Confused and frustrated

It feels as if this has been such a long process, yet really it only all started rolling in August, so two ops in, the first to remove ovary, tube and cyst, came back cancerous, so full hysterectomy including cervix and omentum as a precaution, biopsy came back all clear, yet still I have the chemo dilema. My consultant says this is the best treatment, get any stray cells mopped up and once the treatment comes to an end then I will start to feel better. So why am I so scared, I thought there was nothing scarier than surgery but reading about chemo and how it is done is worse. At least in surgery you are asleep!

I can't imagine strolling in and saying, hi, I'm here for my chemo, I want to start running and not stop until I'm so far away nobody can find me. What if I go through this and it comes back anyway. I haven't felt well since my second operation. I went to the doctors yesterday which seems to be the extent of my trips out and felt exhausted how will I cope with this, and will it really make a difference, or am I burying my head in the sand, I wish I knew. I wish I could answer the questions myself, poor hubby thinks I should just go ahead and do it and then move on with life, but what if it doesn't work that way, what if I get ill from the chemo and end up worse than I feel right now.

I just don't know where to turn or what to do, the oncology nurses are lovely but it's so matter of fact to them, this is what you should do why would you not want to do it. I'm pretty needle phobic as it is the thought of having a canula in my hand again after the last op makes me feel even worse. The bruises have only just gone. I've still got swelly belly from the op and I feel hot and cold and want to cry.

I know that statistics are not the only guide but as a researcher I feel compelled to search and find and explore and answer until I'm dizzy. I wish someone could make this decision for me, I wish it wasn't nearly Christmas, I wish ....

18 Replies

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  • Have you assessed how the surgical menopause is affecting you? It can be nasty, and add to the scared feelings! It certainly can leave you feeling panicky and indecisive, too. Recognising this might be a little comforting??

    Isadora.

  • Yes well this is your problem (researching all the time) it doesn't help your sense of well being... I know this is your nature (and your job) ... but you do need a distraction to get through this... perhaps you could use your researching skills and research something more lightweight ?? Something that might be fun...nothing to do with your condition.. as you know being a researcher that statistics are meaningless...for instance we are all on here with OC some more advanced than others but are doing ok..and you perhaps should concentrate on this...and take strength from this... the only way for you is forward (onward and upward) it really does sound like good news for you.... and we can all take encouragement from this as well...I really do understand where you are coming from (we all do) but please take strength from the fact that a lot of us have been there and are out the other end best wishes love x G x

  • By the way it won't just be "hi I am here for my chemo" they are far more caring than that...particularly as it's your first time... you will be cared for...they will be very aware of the fact that it is your first time.. and will monitor you carefully there are procedures they follow ...love x G x

  • Oh Lily-Anne, We feel for you. We have all been exactly where you are in one way or form.

    I'm only a month ahead if you, kicked off in July. And am still just as up and down but getting better bit by bit. Nobody can tell you what to do -- but please, you must listen to best advice -- and if that advice is for chemo then you may have to bite the bullet. No it's no fun. But it moves forward and it passes. Whether you do it, only YOU can decide. You have to get to place where you feel a bit more back in control and I think it will be much easier once decisions are made -- then you can get on and refind stability.

    Needles are the devil esp if you really really hate, fear, shake, cry and generally make fool of self (me) -- but they can be faced. Think about it -- they aren't in the same league as the life stuff. Only a barrier and in my opinion *not* a big enough one to gamble your long term health on. Try to put them in the right place in your head if you can... It's hard but you sound perhaps tougher than you realise from reading this. Funnily enough a new "normal" will emerge to take you through, honest. Still seeking mine TBH but getting there....

    I could ramble more but won't. Take strength from the slightly mad bunch on here, they've faced it ALL.

    XXXXX

    Sue

  • Lily-Anne, I ended up having a full hysterectomy and I remember only too well what you are going through and a lot of what you are feeling I am sure is to do with the surgical menopause, if my memory is anything to go by. Its still early days for you, you've had so much to cope with already, like the diagnosis and the operation so give yourself time to heal, I promised you wont always feel like this. Chemo can be tough going for some people, but the people are so caring there and its not as clinical as it sounds.. and the chemo does work for a lot of people so its worth it in the long run to try and get rid of any missed cells. I am not going to lie to you, there will be days when you feel bad, but I promised there are days when you feel like the old you again! And the bad days will get less and become a memory. It is a very confusing time for you but it wont always be..

    Big hug to you

    Jules xxxx

  • I've been weighing up the odds. Chemo is quite a harsh drug and so many are saying they feel ill still 2 years post chemo, with joint pain etc. The side effects are harsh and seeing as they don't even know if there are any stray cells it seems like a huge strain on my body. The research shows that ovarian cancer is quite resistant to chemo, and I know I sound like I'm talking myself out of it lol. My current thoughts are to not have the chemo, despite the protests from my family. Financially we are struggling with me not working I could be back at work after Christmas rather than waiting for months.

    Thanks for your responses, please keep them coming.

    LA xx

  • Lily-Anne, I can see what you are going through, but try to take the line of optimism rather than thinking it will all be bad for you. I know it's easy for me to say, but I have been through some bad stuff that I don't go into on here. I decided I couldn't change outcomes but I could change my reaction to the situation I am in. It's better for your health to be positive too. Also, think hard about not going along the chemo route. If your consultant has recommended it, that is for a reason! Not everyone has bad reactions. It may save your life. That is what is important to your family, I am sure.

    I know it's hard though. All the best,

    Love Wendy xx

  • Lily-Anne, I am a researcher and statistician and and as you know, medical statistics are usually based on samples and the different variables are never taken into account eg the general health, age, previous medical history, response to chemo eye are rarely taken into account when survival rates are calculated. Hence it is not always a good idea to make life changing decisions as to whether or not to have chemo on statistics. Moreover, there are always 'outliers' (ie figures that sit outside the Bell curve) which means that there people who defy the odds all the time. I don't mean to teach you to suck eggs because I'm sure you know all this but you can see where Im coming from.

    You are a statistic of one:

    n = 1

    Jackie

  • Totally behind Jackie here -- you simply aren't in position to make a life changing medical decision via partial self research. You dont have that capability. Bugger the statistics they are trends, averages, tendencies and you have to focus just on important decision for you NOW. Do you choose to fight or just wait and see and hope. No way to be back in control...

    We all sound to being a bit touhg on you here, please know its also with huge empathy, this is a truly s£!tty thing to be facing. Just face it as sensibly as poss...

    X

  • Lily-Anne

    Are you stage 1? There is an American site called "Inspire" where women with Stage 1 Ovca have had discussions on whether or not to have chemo. It is such a difficult decision, maybe if you had a look at them you could clarify questions to ask your oncologist.

    All the best, Monique x

  • Dear Lily-Anne

    I feel the first thing you should be doing is talking to a professional counsellor who will help you to get all these thoughts on track so you can come to a rationale decision. Please also see the hospital about your needles phobia. I commented on one of your earlier blogs about the help my sister has had to deal with this. If she hadn't tackled her phobia she wouldn't have had chemotherapy and she would certainly not be here with us today enjoying a wonderful life.

    Putting it bluntly Ovarian Cancer kills. The first op didn't stop the growth of the tumours so it was necessary to have the second which has vastly improved your chances of a full recovery. I just wonder how much worse you'll feel if you refuse the treatment the experts in the field have recommended and the disease progresses?

    There's a lot of help and support for you on this blog. I think there's some very wise advice. I wish I could help more as you're in turmoil and that's a bad place to be.

    Sending all the love and good wishes possible.

    xxxx Annie

  • Thank you everyone, based on my chat with my Macmillan nurse I am not ruling it out completely, but she did say a few things that I need to take into account. Carboplatin attacks 70% of stray cells, Taxol 5%. I would have a combination but 75% doesn't sound a lot to me. The Taxol has the most side effects so am going to ask about just having carboplatin. My first op did remove all of the cancer contained within the cyst, the second op was preventative treatment. I am stage 1A as it hadn't spread beyond the left ovary, but it was grade 3 so fast moving which is why chemo is considered to be a good move. Practicalities worry me too though, money, I've not been married long so a huge strain on our relationship. I lost my son when he was 18 so nothing in life is guaranteed.

    Also she said if I have chemo and it comes back the chances are it was going to come back anyway, so there is no guarantee of total prevention, on the other hand do I want to learn the hindsight lesson.

    Seeing consultant on 4th December, so hopefully he will answer my questions, if you can think of anything I should definitely ask please say.

    LA

  • Hello LA

    Stop scaring yourself! If the advice is for you to have chemoand you're uncertain, you could ask for a second opinion.

    Have you asked yourself how you would feel if you did not have chemo and cancer shows itsself again? Once you've made a decision do you stick to it easily or find yourself for ever wondering 'If only I had chosen differently'?

    The 'no chemo' option could lead to endless anxiety, but only you will know how well you would cope.

    Millions have had chemo. Whilst it is something we would all rather do with out, it hasn't been that bad for me. I'm on carboplatin only- no sickness, just weary for the first week, and taking it steadily for the last 2 in the hope that I'll be fit enough for the next dose.

    Love Christinexx

  • I agree with you there Christine. I had carbo-platin only due to an admin error. I should have had Taxol too. This is the gold standard and when I have a recurrence I am advised to have the two.

    Carbo-platin alone is an option and it tends to have less side-effects. The most obvious being you don't lose your hair. I had just about no side-effects. No nausia, no loss of energy, no pain or neuropathy. I count myself to be lucky this treatment has put me into remission. Not everyone is so lucky. Some women are platinum resistant and don't even have the privilege of any effective treatment at all.

    Thinking of it this way perhaps puts the offer of chemotherapy into perspective.

    Xxx love Annie

  • My cancer was very much more advanced than yours. Just want to say I am on my 4th chemo in 4 years. It is hard and for a week after each infusion I am only able to take our dog for short walks and do the basics.By the last week I am back to enjoying life with my husband, family and friends. However I have been lucky enough to have 6 months remissions and each time felt back to normal, hiking, cycling and gardening and travelling with my husband to see our son, daughter in law and their gorgeous little boy born 2ys ago. Without chemo I would not be here.

    You are very likely to get cured at your stage. I actually think chemo works very well for most people with OVCA. What ever you decide I wish you all the very best.

  • Hi Lily-Anne. There is so much wise and helpful comment here that I don't have a lot to add. However, I completely sympathise with your money worries but don't assume that you won't be able to work while having chemo. I have just finished 6 cycles of carboplatin and paclitaxel and worked all the way through with just a couple of days off each month. I know I have been very lucky but my chemo brain only lasted a couple of days each time and work were very understanding when I was a bit tired.

    Only you can decide what is right for you but don't assume yhat chemo will be a nightmare. Everyone is different but it will probably be nowhere near ad bad as you fear.

    Love Helen

  • PS sorry for the terrible typing but I am posting this from my phone!

  • Lily-Anne... you've received so much good advice and I really can't say anything you haven't heard already. Just to agree with everyone else that chemo isn't as bad as you imagine and I know a lot of people work during treatment. Everyone handles chemo differently. If you do decide to have the chemo it may be worth looking into any benefits/sick leave you may be entitled to (if you decide to take time off from work). Isn't a little discomfit/inconvenience of chemo worth it in the long run, if it improves your odds of OvCa not coming back? As in life there are no guarantees, but we can but try. I'm sure many of us here would agree that you are one of the "lucky ones" diagnosed with stage 1A, as opposed to stage 3 or 4. I'm sure your consultant will talk through the pro and cons at your next appointment and give you all the information on which to base your decision. Ultimately the decision is yours, and it will be the right one because you made it!

    Wishing you all the best.

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