but amazing for trawling through the emotions) talked about how this is like being in a war zone; we just have to get through each day and survive but when the war ‘ends’, that’s when we have a chance to breathe and realise what we’ve been through. I think because some of us can see the end of chemo, we can start feeling the hint of ptsd!!! I personally know I’ll need a lot of help to get over this. Whatever help I can get, I’m going to go for it… xx
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I often wonder what they expect.
I wallowed in a pot noodle, a ‘sharing’ bag of walkers and 2 scones yesteday … all on top of normal food of course!