1 year on...

Hi J55, I do remember your post, it's nice to hear from you again, though sadly not under these circumstances, your thoughts and feelings are normal, many on the forum have similar thoughts from time to time, more so after going through a difficult spell or side effects from treatments, like you my cancer causes few, but manageable side effects, but my treatments cause more and difficult ones. If I had known all the issues my cancer treatments would cause before I started them, I'm not sure if I would have taken the same path.

But hindsight is a wonderful thing, you do what you believe is right for you, with the information you are given, J55, my personal opinion but I don't believe that now, just after your stereotactic surgery, major surgery,  when your coping with the mental and physical impact of  the surgery is the best time to consider continuing with treatments, but I 100% respect your right to choose your own path, it's just I think you should get through the surgery and it's side effects and see what it's done for you first.

Before i started treatments, I had10 non cancer conditions,  I now have 9 or 10 new health issues, many are serious, though I can't say for certain they are all cancer related ,a hell of a coincidence if they're not, but I will continue with treatment, I'm probably on my last one, for as long as it's helpful, to be with my family for as long as I can, my very best wishes to you, I hope your latest treatment is successful and you feel better for it.

love Eddie xx 

Hi J55, (if I remember correctly is it Jean) It is good to see you post again but sorry you are having all these problems. I do know exactly what you mean as it was dabrafenib I was on for over three years and the side effects were pretty hard to live with and still are n fact! However, the way I look at it is…I am still living! It is definitely not the life I expected to be living but at least I am still here to support my husband who was diagnosed with Bowel Cancer last September. Also I am lucky enough to watch our grandchildren growing up, something I never imagined I would get to do.

There have been times, I admit when I have said “I can’t do this any more”. Mostly if I amin a lot of pain or having a bad day but then I get a text message from our 12 yr old granddaughter saying can she pop round after school and that makes me keep going. No one but you can make the decision of whether to stop the drugs or not and whatever you decide will be right for you.       I just hope you have someone to talk it all through with before any decision is made. Have you seen a councillor? If not it could be worth asking for a referral. A lot of us here have spoken to one. Itis worth a try! Please let us know how you are doing and we will be here to support you, whatever you decide. Or as you say, it is good to get things off your chest! Do it here!

Hi Eddie (eddiel) and Annette, (anndanv) thank you both so much for your replies. I'm sorry, I think I was feeling particularly sorry for myself yesterday.   Eddie, the SRS radiosurgery isn't nearly as bad as it sounds.   No cuts are actually involved,  it's really just a pinpoint version of radiotherapy,  so that each dose reaches a very specific part of the brain.  I was only supposed to have 1 day of treatment but ended up with 3 as the lesion in the cerebellum had grown quickly.   I thought I'd avoided any side effects, but a month on, I'm discovering new or worsening ones every day..

My son has just got engaged and they are having a very small wedding in London in June so I really do have a lot to look forward to, although I'm not sure September's 'wedding' in Greece is quite in focus just yet.  Emily is 1/2 Greek and so the main celebrations will be out there.  

I guess that I was just having a really off day yesterday,  probably because of the new chest infection but at least I am better prepared this year than I was year ago. It just feels sometimes that the 'cure ' is worse than the cancer itself. 

I will be absolutely fine as soon as I stop wallowing in self pity and just get on with it.  Posting on here yesterday certainly helped.

Much love to you both.

Jean xxxx 

Great to hear from you and that a post has helped!  No need to apologise.  This is what the forum is for.   

Hi Jean, as Mmum said there's no need to apologise, we all understand the ups and downs of living with our prognosees, down days hit us all, was hoping to have something similar to your SRS radiosurgery, SBRT,  but my cancer had other ideas , I'm so sorry to hear how hard your treatment hit you., and understand how side effects and new conditions can drag you down, and how important it is to not make decisions when you're at your lowest.

That's fab, your sons getting married, PS, I'm also getting married next summer too, and I am looking forward to it, though we know there will be a few bumps in the road on the way, and we have 2 new grandchildren due in January .

Glad we helped in some little way, but I'm sure it's mostly down to you, we're all stronger than we think, though a little support  at times is helpful,

There are some amazing people on here Jean, always here for each other, and now for you, maybe getting to know some of the guys on here  would be helpful.

love Eddie xx 

Hi Jean (J55) There is never any need to apologise here for feeling low. We all have off days and feel sorry for ourselves and why not with everything we are having to put up with. Especially. Side effects! So don’t apologise for being normal!! lol! To be honest I have said myself more than once “the cure is worse than the cancer” at least that’s the way it sometimes seems. Then I think what a miracle it is I am still here, give myself a telling off and get on with it!

I am so pleased you felt better after posting! Maybe if you keep doing that, things will seem a lot better. At least I hope so!

Wow, a wedding on the horizon sounds great! We all need something to look forward to and a Wedding tops most things! Take care.

I popped onto the forum today and my reason is pretty much the same as you. Just having a few days where I feel a bit down and wondering how others cope. I was given less than 12 months back in Feb. Thankfully things do not seem to have progressed as the Consultant thought. My tumour that shrunk with chemo is stable but I have bone mets around my spine and pelvis. I had a targeted Radiotherapy about 5 weeks ago and although there was an initial improvement in pain it seems to be back. I am not so bad if I don't walk around a lot so I do have a wheelchair and scooter. I always worry on the run up to a scan which is on Monday.I know I am sitting about the house far to much. It's like I think oh I'll wait until I feel better but actually that isn't going to happen. I need to kick myself up the backside and realise I'm lucky to still be here and live what life I have to the full.  I am glad you have the wedding to look forward to as planning something always helps me. I have 4 grandchildren ranging from 1-4 so lots of things to make me happy watching them grow. I might just ask about a counsellor just for someone to listen to my rambling as I don't say much to my husband because I don't want him to feel sad because I am. He is very caring and supportive anyway.

JG

Hi Jkg, Welcome back. People here I think would agree that most people have scanxiety before their scan is due and while waiting for results. Come here and rant all you like as we are all here to support one another and it is the only place others know exactly how you are feeling. Most of us don't want to upset our spouse or partner as they have enough to cope with.

I hope the scan goes smoothly on Monday and you don't have to wait too long for the results.

Hi JG

Thanks for your reply.  You're right in what you say.  I think everyone on this forum has down days occasionally and I try to restart how I feel as quickly as I can.  This is the first time that I think I have got as far as posting my feelings on here.  I generally manage to give myself a good talking to and pull myself out of any feeling sorry for myself.  It is always much harder around scan times/results.  I think for me, st the moment it's a realisation that it's a year since I was first hospitalised with breathing problems and also that I currently have Abx for a chest infection.  They always pull me down a bit.

  You are right, the wedding to look forward to is wonderful , I just don't like the fact that I'm not really able to help out practically on any  way.

On a brighter note,  I have finished my Abx today and my CNS I is ringing tomorrow to see how I have got on with the steroids I was prescribed 2 weeks ago.

Please try not to worry about your scan on Monday and do please let me know how it goes. Your grandchildren obviously mean the world to you, it makes everything worthwhile. Xx

Jean