Feeling vunerable

I will be the first to admit I don't follow my own advice and I have spent the last 4 months worrying on and off about my "routine scan"

I went for a week to Lanzerote to try and forget what is coming up on Thursday,I don't feel ill and have no symptoms, but like everyone else am fed up with the constant checks and how this horrible disease can creep up on you when you least expect it.

I don't feel I can talk to my family because they get enough of it from me and think I am fine now,but I knew you brave ladies would know how I feel.

I would really appreciate any words of wisdom as to how you get through, or any encouragement to raise my mood as feel really low at the moment

Sorry to off load

Carole xxx

21 Replies

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  • Hi Carole, sorry you are feeling down and out at the moment. Yes we all wish we could be anywhere except in a waiting room waiting for our name to be called. Sometimes it helps to take the focus off the whole illness for a while. Okay you have appointment on Thurs so tomorrow could you do something you like ? I cope better after doing mindfulness course. We are lucky to have a Cancer Support House here in Cork and you can go and off load on the trained volunteers anytime you wish, Sometimes you need to speak to others than family. I am making a better effort to get back walking, though with my hip I am not sure if I am doing more harm than good. I am off treatment at the moment but found a new complaint so kept busy with that. It is like never ending, but I know a young lady at the moment who has a very rare illness, no digestive system and has been in hospital for several months, She has a peg feed and a stoma. I earlier saw a video of her Mum bringing her dog to the hospital to meet her. The page is called Stripes for Eds on face book. This young woman has been in UK for treatment but there is little they can do, At the moment she is to ill to travel. So reading her blog has really put me back in my box, She is one brave girl. So no matter how bad we feel there is always someone worse off than us. I hope I havent upset you by this post. Mind yourself and I wish you the very best for Thurs, here is a virtual hug for you

  • No Suzuki,you haven't upset me,since I posted I do realise I am panicking over nothing, but I think we all do when we are left alone and then suddenly we are brought back to reality.

    Since I have posted we have decide to take our grandson to Legoland Windsor tomorrow and I am going to join in like the mad woman I can be when I am trying to over compensate for my thoughts.

    Thank you for your wisdom,as always

    Love Carole xxx

  • Enjoy Legoland a good way to brush the cobwebs away but you know its okay not to feel okay about stuff

  • HI Carole,

    It's a right old bag of spanners, this out on a limb thing isn't it.. It's like living in a bubble. I know exactly where you're coming from, not wanting to talk to family. My sister has gone into denial mode a bit now, that and she's cracking on a bit and has worried herself senseless this last year. They just WANT desperately for us to be well is all...

    If you feel well then that at least is a strong positive.

    My first check up is next Wednesday and they don't do a scan so I'm reliant on how I feel. I'm not sure watch and wait is a good thing..

    Anyway, will be thinking of you on Thursday. Enjoy tomorrow.

    The best of luck to you.

    Debs xxx

  • Thanks Debs,

    As usual you talk a lot of sense,I too wish you well for next Wednesday,

    Carole xxx

  • Dear Carole,

    I do hope that you have a great time and plenty of laughter at legoland!

    I don't think it's possible to forget the traumas of diagnosis & treatments and future scans will often prompt memories, fears and cause worry.

    For me it's about finding a balance with acknowledging what's happened and recognising how this affects me (differently at different times) and also having other things in my life as well.... We're all different so what works for one person won't necessarily another! I found Zumba Gold great for a while as a way to dance, laugh and exercise, got a dog who needs a good hour or so walk everyday, have done bits and pieces of awareness raising, become involved with a local project supporting refugees, act as auntie taxi for my nephews once a week, returned to book group and have an on-off project decorating the house.... It's a bit like scaffolding really but I still have days and weeks when I struggle but then scaffolding catches me from falling too far down!

    It's really common for those who love us to want to focus and hold on to thinking 'everything is better now' but also sometimes important for those who have had the diagnosis to be able to voice how we feel... I think this is why groups such as this can be so helpful and you'll also find groups at local Maggie's, Macmillan centres, Penny Brohn, hospitals and hospices doing a similar thing but face to face and with additional support, activities and guidance. As Suzuki as said, sometimes therapeutic activities such as mindfulness, yoga, art etc can be incredibly useful and at times, for some, spending a little time with a counsellor or Oncology psycologist makes all the difference...

    I realise that a great long list of possibilities might feel a bit overwhelming- you will know yourself better than anyone and perhaps one thing might resonate... It's so important to be kind to yourself and not add guilt or judgement that we 'should' be doing things differently. Sometimes it's the little things that make a big difference to how well we manage to hold difficult feelings. A very dear friend once told me at a really difficult time to look for three beautiful things each day, just that.... It's often a good start!

    Wishing you hope and strength xxx

  • Thanks Sunfluery,

    Lovely,sensitive reply.I really need to do something on a regular basis with people who know how I feel and am looking to go to Sidcup hospital with a support group.

    Had a mad, fun filled day today and it has lifted my mood.I do so much You wouldn't think I had time to think,but it creeps up on you when you least expect it.

    I'm sure I will be fine and if not I will deal with it,

    Thank you,

    Carole. Xxx

  • Mad and fun-filled sounds just perfect!! So pleased- much love xxxx

  • Carol I expected to jump for joy finishing treatment but that isn't the case, I contacted the Fountain centre in Guildford and am now doing the mindfulness there.

    I also have my appointment next week and it's on my mind all the time, thankfully I have mindfulness next Monday so will hopefully get it all out, I am also not having a scan just bloods.

    Enjoy Lego land it's a great place to take your mind off this horrible beast.

    Hugs Ellsey xx

  • Hi Ellsey

    You and me both with the jump for joy thing! I think once the euphoria is over you get a reality check as to what you have been through and the fact that your life is now taken over by this beast.

    It is up to you personally how you deal with it and I am coming to realise I need something locally.

    Let me know how you get on next week

    Carole xxx

  • There seem to be a few of us coming up for our check ups. Mine was next Thursday but has now been moved to the 10th November. Like others I shall only be having bloods but no scan.

    Hope we all get good news!

    Barbara

  • Hi Barbara,

    Wishing you all the best for your bloods on the 10th, I have them scheduled as well

    Love Carole xxx

  • Thanks Carole,

    Likewise with you!

    Barbara

  • Hi Caroles ,It's a bummer isn't it?! Just when you think you've got it under control,out it pops and plummets us into a state of fear and anxiety.Its normal for us warriors and if I didn't feel scared or emotional at times,I think there would be something seriously wrong with me.

    I've learned that we owe nobody time but ourselves,we need to give ourselves time to think and to do.I no longer make plans for the weekend or next week or month etc,what I do now is live for the moment ,which is a very difficult thing to do but it can bring up some wonderful surprises not only for you but for those around you.

    You had a lovely holiday and you will find away to have another lovely break even if it's just for a couple of days.xxxx

  • Thanks Annie,

    Don't we all just cope as best you can,

    Thanks to you lovely ladies that replied,I feel better now

    Carole xxx

  • Sorry I haven't replied sooner but phone has been out of action as I put it through the wash with my duvet cover. Anyway please laugh at my numptyness. I hope today went well. Please let us know. Have got my tablet in action now so can access this site again xx

  • Hi Hun,

    All ok,thanks for your care stupid me just needed all you lovely ladies to give me a boost,really appreciated,hope you are ok too

    Thank you

    Carole xxx

  • I am sorry that you are feeling vunerable and low at the moment. I know it's hard but try and take comfort in thinking that you wont always feel like this, ( I know I don;t take my own advice. Try to distract yourself, I know it's hard but you can do it.

    Hugs to you

    Damelza

  • Thanks Demelsa

    For your support, it is a shock, but I still seem to be ok

    I have gone away with a friend for retail therapy and a lot of natter, we have to cope as best we can, good or bad,because I think it all effects us all no matter what happens

    Really appreciate all your support

    Carole xxx

  • I am sorry to read that you are feeling like this. I think we all experience this particularly close to the scan or results appointments. When I had finished my first round of chemo and I had that fear and panic you have my Oncologist offered to see me more regularly than the normal check ups if that would help settle my worries. He suggested monthly until I felt more settled. They can check bloods and at least that may give you a bit of comfort that you are being monitored and not left for such a long period of time. When he offered this it immediately reassured me and I decided not to do it. I think the offer was enough on its own to settle me. I am on a trial so closely monitored now but I had a year treatment free and made the most of not having to fly to Manchester. It was as little as I could get away with.

    I also try to avoid sharing these dark moments with my family as it is tough enough on them all and if they see me panic then the whole house will shut down ! Come on here and share with us, we know how you feel and can offer support.

    Sometimes randomly I have a total and utter meltdown and then next day I am on top of the world. Maybe I am just a crazy woman in general even without the cancer ha ha ha

    Hugs xo

  • Hi Julie,

    I think I am a crazy woman that thinks I can keep it all to myself without family!

    This time I have got away with it because Iam still ok miraculously.

    None of us know what the future holds and I am a realist that has bought some time.

    I thank you all so much for being there when I needed you and would like to say come on here when you too need support or pm me because without this site I don't know how I would have got through

    Carole xxx