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looking for any help to come to terms with my prognosis

4 Mar 2015 13:28 in response to max56

Gary,

My wife had Stereotactic Radio Surgery (aka as Cyberkinife as mentioned by Max) for a non-cancer brain condition last year and if that is an option I'd recommend going for that as the recovery period is fast compared with the alternatives and the side effects are minimal. 

As for dealing with such a crappy prognosis ... I'm not sure how any of us cope with that but we seem to. I could give you the ageing hippy advice about accentuating the positive and looking for beauty in nature, but I think the reality is more visceral. Our mental attitude won't prolong or reduce our life expectancy but a negative attitude will mean that time drags out for you and those who love you as you suffer in misery awaiting the inevitable. If you feel depressed or in pain take whatever drugs are available to alleviate the symptoms and help you maintain a good quality of life. Forget the normal social constraints and do whatever you have always wanted to do or revisit places and experiences that you have enjoyed in the past. As my Grandad, a wise old Lancastrian who in his lifetime had fought both cancer and the Nazis, put it to me as a teenager "enjoy yourself while you can son, you're a long time dead!" 

I realise this posting is of absolutely no practical use, but I do hope it made you smile Happy
 

All the best
Dave

 

 

looking for any help to come to terms with my prognosis

4 Mar 2015 13:42 in response to brighteyes

@brighteyes ... Steven - if you think we are a peaceful community you have obviously never met me or Max in person lol I've always been a stroppy beggar, if anything my cancer diagnosis has made me stroppier and more intolerant as my long-suffering wife and family will testify Happy
Cheers
Dave

ps I'm definitely with Dylan Thomas on this one http://www.youtube.com/watch?v=1mRec3VbH3w

pps @Gary99 - sorry for going off topic lol

 

looking for any help to come to terms with my prognosis

4 Mar 2015 21:15 in response to max56

Hi Max, hope the dentist visit went ok.  

May I share some of my thoughts with you?

I wish I didnt know my prognosis.  I have been one who has repeated the old cliche about "better to be hit by the bus" but obviously then from an entirely abstract POV.  Although I have the experience of a close family member who has a degenerative illness.  But I suppose being told was unavoidable and it cant be turned back now.

Ive never had some list of grand ambitions - no desire to climb Everest or take a world cruise.  I live an ordinary life of similar routine to most people I guess.  That hasnt changed so far since finding out. Sometimes I feel like it should change and Im wasting time - but it would seem hollow to do something for that reason only.

I probably sound a lot calmer than I actually feel.  I do worry if I will get more frightened when I become more unwell.  But I mostly worry about the person Ive spent the last 20 yrs with and who cares for me now.  I think I have the easier task in the end.  I have vented my frustration and anxiety but regretted it immediately.  It does no good.  This is the reason that I want to stay positive and not corrode years of good memories when it counts the most. This is the path I want to try and find for both of us.

By the way, my JR is called Bertie

Gary

 

looking for any help to come to terms with my prognosis

4 Mar 2015 22:44 in response to gary99

 

Gary .....

I understand exactly what you say - I too wish I didnt know my prognosis but I guess nowadays the doctors have to meet so many regulations that they are possibly in a situation where they have to be totally honest with their patients for fear of being sued.  At times they must feel that it is not in the patients best interest to know the full facts but probably are not allowed to withhold information.  I can remember when my Mum was very ill in 1975 - the family were all told and it was my Dad who was asked if he wanted Mum to know - he said 'no'. This would never be allowed to happen now - it would be the patient who was asked if they wanted their family informed.

I too dont want to do anything earth-shattering although many people make you feel like you should. All I truly want to do is be here in the house I love, with the family that I love, and see friends etc and feel rested and peaceful.

As for our partners - gosh they have a difficult task and I am full of admiration for how they cope. I am not sure I would do such a good job as my OH if the situation was in reverse.  I am sure you have vented your frustrations to the person you love - but just ensure that you apologise and talk openly about how you feel.  I have told my hubbie many times that I dont want him remembering me with this illness but to remember the many years before C entered our lives and the fun we had.  We talk a lot about our fears, hopes etc to each other and I hope you can do the same.  I know this may sound a bit strange but I have also written letters to my husband and children and wrapped a few special memory gifts for them in case I get too poorly to do so later.  It is comforting for me to know that I have told them exactly how I feel about them and they will have these to keep - I would hate to think that there were things I had left unsaid.

This is a difficult journey to take Gary, there is no denying that - but it is the card we have been dealt and I guess there are many travelling the same path.  We just have to take it day by day - I try and think that I am living with cancer and forget the 'dying of' bit.

I may be offline for a few days because I am off to London tomorrow for chemo. Take care of yourself and I will speak to you soon.  I am glad you have joined the forum and hope you have found comfort here knowing that you are not alone in your thoughts. x

looking for any help to come to terms with my prognosis

5 Mar 2015 00:52 in response to gary99

 Hi Gary - I'm in a slightly bizarre situation really. Let me tell you about it. Before the big C picked on me, I was aware of another cancer journey. My ex-husband and I have stayed in touch and about 2 1/2 years ago he called to tell me that his girlfriend had been diagnosed with lung cancer and secondary tumours in the brain. She was given a poor prognosis. My ex however did not accept that the brain tumours were inoperable. He found a leading consultant and they got a second opinion. Subsequently a successful operation has led to different treatment options and she has exceeded the "statistical" life expectancy she was given. Then a year ago, an ironic double whammy for my ex as I was diagnosed with advanced breast cancer. My last consultation with my oncologist was not good news, the presence of liver tumours had been found. I did not think much of the narrow treatment options and also felt I was being given a "reaching the end of the road" outlook. But with a few nudges from max I have now got a few more options.  I would just advise that there can be some real benefits of being not just positive but proactive, and I can testify to this! As for lifespan indications it is likely you are being given averages based on statistical data,  so treat it like you've heard it from a politician. Hope this helps, Gill

 

 

 

looking for any help to come to terms with my prognosis

5 Mar 2015 01:35 in response to gary99

Hello.

I know someone who had a massive tumor on the right lobe and another smaller one on the left side.  He had surgery and they removed them...he may still have to have radiation.  Yesterday, he had a seizure, but they say that is expected after the surgery..and they have him on steroids.

God Bless.  We are here to comfort one another and to give some insight. 

Katarina

 

looking for any help to come to terms with my prognosis

5 Mar 2015 08:54 in response to max56

Hi Gary,
As Max has said prognosis' are not set in stone.  We beat my hubby's.   He was given 3 months.  We talked openly and honestly and I said I would manage without him and I am, as he was concerned about me.  There was nowhere in this world I would rather have been but by his side.
He didn't have any earth shattering ambitions, was content with his life lived (aged 56) and made the most of the time we had.  He found great pleasure doing what he could, oiling padlocks, transplanting seedlings, spending time with me, pets, family and friends when they were given the ok to visit as I didn't like to see him too exhausted, but ultimately it was his choice.  He looked at nature and life with new eyes, appreciated all the beauty that surrounds us which we normally take for granted, also taught me a lot.  We were together for more than 30 years.
He never asked why me, always stated rather him than a child at least he had had a good life, quite fulfilled. He wrote letters for after he was gone that gave some comfort too.
Anyway all I can advise is one day at a time, celebrate your victories , do what makes you happy, don't worry about tomorrow that'll take care of itself, live for today.
I am sure your O H is understanding when you are grumpy and you have good reason to be.
I bet Bertie gives you great pleasure too.  He sound cute.
Take care
Kathy x
 

looking for any help to come to terms with my prognosis

5 Mar 2015 21:23 in response to gary99

Hi Gary, im new on here, have just read your post and was so deeply touched by your story i had to reply, i cant imagine how you are coping with this at all, i would like to send you my very best wish's and my prayers that  you have good friends and a loving family around you for support. regards Jennymac x

looking for any help to come to terms with my prognosis

6 Mar 2015 10:07 in response to max56

Max, your comments really resonate with how I feel and were comforting to read.  Good luck with the sessions and hope to catch up soon.  Gary

looking for any help to come to terms with my prognosis

6 Mar 2015 10:17 in response to KathyS

Thank you Kathy for your reply.  It does make me feel better to understand that others have taken similar approaches to living their lves in the way that best works for them and loved ones.  I was in danger of becoming obsessed about "wasting" whatever time is left, but yours and others responses sre helping me realise there are no right or wrong ways.  Gary

looking for any help to come to terms with my prognosis

6 Mar 2015 10:24 in response to jennymac

Thank you Jenny and it was good to hear how well you are responding to your treatment. Best wishes Gary

looking for any help to come to terms with my prognosis

6 Mar 2015 10:35 in response to Boatgirl

Thanks Gill.  At an early meeting with the consultant we asked if any alternative approaches were available but he said not.  You have inspired me to bring up the discussion again when I see him in a few weeks.

Gary

looking for any help to come to terms with my prognosis

6 Mar 2015 14:19 in response to gary99

Hi Gary,

On the subject of prognoses, my oncologist pointed out in no uncertain terms that life expectancies are based on averages and should not be taken as set in stone. They often don't take into account variable factors such as the age and fitness of the patient, the aggressiveness of the cancer and unknown genetic factors. They are often also based on out of date data which doesn't reflect improvements in the effectiveness of cancer treatments over recent years.

Try not to be passive with your consultant - this is your life being discussed here not his. You are entitled to a second opinion from a consultant and you are also entitled to go private if necessary. Get as much information as you can before you see the consultant and if you think there are alternatives he should be offering ask him why these are not being offered. There may well be a good reason for his position in which case you will sleep better at night knowing that you at least discussed alternatives with him. On the other hand it may well be that alternatives aren't being offered because the medical expertise isn't available locally. SRS/Cyberknife is only available at a few places in the UK - I know from talking to patients waiting for treatment at the joint Walton Centre/Clatterbridge Cancer Centre in Liverpool that they treat people there from all over the UK and from abroad. 

 

Good luck
Dave

 

 

 

 

looking for any help to come to terms with my prognosis

6 Mar 2015 22:26 in response to gary99

 

Hi Gary 

What a thought provoking thread this is, and many inspirational words. The time taken by others to reply and comfort one another is truly amazing.

I will just echo what others have said be an advocate for your own health, you are so entitled to seek a second opinion even from a different hospital. I contacted the royal Marsden in London w to see if they would see my dad, unfortunately he does not want a second opinion but the option was there should he wanted it. Simply forwarding details from dads oncologist to them would have got the ball rolling.  I hope you continue to post here as it really does help and talking to others who can in someway relate helps us along the journey x

 

 

 

looking for any help to come to terms with my prognosis

10 Mar 2015 11:20 in response to Kirstynic

Thanks for reply i see the consultant next week so will raise the topic again.  Also due a scan end of month so will see if any improvement this time.

I will definitely keep in touch with people meeting through this chat room.  My eyesight makes using a computer slow work but I keep at it.

 

And I apologise if I appear to ignore some posts but it isnt intentional.  I just find the web site screens very "busy"

Gary