Hi there , to anyone who can lend their ears , I mean eyes. I just wanna say that today I'm really fed up, no, understatement , I'm peed off , totally peed off. Why is that ? you may ask . Well today is the anniversary /birthday of my o.c diagnosis., Whooopee f#####g doo !!!!.
So should I be having some kind of celebration ?? Nah , think I 'll pass on that , What about feeling sad about it .? Nah, I can't find any kind of emotion that I would want to waste on it,it's got a title , not as famous as breast cancer ,so what more does it want . It has taken a whole year out of my life . It has taken me away from my job , a job that I really enjoy, and I'm bliddy good at it . It has been filled it with surgery , chemo , radiotherapy ,numerous blood tests , etc, etc and driving round hospital f#####g car parks looking for a space !!!!
.Not only that , due to recurrance ,I have come to the decision of requesting early retirement through ill-health, B#####D. My good friend and colleague has requested early retirement too and is cockahoop that she has been accepted . Why can't I feel as ecstatic as she is . We should be skipping along the corridors at work like Morecambe and Wise , together , delighted together , but I'm not.I don't know how I feel , other than totally peed off (is being peed off an emotion ?)
Anyway thanks for listening / reading , I know there is a lot more of you out there who are probably more peed off than me today , for whatever reason,and I admire your strength and tenacity. Us o.c girls have got strong shoulders to buffer the setbacks and we keep on going , because we want to , we wont give in without a fight .
Well here's to my 2nd year and whatever lies ahead , who knows whats round the corner , non of us walk in a straight line any more.
Best wishes to all you girls out there ,
Suzie Que
xxxx
P.S I just took a phone call from my personnel officer , she wants to meet with me this Thursday to sign on the dotted line .............Ooooer
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suzieque
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At the age of 45 I still have 2 more months to the 'anniversary' of my 'you may last 5 years if your very lucky' diagnosis. Only to find out the 5 year bit depends on you being responsive to first line - carboplatin/taxol chemo which I was not. I know some ladies will say, "but we lasted 5 years, and we did not reuse carbo/taxol", but they did at least come down to normal CA125, which I did not. So now not only do I have cancer, but a cancer which does not respond to normal treatment for its type. Oh and for good measure it's highly advanced and high grade. Oh, and on the 'not so famous - or with as well researched treatments - as breast cancer' score, I also get p*ss*d off with everybody confusing it with Jade Goodie's fate - cervical cancer. That at least has a screening program (which I was cleared of 6 months before I was diagnosed of this) and they also have a good idea what causes that, but not so with this monster. Great! I am with you Suzie, all you can do is rage against it. I also have had to make do with crumbs from the table of the job I love, have had to go through periods where the best I can say I am doing is existing, constantly trying to calmly and logically accept my fate whilst being determined to keep fighting (eh - what a balance?). So I suspect I may limp along to my next anniversary, but that will be it. I have had some response to this second line chemo, so I will update a more positive update later this month if the response continues, but my oncologist is suspecting the response will be short lived. I don't feel hard done by, life came with no guarantees and there are those who die younger and I have had a good life also I have no real worries about those I will leave behind, but as you say Suzie Que, the only way I will be marking it is with a spit in the eye.
Rant over.
Love Lizzie
X
Dear Suzie and Lizzie
I wanted to reply to say I read your cries and your rants. I'm listening and reading and I'm there for you. I'm not in your place at the moment but I look to you and think I will be sooner or later. My turn will come.
Lizzie - how can your oncologist say that the response will be short-lived. Nobody knows. My good friend and neighbour had an incurable abdominal cancer and was given months to live according to the local specialist oncologist. She sought another opinion from a surgeon - no real support from the oncologist - he said it wasn't worth chasing up. She nearly didn't try it and we talked for ages. She tried the surgery as she simply had no other option. She had radical surgery in a Basingstoke Hospital, and she was in intensive care for 10 days. Seven weeks later she's up and about and she's been told she has a complete cure.
It wasn't our sort of cancer ... but it just shows,
Whoever said that we should accept our fate without ranting and raging? I am within two months of that magic five years and have had no recurrance so far, but I still feel angry, especially as it should never have got to the stage of surgery and chemotherapy at all.... It doesn't always help when people tell you to 'be positive' and all the other platitudes - sometimes you just want to break things! But I feel for you, Suzie - like you I decided to take early retirement from a job I loved and was good at, and as a result lost a good income, status and a lot of self respect. It has taken me two years to really come to terms with having a different life, and what has helped me is getting involved in some volunteering which has led me to do work with young people (as an ex teacher I suppose that was always likely to happen!) I can do as much or as little as I like so if I feel tired or fedup I can simply hide away for a few days.
Susie and Lizzie, what insensitive oncologists you both have. Yes indeed after my surgery I insisted on wanting to know what my chances of survival were and I was told 40%, so I thought no chance I shall show you. I never thought I would make 5 years, but I am now into my 6th year and hopefully, if my new treatment comes up trumps, we will be planning another cruise this year. It is my husbands 70th birthday at Christmas (I am not as old as that I might add lol) and I intend to be here to arrange a celebration for him
I don't think any Onc can truly say what our chances of survival are. We all respond differently to treatments and as in my cancer, my cancer type has actually changed due to the way I have reacted to treatments.
Of course like you both I get totally pee'd off at times. The day before my chemo (which is tomorrow) I get tearful, angry and just so miserable. I feel I just can't keep plodding on, but I do as I have always said I will not give into my cancer.
I just have total admiration for all you ladies who work through your treatment, how you find the energy I shall never know.
Keep going girls, ovarian is a bugger to deal with but we mustn't let it get us down. Were all here to support each other when times are bad.
It sounds as if you have every right to be pee'd off. As you say, it's a bugger! No rhyme or reason and there are times when all you want to do is sit and stare at nothing. It passes, though. I hope this dark time passes for you too, .....in the meantime, rant away!
Just know we're thinking of you
Love Wendy xx
Am reading and listening to all the rants and raves, sadly agreeing with all the comments. It's good to talk these feelings over with those who know where we are coming from and don't have to upset those we love because they cannot take away our pain.
We are all strong and determined ladies and will give this damned disease a good run for our/its' money( chemo brain cant think whose money!!!) We all seem to have a great sense of humour too
Luv'n'hugs to you all
Suex
Dear Suzie and Lizzie
Hope the sun's shining outside your doors today.
My work situation is a little different from yours in that my employer practically fell over themselves to offer me early retirement BEFORE I'd even had the final diagnosis that my cancer is high grade - the worst for survival rates, and very advanced. Now I think of it I haven't even told them that.
As a background to all this the most senior managers have been moved aside in recent months and we're awaiting the arrival of a new management team. It's dog-eat-dog if you're senior which I'm not.
Unlike Lizzie I did respond well to treatment. Imagine seeing the fallen faces when I told them that. I'm an expense and inconvenience because I didn't get cancer badly enough. If only I'd retire early with ill-health my employer would save some money and the retirement fund would pick up the tab. There wouldn't be any need to make reasonable adjustments for my disability when my cancer progresses. Lucky for me my immediate colleagues/friends couldn't be more supportive and wonderful and that's one of the reasons it makes it worth fighting to stay in the job I love and I'm good at.
So dear friends you're fighting this frightful disease at the moment. I've got it but my fight is because of it but is directed elsewhere. Just in case anyone reads this and is in the same situation as me please get in touch. You have the right to return to work with your disability and to be supported with reasonable adjustments. No one should retire early with regrets.
It gives me heart and courage that for all our different reasons we're in the fight together.
Hi suzie et al! It makes no difference how old you are when you realise you are no longer useful it bloody hurts! I was 70 when I finally had to admit that the job I had done for 10 years after my retirement had to go because I could not be relied on. I was good at it and made a real difference to a lot of people running an advice outreach for CAB. It suck, this bloody condition and if one more person asks me when I am likely to be cured I shall scream. Coming to terms with the inevitable cycle of treatment is bad enough for us all and to add to my woes my lovely GP Is retiring this week. He talked to me as an intelligent adult, now I have to break a new one in.
My OC is three on my grandson's 13th birthday in September so I shall drink a toast to him and damn the cancer! Not strictly accurate as I did not know it was OC for two weeks, just that I "had a tumour"!
from your point of view it is the birthday of your discovery of how amazing you really are! Up the bolshies and don't let this B condition grind us down!
Loved your emails...they just represent how I have been feeling since my last chemo....which was wednesday....you've put it all just so well. We all have different diagnosis and treatments but share the b.....cks of it all. I am waiting for my scan afetr 6 chemos (this is my second time round) and they are comparing it with scan from chemo 3 and if tumours have plateaued they will stop at 6, if tumours continuing to reduce they'll give me another 2.....the dr told me in most cases the tumours will plateau after 3 and not coninue to reduce. I said well in that case you'll stop treatment and I'll still have tumours and they'll just start growing again and she said 'yes'. I just thought...what's been the point in all this horrible treatment then? But I know really had to have the treatment, and that I'm very lucky that I'm responding to it. I asked her about the statistics etc and she said they could start growing straight away, or it could be months and that a year without treatment would be good. I felt like screaming at her....'GOOD' .........she was so calm and matter of fact....'GOOD'......'GOOD' that's good!!!!!!!! I told her about this site and the many varrying outcomes etc...and she said that these sites can be very dangerous because they sometimes give unrealistic expectations ,hopes etc. I must admit I just felt that she has no idea about what it's like to be in our shoes...and how important a site like this is for us. Yes most of the time we OC girls are strong determined women....but we need hope above all else...otherwise what's the point..that ball we could curl. into...... I too could rant for ages...feel a v strong anger and love at the same time......will post a question to anyone who has been in the same shoes as me...but love and strength to us all!!!!!!!!!
Hi everyone, can I join the bandwagon?!! I'v just passed my two year diagnosis had two major operations plus one hernia, chemo, and hey presto another, hernia has appeared,waiting for another scan to see if oc has returned. My son and his family live 300 miles away and he has been ill for the same amount of time as me, lost his job and cant travel (chronic pain) so we take public transport to see him, hence when on chemo no traveling, grandchildren getting older, so we are going down to see them over Easter just in case i'm back in the old chemo, I think I'm more worried about my little family than my o.c. I want to lend a hand to take some pressure off them,silly things like ironing,babysitting etc. God.!! got to stop rambling, I'm making myself all tearful AGAIN. Love to you all, its great to have a rant and in my case ramble. Sue x
Hi all you brave ladies, I am now on 2nd line chemo being free first time for 6 months I so know how you all feel. I have had a really low day today thinking is it all worth it but somehow we get on with it I had my first treatment yesterday different from last time and though I responded really well first time it still decided to return. Like us all I wish there could be more research into this horrible silent disease. Hugs to all nikki xxx
Well said ladies. Can I join the rant?! This disease is the complete pits. I can't beilive I'm dealing with it in my early thirties. It's cost me so much already...caused a stillbirth of my third daughter, ruined my wedding day last year (reoccurence diagnosed weeks before), stopped me enjoying the daughters I have because of the 3 rounds of surgery and now 2nd regime of chemo. I do wonder about the point of it all yet how can I accept that I will die while my children are still practically babies? Never see my grandchildren, be buried before my two grandparents that are still alive? Let my mother bury another daughter?
I put on a brave face for my family yet inside I am raging at the indignity of it all.
On another note to the person who mentioned surgery at Basingstoke- I have been referred there for more surgery. It's called cyroreductive surgery and HIPEC- more commonly used for PMP cancer. It's a HUGE operation and very long recovery. I'm horrified to think I might have it done yet at the same time it gives me hope that I might be around for a little while longer.
I do hope if you go ahead with the surgery it goes well. My friend was given almost no hope at all to even survive the op. She was in intensive care for 10 days and was home again in just over 2 weeks. It's worth a go but do be aware they will give you all the warnings and bad news first. My friend only tried it as she had absolutely no choice at all ... and here is is having coffee with me later today cured. Take care, keep talking to us.
Just an up-date from yesterday's rant. Well, I'm still the same , still peed off but to say I'm glad that I'm not alone in feeling this way would be wrong .Your blogs were so overwhelming and It makes me sad to hear from those of you who are worse off than me , young families to care for ,some of you are younger than me ,some with much more recurrances and failed treatments than me.
It's true what they say "there is always somebody worse off than yourself".
So in that respect I feel . am very fortunate and my heart goes out to each and everyone of you . I so admire the strength and true bliddy grit that you's girl's possess to get you through your journies and to those who didn't climb aboard our" ranting bandwagon" who regularly blog on here ,my thoughts are of you all too. I wish we could all meet up , under one massive roof and share our heartache in a realistic, compassionate way , maybe we will , someday.
So until then ,I gotta pick myself up, dust myself down and start all over again and not let this b#####d win ...
As you may be able to tell, your blog really hit a chord with me, I had been thinking about my pending 'anniversary' and it really helped to bleed all that venom from my system! Thanks also to all the ladies above who sympathized and offered support to me as well. The fight continues -- passive we are not!
Hi everyone I feel that we are all kindred spirits brought together by our cancer journey. I am now four years into my journey and as some of you know (be ause you have been there for me at my difficult times). I have womb cancer and ovarian cancer. I too lost a job I loved and thought I was good at after 37 years. I had chemo and radiotherapy which unfortunately has left me with radiation enteritis. Now I am being investigated for bladder problems. The thing is even though I feel down I am still here to tell the tale and feel I will be for some time to come. I have friends who have been diagnosed with terminal cancer over seven years ago. So take note ladies we can beat this or at least live with it. Let us hate our position but love the fact that we are still fighting. When I got cancer my cousin rang me and reminded me that, " we are strong women". Love and hugs to all you brave women out there.
I just have to join in. I'm an early recurrer too, I'm 47 with 8 year old twins. What really pisses me off (well one of many things) is the oncologists that others have mentioned that tell us not to get our hopes up. There is good evidence that if the doctor believes the patient is going to get better, the patient believes they will get better and this actually has a physiological response in the patient ie boosted immune system, neuropeptides send the right messages etc. The oncologist I saw told me I could only expect a partial remission and then six months later more chemo, well I thought that just wasn't good enough and I decided to go to Germany for hyperthermia instead, waiting to see what the results are but still feeling lousy and can hear the ascites building up again.
Hi again, I now feel guilty with my rant as a lot of you have more problems than me, especialy heffmeister and Jane who have such young children and I really dont understand the surgery and what it entails, also the hyperthermia treatment? would you let me know ? and busylizzie with your ascites always building up. Anyway to one and all, I will be thinking of you and would love to have a group hug ! I really feel I know you and have we have become friends Love Sue x
You rant away. This monster affects us all differently and the only consolation is that we can vent, find support, inspiration and kinship with each other.
Sue, don't feel guilty this disease is so hard on everyone young and old.
Are you asking about the surgery in Basingstoke? If so from what I understand it's bascially a very radically debulking, stripping out the entire peritoneum and removing all non essential organs like gall bladder, spleen, etc and any organs with disease like removing sections of the bowels etc, then if all visable cancer can be removed they fill the abdominal cavity with warmed chemotherapy solution over the course of several days. It's know as MOAS in quite a few circles (Mother Of All Surgeries). Not for the faint hearted or frail person and I don't think they will do it if the cancer has spread outside abdominal cavity.
I was reading some inspirational messages on facebook last night and one struck a cord with me:
"If you find yourself going through hell, keep going" I think Winston Churchill Said it.
Heffmeister, thanks for the reply, I've never heard of this surgery, it certainly sounds radical, are you going to have this? please keep us up to date with any of your news. Lots of love and hugs to you x
I don't know if I am situable yet but yes if it's offered I'm pretty sure I would have it. I've been referred there and have have all my info like scans and histology but they haven't actually see me yet. My surgeon consulted with them when my first line chemo finished and hadn't worked and they advised it was not a good time to operate because of ascities and disease being too active. They wanted me to try 3 courses of another chemo to try and get things under control- I have my third dose on Monday and going on my symptoms it seems to be working.
They do the surgery in Manchester too at Christie's but that's the only other place in the country.
Well... That is it ..I have signed on the dotted line. I am now officially retired from work. I am not sure how I feel about it . Numb maybe? No tears, no joy, no drum roll and no one cheering . I don't want a "leaving do" or a bouquet of flowers and champagne and bosses shaking my hand saying" how much they are gonna miss me " I couldn't handle that. I haven't worked for nearly a year , so they should be well used to me not being around.
Awe well, never mind, I gotta box on.
It is just another chapter in the life of little me.
I'm gonna find some voluntary work that I can do as and when I'm able .
I wonder what this illness has instore for me next.
suzieque, I do voluntary work for Barnardos, two mornings a week in the shop,its been great, not sitting watching daytime t.v and made loads of new friends who have also been a support. it took my daughter-in-law to say to me how old are you? your not 80 (although there are lot of fit 80 year olds) as its voluntary you can go when you feel well enough. Hope it works go and make new friends.Love to you Sue x
Hiya Sue, Yeah I will definitely be doing something .I'm not one for sitting round watching the telly , it's a load of tosh anyway . I have been doing fundraising for several years now for a charity named Cancer Connections , which is a local drop-in centre for patients , familes and friends . It offers various treatments and therapies , benefits advisor (funded by Mcmillan ). They have just bought a new building , a beautiful bungalow through monies raised and donated by caring ,charitable people. I've been going for reiki therapy and to see the girls ,on a regular basis. This is where , I will be offering my services , even if it is just for the coffee mornings . It is a hive of activity and it will be a good feeling to feel useful and helping others too.Joe Mcelddery , is a local lad , was there , singing for us at Christmas and Jade Thirwell (another local now with little mix) was there on tuesday and has agreed to be a patron for us.
So yes, I wont be sitting around being idle , besides Spring is round the corner and I got some living to do ......
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