@alig1961 I think we’re an ok looking bunch with bald heads… we’re rocking the look! But yes, hot heads… not sure if winter or summer is worse but the hot head even with my light baseball cap earlier this morning was too hot on the dog walk… I felt like my eyeballs were sweating !!! Damn British weather not being predicable… arghhhh
@akioqey I have the smell thing too but it comes and goes… my teenage sons aftershave makes me heave if I walk past his room … and I can smell someone smoking a mile off. Food too but that does go and then those cravings start!!!
How do we sort this Chemo hotel … love the idea of emerging as a beautiful butterfly after months of crap treatment and eating nothing but carbs and sweets !!!
I’ve just weighed in for today’s chemo session and have shockingly lost one kilo!! I was convinced that I would have put on after my Big Girl snacks this weekend
Check me in to this hotel too! I’ve been reading everyone’s messages, loving the banter and positive spirit as well as following how you’ve all been doing -just not quite summoned the energy to say hi until now.
Hope your session goes ok today @pat and sorry to hear about your fall @lolac - touch wood you heal quickly.
I had EC round 3 last week and my body has dealt with it ok (except for the growth factor injection which takes me down for 36hrs).
I feel like at home we have slipped into a pattern of just getting through each day and that we don’t find much joy or fun along the way - I think probably as the mental side of this is taking its toll. We’ve always been people that get out and do stuff, any ideas or suggestions on how to get out of the rut and lift the cloud a little?
@ljlj hi there. I know what you mean about plodding through and not doing the fun things. We plan things to look foward to for the third week when I’m feeling well. This time we went to the cinema twice, out for lunch and yesterday to a National Trust place and had a fabulous walk. On the second week we try and pop to a cafe for tea and cake or something. Even a nice film on the telly can lift your spirits I find.
I started the same as you with paclitaxel every week but I also have carbo every 3rd week. I was wondering why I was the odd one out of reading everyone’s posts… I start EC in September… So we’re in the same boat.
Last week I went for my 3 weekly check/see how everything is going, it’s going in the right direction… slightly shrunk from the time before, I’ll take that. Will have an MRI scan in August and one at the end before surgery.
I had my 7th round last Friday, paclitaxel and carbo in one, I have paclitaxel every Friday and carbo every 3rd… and EC will start September.
My hair is hanging on for dear life, very thin on top… I know it probably won’t last much longer but I have hats, scarves and wig on hand. My head is itchy and a little sore in places but will continue as best I can
I have pretty much little to no taste of food, so we’re having spice in a lot of things and trying to navigate through this minefield.
Other than this, all going ok so far, hoping to get away for a couple of days before I start EC as from what I’m reading and nurses reactions, seems that’s the tough one to get through but I’m ready, each day as it comes
Bloods are good and I’m ready for round 4 and final EC today. Whoooo, half way and as my onc said, most of the ‘heavy lifting’ is done with EC in my case … so feeling upbeat. I can see the light at the end of the bloody long tunnel today!!!
@ljlj I’m probably not the best person to respond to you as I tend to feel like I want to crawl into a cave most days (my cosy position on the sofa does sort of represent a cave with cushions and blankets all around me!) … BUT … I do force myself to get out and do stuff, with other (positive!) people. Mostly it’s dog walks with a tea or icecream on a bench but it does make me feel better. We went for a family pub lunch on Saturday and I actually forgot for an hour or so that I’m going through this and I thought ‘this is how I want to feel in 2025’.
Also the ‘small things’ … it sounds a bit trite but I do try to get a bit of joy from a nice movie, watching Simpsons with one of my boys, taking my other one to the athletics track… nice packet of crisps, GB getting medals… it’s not much, especially when my life before was all about holidays and festivals and nights out… but it does get you through a bit. AND (sorry, I’m on a roll here!) maybe have a nice hour or so writing down all the things you are going to do when this is over… I have an ever expanding list on my phone that sometimes I just look at to remind myself that happier days will come xx
@itsjustme81 glad it’s all going in the right direction… we have to take the positives when we can. Do try to go away before EC starts but hopefully like some of us here, you will have more ‘normal’ week 2/3 so you can do some nicer stuff then.
@pat …one kilo, wow. I lost loads of weight when I was in the ‘waiting for results’ horror but have managed to put it all back on now, and probably more. Damn Walkers for making their cheese and onion crisps so tasty!!!
Ive managed to convince myself that Party Rings and Jammie Dodgers are slimming I had my 3rd EC yesterday, which is half way for me. Onto Docetaxel in 3 weeks so probably getting used to a whole new set of side effects.
Once the tiredness hits me this week I am planning on watching Bridgerton, though I may need to watch every episode several times to fill in the bits I sleep through
A win is a win no matter how small at the moment! When I have EC, it’s every other week… not sure what to make of that one but have got time off work and hospital appointments arranged just before we do go… so definitely something to look forward to.
Hi at @itsjustme81 i sound like I am on a similar regime … although my oncologist has taken out the pac now (I kept reacting) and swapped for abraxne for my last two rounds (which will be every three weeks now starting tomorrow) . then like you I start EC in September… although I’m going to be every three weeks. It’s all so confusing some days!
Someone mentioned the mental load … for me I’m finding it quite rough at the moment … think maybe it’s because it’s the summer holidays and normally I have so much planned with the kids. We are still doing days when we can … tiday we’ve just been to the local lido (although I didn’t get in the pool … stupid PICC line ) I had a moment where I sat on a bench and watched my other half on the pool with my little one and everyone else splashing around and having fun and I just cried behind my sunglasses!!
@pat … well done on the weight loss although I’m sure that’s last thing on your mind … I’d put a kilo on last time i got weighed … although the oncologist was like that’s good … errr not for me… I already feel like a bloated butterball!
I binged watched Bridgerton and really enjoyed it when I first started chemo! I’m currently into Breaking bad!! X
@charlie22 We have recently discovered Acorn TV, which of course we call Acorn Antiques which appears to consist entirely of Midsomer Murders type of programmes set in other places - New Zealand, Italy, Chelsea. Requires very little brain power and has good acting and fabulous scenery.
Imso sorry to hear how hard things are for you at the moment. It must be so difficult with children especially in the summer holidays.
Have a hug and look after yourself as well as everyone else xx
I think the summer holidays are going to be hard to deal with - I’m almost wishing summer away to get to October and hopefully be done with it! We should have own off to Lanzarote this morning so we’re all feeling a bit sorry for ourselves today
Instead I’ve had my bloods done and waiting the call tomorrow to see if my third EC can go ahead on Friday. On the plus side I will be half way if it does. Then I have 3, 3 weekly Docetaxel to do. Bit nervous about what side effects they will bring as think I’ve been quite lucky with the EC so far.
Thanks @pat and @donna_51, some lovely ideas! Since writing my post I have been trying harder to find the ‘glimmers’ (the term I’m using to describe finding fun/happiness) in everything I do and just to be present, and enjoy the lovely moments I can have with my son/husband/family etc. I’m also thinking of planning a night or two away one weekend, within a relatively short distance of home, just for a change of scenery given we have no idea when we’ll next escape overseas-and I may look to do that more often once I know how I react to weekly Paclitaxol.
@charlie22 I can totally understand how you must have felt at the pool and I’m sending you a big virtual hug. I’ve had a couple of moments like that watching my husband and son recently, surrounded by others having lots of fun and it’s hard - life is just carrying on around me (and rightly so), but I don’t feel able to be properly part of it despite wanting to.
@donna_51 hope round 4 has gone ok today and the side effects are kind to you, I’ve got my 4th & final EC next Weds.
@wjs perhaps you should bring Lanzarote to you to make up for having to cancel holiday plans with a Spanish themed dinner this week!
@wjs you are having exactly the same as me in the same week. I had my third EC yesterday. Also a bit nervous about the Docetaxel as i feel I’ve just got the side effect sorted for the EC
I’m on exactly the same course of treatment as you @wjs but my third EC isn’t until the 7th Aug. Can’t wait until I can say I’m half way. Dreading third EC as I don’t feel that it’s been very kind. I hope T treatment is kinder.
Fingers crossed for good bloods and then for Friday.
Hey All
Quick question had my second AC yesterday (fortnightly). When on EC or AC did you notice shredding when using the cold cap - I’m on about day 16 of treatment (if day one is day of treatment).
I didn’t shed on 12 weeks of paclitaxel but my luck is going to run out on AC, so I’m trying to prepare myself…
x
I skipped two weeks for tests and then had ear balance issue so became more like three before I started again.
Before the ear infection, I was enjoying being normal for once, eating properly and also getting more exercise. Whatever I could do to prepare myself physically and mentally for the final chemo ride.
Do have at least a week off (that’s two weeks from the last paclitaxel) if you can and feel up to it. The chemo is still doing its job
@ljlj that’s an excellent idea re the Spanish night - wonder if I could get away with a little glass on Sangria too!
@alig1961 and @pat really hoping the Docetaxel isn’t any worse than the EC Will let you know how it goes when I get to it.
@jbb I have my third EC (hopefully) on Friday and am cold capping. Started to shed lots of hair from around day 18 after my first one which is normal but was a bit traumatic. I feel like although I’m constantly picking hairs off me it has slowed down. After my hair wash yesterday there were only a few strands. I still have my patches above my ears but nothing else noticeable……yet. It has definitely thinned but only really noticeable to me. Hoping it doesn’t speed up again after the third! I’ve started using the Weleda hair tonic twice a day. Not sure if it will do anything but it smells nice
For anyone else cold capping I found this group on Facebook. I think it’s mainly American based but there are people from the UK too. It’s interesting to see people’s experiences and some helpful info too
I had my 3rd EC yesterday, which is half way for me. Onto Docetaxel in 3 weeks so probably getting used to a whole new set of side effects. 
) I had a moment where I sat on a bench and watched my other half on the pool with my little one and everyone else splashing around and having fun and I just cried behind my sunglasses!!
Will let you know how it goes when I get to it.
