Thanks again for the welcome. Think it may take me a little while to get up to speed with where you are all up to with your threatments - forgive me but really looking forward to picking up your tips and experiences.
It will be good to have contact with some who are going through the journey at a similar time as I don’t really get to see anyone at hospital as I travel and only went to this hospital for the start of the treatment due to issues locally. Bit like dropping in last minute on treatment day. Finding out where things are and what is available but very confident with the team and that is a major positive for me.
Last treatment visit EC 2, I was able to go to a ‘Colour me Beautiful’ session put on by local agent as a volunteer - great opportunity to meet up with others and share some fun time looking at colours and decide what we were - fun when you have no hair and are trying to describe a colour!
Jayne - hope you are ok - sounds like you have some rough SE. Hope you’re able to be kind to yourself.
All the the best to those approaching round 2. For me, SE have been similar really. One friend text me yesterday and spoke about whe she had made up ‘dollie plates’ for her Mum - small potions to tempt her and that is a vision that resonated with me and also made me smile.
Hope today brings positives for all - the colours of those Autumn trees that are still holding onto their last leaves - perhaps eyelashes!
I’m back now. Two down four to go. I cold capped which was harder initially this time. Probably because I have so little hair on top now. I’ve taken to my bed in the need to feel protected. Feeling a little vulnerable and tearful. Now just waiting for the yuck evening.
Still holding your hands Chris and Ruth. Not sure what time your sessions were.
I’m home and also in bed. Not because I feel sick yet but just for the comfort of it. Felt like a long old session today and I envied the people coming in and leaving quickly who were not cold capping. Strangely the cap didn’t feel that bad at the start but the last half an hour was unpleasant. My friend had to play lots of alphabet games with me to keep me from looking at the timer on the machine every minute. And in the bathroom beforehand when I was putting the conditioner in my hair, I had the biggest loss of all and had to spend a few minutes cleaning the sink plug. So, we shall see if it’s worth persevering.
Can’t decide whether to have a little nap now or if that will ruin my night’s sleep tonight.
Hope you get through the night okay Emma D and that you are doing okay Chris. I think there might be another one of us today, was it another of the Emmas? Apologies if I got that wrong.
good luck to all who’ve just had next treatment, hopefully you’ll all get a good nights sleep.
Well Rosie, I tackled the hair this morning, number 3 all over and you’re right, I feel amazing, totally liberated. No longer dreading the clumps coming out. I even went out to lunch au naturale, something I never thought I would do.
i think I will order the liposils, the other product was revitalash but you need one for eyebrows, one for lashes, I think liposils covers both.
Can’t believe I only had my chemo yesterday and have been for lunch and xmas shopping in town, feel a bit tired now though and hoping footprint a good nights sleep.
with regards to the hair situation I shaved mine to a number 1 on Sunday and today I’ve noticed that the final spiky bits are starting to come out as well. It feels much better having clipped it off, rather than stressing about it keep coming out everywhere.
Not being a grump, but hope we don’t have too many trick or treaters calling this weekend???
I’m feeling a lot more reassured by all of you who have clippered the hair off and seem so positive about it should that be my fate.
Definitely feeling a little more unpleasant than I did the evening of FEC1 but think that’s actually more to do with horrible period pain. Seems that chemo has not decided to shut my ovaries down just yet!
I felt a but rough last night, but didn’t need to move into the bathroom. I just lay in bed moaning and tossing and turning. That was reasonably short lived thankfully, and I even managed a piece of chicken from kfc which my hubby had got. I don’t think I’ve ever eaten so slowly, but I was hungry at the same time, and I think a little food can help to settle it.
i had a good night’s sleep and was awake with the birds again, though probably earlier than the birds! The thirst has started which is good to help flush it out.
So encouraged as well by you all who have clippered your hair. I went out in a hat for the first time yesterday. I don’t think 'm at the clippering stage yet as my fringe hasn’t budged at all. If the cold cap manages to keep that then I can fool people by having some hair under my hat. #savethefringe
Sorry you wear feeling rough last night Ruth. I have no idea what my ovaries are up to as I have a mirena coil fitted. No periods for four years now. How cruel to have your calendar intercept like that.
Chris, how are you doing? Hope all is well. The hands are still outstretched.
I tend to start Christmas shopping aft Remembrance Sunday. We have got a lot of decorating to do in Nivember with hubby possibly being away over FEC3 too. New lounge suit arriving before Christmas, new carpet early December for stairs and lounge. Lots of painting when I’m out of the fog. Time for the kids to learn some diy skills so i can just supervise!
Virtual hugs to all. Each day is one more step along the road.
i’m up early today too, so I thought I’d say hello. Glad you’re ok. Was that KFC for breakfast? Good on your girl! Well done on tolerating the cold cap. I found it harder for 2nd one, but hasn’t got any worse since, despite continued shedding. If you can keep it up, you might keep your fringe & can look forward to faster regrowth. Hope your day continues as well as it started. xx
its great to see everyone still coping so well - what an amazing, strong bunch we are xxx I’ve got my FEC 2 on the 9th Nov and currently feel okay, even managed a couple of beers last night - it was like heaven! It was a small celebration as I’d been having bad headaches, the onc sent me for an MRI, which of course sets off all sorts of grim thoughts… Anyhoo, it all came back clear, I’m just amazed they found a brain at all! Headaches have stopped, so it’s just down to the chemo, which is not surprising as I’ve had enough chemicals pumped in to me to down a small army.
Hair is still firmly in place, drop is inevitable reading everyone else’s comments. I did cold cap, but not sure I’m going to do it again if this causes the headaches.
For those that have just had their treatment, hope your SE’s are few xx
Hi, i was diagnosed in Feb, and used this site a lot but felt something lacking so when it got to chemo time I set up private Facebook account for anyone starting chemo in may, we can say absolutely anything, shared photos of going bald, nails going horrible, videos, name hospitals etc, absolutely invaluable support and we are all meeting up (18 of us) early next year when all finished treatments and surgery etc. Would urge anyone to do the same,
Good luck to you all, I won’t pretend it’s easy but you very quickly begin to forget the bad times x
Early morning trip to the barbers today to get my hair clipped by a pregnant witch! Should be more comfortable (and less hot) wearing my new wig now.
A friend of mine told me that her aunt got fed up with trick or treaters and played a trick by pulling off her wig. Something to bear in mind for those of us who get fed up with unwanted callers tonight.
Off to a band contest today where I may meet some friends who I have not seen for around 20 years! Should be fun.
Morning everyone. Not feeling too awful this morning. Period pain subsiding and I don’t feel sick yet, more like I had a heavy night out last night so a bit hung over. Hopefully the steroids will kick in and get me moving soon. I seriously need to do some tidying today.
No sightings of the eagle to report yet although strategic bran and prunes have been taken with breakfast.
I did have a chemo brain incident last night when I almost got in the bath with my underwear still on.
Looks like you have lots to plan for in the forthcoming weeks Emma D and I will be supporing your #savethefringe campaign. I really need mine to stay as I have a high forehead in the first place and don’t need any more of it on show.
Glad you enjoyed your beers Emma S. Alas, that’s one of the things, along with chocolate, that FEC 1 spoilt for me - both tasted foul. Fortunately wine tastes fine although I’ll be giving that a miss for a few days until brain is less foggy and tummy more stable.
Liz, I was thinking the same about the trick or treaters. My hair today would be enough to scare anyone if I took my beanie off. Luckily we have been warned by our neighbours who are bringing their children around later roughly what time they are coming. They are all lovely kids so may spare them the unveiling of my head. And I can give them them the chocolate that people have bought me recently that I can’t enjoy as treats.
Well done all you chemo troopers! Sounds like everyone is coping really well with the various trials and tribulations.
I had a horrible period between chemo 1 and 2…heavy and really painful, which they aren’t normally, so I think the chemo can do that, before it stops them altogether.
My worse things this time have been sore throat (finally better today - day 10 after chemo), painful heartburn, and then horrible rash on my bald head…the final indignity (well, probably not final, I’m sure more to come next time ?). I think it was probably folliculitis as had nice pimples too, but seems to have subsided now the stubble is mostly gone. Lovely!!
Continuing to have constant crazy food cravings though…the idea of KFC for breakfast just made me think ‘Yum!’ Currently watching Nigella Express which is making me crave smoked salmon blinis and chocolate fudge (sorry to anyone feeling sick at the mo).
Feeling generally a bit perkier now though. Started watching The Affair yesterday…really enjoying it as a change from NCIS etc.
Mmmm, there does seem to be a pattern forming here with painful cramps at the early stages doesn’t there? Maybe it’s the chemo allowing us our last menstrual hoorah (yeah, thanks). On the positive side, mine were so horrid last night that it totally took my mind off any other side-effects … every cloud etc.
Ele, have you been using anything on your head to allieviate the irritation or just to keep the skin moisturised?
Just done a steriod-fuelled clean of the house and tidied up the front garden. An afternoon on the sofa awaits.
Hi Ruth, I did try E45 cream just to moisturise and soothe, but not sure whether that helped. Yesterday and today I washed my scalp with my son’s Seba-med face wash which is antibacterial (for acne) and then left well alone…no moisturiser, no head covering, and no scratching (mostly). So that’s either done the trick or more likely, it’s just resolved by itself.
I know it’s a bit mad but I’m kind of trying to avoid ever more medication for every side effect, as I feel a bit like each of those things then has its own side effect to be managed and I want my body to just get back to equilibrium by itself. I know it’s crazy when they’re effectively giving me intravenous poison every 3 weeks, and it’s probably also fuelled by a bit of a) laziness and b) wanting to avoid doctors and pharmacies etc, but there you go! X
Wow. What a lot of catching up to do. So impressed with you all shaving the hair off and feeling so great about it. It’s so lovely to hear.
i’ve sat on the sofa all day. I got bored with knitting so am now crocheting a throw. It seems I can’t sit down without some craft in my hands at the moment. My hubby also bought me aWall E Lego kit for my birthday which I’ve been picking up as well. Therapeutic Lego!
Hubby is cooking dinner tonight. I feel hungover and jittery, but no more nausea thankfully. I trimmed my fringe earlier so that is looks better under a hat. Long at it last.
I really love this group. Wherabouts in the country is everyone? I’m in Hampshire just down past Winchester.
I have a hubby in the kitchen too this evening - how lucky we are.
I’m in South East London although originally from Liverpool. Used to spend a lot of time in Basingstoke for work but have had some lovely weekends in other bits of Hampshire Emma. It’s a lovely county. And love Norfolk too.
I’m enjoying the gymnastics world championships on telly this afternoon. The Brits are doing amazingly well.
Afternoon all, been to Dunelm to buy some new bath towels and Morrisons for the weekly shop, I sure know how to rock n roll. Feeling rather good today, must be the steroids.
going to have a soak in the bah in a mo, get my pjs on, shut the curtains and hopefully keep away the trick or treaters (bah humbug).
I’m from Eastwood (D H Lawrence birthplace) in Nottinghamshire.
Oh sorry you are feeling so rubbish Chris. Hopefully the worst bit is over now. Well done for being brave with the hair. The increased rate of fall and how tough I found the last half hour of the cold cap yesterday means I might not be too far behind you. I’m not sure I can cope with the uncertainity. Let’s see. My husband said he saw a really stylish bald lady on the tube yesterday and tried to take a discrete photo of her but failed and took a selfie instead! Isn’t it lucky that so many of us have husbands with clippers.
I’ve been a bit manic today on the steriods. I suspect I’m going to crash before too long.
I could not do without this forum and mostly you lot are the people I think of first when I wake up every day. xx
Sorry your having a bad time Chris, hopefully it will pass soon. I’m just making the most of my up time, I am anticipating a crash when I’m not on the steroids on Monday, we will just have to see.
My little spiky buts of hair are coming out pretty quickly now, I now look like a patchy mess, so the quicker it all rubs off the better.