Bitter or not

Hi Ladies

I really have been feeling a bit down over the last week and it does come and go but this time seems moreso (had Avastin a week ago No. 14). I can't quite put my finger on it and whether it's coming to the end of the year - I had my surgery on 29th December 2015 - it just seems so much has happened and I want to jump 'off the bus' and hide somewhere nice and quiet and just be alone.. if that makes sense! My treatment ends mid-Feb, a CT scan will take place, my CA125 sits at 5 which is great but I've really had enough of hospital visits, infusion and self-injecting.. I guess I just want normal Michelle back but she's never coming back and it does make me feel quite sad. I have one child a son who's 39 and I've noticed the phone calls are less as he doesn't want to talk about this illness and when I see him I put on my mask and pretend all is ok. It also helps as I don't look ill which so many say how well I look and as you ladies know we're not! Am I just having a woe is me day or any suggestions how to snap out of this bloody awful feeling... thanks for reading. Love Michelle xx

19 Replies

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  • Hi Michelle, your bound to feel like you do as like you we have been through a lot during our journey. I also think it's the not knowing what our future holds for us all.

    I had chemo weekly for 6 months so I'm very happy to just go every 3 weeks for my Beva.

    I'm 3 1/2 months since my last chemo and just try to enjoy doing normal everyday things and getting my life back to as near to normal as possible.

    I have a bucket list so I've started to tick things off now and this is good therapy.

    I'm sure you mood will lift and you can start to put it behind you.

    As for your son, I'm sure he feels your doing better so he's moving forward too. I always said the family have the hardest bit my part was easy.

    Hope you can enjoy Christmas, I certainly will as I wasn't sure 6 months ago if I was going to be here.

    Xx

  • Hi Ann - thanks for replying. Yes an awful lot to deal with and guess I'm reflecting. Your bucket list sounds a great idea.. I'll have a think about that when I'm lying in bed tonight.

    You too have a wonderful Christmas and me too I'm glad I survived the year. Love Michelle x

  • Michelle I am sad to hear you are feeling down. It is a kind of weird anniversary to think back to your op ( we are both December ops) and to my mind there is nothing so hard as the feeling that we should be jolly (it's Christmas!) and all around are expecting it. I really share your sentiment. My suggestions are really suggestions to myself and I hope I listen to my advice:

    I have heard that our local hospice offers loads of creative workshops, walking group, counselling group and a cake bring and share. I aim to join in with this. The hospice is keen to offer respite and recharging of batteries and I will ask my onc to refer me. I wonder if there is something near you which is similar you might try?

    I find a walk in the countryside or our woodland ( with my dear old dog) helps lift spirits. I can't go far as am 10 days post op and really miss the positive effect this has.

    Our library has some interesting sounding reading groups I mean to join in January.

    I have a couple of friends whom I see every week and this is really helpful.

    I don't think any of this is original but may help. I would also suggest you speak to the ovacome team or / and your ONS to see if there are any support groups or counselling they can offer. I think mental wellbeing is just as important as physical health but often relegated or underfunded. I hope you can find the help you deserve as you should not be having to deal with this as well as the cancer related issues.

    Please take care of yourself and keep posting / updating if you feel up o it.

    I'm not one for hugging people I haven't met but I send you warmest empathetic wishes.

    Netti x

  • Hi Netti thanks for replying. I like your suggestions and will look into these. I did have counselling which I paid for privately (the NHS had an 8 week waiting list). I chose to stop as for me it made me more upset talking about it rather than a relief to get it off my chest as it were. I'm still unsure whether to go back. I've returned to work now 5 days/5 hrs a day and my role can be stressful plus it's usually more than 5 hours before I go home normally exhausted! I'm not very good at resting either, I tend to like being busy, work is my therapy or I could possibly be in denial which I have thought of. I plan to think of different things to do in the New Year and perhaps join a group or find a new interest! I'm currently living with my step-sister and husband as was living alone and became very ill and hospitalised during chemo (all my belongings are in storage). I'd like to get my own place again but my sister thinks it's too soon for me to move out.. I've been here since April! We all get on fine but I miss my personal things etc.. I'll keep posting and let you know how things go. Love Michelle x

  • Michelle you seem to know some of the influences which may be affecting your mood - not having your own space and things for a longish while would make me feel disjointed and I can imagine that is hard for you too. I remembered my massage sessions (paid for by me) which I find really really helpful....

    Take care

    Netti

  • Totally with you on this - our timings are identical and I finish Avastin in February. I think the turn of the year is a difficult time as you don't know what's coming. People see me as better and stop mentioning it, but it's still a big deal that changed our lives. I felt better after reviewing the good things of 2016 and realising I'd done a lot despite the cancer. Let's hope for good days ahead.

  • Thanks Harpist for replying and understanding how I'm feeling. Yes haven't our lives changed and the not knowing what's next which I do try not to think about too much. Nobody can understand being diagnosed with cancer exactly how we feel inside even if we look well. I feel at times I should wear a banner declaring this. It was also very different when I didn't have hair... it's people's perception of you. Bring on the better days and a brighter 2017 I say! Love Michelle x

  • From one michelle to another I just want to hug you... we have to put a face on smile and appear to be happy my friends tell me how well I look... I look at myself and I see a grey person a shadow of my former self not weight wise tho I've put all weight back on ... so even that gets to me ... my son too doesn't want to hear about continuing illness so I'm fine ... tbh I don't want to even think about been unwell I want it to be resigned to the past but it's affecting me now !!! Sod the little beggar ... I have no great advice but I just wanted to send you my suppprt and say your not alone 😍

  • Aww hi Michelle and thanks for replying.. yes we're all in the same boat aren't we.. poxy cancer! It's lovely having replies back showing support because we understand us and our emotions at times in the depths of despair. Sending you a big hug back 👩‍❤️‍👩 xx

  • Hi Michelle

    I also hate all the medical appointments and being dictated to by them. It all feels like a loss of control. Which it actually is!

    I think that only those who are undergoing the condition really understands. My other half although very supportive seems to think that now I have had the op that everything is back to how it was. Unfortunately that is not how it works. As for the number of people asking how are you- well no one want details really do they.

    So the people on here understand.

    Take care

    Fay

  • Hi Fay thanks for replying. Yes true they don't want detail but at times they get the detail and I watch their faces because this disease hurts me but they don't see it. After the diagnosis, the shock, the op, the chemo and everything else that's thrown at us.. it is the toughest journey ever! Thank goodness for this forum. Love Michelle x

  • Hi Michelle,

    I feel the same and I finished 2 1/2 years now on this journey,

    I have just finished 6 months of caelyx and now will try taxol.

    Also I understand how you fell about your son one of my daughters is the same she does not want to hear about it, this is how she deals with it, I understand

    But I also have a daughter who is my full glass and always makes me feel better.

    The advice that Netti gave you was great and I will also try and take her advice in the new year.

    Great news about your 125 being 5.

    We have my grandchildren and family coming for Christmas lunch and I don't want to spoil it for anyone by being down so need to put on a happy face.

    I hope this feeling will pass for you and let you enjoy Christmas with your family.

    Merry Christmas from down under

    Lorraine xx

  • Hi Lorraine and thank you for replying. I wish you all the best with Taxol.. how long will this be? This certainly tests us and our family. I also have one granddaughter who I totally adore she's 6 and knows something about her Nanny not being well but not what it is. She really does take my mind of things and love having her around me.. my ray of sunshine! Have a wonderful Christmas and New Year Love Michelle xx

  • Hi Michelle

    I hear you. My timeline is similar. Was diagnosed just at the start of the year so Christmas and New year will always remind me of being ill.

    I think it's important to recognise and grieve for the life that we no longer have. Whatever the outcome and no matter how positive the outcome is we can never change the fact we have had to deal with this. I'm on another support group as my youngest daughter had a brain tumour and us parents have discussed the same thing. Once you have looked a monster in the eye the image will always be there.

    I must say I have found it easier to deal with this after witnessing the children (including mine) dealing with the treatment of brain tumours. The strength of character of the little ones are truly amazing. My youngest is 6 the same age as your granddaughter, such a wonderful age so full of life and wonder especially this time of year.

    i do hope you have a wonderful Christmas. We are hoping for a very boring 2017 no drama and i wish the same for you.

    Mxx

  • Hi Lovely,

    All these Ladies have given you fantastic advice my special person said the other week she's sick and tired of being told to stay positive although myself I'm not going through it I understand where she's coming from whenever we see people we know it's 'How are you?' (Conversation later) 'oh well stay positive' I honestly want to say to them is everyone on repeat or something? That's all we ever hear!

    My point is it's absolutely fine to have c**p days and feel oh for f***s sake and to snap out of it I would suggest you find something you like to do that is totally unrelated to cancer mid Feb will soon be here and then hospital appointments will be every few months it's an absolute pain in the a**e every 3 weeks up and down at the hospital but there is light at the end of the tunnel xxx

  • Dear Michelle, this is the one safe place I've been able to share my darkest feelings and express anger and pain. Everyone understands and though we all 'do' this illness differently we can empathise and offer advice. I've always been really pleased when I felt able to respond to someone's post.

    My mind/emotions work in calendar years rather than anniversaries. So I can safely say 2016 was rubbish and 2017 will hopefully be better. I get why you sit at the end of this year feeling low. You'd be in your own home with your possessions around you if not for this rubbish illness. I find myself sad when I have quiet reflective moments. It's only because my life is so busy with 2 young children to look after that I feel relatively steady. It's at night when my children are finally asleep that I feel sad and anxious. Being completely shattered from running around all day means sleep comes but the hot flushes and bad dreams wake me around 4am.

    your treatment ends in February and you will slowly let the 'old Michelle' creep out. We all need a little bit of time to pass to recover from the treatment or prepare for new treatment.

    I'm sending hugs too (I'm not very good at hugging in person but very good with virtual hugs)!

    love, T. X

  • Hi Michelle! I remember early on after my surgery and first couple of treatments praying I wouldn't look sick and would feel well enough to fake the smiles when people came to visit. Especially around my grandchildren. Several treatments and months later the prayer was answered. Although I still felt poor, I could 'fake it' for short periods of time when friends and family would visit.

    At first it was great because they treated me normal and (for them) life was back to the way it should be. But it didn't take long for that saddness to start welling up inside of me. Although I looked well on the outside.....on the inside I was far from it. (After finding out I was platinum resistant on the first go round I started second line treatment right away.) While I didn't want to sit around and talk only about this hateful disease, I still wanted some acknowledgement that it was real and awful and scary. Sometimes I want to just pull off my wig and scream 'See.....things are NOT normal and okay right now!'. The logical side of me knows that is silly. :) I pray a lot for a calm mind and joyful heart. And to be thankful for every single good day that I don't look sick.

    I wish I had magic words to take away your sadness! I hope you can take some comfort in knowing you're not alone in your thoughts and feelings. I think all of us on this site have had them in one form or another. What a great support all of you ladies are!

    Merry Christmas and God's blessings to you!!

    Jodi

  • What really good replies you've had, Michelle. So much resonates with me for so many different reasons. Personally I hate feeling under the weather yet attempting to look my best, only for people to assume that everything's OK now. Then my normally sympathetic aunt told me today that she wasn't going to let my cousins know about my second line treatment starting - she seemed to think that they needed protecting, rather than being concerned about my feelings. How odd. I've put it down to her getting on a little, and not realising the impact of what she was saying...

    I had my surgery on 30 Dec 2013 so it's very real still to me at this time of year too. We will get through this together. Thanks to all the support from everyone here.

    Caroline x

  • Hi Michelle,

    You are not on your own,I have a 29 year old daughter and a 28 year old son and both of them are out living their own lives and never ask how I am and I think they hide their heads in the sand,it's on a need to know basis,so I know where you are coming from.

    If you find somewhere to go and hide that is a sanctuary,let me know and I will join you.

    Life is hard,but you will find a way of picking yourself up,we all do,otherwise the alternative is too hard to think of.

    I sing,go to concerts,dance,look after my 3 year old grandson,the sillier the pastime the better.....trivial is good😀👍😁❤

    Have my dark days we all do,each day is a new one and dont forget you have all of us😀Xxx

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