Yes, the first 7 days i just write off to the sofa. I don’t expect to achieve anything or be of any use and then it seems to get better and i can become part of the world again. I just keep getting slight anxiety pangs about the hospital visits and having the drugs again which can spoil the good days!
Can anyone help!? I have a really sore arm (the arm they put the drugs in!) i can’t straighten it anymore and can’t drive my car cos changing the gears hurts. Has anyone else got this?
Thanks, and keep going, every hour is closer to finishing!
I feel pretty much the same as you - I was made redundant as I was diagnosed, had to give up a two week deployment with the Royal Naval Reserve to have surgery, postponed my wedding for a year, was fit and healthy and had lost a stone (to get into the wedding dress!) and didn’t get a summer holiday. So now I am broke, unemployable, can’t really exercise, getting fat and going bald - if that’s not a good excuse for a bit of depression I don’t know what is!
This disease is sh*t - although we probably all have good outcomes and I can probably say with confidence that the cancer was caught with surgery, I still have 9 months of gruelling treatment to make sure it doesn’t come back and I’m sure most of you are in the same position.
Chemo is one of the hardest things I have ever done - it’s like a major life challenge only with no positive outcome at the end. I’ve done much harder things in my life but I chose to do them and felt good at the end of it. It’s not like making the decision to run the marathon and then building up strength both mental and physical to do it with a feeling of a major achievement at the end of it and congratualations from all. I’ll only ever know if my chemo failed - otherwise there is all of this cr*p and nothing to show for it.
I feel guilty that on the first three days after chemo I am so tired I have to go back to bed to sleep in the afternoon - I never nap during the day. I hate that all my hard earned physical fitness has gone and I have put on all that hard lost weight and am now a fat, partly bald unfit blob with little to talk about other than hospitals, chemo and side effects. I bore myself. I hate the fact that Christmas and New Year will be a a horrendous write off as I will be having my sixth cycle of FEC, that I have been invited to snowboard at the Royal Navy ski championships in Jan with some good friends but won’t be fit enough to go and that I won’t be able to get a job until March after radiotherapy at the earliest, if I can find one.
Having just read all that I feel maybe I should head off and slit my wrists - just joking! But I think it shows how this can get us all down and that we should expect it to and not be too hard on ourselves. On my good days I am very positive - I am far more scared of the chemo than I am the cancer. It’s the drugs and endless side effects which get us down and if we can accept that and accept the fact that it is perfectly ok to go back to bed at lunchtime or eat a whole pack of crumpets in one sitting and that we will emerge at some point out the end, hopefully still in one piece and raring to go at the rest of our lives.
Anyway, this has turned into a bit of a rant - sorry for that. I’m on day 11 and waiting for my last se (sore mouth) to disappear so I can enjoy my good week before getting zapped again.
Trumpet - can’t help you on the sore arm, it sounds like damage to the veins. One of the (few) benefits of my hickman line is I avoid that. Hope it gets better.
Keep slogging onwards and let’s hope the New Year gets here quickly.
Yes, feel the same as you! This time last year, we were just normal, we didn’t have to go through all this just to be nearly normal again.
It just seems so unfair! We have to, but not everyone does! It is hard when you see things slipping away from you, like you Helen and your uber fitness! I was never very fit so not much to loose there. But now have a real craving to get fit when this is over.
In the mean time we just have to accept that this is how it is FOR NOW and NOT FOREVER! and try not to fight it too much. I reckon if your body wants crumpets and doughnuts and crackers we should give it to it!!!
After spending most of my life keeping fit and healthy, it hasn’t paid off. We should adopt a new five a day regimen…custard creams, crumpets, pringles, maltesers, cheese and onion crisps (? too much like a real vegetable) and doughnuts for instance. Would be wicked
Hi Helen, you sound as totally frustrated as i am with the whole fitness slipping away thing. But hang on in there, i have 2 cycles to go, and i am already planning last chem, picc line out, then 1 month of being able to swim, i dont think my running will be up to much, but i am also planning to slip in a few martial arts training sessions before surgery. I think i have found it so frustrating because training was always a way for me to sort out my head. If i had a problem running always helped me clear my head, its tough when just when you need it, it gets taken away from you. But its not forever, and i know that i will never take such things for granted ever again.
take care
anna
Hi girls,
I have to go and have a lie down just thinking of the things you ladies used to do!!!
I feel the same as you, at the beginning of May I didn’t have a care in the world - well I did but nothing as significant as this and one afternoon my world was shattered. Straight away you only focus on the bad things, like what sort of funeral do I want, will I see my daughter get married, will I see my other daughter leave school etc… Of course I will but our lives will never be quite the same. And I will never be as fit as some of you girls even if I live to be a hundred and I am already half way there.
You are right, things we thought were bad before are nothing now and just think how strong we have become and fighters - we can now take on anything.
I also spend the first week sitting in front of the tv watching things like Poirot, Dr Quinn etc, I can manage my soaps as long as they are not too noisy but anything that requires grey matter or when they start arguing on Golden Balls no way!! The second week I start trying to focus on the crafts I teach and the club a friend and I run every week, I obviously don’t make the first week of each treatment but still have to think of a project for them to do. My crafting has truly kept me sane through this and I certainly wouldn’t have coped so well without it. I hope I will still be able to do it with the Tax when I understand your fingers and nails can be sore. I was hoping to go to a big Crafting event in USA next year but it will be at the end of January just after my chemo has finished and I don’t know whether I would be up to it even though it is only for a few days. Does anyone know if rads is started straight after chemo or is there a break in between? There is another one at the end of July but it will be a lot more expensive to do it that time of year.
I too, have a tearful day, usually the third day after chemo when the slightest thing has me in tears. Thats when I have to tell everyone to be horrible to me as anything nice starts me off.
Loocie I am def with you on your five a day but not for the first five days!!!
Love to you all,
Jane x
Thought I would add to this as well. I was trying to explain to hubby this morning how useless I feel at the moment. I dont have anything interesting to say, I feel unattractive, boring and all I ever seem to think about or talk about is cancer. Life has become chemo, side effects, injections in tum, side effects and a few days of feeling slightly normal then it starts all over again. I love christmas but all I want is for January to come and for me to finish chemo. I long to feel ‘normal’ again (if you ever do after having cancer)After chemo I am due to have 4 weeks of radiotherapy and then a year of Herceptin.The road to recovery seems such a long way away. Yet again I said no more chemo after the last lot and Im truly dreading Tax (1 more Fec to go). Does anyone get sick of crying? I do but just cant help it. Sorry to rant and moan but Im feeling pretty low at the moment and the thought of 4 more chemos just makes me feel worse.
Love to all
Karen xxx
Think this is the place to rant, so don’t apologise! It’s better out than in!
I also get fed up with cancer and being ill being the only thing i seem to talk about, and the only thing people ask you about. I wonder what i thought and talked about before!
I think everyone on this chat just can’t wait for the new year to start when most of our chemo will be over and the whole lovely new year will be here!! It is a massive uphill struggle though.
Think most of you know i am a musician and have been offered something really nice in Los Angleles with a nice pop star at the end of Jan, beg Feb, not had my radiotherapy meeting yet so don’t know when they do it! Do they give you a break, can you move it!?
Have missed out on a tour of Australia happening now, because of this stupid horrible thing and really don’t want to miss this too!!
Just going to eat some more of my five a day (chocolate) xxx
Hi Loocie, Helen, Trumpet, Lyn, Jane, Karen, Anna and Hayz (and anyone I have forgotten),
Just wanted to mention you all as reading your posts we are so in this together. It’s so good being able to rant, scream, shout, cry, and laugh together. Everytime I read anyone’s post it all rings true. We all have the same feelings, the same side-effects, the same fears, the same frustrations etc etc and it really helps to talk to others going through the same ordeal as yourself. It’s not quite the same talking to my mum or friends - they do try and be kind and well meaning but they just don’t really understand what you are really going through. But I know you girls DO and that really helps. Like Helen said, it will probably be the hardest thing we ever do in our lives but we WILL get through it. I think we have all lost our lives BUT temporarily - they are just on hold waiting for us all to get well, get fit and enjoy life again - Which will be soon. We must all keep focused for 2010, it will be good again for all of us.
And Karen - you are NOT useless it’s just this awful process that is making you feel so.
OMG - I am eating so much c**p at the moment, body craves carbs. I don’t know who I am trying to kid - one moment I have got a huge bowl of a selection of fruit ‘to be healthy’ etc and 5 mins later I am stuffing maltesers, revels, M+M’s by the family bag load!!
Any weight I had lost is def going back on. I have decided to buy a running machine, 2010 being the year to start getting fit (actually I am not very good at running) but thought I could do short bursts and build up later. I hope I use it and it doesn’t end up like a useless piece of furniture!
Trumpet - sorry don’t know about if there is a gap between chemo and rads. Must be at least 3 weeks though ie so you can get over your last chemo.
Trumpet - my life seems quite dull compared with yours, musicians and travelling etc, sounds fun. Am intrigued about the popstar - are you allowed to tell us who it is?
Love to all
Lynn xx
Hi JC
Im just about to start 2nd FEC. Oncologist told me this week that i will have a week off after the last chemo before rads. So I guess thats the normal 3 weeks recovery after chemo then one more week. Dont know if everyone is the same but thats my schedule!
Karen xx
good to hear that I’m not the only one who thinks like that. Lol Loocie at your new five-a-day-for-chemo regime - I’m with you for that. Started the week with very good intentions to be sensible on the food front so had a boiled egg with asparagus. Unfortunately then added a croissant and a mini-baguette slathered with butter left over from the firework party… do you think another unknown side effect of the FEC is totally erasure of any willpower? Oooh typing those words have now left me feeling I need to raid the breadbin for any leftover crumpets. The only way forward is to empty the house of food…
Trumpet - you should mention your concert here - it’s available on iplayer (don’t want to break your anonymity if you don’t wish, but I think some might like to listen and cheer us up).
Still waiting for the sore mouth to go - it’s hanging on longer this time. Also some very unpleasant side effects with guts, nether regions and bleeding - too much detail for this forum but wonder if anyone else has had this problem - never had it before and it’s very unpleasant and painful not to say the least embarrassing!
All the best, good luck to those taking the cocktail this week.
Hi folks, how you doing today? Bit perkier - hope so? I resolved not to be grumpy today and it has worked for the most part.
Some weeks ago a friend of mine made a facebook post which read ‘Self belief is a little magic that comes from within’ and every now and again the words ring in my head, so thought I’d share them with you. We’ve all acknowledged recently that this ploppy situation is transient, and that we can’t wait to regain our lives but that we need a little help to get through. Maybe these will help?
Been working very hard on extending my five a day, and have discovered cheese straws…mmmmm they really do the do, nicely spicey and carby without being heavy! Nearly eaten a whole batch! Tried sweets (dolly mixtures and jelly beans) but they’re a bit too sweet at the mo. Will try and find something new for tomorrow.
Hi everyone,
Loocie, cheese straws, now you are talking, I bought some from Morrisons today, ate one and saved the other, forgot to hide it and my daughter found it when she came home from school. Doh… may have yo go shopping again tomorrow!!!
Redpark, yes aren’t they lovely at Redhill in the chemo suite, Solly has given me my cocktail twice now. She is very kind!
Karenap, thanks for your info re rads, I don’t think I will try and get to the States, if I am not feeling too great it would be a pretty intense few days and to go all that way and not enjoy it would be awful. Also, I wonder about travel insurance if I am still being treated. Think I’ve talked myself out of that one!!!
Good luck with your second treatment, let us know how you get on. Didn’t we all have a deep and meaningful end to last week, I’m sure we all felt better for airing out thoughts, I know I did and it does help to know we all think the same. We are NOT alone in this. My latest decision is to persuade my Onc and Surgeon that it would be best to have a mx the other side too when treatment is finished. Because I had both ductal and lobular, a large amount of of lobular (and hadn’t known any of it was there) I do not want to go through this again in a couple of years. Apparently there is more of a chance of recurrence of lobular in the other breast.
Well I’m off to savour one of the other five a day - doughnuts, something else that fell into my shopping basket today!!!
Good luck anyone having treatment this week, and hope everyone is feeling good,
Take care, love to you all,
Jane x
Hi everyone, interesting theory that EC wipes out your willpower.I started chemo thinking must eat, dont want to become thin and weak, i want to fight this. Then there is the reality of not being able to burn it off like i used to. I think if i was still able to exercise like i used to, i would be less likely to snack on things that were going to put wieght on me, i think there is a voice in my head now that says well whats the point, i cant keep in shape anyway. Is that just me making excuses for being a bit of a human hoover at the moment?
Hello,I hope things are going well for you! Iam also due to start the same cocktail as yourself on the 16th nov 09,iam a little worried, i dont like not knowing the unknown!! hope things go well for you.x jayne
so glad Im not the only one that is eating anything and everything! Talk about a whole food diet!!! I cant walk through the kitchen without poking in the cupboards and seeing what I can eat - even in the middle of the night. Hot cross buns are doing it for me at the moment and I dont even usually like cinnamon!!!
Had bloods done this morning ready for round 2 on thursday - yikes, here we go again!!
Karen xx
If anyone is really bored and wants to listen to music to take their mind off things!! I recorded a concert singing with the BBC concert orchestra for Radio 2 ‘Friday night is music night’ in January before all this cancer stuff!! They repeated the concert on Friday and it is still available on BBC iplayer! It’s the ronnie scotts concert on there. Anyway, it may cheer you up! Am alot fatter and more miserable and with less hair than i was then though ! Oh well!
wooooooow, you sound amazing! Id love to be able to sing, thats incredible!
Its sad that we cant do the things that we love right now but its only for now. my chemo is due to finish 9th dec, im telling them picc line out then i am sneaking a few martial arts lessons in before surgery. We will get back doing the things we love soon!
Let us know when you are back there performing and i will surely get my ticket to come see you.
well done you
anna
breakfast - dry stir fried veg with poached egg - glass of fruit juice. Very healthy (yes I do have odd breakfasts)
lunch - smoked salmon sandwich - not too bad
3pm - entire pepperoni pizza with baked beans! I sort of forgot I’d already eaten lunch. How did that happen?
dinner - nothing - can’t justify it after an entire pizza during the afternoon. Might stretch to an apple.
evening - glass of wine to celebrate my good week.
Who am I kidding on this healthy eating business?
You gotta laugh at us and our crazy eating. My OH who hates food and is stick thin is struggling to hold his breath when he sees what I eat - I think I’m due to seriously get it in the neck from him the moment I finish chemo - he’s being very good at being supportive and not nagging about my dreadful diet at present - bless him.
well we’ve got to do something to keep ourselves amused.
hi, im just laughing to myself, i do this. I eat healthy, fresh fruit, veg etc, then reward myself with some junk! I crave carbs, i have never eaten so much! Im not sure how realistic i am being about getting fit after chemo, its gonna be a long haul, i was painting the hall, stairs and landing today and was sweating! Maybe start a post chemo fitness thread off when the time comes, to shame me back into it!
take care
anna
