Hi
Thanks for starting this post - I was wondering where I could post now and you’ve yet again found a brilliant thread title.
I feel very odd now that I’ve been told I can’t have any more chemo. I’m used to making my own decisions and feel I have been pushed into it but at the same time, I remember vineralbine giving me terrible diarrhoea and I just wouldn’t cope with it.
I’ve got so far now and if a bad cold, which is what para flu is, nearly kills me then it doesn’t seem worth it when chemo will drop my neutrophils etc further. I don’t want to die from an infection after pushing so hard for more chemo.
Sometimes, I’m hoping to get strong enough to go home and at other times it seems to much effort to do anything and I just want to throw the towel in and give in and die.
It is my stomach and bowels which are giving me the worst grief and it’s difficult to get sufficient pain control without being asleep all the time. I seem to be sensitive to so many drugs now and yesterday was a waste as I had double vision due to some anti sickness drug and just couldn’t do anything. Been better today and been at home which was great.
I’m in a wait and see position regarding my belly as my clotting factors are all up the shoot and there is only a small amount of fluid there and the rest is inflammation in my ‘mental fils’. It is more risky to try to get fluid out than leave it in.
It’s odd having no chemo but I think it is the right decision for me right now and just see what happens.
Debs - glad your blinking eye has healed.
Love to you all
Kate
Hi Kate,
I can’t begin to tell you how wonderful it is to see you post again!
Sorry to hear ‘mental fil’ is giving so much gip, but I can relate to it, it sounds like me and my ‘fil’ I was at clinic yesterday and was told to take things easy and not expect too much too soon. If you thik about it chemo takes you to the brink of death and when we get an infection it nearly finishes us off. I truly believe if we can see a little improvement each day we stand a good chance of getting through summer. Lets hope with this thread we can all monitor our little steps of improvement.
Take care.
Love Debsxxx
Well today I could not have my pamidronate and avastin as I have a nasty infection. Did tell Dr D I thought I had one, sent home with strong antibiotics and blood pressure tablets. I told you I was ill!
Love Debsxxx
Well I’m not on chemo either, but I am on pamidronate and herceptin - although I may have to start all over with herceptin because they have buggered up my appts over easter (I feel a letter of complaint coming on), I’ve also just in the last few days had a node removed to check for the metal fils too.
Jane, yup you are right, my onc is researching into the use of ritalin for women with secs who are experiencing severe fatigure in America. I also know someone with multiple myloema(sp?)Jane who has come off amitrytylene(spspsp?)as it is causing him exhaustion too.
I wonder if some of mine isn’t related to the changes I made during chemo, i.e. installing a tele in the bedroom. I find it is ideal late at night particularly watching some old crime crap, as oppossed to thinking about depressing things. Clearly it isn’t helping my internal time clock. It still doesn’t make any sense that I can walk the dog whilst falling asleep. On the other hand even if i don’t,(feel exhausted) I really do not want to spend too long in the company of even very good friends - I need more time out these days.
I still have more tools in my chemo box, but again i wonder if it depends on the mental fils result, or one just down the road.
I am certainly not ready to see this as my last spring or summer, still in the grip of some disbelief, which I am grateful for and on occasion I wish I had more of.
By September I will have an empty nest, and I am aware, that my thinking on this is very worrying. I am thinking i can be properly ill, without having to spray on a face for my children, and stay in bed for as long as I need to without having to get up because it worries them if I don’t. I’m really going to have to sort out my head before then. Or I shall be like the g/parents in wily wonka
Poor Debs - hope the infection gets better soon. i hate it when health prof don’t believe you when you say you are ill or feel you have an infection. We know our bodies best and what is normal for us.
I’m in a different place to the rest of you regarding tiredness so think I won’t be contributing to that part.
It was useful to be reminded that chemo takes a long time to get over so thanks for that.
As for me, I’ve got a wee infection - why do they make antibiotics so big!!
Otherwise not much to report as seem quite stable at present which is a strange feeling in itself!!!
Celeste - sorry to hear about the cock up with your herceptin. I hope they can sort it out for you. Do you mean by ‘starting again’ that you need a booster dose?
Kate
… yes ~Kate, if they cannot sort out the appt for nxt week - and they cannot so far - then yes - up to the ward again for me!
Hi all,Sorry to hear about your infection Debs. I hope it clears up soon and you’ll be back out in the garden but keep leaving the ironing to Ian - that can wait!!
So good to see you posting again Kate and so glad you are feeling a bit better. I hope you get to go home again soon.Nice to see you posting again as well Celeste.
I feel I’ve turned a corner myself during the past fortnight as I think my energy levels are gradually increasing thank goodness and my joints don’t seem to be quite as painful apart from in the morning with my strange dance while I try to get my feet to plant firmly on the ground and go shuffling downstairs like an old lady!!A couple of weeks ago I just kept getting so tearful and just felt I had no energy at all and was frustrated as I know how precious this time off-chemo is and I want to enjoy it but it’s a big effort when you’re on your own. I’ve seen close friends who live away both yesterday and today which has bucked me up no end and although I’m tired, having been to a concert as well, am still up and it’s after 11pm which is a miracle!!Am going away with my dog to a cottage in West Wales next week and it will be bittersweet as I’ve stayed in the same cottage a few times with my ex-husband and I’ll lay some ghosts to rest - a friend will be up there for 2 days whilst we’re there so that will be a nice distraction and the whole thing will be a challenge for me to drive there alone and master the driving whilst there as my ex used to do it all.
Anyway I’m rambling!! Have a good weekend all - I’ve just joined a new social and activity group and am going on a Pamper spa day on Easter Sunday so am looking forward to that - just hoping the place don’t cause any problems once I disclose my illness!!
Take care,
Hi everyone,
well I hope you all have a lovely Easter, we have friends due any minute!
Celeste, I really hope you don’t have ‘mental fil’ he is unpredictable, nagging and gnawing away inside you, so fingers crossed. Funny where has the little ugger come from?
Anne, have a lovely time with your little dog at the cottage, you did mention training him? could he learn to drive? On a more serious note, when you go to the cottage take a look around with new eyes, let go of the things you know you should, but embrace any wonderful memories and hold them in your heart.
Well I better go and help Ian he never ironed a sheet in his life till he got these posh ones!
Love Debsxxx
Well my energy levels crashed to low low yesterday and I am taking it easy today, went back to bed after breakfast after a poor nights sleep. I think I may be coming down with something myself, my husband is on the antibiotics for easter. Will keep an eye on this as i dont want to go down with an infection. Debs i really dont know how you do it if you are entertaining people will you get enough rest?
Kate -I am glad to see you posting. These mental fils are not greatto say the least I am sorry to hear that it is giving you traouble and celeste I hope you are not joining in there.
Anne - be careful what you say has been my experience. I have had places refuse to do anything, a year after my primary I could not get a manicure at one place…wish I had kept mouth shut.
take care all
cathyx
Dear All,
This is an interesting thread for me too as I have been off chemo since Nov 2007 although I have had WBR last November.
My fatigue levels have dropped considerably since then and I am currently off work due to possible reemergence of brain mets - not confirmed as yet.
I did attend a BCC say for those with secondaries and there were a doctor there theat do personal exercise plans with those with cancer.
Her link is <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%69%6e%66%6f%40%63%61%6e%72%65%68%61%62%2e%63%6f%2e%75%6b%22%3e%69%6e%66%6f%40%63%61%6e%72%65%68%61%62%2e%63%6f%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script>
canrehab.co.uk
I liked her talk as she didn’t assume you were just looking for arm exercises but a general plan to improve stamina all over.
Kate
Might be throwing the cat among the pigeons here but I thought I’d tell you all what helped me most with fatigue. I was also getting a lot of migraine and a friend suggested I tried an allergy diet. I started by giving up wheat and by the end of the second week I had started to feel much better and that overwhelming feeling of tiredness had gone. Gradually I started to get more energy and also noticed that the joint pains from Aromasin improved quite dramatically.
I am not suggesting you all rush to try this, I am just saying it’s working brilliantly for me. I know it won’t be the answer for everyone. Obviously when avoiding a food group you have to make sure you are still getting all your dietary requirements. You have to be very committed and make sure you have absolutely no wheat at all so you have to read all contents labels. If I can’t avoid having wheat if I’m away from home I find the tiredness and stiff joints return within three days.
JaneRA - taking Amitriptyline made me very woozy/tired in the mornings when I first started taking it, I was told by my GP it would, but that did gradually improve and now it doesn’t bother me at all. I do understand feeling abandoned after treatment and think it probably is very common. I hope you feel less so as time goes on.
Hello everyone, I was wondering the other day as to whether I could post as I have been very tearful and depressed but did not want to upset anyone as we all have our problems but hearing that others feel the same after ending chemo it has helped me think a bit more clearly. I know the chemo free period is a time I should be making the most of but I cannot help but feel I have been abandoned. On reflection I felt like this after my original dx in 1998 when I finished treatment but this time it feels much worse. I’m rambling a bit but I do feel a little better for reading the other posts.
Glad to see you’re posting again Kate and Debs hope the infection clears up quickly. Lesley xx
Hi,
I was on Taxotere first and then Xeloda which I finished at the beginning of February.Still on Herceptin and Zometa.
I’ve had terrible fatigue and joint pain since finishing the Tax especially in my hips and feel about 90 years old getting out of bed some days.
The Xeloda worked really well for me but I still have mets to liver and spine.My spine is causing me problems as I have nerve pain in my shoulder blade and down my arm.Taking slow release morphine(MST),
Gabapentin and Oramorph for break through pain.I’ve been seeing a lovely Dr at my local Marie Curie Centre who has been trying to sort out my pain and meds.They have also referred me for complementary therapy at a small local hospital.I went last Monday and had aromatherapy massage and reflexology on my feet.It was very relaxing but didn’t do anything for the pain in my shoulder.Dr thinks it’s about time I have another bone scan to see if I have spread to my shoulder blade.
The worst thing for me is the fatigue,as it stops me from doing the things I enjoyed before,like DIY and Salsa Dancing.
Best Easter wishes,
Alli x
Hi everyone,
well our guests have just taken the boys to the beach, as an old granny you forget how much energy a 3year and 9 year old have. I am used to girls so it is a bit of a change. Sol and Theo both have Boris Johnson hair so I got some strange looks when I was sat and they could see the bald bits on the top of my head. I like to wear a scarf tied round I can’t see the bald bits!
Lesley… yes this is ‘normal’ but I am sure you will soon pick up I hope we all do!
Alli… I also had good results for a couple of years on xeloda so fingers crossed you can enjoy a long chemo break with us all.
Celeste… sent a p.m. to you hope you got it where the hell has ‘mental fil’ come from? He is certainly doing the bl…dy rounds.
Got to go and meet ours guests for coffee and cake. Hope you are all enjoying the lovely weather.
Love Debsxxx
Mental fils, please could someone explain what this is? Is is fluid in the stomach lining or something like that? So sorry to hear of all of you who have this. Luckily haven’t gone there yet.
Happy Easter!
Marmite x
I’m bumping this up a bit as I’m not sure what mental fils is either. It sounds horrendous though and really sorry for all who are suffering with this.
Lesley xx
hi Lesley and Marmite,
my ‘malignant omental infiltration’ was diagnosed last Oct, it showed u on a scan as stranding? Whatever that means it looked like little strandy bits. It is the fat in the midriff, that moves about to protect your organs from infection. I don’t know if there is another type, but that is what I have. Last 2 scans show improvement so that is the taxol doing it’s job.
Love Debsxxx
Thanks for the explanation Debs - that makes sense to me now - I didn’t have a clue before, lol! Glad the Taxol has worked well on it, that’s great news.
Lesley xx
Hi,
hope you all had a lovely Easter we had 2 lots of visitors so our home has been a bit like a b&b.
Must share this as I thought it funny. When the boys had gone to bed, one is 9 the other 3. I had a few glasses of wine my head was abit hot so I took my wig off. We all went to bed, in the morning the lads were up early sat in lounge, Theo said ‘what’s that?’ his mum said that is aunty Deb’s hair. Theo, with his hands on his head couldn’t stop laughing ‘you know mum, that is really funny’ When I got up with a scarf around my head he couldn’t stop looking and giggling.
Love Debsxxx
Hi Debs
I’m sorry to see you haven’t been keeping so good and hope that you feel better soon. I’ve not been on for a while, liked the old site a wee bit better but I have been really quite busy. I also got quite a shock when Paula died and it effected me quite a lot, it’s quite amazing how we never meet but somehow form bonds with people on this site. I just feel that sometimes when something sad like that happens it makes me realise my own mortality is shortened too and I find it difficlut to get it out of my mind, so I took ‘time out’ off the site for a while to pull my socks up and get o with it!
It is rather quiet on the site isn’t it?
Speak to you soon
Diane
xx