Thank you sooo much @story1 can’t believe it honestly! Appt with surgeon is this Tuesday!
1 Like
Absolutely brilliant news, so pleased for you 
. Jane x
1 Like
Hello Rachel, yes like you, I am looking like a weeble, wobbly and round! What with fat bloated stomach, bright red rashy cheeks, very little in the way of eyebrows and losing bottom eyelashes fast…. I don’t exactly look a picture! I did draw some darker bits on my eyebrows this morning and I looked a bit less like a cabbage patch doll, but with the round steroid face, there is a lot of similarities! Hope you have fun at Southwold, I love going there, not too far from where I live. I am terribly impressed that you have 3 books coming out next year, blimey there is no stopping you. Enjoy all your good days, that is at least the nice thing with EC, you do get the better days before the next round. Jane x
2 Likes
Great to hear it all went well. I never manage more than 3 or 4 hours sleep straight, I always have to get up to wee 2 or 3 times a night, must have a bladder the size of a pea! . Hope your Picc line issues settle down. Jane x
2 Likes
Thank you soo much Jane!!
1 Like
I managed my 4th paclitacel today , I have a small area of paclitacel rash on my arm where my picc line was - it’s all dotty so they knew immediately what it was. If it gets larger they will prescribe antihistamines and steroid cream but for now have advised I’m ok with just cetraben. The antihistamine with the pre meds today has calmed it down anyway.
i came home hyped on steroids so have been making the most of it after doing very little indeed this week. Wreath making is has commenced . Have finished one and 3 more to go , I’ve greened then up but will add the finishing touches tomorrow I think - one is for my neighbour (who I was supposed to make a wreath with last Sunday but was too tired) one for my mum and one for my sister.
I have realised now not to make plans for Sundays - they are my worst day after paclitacel on Friday.
I have a wedding reception to go to tomorrow night , I’m going to go very briefly and probably drag the bride outside to day hello as even with an n95 mask on I don’t want to be in a crowded inside venue so am staying an hour max. The bride understands which is fortunate.
3 Likes
@emsd2025 - fantastic news, you misr be so pleased!
@bellbert - my lashes and eyebrows are also on their way out - they survived 4 EC but I expected to lose them on paclitacel. I had semi permanent eyeliner tattoo in my lash line before chemo to hide the eyelash loss but it disappeared entirely within a month (was meant to last a year), I also had my eyebrows microbladed - I’m not sure that has lasted particularly well either so I’ll be getting my make up out after all - not that I have much energy to go anywhere or do anything..
1 Like
I’m so glad you were able to have the pacli @anim4l your wreaths are gorgeous, super talented!
1 Like
Wow, a fair few messages to catch up on! I’m with @dizzy3 there are absolute tagging wizards on this thread!
I’m a bit too pooped to tag everyone in - but thanks to those asking how I am.
I’ve now had dose 10 of 12. Plus flu jab last week and Covid jab today. Side effects seem to have changed a bit following the pause for the infection- more nausea, leg aches and pains and fatigue (possibly anaemia again) - neuropathy going away - thank heavens for the vitamin D!
no idea what my blood results are - apparently it’s now an outright ban for ALL patients- I’m meeting oncologist on Monday, so should find out more then.
It might be because I’ve gobbed off to more than one nurse that I didn’t think the information commissioner would be very impressed with the verbal reasons they’ve given to me for why I can’t have the info, nor the fact that there is no documentation of the refusal! Or it might be knee jerk reaction to recent press reports about English nhs app making significant test results available to patients without clinical support eg cancer diagnosis. Who knows? I’m going to sketch out my arguments in advance. At least I’ve now made peace with the nursing team - they’ve been put in a very tricky ethical position by all of this.
I’m going to try and tag everyone on next post - so much has been going on for us all!
1 Like
@molly.m Sorry to hear about your neuropathy- hope it buggers off. I think massage really helps. Shocked to hear you’ve only met your oncologist once! It seems to vary so much, I’d have thought there should be standards for how frequently you get to discuss your treatment with them. I’ve got loads of questions for my next appointment ( not just about access to blood test results 
).
Re taste of food I’ve realised recently that sweet things are tasting exactly the same - it’s savoury food I’m struggling with fave foods and meals just tasting wrong at min.
@dizzy3 hope your new lactose intolerance is fleeting and that you can return to previous diet quickly after chemo ends. Also hope treatment going to plan. Hope your Picc is fine.
@cathie2 Congrats on finishing this phase, hope it means you feel well enough to enjoy the festivities.
@anim4l loving your Christmas decorations. Hope you’re doing ok on the paclitaxel, hope you get the balance of resting and doing optimised well, so that you can enjoy Christmas with your daughter. I also hope your stool test comes back clear.
@emsd2025 glad your mom is back home and on road to recovery. Congrats on finishing paclitaxel
@story1 sorry you had a chemo crash. Glad to hear you’re feeling a bit better now. Enjoy Southwold! The steroid effect will pass chick - you will be comfortable in your clothes etc again after treatment.
OMG - sulking, yes! I identify with that. Re plot ooh yes - having fuck all patience or time for silliness and prats and being ruthless about it!
@bellbert and @cridders hope you’re doing ok
Ps I’m starting to lose my eyebrows now - they’ve lasted until week 10 - I think it’s because I’m so tired now I keep rubbing my face!
Sending love and appreciation to all of you, sorry if I’ve missed anyone xx
3 Likes
Good morning all, I am hoping to get some energy back today, so I can drag a few Christmas decs out, going to ditch the tree this year, just a few bits and pieces around will do…
Morning @anim4l , love your wreath, I must try and get a few fresh bits to put in a potato. It’s a bloomin’ nuisance that your semi permanent eyeliner didn’t last, all the best laid plans and all that, tut. Eyebrow pencils are so much better nowadays, so I just drew a few dark hairs in amongst the last few grey stragglers, it did make me look more normal! Well done on number 4, my face rash started after number 4, I have just had number 5 and the rash is still here, big and bold, so on new strong anti histamine, prescribed by the hospital ‘Fexofenadine’ one a day ones - hasn’t made a difference to the look, but doesn’t itch now.
Morning @buggeringon , I haven’t been shown my bloods the last few weeks, they seem to not be printing them off for anyone now, as far as I can see - originally they were printed and just plonked down next to you. Probably a good job in my case, as I was getting slightly obsessed with my liver ALT readings, which shoot up with each new treatment, but I understand why you want to see yours. I laughed out loud at the ‘ No time for prats’ Isn’t it strange how much eyebrows change your face!
Morning Rachel @story1 , hope you had a fab time in Southwold.
Morning Ailsa @molly.m , hope you are feeling a bit better. Amazon sell neuropathy cream/ointment, you can read the reviews on there, but the one I looked at had masses of reviews, most very good. It seems like it stimulates the nerves and helps with any pain, around £12 for a small tin of it, it may help.
Morning @dizzy3 , hope your picc line problems have settled down.
Morning @cathie2 , good luck for your first EC on Monday.
Hope everyone else is doing ok. It’s quite nice to have Christmas to give us all something else to think about for a while. In my mind I have divided my treatment into 2 parts, before Xmas and after, so it seems more doable. Have a good day everyone. Jane x
2 Likes
Argh - it’s my worst day today and feeling rubbish after the steroid boost on Friday’s paclitavel infusion has worn off. Feeling so uncomfortable today with a headache, stomach cramps (have taken buscopan) and sore bones - ribs especially. Whilst I want to just lie in bed all day I think I should probably get up and move about as I’m so sore.
Last night I stopped in for an hour
! at my craft teacher (now friend)’s wedding reception - I wore my n95 mask although I whipped it off for a few photos.
I tried to wear a head covering to hide my bald patches but it was slipping around and annoying so I only lasted 5 minutes with it! In a n95 mask at a wedding reception it’s pretty obvious something is up anyway and my friends there know I’m having chemo.
I’ve got big red bloated steroid cheeks too and had to draw on my eyebrows! Putting on eyeliner and mascara for the first time since starting chemo I realise my upper lashes are definitely in their way out - I think I have 5 left!!
6 Likes
@anim4l well done on completing your 4th pacli. Hope the rash improves. The piriton and the cetraben worked for me mostly. But this week it has been red, not itchy but very red so I finally had to use a little of the steroid cream and it seems to be behaving itself now. Hope you could enjoy the wedding reception. Lovely pics and you look great.
@story1 glad to hear you are feeling better and hoping that continues. Sounds like it was pretty brutal but glad you are coming through it and you have another week or so to get stronger. Hope you enjoyed Southwold. I am the same in my elastic trousers and my belly seems to blow up and down like a balloon!! My son gets married in August next year. The first of our 4 kids to get married, that is my target - that and getting through Christmas. One son home already, another son and daughter arriving this evening. Eldest daughter arriving 23rd. So all home for Christmas. Tomorrow, I have my first EC and hoping I can get to enjoy Christmas with everyone as they will be gone by New Year!!
@molly.m hope you are doing OK after your chemo this week
@emsd2025 Wow great news for you that you don’t need to have EC, really pleased for you that you can move forward with surgery. Fantastic! Great news on your Mum and your Christmas sounds lovely. I tried to get a second opinion with Peter Schmidt but he was not seeing new patients at the time. It will be interested to see what his talk is on.
@bellbert I put mascara on for the first time in a while last week and realised just how many lashes I have lost! Hope the bloated stomach eases and your energy levels are coming back.
@dizzy3 Glad your chemo went well this week and hope the PICC line is behaving.
@buggeringon that’s great your neuropathy is easing, what a relief. }So sorry to hear about your ongoing issue with the blood test results. There are so many differences that we are seeing between our hospitals as we chat on here. The blood results seems such a simple ask but is causing so much stress for you, yet in other hospitals they are given out. I am sorry that you are going through this. Clearly the concept of Shared Decision Making and the theory that a better informed patient will remain better informed throughout their diagnosis and therefore better equipped to be making decisions that could improve their quality of life is sadly not something that you are seeing. I hope you can make some headway soon.
Good luck to everyone having treatment this week, hoping you can still enjoy Christmas!!
3 Likes
@cathie2 - good luck with your first EC tomorrow, I’d recommend icing your mouth during the infusion- either a slushy in a Stanley cup (I used my daughter’s massive one and McDonald’s iced lemonade) or ice poles, and to rinse in the days after - either with a salt/ bicarbonate of soda wash or difflam (I was prescribed this) - especially from day 3 onwards.
I skipped this complacently one round and had terrible mouth ulcers - and was prescribed gel clair which I learnt about from this forum.
Are you cold capping?
I found the EC also irritated my bladder and I had to go to the loo more frequently..
You look amazing @anim4l
1 Like
Thanks @cathie2 totally wasn’t expecting it - yes I think he’s almost impossible to see, hope the talk is good. Still can’t quite believe it about EC, though I do wonder if I’ll need it after.
hope you feel better @molly.m @bellbert and so glad that the neuropathy is easing now @buggeringon. I’m absolutely exhausted today and no idea why! Brain in overdrive always x
1 Like
Hello all, I managed to stay on my feet long enough to get some Christmas decs up and had Xmas music on, so that put me more in the mood. Bloods tomorrow and Paclitaxel number 6 on Tuesday, fingers crossed…
Hello @anim4l, you look lovely actually, the round cheeks do give a wholesome, young vibe, unfortunately my round cheeks are very very red and blotchy. Hope your headache, bone aches and cramps improve soon.
Hello @cathie2, good luck tomorrow. Rachel @story1, was advised to drink lemon barley water, when she kept getting bladder problems, so you may want to stock up on some, just in case - I did and it certainly helped sort things out.
Hello @emsd2025, hope you get some energy back soon, I have just used all mine up, putting decs up, so feeling a bit wiped out myself at the moment.
Hope everyone else is managing ok and has a good week this week. Happy Christmas to you all. Jane x
2 Likes
Well done on getting the Christmas devs up @bellbert
Decorating for Christmas is my favourite part of the festivities but I just didn’t have the energy for a real tree this year - I usually have a massive garden be and enjoy it and the smell but this year we are making do with the little plastic one from my daughter’s room that she decorates herself - she did do a pretty good job, although not to my taste but then I’m not 10 !
Just waiting out Sunday which is my worst day for symptoms and am feeling rotten but I’ve been out for 10 minutes for some more foliage before it rains, will be making some wreaths/ centrepieces with my daughter when she’s back on Tuesday - she loves all crafting so it’s a fun tradition for us. I’m very glad she’s away enjoying herself as I don’t really have the energy to be a good mum at the moment, I don’t know how I’d manage without the help of my family and friends. I finish chemo in February half term and I’m hoping my sister can take my daughter away then too - I feel so depleted now and in 8 weeks dread to think how tired I will be! Post chemo I’m really looking forward to getting some energy and stamina back. I’ve bought Merlin passes for next year and hope to be able to use them next summer. We live 10 minutes away from Warwick castle so can pop there anytime , and the theme parks are a safe day out for someone immunocompromised as it’s all outside, but hoping to do the indoor attractions come next winter.
My local hospital don’t want me travelling abroad until I complete my treatment - which won’t be until June at the earliest, I’m not sure I’ll be able to get reasonably priced travel insurance initially either or be fit enough to go abroad so I’m making UK plans for this summer and looking forward to life “after treatment “
5 Likes
@anim4l she’s absolutely gorgeous and I love the tree! Merlin passes are a fab idea!
1 Like
Good morning all -I’m at the stage now of what else can start hurting? Overnight I’ve taken buscopan for stomach cramps, co codomal for headaches and general limb pain and I’m back on the difflam mouth wash as I feel the mouth ulcers are on their way back, and I’ve had a nose bleed!
Still - we are past the darkest night and spring is on its way…
3 Likes