Good Friday in my Head

Hi Ladies,I really don't know what's wrong with me all week.My emotions and brain feel like it's Good Friday.Everything closed and silent like the old days. I am not getting any enjoyment from things no matter what they are.I got a very special invitation to a Garden Party to meet someone who was on my bucket list and yet,I've put the invitation away and have little if any interest in it.

I'm not sure if there comes a time on this journey where you switch off,where the emotional see saw and swings take its toll.i fight for positivity and for keeping everything as before diagnosis as best I can,when I'm ok the family are ok but,when I'm not ok what do I do? Do I still play the ok game? I think it might stem from when I was first diagnosed and I googled my illness and Dr Google gave me a prognosis of 18-24 Mts and time is running out.I find myself saying a lot now,"I wish it was last year,I was on Avastin and though I had aches and pains ,I was ok because,I thought it was doing me good!ive spoken to family members about it but they are at a total loss.One family member said"I don't know what to say to you,this isn't you at all,you've always been upbeat and a positive attitude,maybe you need a kick up the backside".Did I lull myself into a false sense of security,shielding reality behind a cloak of good intentions?

I know this isn't like the posts I usually right and forgive me for droning on but,this is how It is and if any of you ladies out there has suffered something similar you might be able to help.xxxx

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  • Hi Annie, I really don't know what to say to you except like us all you are having down days only yours have all come together. I know what you mean about prognosis of 18-24 months ,my Oncologist mentioned 5 years to me and all I can see in my head is it will be 4 years since diagnosis in Nov and as I am on my 3rd lot of chemo in three and a half years does that mean time is running out for me. I have myself convinced that it is only my mind running away with itself. You have had a very bad time over the last few weeks so I think any normal persons mind would be all over the place. I am sure some of the fine ladies on this site will come up with a more logical explanation. Try and get out in this beautiful weather we are having even if it only to sit in the garden and flick through a magazine and eat ice cream . Kittie

  • HI Annie, I agree with Kittie, you have had a tough few months and especially in the last two weeks. It is bound to make you feel down and just feel like doing nothing. But you will come back up out of this, would you go to Cork Arc House and have a chat with a counsellor, everything you say is totally confidential. It might be what you need, the house is an oasis of calm to me and everyone is so nice, even ring them if you dont feel like a drive at the moment. It is okay to feel down so be kind to yourself, you got a lovely invitation why not go instead of why go? Dont be hard on yourself, it is okay if today you feel drained and tired, it is normal after what you have been through. As regards time frames ladies, I dont believe in it for one minute and I dont want to know either. Okay that is easy for me to say when I am chemo free at the moment. My friend who has been on treatment for Leukemia for twelve years asked her onc at the onset how long have I got? The answer was how long is a piece of string, it can be any length. We have no guarantees in this life but my gp said to me when I was first diagnosed, " stay in by the wall and mind the buses". He has a patient older than us who was sent home as inoperable and she still walks past his surgery window every day. So that inspired me and I am passing it on to ye.

  • Oh Annie. One day at a time. That's all we can do. Look for the best in today - the fact you were here to enjoy another glorious day. You've had today to make another memory with a friend or a family member, to enjoy your life, to experience another positive emotion. (I laughed so hard at my kids this afternoon I thought I'd burst some stitches!!) It's hard not to worry about what tomorrow or next week will bring but I truly believe it serves us no purpose. We buried my mother in law today - it was so very very sad - and I'm still in hospital (but out on 6-8 hours day release until they can organise peg feeding at home for me) but this has shown me again that none of us knows the day or the hour. Suzuki's advice on arc house counselling is worth considering if you feel a helping hand is needed at this time. It's a wonderful place. Stay strong. X

  • Hi Sara, so sorry about your mother in law, you didnt need that to happen. really admire you for coming out every day and I am so glad you got happy time to spend with your children. The laughs made it all worthwile. My grandson is usually glued to tv but we were down about ten days ago and he was out with his friends. They all have plenty of toys but they were having turns in a dog crate, supervised of course. So I had to capture that moment on my phone. I agree worrying about next week only uses energy and serves no purpose.

  • Oh Annie dont beat yourself up about feeling as you do right now . It is so normal to get awful down days and to feel fearful .Dont cover it up talk to your family and tell them honestly how you feel and you will feel lighter. we cant always protect the people we love by pretending that all is well with us emotionally . Do ring Arc house and talk to palliative care nurses Annie . I SEND YOU LOTS OF LOVE AND YOU WILL B IN MY THOUGHTS .XXX

  • Hi Annie, I am so sorry you feel like this. I have been at that place a few times over the last 4 years since diagnosis.I would say be honest with your family, it puts even more stress on you always showing a positive attitude. I was in hospital recently for a week having fluid drained and went really down for 3 days. Thinking no more chemo EVER, I let it show to my family. I came through, I am halfway through 6 more sessions of my fourth different regime. Survival rates are only good for ignoring. They are based on out of date stats. Be careful the Internet is full of rubbish as well as. This support group looks good to me.

  • Hi girls,I feel a lot better today,I even had energy to clean the house yesterday ,I told the Oncologist I didn't want that energy again ha ha,I figured out what had made me feel so down.It was looking at all the people out and about in this beautiful weather,all dressed up,looking great ,laughing and joking and seeming not to have a care in the world! So I figured out I was grieving for the old me that used to do all those things,but I will contact Arc house next week.I got on well with Oncologist today.CA 11 and blood count up.No fluid,only Flab!! πŸŸπŸ”πŸ¦πŸ•πŸ­πŸ¨πŸ¦πŸͺ

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