Thanks Barton. I found your post really comforting. It’s good to know that working whilst on cape is doable and that people have managed many years on this treatment. I start tomorrow and will keep you posted on my progress. I hope the peachy warriors will do their trick for me!
Hello tomboy
Welcome to our thread we are a like a family on here. One of the ladies who in no longer on cape called us an army with peachy soldiers that go into battle on the “C”.
Alas she had progression and changed to E/E but I had progression and came off E/E onto cape and my scans have been great with the last one showing the tumour has shrunk from35mm to 26mm.
Barton is our mainstay she gives lots of good advice as she has been on and off cape and like she says you will find it a help reading back posts I did when I was first on cape and found it useful with the side effects and working Waffles still works as well but I am retired.
But do ask moan rant and rave if you need to we are all here to help when we can.
Love and (((hugs))) to all our peachy warriors xxx
Thanks Marirose. I’m really grateful for all of your support through such a frightening time xxx
Hello Tomboy81 - welcome (you know what I mean).
I can’t decide about your central Europe job option for you either, but if it were me I would be tempted to do it - because, perhaps like you, my worst times with this b"£%y disease are when I am unable to be my normal self. How long an assignment is it, or it is open-ended? Can you reassess it in say six months without people getting ratty?
As has been said the fantastic thing about cape is that it is pills not IV. This reduces the time on appointments and fits so much better into a working life. But at the end of the day it is chemotherapy and I suppose you have to respect that fact - even though I find it very hard.
I reckon I work 3/4 time or so, and I am in my sixties now so that’s not so unusual among “well” people. It certainly isn’t among my firiends. There are very few days when it is a real struggle though I can find it hard to get going in the morning.
The main thing is to hope that youer side effects are mild and manageable as seems to be the case for a fair few of us on here. And, of course, that it works!
Good luck
Hi Tomboy,
I work four days a week at the moment and I am on my 7th cycle of cape. I am lucky to have minimal side effects so can work without any problems. I love my job which is a marvellous distraction for me . I find that as long as my pain is under control I can cope with most things and some days I don’t even think about my health. (However, last week I suffered a few days of unexpected back pain and my mood dropped very badly during that time bUt I was still able to work).
Do you have to go abroad and do your bosses know about you health?
I think as long as you feel well and want to work abroad you should.It sounds like even if you went to Eastern Europe you could return quickly to get any treatment required. However, it would certainly be preferable if you could wait to see how you cope with the side effects before you go abroad. Most importantly, don’t go just to try to prove to yourself or others you are still like you’re old self. Only go if you think it will make you feel happier… Best wishes xxx
Hi Peachy Warriors
Thank goodness I am on my free week I can get a lay in well at the weekend. I am having an awful time today with hands feet are ok but the hands are so red and I cannot feel things right with my finger tips. I also get neuropathy in feet at times.
I am really suffering in the heat and I love the sun but it effects the MS. I feel useless I cannot do gardening for very long without sitting down and my back is now aching like mad.
Then the cooking I cannot open simple things like flip lids or unscrew bottles.
There I’ve had my moan I hope you are all doing fine and enjoying the warm sunshine we get very little of it and now the weekend is near it is changing again.
Love and ((((hugs)))) xxx
Hi Marirose. I’m with you on the sore hands and feet! I’m also very grumpy despite the sunshine… I’ve been on cape for just over a week now and the soles of my feet are really painful! I’ve been telling people at work that I slipped down the stairs because I’m hobbling around like an invalid! I’ve been moisturising my feet a lot and trying to keep them cool but is there anything else I could do? Top tips welcome…
Dear Barton
you are a gem with your tips I do listen and take your advice yesterday was a bad day for enjoying the hot sunshine my hands (touch wood ) are not sore and the skin on the feet is in very good condition although the soles do get red and my big toes seem to suffer. On E/E combo the toe was looking like an in growing toe nail now the other toe looks like going the same way but hopfully the summer is coming and I will be able to wear open sandles
But the cream from Aldi with 10% urea for £1.99 is great as it is only a promotional item when it’s gone it’s gone. Hubby went and bought a load from another Aldi because our’s sold out so now we have loads hope they don’t take me of cape too soon other wise I shall have to stand on the street selling them.
Another good tip I read was to soak your feet in cold water which I did when we had 2 days of hot weather it felt pretty good and they said to pat dry not rub.
Welcome to our thread Ellie I hope you manage to cope with the side effects ok Waffles still manages to continue with work.
Love and ((((((hugs)))))) all Peachy Warriors xxx
Hi EJ81. I’m pretty new to the group too (I’ve been on cape for just over a week) Sending a big hug to my cape newbie sister! I think we must be the same age too judging by the “81” (I’m 35) Thanks to everyone for the tips- keep em’ coming! I have liver Mets and have been getting twinges in that area over the past few days. I hope that means that the peachy warriors are doing the trick! Happy Friday X
Hi Tomboy and EJ81,
My main tip is to always take Cape 20 minutes after food. I started out taking them shortly after food and I ended up with a lot of stomach discomfort.
Tomboy I also get twinges in the liver area but to tell you the truth you can get pain under right rib if your stomach is irritated too. Anyway, I had a stable scan after suffering twinges and aches in bone met sites and under right rib (I have liver mets) after 4 cycles of cape. I had suffered a lot of progression on previous failed hormonal treatment. I’d certainly mention to the onc about any pain but I just wanted to reassure you that not all pain is a bad sign. Best wishes xxx
Cape crusader it is we will have costumes next.
Morning crusaders
Ellie you are so right about twinges I was getting loads of twinges in my tumour area around the 6 cycle mark and I thought it wasn’t working only to find the tumour had shrunk by 9mm the first reduction I had plenty of stables but the first positive on cape.
So the peachy soldiers were working long may it continue.
Love and (((hugs))) xxx
Haha! I love the “cape crusaders” idea! Can our costumes be a loose fitting cotton though? (I don’t think I’d look very good in tight Lycra) Plus, it wouldn’t agree with my hot flushes… ? I’m currently putting my poorly feet up whilst enjoying some tea and cake. Sent the other half out to do the food shopping and to get some urea moisturising cream. Maybe I’ll get him to massage it in later. Oh, well- I may as well use this rubbish situation to my advantage!
Hello Cape Crusaders,
I’ve just bought myself a camping chair to sit out in the sunshine as my skinny bum doesn’t give my bones enough padding to sit on the grass anymore. However, I think I remember reading somewhere sitting out in the sun isn’t that good for you when you are on cape. Does anyone know anything about this or am I just imagining it. xxx
Hi crusaders
Yes you are right Barton strong sun factor for all chemo girls and shade like hats. Remember this is a chemo even though you don’t lose hair and you can stay on much longer than IV chemos. I am having a terrible time in the heat because it also effects MS I find I can hardly walk at all but I love the sun so much especially after the cold damp weather.But please be careful we already have enough to put up with.
Love and (((((hugs))))) xxx
Hi Barton. I completely agree! I get so frustrated when I see all of these Jeremy Kyle rejects wandering around town stuffing their faces with junk and smoking- they’re all completely fine! It makes me so angry when I think of a friend of mine who sadly passed away at the age of 30 from BC. She was a teetotal vegetarian and one of the kindest ladies you could ever meet. There’s no justice, is there? Anyway, rant over. This particular subject REALLY gets my blood boiling (as you can tell!) ?
Apologies for previous post. As you can tell, I’m feeling particularly grumpy today! Not being able to walk properly is really getting me down. Do the sore hands and feet calm down eventually? I’m resting, keeping them cool and obsessively moisturising with urea cream but they still feel as though someone has applied a blowtorch to them! I’m usually quite an active person and being almost immobile is really upsetting me…
Is the dose calculated by your height and weight? I am currently on 3500mg per day. As no hormonals seemed to have worked for me, I’m keen to stick with the cape if it’s kicking cancer’s bum. However, I’m feeling so miserable! I’m off to a work conference today and was almost crying at the train station this morning. I can barely walk or even hold a pen at the moment. I know there’s going to be “team bonding” drinks tonight too and I’m so exhausted. I’m really struggling to cope right now xxx
Thank you Barton. You are so kind. I’m such an emotional, exhausted wreck at the moment. I just
want to run home to my Mum and Dad’s for a cuddle and to hide away from the world. Everyone wants me to keep going with my London life and job but I feel like I just can’t do it anymore. I’m such a mess. I can’t even text anymore because of my stupid red hands and excess moisturiser! So fed up. I’ll see my onc on Thursday so will chat about things then. Thank you xxx
Tomboy…go home if only for a few days it will give you time to rest and reflect…theres no way you can keep up with work and after work events even if your well it knackers you…a couple of days away will help I’m sure…sharonx