Tina`s confussed . . . . . .Chemo after re-occurance??????

I can never understand any of it!

My oncologist tells me that they don`t giove chemo until the cancer starts to make us feel un well, because the chemo is to offer a better quality of life????????

But when I had my chemo, I was really poorly with it and just about managed 5 not so bad days within the 3 weeks between treatments.

Hell, I don`t want to go through that again!!!

Does any of us soooooo?

In my opinion we have to feel pretty bad for the chemo to give us a BETTER quality of life, don`t we just? Which ever way I look at it there is no quality of life, or is there?

And then I get confussed thinking if early diagnosis and early treament gives us a better suvival chance? I wonder why this is not so much the case with a re-ocurrance? I was told that any re-occurance does not respond so well to treatment if given too early on, there must be a cut off point, surely it isn`t in our best interest to wait until the sodding cells has invaded all of our organs.

I am told by one oncologist I have an 85% chance of cure, told by another I have a 50% chance of still being alive in another three years, this I may add is with or without cancer.

I had stage 2c, grade 3, 21 months ago, finished treatment one year and 3 months ago and as far as I know I am still cancer free!!!!!

I appreciate I am in a good place for the moment and no one can tell us what the future holds unless its really bad news. My problem is I ask whay too many questions and they are not always good for me.

I intend to party till I drop - having a girly night out tonight, joint birthday celebration with my best friend.

And the weather man tells us the rain will stop soon, whoop! whoop! so that makes a difference, As IF !!!!!!

Love you all - take good care of yourselves, give yourself permission to rest and say NO and have everything you want, pamper yourself and be a little selfish for a change.

Hugs sent from Tina xxxx

35 Replies

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  • Hi Tina ,

    Yes it is confusing!!! enjoy your girly night..(I'll try not to write a rhyme haha!!) the weather might be better later on..let's hope so...love x G x :-)

  • Frankly, Tina; the only statistic that matters is the one that is yours. No one knows what will happen - especially in the still-mysterious realm of cancer!

    As to the rationale for chemotherapy; I had no doubt that much of the 'science' behind it is at best shaky, and fear that the alternatives are so poorly promoted because of the power of the drug companies, and humans' propensity to request medical rather than the harder work of lifestyle solutions.

    I wish you total and lasting remission!

    Isadora

  • Dear Tina

    It is confusing and if you want ogive me a ring I can discuss things further. Although logically it would seem that the sooner a recurrence is treated the better, as is usually the case at original diagnosis, a recent trial showed that with it did not make a difference as to whether you started treatment when your Ca125 was rising or you waited for a person to have symtpoms

    Ruth

    Support Line Nurse

  • HI Tina

    Isadora is right . We are not statistics . Try to focus on how well you are doing and a continued long remission. As far as i am aware sometimes they do wait for symptoms but will base things around symptoms/ca125 and scans . My worry is i only had abdominal pain for a couple weeks and no other symptoms such as bloating etc The longer remission the better so heres hope for years more . My oncologist talks about IF it comes back and not WHEN focus on these two words and what a difference they make

    Love

    Ally

  • Thanks Ruth, that is what I had been told too, I just can`t get my head around it!

    A question:-

    If ones CA125 has lowered as low as 8 then suddenly starts to climb - would investiagtions be made before it reaches past the 35 normal range? I also find this a huge concern.

    I know, I know, I must enjoy the here and now and not worry about the maybe`s. This new information is so fresh for me today as I only was in oncology yesterday.

    I am trying to turn the statistic round then they look much better, thanks everyone, I know I`m not in such a dark place as many of you, but you know what it`s like, we can often do our own head in worrying too much about the If`s, but`s and maybe`s.

    Its so nice to be able to feel free to share ones own feelings though, sometimes its not so easy to talk so freely with loved ones - and they often handle things in a completly different way than we do.

    Love from Tinaxxx

  • My CA125 went down to 30 after 1st round of treament....but it then started rising......they told me once it's doubled thre norm..ie is 70...then they'll to scan and if they see anything start treatment again!!!!!Mine went up to 100 and I started treatment...that started November 2011 and finished April 2012........and am having 3 month check ups at the moment...next one September...so I try and foregt about it til then...and am sure it'll be fine!!!xxxx

  • Should have said 1st diagnosed mARCH 2010, TREATMENT May to September. Remission for 14 months then started treatment again Nov 2011!

  • HI Tina

    Agree some times hard to talk to those close to us i feel need to be upbeat all the time . Statistics are old !! . In 5 years time who knows what new developments will be . The inspire website has survivor stories of women 8 10 and 20 years with no recurrence . Know this is not perhaps the normal but there is hope . You are only normal to worry . We all do and would be telling a great big fib if we said we didnt . But we probably worried before we had cancer as well but just more in our minds now.

    You know we are here .

    Love

    Ally

  • Hi Ally, Yes I know we are all scared, thank goodness we have friends to be scared with and we all seem to know exactly what to say with one another Thank you.

    I wonder if hypnotherapy would help? - if we said we don`t need to think and worry anymore, sometimes it would be great to block it all out and get on with things. Soo, thats what I am going to do tonight, I have a joint birthday celebration girly night out with my best friend.

    She is fantastic because she takes me away from myself and I love to get a run down about her juicy love life, lucky cow!

    Lots of love always from tina xxx

  • Hi Tina

    Hypnotherapy may help they use it for everything now .Dont really believe in it myself

    Good to have a night out . Have a great time . I dont know were i would be without my close friends ( although none has a juicy love life) they have been there each step

    GIRL POWER

    Have a fab night

    Love

    Ally

  • Dear Tina, my oncologist said more or less what yours does - that if I look and feel OK then they won't worry about doing scans or considering chemotherapy. I did see an article about cancer cells that even with our disease good cells grow that combat the site of the cancerous ones and it's believed that if they give chemotherapy they will kill those as well.

    I take the view that the longer I can stay looking and feeling well the better it is. I'll deal with tomorrow when it comes.

    Enjoy your girls' night out. Enjoy every day. If hypnotherapy seems a good idea I'd try it.

    Hope you're feeling better for a night away from worrying about it all.

    Lots of love xxx Annie

  • Hear Hear Annie!!! I totally agree with your attitude.

    Deal with tomorrow when it comes, praise be for every day of feeling well.

  • Thanks girls - we did have a splendid night out with lots of giggles too.

    It didn`t start off too well mind you. It was chucking it down with rain (there`s a surprise), and when we got to the pub it was all closed up, doors locked, no lights on. So we stood with no coats in the rain and no umbrella which ws totaly our own stupid fault. Eventually, the pub owner came to the door but instead of letting us in he just stood in the door way looking at us all agog as if we were about to sell him something. We said we had a meal booked at 7O`Clock but he still looked at us as if we`d just landed from the planet of mars.

    So, I repeated that we had booked a meal for 7pm. He looked at his watch and said "Its 7 minutes too, I don`t open until 7". We couldn`t belive it, he was so rude.

    I added "So we`ll just stay out here in the pouring rain shall we? or maybe we shouild wait in the car", he did let us in eventually but I don`t think he was happy about it.

    The restaurant door was on the left, the bar door in front. He turned into the door on the left slamming it shut in our faces.

    The food was fabulous and the comapnay even better but we won`t line his pocket with our wonga again. I think he needs a good course in customer care management.

    At least it took my mind away from the previous day so all was good on that score.

    Chilling day today, got some floating shelves that need putting up in my kitchen if I can find hubby with his drill.

    Happy smiles today - thanks for all the wonderful support.

    Lots of love from Tina xxxxxxx

  • This came through as I was typing mine! I trusdt you left no tip. Personally I would have told him to stuff his table and gone elsewhere but that might not have been a choice! Have you thought of putting the story on Facebook or Twitter? It might teach the landlord that there is no such thing as a captive customer base! But then, as you may have gathered I am a bolshie, bloody minded, pushy old cow! LOL!

    Here's a tip, learn to use the drill yourself! then you do not have to wait until hubby feels the same sense of urgency! Now if I can just drive to B&Q I need to repair my kitchen trolley! LOL!

    Love M! xxxxx

  • Hi Margaret, I had exactly the same thought as you. I'd rather have not eaten than have put up with such ignorant behaviour. I hadn't thought of Facebook. There's also Trip Advisor which encourages people to review Restaurants, hotels, etc. I certainly think it would be appropriate to detail how badly Tina was treated.

    Ah Tina - you're working on your kitchen. We are too! We're just about to loose our kitchen for 2 months whilst we have some quite dramatic work done to it. I'll be looking to have shelves put up too. What are floating shelves? They sound very exciting. I've got this vision of a kitchen in space with all the pots and pans floating around ready to be captured and used.

    It's really lovely to hear more about friends on the site. Our friendships are too frequently based on our shared experiences of cancer. I love reading other news about you all and getting to know you more.

    Hope everyone has plans to enjoy the lovely weekend weather. We're on our boat in Plymouth. Wall-to-wall blue skies at the moment but no wind. Ah well we'll just have to sit out on deck with a G & T! love xxxx Annie

  • I love the picture of floating pots and pans!, and you sitting on deck with the G&T. Hadn't thought about Trip Adviser! What a good idea! I hope Tina does something! No matter how good the food poor service can really spoil things!

  • Glad you feel beter today. It's natural to have wobbly moments with this bl###y disease. Try to think 'right here, right now, I'm fine ...... Enjoy the moment.

    As to the man in the pub, try naming and shaming him on trip adviser! It's very easy to join.

    It does all get easier, too, to enjoy the healthy times, I sometimes forget all about my OC but I always have a bit of a 'what if....' moment if I have any strange aches and pains. I don't think that will ever go away!

    All the best,

    Love Wendy xx

  • Dear Tina!

    I once taught stats to Geographers! As a result I treat them with caution! They predict the behavious of populations and may give the probability of causal relationships but they prove nothing and are useless for predicting outcomes for an individual! Stats are just that! You as an individual have as much chance of being in the top 10% of survivors as the bottom! I ignore all statistical predictions except that I put nothing off just in case!

    My Onc and I agreed last summer that it was worth the discomfort and unpleasant side effects of chemo if the result was a better quality of life but not if it was not working (ie the tumour was not shrinking, which it wasn't) as I am not into postponing death by giving me an existence tied to a bed feeling like s**t!

    They took the tumour out and I am not on chemo at present. I thought another was growing as I am having to pee more frequently and have some problems with indigestion but, due to my recent problem with my back, my GP had a CA125 test done to be certain that it was 'just' the slipped disc and not something worse and, guess what, the result is 7 only 1 up from my last visit to the gynaecologist. I am not currently having Oncology reviews as my last treatment was surgical! I am in agony with the back anbd sciatica, spending a fortune on heated pads, knee braces etc but over the moon to know it is not the C back!

    Like you I am partying like mad! even though I have to do it on my feet! sitting being a difficult activity! went for an Indian meal last night and had to keep getting up to strtch the leg! LOL! Gave me a great feeling of superiority!

    I drive but only short distances, at least I can now get to Tesco without the air turning blue! LOL!

    As many of you will have gathered a sweet, demure, old lady I am not! I learned a lot of interesting epithets on break duty outside the boys' toilets when I was teaching! Never realised they would come in so handy for relieving my feelings. I hope I have not been too liberated while coming round from anaesthetic! So far Surgeons, anaesthetists and nurses have not mentioned it and nobody shunned me in hospital so I must have been relatively well behaved! LOL.

    Enjoy your girls' night out! Our condition puts a really strong slant on "eat, drink, and be merry ........." While we can we should squeeze the last possiuble bit of flavour from existence!

    Love Margaret.

  • Hello Tina,

    I'm sorry to read your posting - I know exactly how you feel about not being given any more chemo before you have bad symptons.Five and a half years ago (Dec 2006) I was debulked and told that I was Stage 2c and grade 2b plus positive cells after a peritoneal washout. (Some call that Grade 3, I understand)

    I had 6 sessions, 3 weekly, of Taxol and Carboplatin and told I would have more chemo if the Ca came back. About a year later I was shocked to be bluntly told that if I did have a recurrence there would be no treatment as a 10 year trial had just finished, showing that more chemo made no difference to the length of survival time, but was so toxic, quality of life was better without it. I've tended to be worried about this as I've heard no mention of anyone else being "left alone", like this, so in a bizarre way, your comments and also Ruth Payne's have made me feel a bit better. However, most of the time, apart from a few wobbles now and then, I think it probably is a good thing to get on without chemo, if possible. Although I do now have the B****r back, since Spring 2011, I'm still doing lots of things I couldn't have if I'd been having more lines of chemo.

    I'm really just saying all this to hopefully give you more confidence and to say you're not alone. Keep positive and carry on having a laugh with friends - it's the best medecine!!

    Long may you stay "free", best wishes, Solange

  • Hi Tina

    This is a really difficult concept to come to terms with, and I know this from bitter experience.

    I am not technically in remission; my 3rd recurrence (3years ago) was treated with chemo which stabilized the disease, ie it did not shrink, but did not grow either. I can tell you there were many tears, tantrums and sleepless nights with the same questions going round in my head and I must have asked my oncologist the same questions several times over as I just could not understand. I even thought that when they say 'You do no better whether you have chemo or not' as simply being a euphemism for 'You're gonna die anyway.'

    However, I do finally get it, or at least I accept it and as Annie says I just am happy for being fit and healthy for as long as possible. Cancer is not affecting my day to day life at present, so why have chemo which most definitely would affect my quality of life. They are not saying symptoms have to be worse than chemo, but would be affecting your day to day life more. Obviously there is the hope the chemo would improve your situation so that after it finished you would have fewer symptoms than before chemo.

    I saw my oncologist for a check up the other day and I said that I was feeling really good, mentally and physically. Back in February, I was sat in her office crying my eyes out essentially pleading with her not to let me die. It all seems a bit dramatic now, *blush* but I was terrified. She asked how I had come to terms with having cancer, but not having any treatment and the answer I gave her was 'because I am still here'. My condition has not got any worse since I had a stent fitted at Christmas and I can live with that (literally ;) ) I actually had to ask her advice on my aching bones because I am doing so much exercise!!! So, I am now taking calcium tablets and getting a bone density scan to check for osteoporosis.

    I am so grateful to have found this site as I was having a really tough time coping with this. But when I was first diagnosed there was nothing like this available and I actually think that I am grateful for that, because my situation was so different back then. After a few years I forgot I had cancer and forgot it could come back, which was a really nice place to be in. Even though it did come back I am glad that for a little while I could pretend that it would not.

    I think it must be tough for you to read the experiences of people who are a little further down the line from you. With us all discussing our recurrences, it is only natural for you to assume that this will be your future too. But you have got to hold on to the hope that your cancer will not return and I truly believe that this is a possibility for you.

    Vx

  • Viv makes a lot of good points, I know we are all different, but I am still here after nearly ten years, no chemo, no recurrence and still thanking a surgeon who said he'd had a jolly good rummage around to try to make sure he'd got it all' he also apologised for leaving me with such a messy scar .....as if I cared ;-)

    Just wanted to let you know it can be years or maybe even never when it returns.

    Stay well! :-)

    Love Wendy xx

  • Hi Tina glad to hear you had a great night . Sounds as if was a good one . Landlord excepted . Perhaps gift vouchers for customer care course may be good for him from santa

    Margaret when i woke for anaesthetic sure i said that bas!!£$ (that word) was away for fish and chips / This refering to hubbby as told me he was having a chippy when he got home .

    Love

    Ally

  • Oh boy, you ladies have left such a heart felt lump in my throat because you all know this feeling so well, you have also made me feel really lucky at this moment in time, in spite of the answers from wednesdays hospital visit. You are all so right ~ and talking from your own experiences of course, who else better to take notice off.

    You think your going quite mad in your head at times, don`t you? especially when all your none cancerous friends tell you to pull yourself together.

    Vicky - my heart goes out to you, such a lot to keep going through you are my new inspiration as many other of my friends on here are.

    I had a bit of a wobble when I received a copy of my end of treatment letter to my GP, It stated that they had made me aware that if I had a re-occurance they could only offer pallative intent. I actually couldn`t remember them making me aware of this, I`m sure you shut yourself off at times, that part sure did go over the top of my head. Maybe many of us need to keep asking the same questions. Anyway, I am all for second opinions and they all seem to be telling us pretty much the same. We are all in the hands of the Gods, even those who die suddenly from brain hemourages, here one moment gone the next, at least we have time to prepare.

    My brother was diagnosed with colon cancer 6 weeks before me with OC. He did not have the inherrited faulty gene that me and my two daughters do, he was told he had an 85% suvival chance, he sadly passed away in April this year. After his first surgary he did have chemotherapy, we both lost our hair together. When he found out the cancer had returned he refussed all types of treatment, it was his wish to be sedated and have pain relief, I guess he had, had enough, he was scared at prolonging his suffering. He knew he was dieing so he wanted it as quickly as possible - me I`m so different, but then who can say until they are facing terminal cancer.

    Margaret, when I came round from the anaesthetic, aparaently I had the theatre nurses in stitches with laughing because I was telling them all about my blonde episodes.

    The next day when they brought another patient back to the ward, they popped into see me and sat on my bed telling me how much I had made them laugh, they even told me they had to give me something to calm me down, I was so up in the sky of happiness. They should have left me there, LOL!!

    Ally, your anaesthetic story made me laugh too, Its good that such a dreadful experience can actually bring us a little laughter.

    I remember the day when the chemo nurse picked up the wrong drug and put it straight through like an injection instead of through the slow drip. It gave me such a prickly sting on my back side she had me dancing around in circles like a the Tom cat with his arse on fire in the Tom and Jerry cartoon. Everyone was laughing because my wonderful hubby sat there peeing himself and the nurse was in tears, she was so sorry. She had also been working full time on that ward for 31 years and never made one single mistake. Thank God it only lasted a few minutes but yay it was pretty painful ~ it was also kind of funny afterwards when everyone laughed, it just seemed kind of worth it, if you know what I mean?

    The nurses also told me that the chemo ward was the nicest to work on because cancer patients are so appreciative for what they do for us. They also told me we make the less fuss out of any other patients - cancer sure is not for the faint of heart but I guess we are quite a happy bunch too, maybe because we are now going to be greatful for every breath.

    As for the Blue Bell INN - we will never eat there again and we will tell all our friends, in the few hours since the experience of that man we have been told he has quite a nasty reputation in the village, so there we must rest our case.

    All my love to you all - do take care all of you, and remember we can`t be brave all of the time.

    Big gentle hugs from Tina xxxx

  • Tina, The Blue Bell Inn ..... where!!!! We shall all avoid it. xx

  • Hi whippit,

    The Blue Bell Inn, at Whaplode St, Catherines, Lincolnshire. Food great, expensive tho and big shame about the owner, LOL!!!

  • Fab - it's worth coming over to Lincolnshire to shun the place. It must be difficult to enjoy food if the ambience is awful. Enough to give anyone indigestion. It's rather the opposite in Wales. Everyone is so friendly and welcoming but so often the standard of fare in pubs and restaurants leaves something to be desired. You certainly deserve a good night out after all the difficulties over the last couple of years so I'm really pleased to hear you enjoyed yourselves in the end.

    love annie

  • Thanks Annie, it has made good gossip for face book, LOL!!!!

    He`s already losing business with this word of mouth... silly old fool, as we know life is too short to be like that - misearable old fart.

    But he didn`t stop us enjoying and thats the main thing, we two strong ladies and wouldn`t let that happen.

    I looove the welsh people, I have never been to wales but it is on my things to do list. We have met some wonderful wesh people on holiday, so maybe we will get over there soon.

    Love T xxxx

  • Dear Tina

    Please take this as an invitation to fulfil one of the items on your bucket list. I'm not Welsh but live in the centre of Cardiff and my house is a fab base for sightseeing around this wonderful historic city. You are most welcome to come and stay.

    xxx Annie

  • Oh Annie, that is so kind of you, thank you.

    Keep well and Stay safe luvie xxxxxx

  • Hi Tina, So sorry about your brother we all have our own way of handling what is thrown at us, what he chose to do was obviously better for him. My onc has said the same thing in as far as waiting for symptoms to appear before more chemo, I had one reoccurence after 15 months so had 2 lots of chemo, none now since June 2010, I feel ok, odd feelings now and then but you can't always put that down to the cancer. My husband says he was petrified of how he would handle the diagnosis of cancer for him, but after seeing how I have handled it and the time frame of when diagnosed in 2008 he feels he would handle it differently now, I hope he never has to find out! Same as Ally I too feel I have to stay upbeat for family, they would worry far more if I was carrying on about the cancer (not that I am the sort of person that whines on about things I have a very positive energy and always have had) Time goes so quickly and I know in my situation our goalposts have moved forward but we do what ever we feel like and enjoy life, take care love Jorja xx

  • Hi Jorja,

    Thank you, My broth was very manter of fact and up front about his illness and where it was going to leed him. He was brave in his own way but very outspoken about it all, he never once hid behind his own fears by not talking openly about them with his friends and family, but he did shut me out a great deal knowing I was going through cancer too. I guess that was his way of protecting me, I think everyone was protecting me from how serious it was for him.

    I would never do that to my family. We lost our mum at the age of 47, I was 16, my broth was 19. We were protected whay too much, all our questions was answered with a lie and this gave us false hope. It may have just been old school so many years ago but in my opinion it never helps anyone especially those who are trying to be ill in secret.

    When I was diagnosed I asked my daughters if they wanted to be updated on the whole truth and nothing but the truth, they both told me they wanted to know everything that we knew, they didn`t want me to be brave and hide inside my fears, they wanted to share that and be part of it all.

    So that is the way we are. It may not suit some people but when people say they are going to beat it, they live in cloud cookoo land as far as I`m concerned - this doesn`t need to be a death sentance and its good to turn every negative into a positive, when they gave me a percentage of the risks I personally carry, I will shrug and say well that gives me . . . % of it not happening and that is how I have to think to get through.

    This is good, I am also aware that all statistics are at least 5 years out of date and improovments are made all the time. Things have moved on from even 2 yrs ago and that we have to be thankful for.

    I never dreamt in a million years I`d handle any of this until it happened, we even surprise ourselves don`t we?. The day I was daignosed all I wanted to do while still at the hospital was have a nice lunch, hubby couldn`t eat a thing, I think I ate a horse - well, I was still hungry in spite of the bad news, LOL!!!! I don`t think its ever really up to us whether we beat it or not, like I say its out of our hands, but there is no real point in remmision or the well days if we dwell too much on the cancer.

    It sounds as though one thing cancer teaches us is never to argue with other half, always be loving and kind to everyone and BE HAPPY and have a great time while we can.

    I have lived with a chronic painful disease of the muscles for the past 12 years, that has taught me all the positive self help coping skills there can possibly be. The difference is it robs the quality of life but it isn`t life thretening. I was also adviced not to have the taxol because it would make my muscles and nerve endings worse, all I could say was give me it, I`ll take that chance because at the end of the day it might not. It has a little as it happens, but I have no regrets and would have it again if there was a small chance it would kill the nasty cells. Now, I am soldierring on just as much as always.

    Your story is brilliant news - it has given me more hope if any of us first timers get a re-occurance, so we can get through a second round, 2 yrs and with no more chemo how wonderful. Splendid news!

    I understand now that we shouldn`t waste time worrying too much - we must only do that when we need too.

    You take good care of yourself too sweet lady - just don`t be brave all the time, we wouldn`t be human if we were.

    Lots of love Tina xxxx

  • P.S. I also share your wonderful stories with my friends and family - I don`t always feel brave but they tell me I am and my GP thinks I am a huge inspiration to all cancer sufferers, I dun know about that - this is the only place I can be negative if I am being.

    Love to all you darlings xxx

  • Hi Tina, Thank you for your kind thoughts, I was interested in your comment on the Taxol causing damage to your nerve ending etc, I used to get terrible pains in my legs and joints about 3 days after the chemo, they were intense for about 5 days and then backed off, I was never sick or got mouth ulcers luckily, but maybe the Taxol caused the pain I was having, I still get it now especially after sitting down or walking for any period of time? I told my onc that I didn't want any time frames given to me, I know this disease is just maintained and I can handle that, but I am the kind of person that doesn't want any negatives in my head, I will handle anything that comes up if it happens, My best girlfriends husband was given 4 months last August and he is still going strong.You sound like a very strong lady and you are right we do surprise ourselves when thngs like this come along, Just thought I would let you know I am in Australia but originally from England, came here 1965 when I was 14, Came from Yorkshire closest big town was Leeds love Jorja xx

  • Hi Tina

    I see you started of this blog with "Tina's confused" and now I have to admit after reading all the replies that I'm totally confused!

    I'm having a scan on Wednesday and then apparently will be starting on Topotecan which will be my third line chemo since April 2010. I had the normal debulking surgery in August 2010 and also had an ilesotomy formed. I had my last 2nd line chemo middle of February this year but recently I've had some bloating which comes and goes and I do now have some pain which I've never had before, however codeine deals with that okay. I'm pretty knackered a lot of the time but other times I'm not too bad all day and then it's like someone switches off a light and I feel I'm ready to collapse and have to just get into bed and rest or sleep! However, there's no way I could exercise or go bike riding or run a marathon as some of you ladies seem to do as I just don't have the energy!

    What's confusing me is that some people seem to be being told that there's no more chemo available to them after only a couple of lines of chemo and yet others (Spanishanna for instance) are kept going with chemo after chemo.

    I can totally understand being told no more, if for instance the tumours have spread into the liver or other organs and there is no way that having more chemo will make much of a difference. In that case it's probably best to try and accept it and make the most of the time you have left.

    But reading the posts - this doesn't seem to be the case for some of you who have been told - no more chemo - unless I'm missing something.

    Chemo is dreadful and debilitating and although I've always said I'll go with what my oncologist advises as I have complete faith in her I don't know how I'd cope with being told that's it at this stage as I feel I'll still be able to take more chemo if it kept me alive. I've always thought I'd know myself when it was time to say no - I can't take any more.

    Sorry if this sounds muddled but is there anyone out there able to clarify things for me !!??

    Love Cathy xx

  • Hi Cathy,

    I feel for you deeply and most of us on here will empathise with what you are going through, but we are all an individual and that we have to remember.

    There are 4 different types of ovarion cancer and all caused by different things, mine was caused by a faulty braca one gene which is complex in itself.

    There are 4 stages of cancer and 3 grades and there are several different types of chemotherapy used and in some cases even radium.

    Chemotherapy will either make us feel worse or better and quality of life needs to be addressed as well as rate of suvival.

    Some people make their own choices too, my brother decided no more treatment. He`d basically had enough but I do know that chemotherapy can keep people alive and well for quite a number of years or months.

    Sadly there is no clear answer for any of us I`m afraid to say - I had a meeting with my oncologist last week and he explained a great deal of it.

    Basically I think we all want answers but sometimes we are asking how long a piece of string is sweetheart.

    Cathy, one thing I`d like to share with you is this ~ I feel exactly the same as you do, I have little to no energy and on a bad day I sleep the whole day or need afternoon sleep up to 3 hours to be able to get through. All of my muscles ache and spasm, my bones and nerve endings are painful down the side where my tumour was unyet I am rest assured I have no cancer in my body as far as anyone can tell. Last night I was made to jump by a sharp stabbing /shooting pain right where my tumour was and this morning it feels as though someone is slicing me with a sharp knife in that same area.

    Chemotherapy does so much to our body that it takes a long while to recover from - this I feel depends greatly on each individual, how well you where pria to cancer, how much treament you had and what type of treatment will all make a difference I`m sure.

    There are also alsorts of reasons why we may feel so incredibaly weak and feeble - I have suffereed from Chronic pain for the best part of 15 years, I have a condition called finbromyalgia and along side of which I suffer from Chronic fatigue SYNDROME. The syndrome part to any illness makes the whole load of symptoms more complex.

    I know that a lot of what I am experience now is different to that that I have become accustomed too. But I am never quite sure if the fatigue is just the same old same old problem for me or because of the cancer and treatments. I guess its hard to tell however, I do know that these illnesses can be triggered by trauma or shock and even stress - I know that anyone going through what we are/have experience all three of these things.

    There is also another condition with the same bunch of symptoms called Post traumatic stress disorder. To be honest they are all eggs in the same basket as far as I`m concerned.

    But if you are constanly anxious then fatigue and pain may follow.

    I actually have friends who thrive on stress and the more the better they cope, this is because they love the adrenaline over load but most of us would callapse with exhaustion.

    I don`t aim to confuse you any further but I don`t think this is abnormal for some of us.

    Remember you are still going through a lot and have done so already in the last couple of years. I had my last chemo treatment in April 2011 - some days I feel on top of the world but if and when I over do things I feel like such crap again. I wouldn`t be able to exercise either but then I wouldn`t have been able to before the cancer. Some of us can and some of us can`t its often just apart of our own individual body make up.

    The only advice I can give you is to listen to your body and rest before you feel the need, pace yourself with everything. I find a tick list at the begiining of the week helpful, it enables me to achive the things I want to do throughout each week by spreading them throughout the week, this way I prevent premature burn out as I call it.

    Think of your energy levels as money in the bank - ONLY spend what you have but always leave some for a rainy day, remember to keep saving as and where you are able too. Once you become more wealthy, you will begin to feel much better too.

    This technique can be used for anyone fighting an illness. Its the only thing that truly workls for me so I hope this helps you too.

    Try not to compare yourself too much with others who seem to be doing better or worse, you are you and we are all different in so many ways.

    Its always good to share things on your mind, don`t bottle them up. chatting on here can give you so much freedom from anxiety.

    Lots of love from Tina xxx

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