That was a sh*t day!

[mattyn1]

popeyewhite said:

Give him some space, and some time. He's had a massive shock and may only just be coming to terms with it now. I can't stress how important it is NOT TO PUSH HIM TOO MUCH. If necessary let him have a year out, regardless of what you perceive to be the consequences. A soft style of counselling may be good - but only so he can vent, and only if he wants it. Look at it this way - he's survived, and everything else is secondary.

Thanks - you are right of course with regard to space and time. However I need to make sure that he will come out of it. My worry with doing this course of action is how long is enough? Maybe his focussed attitude at the beginning was a bit of a mask that we all missed. I am really out of my depth when it comes to working this out though!

NDA said:

It sounds like he is depressed - could it be that?

As a reader of this thread, I have followed the ups and downs - and felt emotional reading about the strains. But I also have that (obviously) detached viewpoint, that sees all of this in snapshots.

The first is - he's alive. And is going to stay alive.

That's a big thing right there. Actually the biggest.

He's been the centre of attention, and rightly so.... that attention is now waning a little. I just wonder if there's a bit of depression kicking in- almost that kind of 'after party' thing has died down?

My family knows of 3 teenagers (friends of my kids) with assorted brain tumours and cancer. It's unbearable and the emotional scars run incredibly deep - both for the afflicted and the family members.

Depression/PTSD - I don't know if there is fundamentally a difference but the comments are bang on. Three months ago he was really focussed - looking forward to getting this done and moving forward. I think you might be right about how he probably feels now the attention on him is waning. We have had the celebratory stuff when my eldest has finished university, where the attention was certainly not on Jack.

I guess I am disappointed the hospital(s) have not offered to put things in place! Anyway emails have been sent to the consultant - so difficult to speak to someone on the phone!

[popeyewhite]

mattyn1 said:

popeyewhite said:

Give him some space, and some time. He's had a massive shock and may only just be coming to terms with it now. I can't stress how important it is NOT TO PUSH HIM TOO MUCH. If necessary let him have a year out, regardless of what you perceive to be the consequences. A soft style of counselling may be good - but only so he can vent, and only if he wants it. Look at it this way - he's survived, and everything else is secondary.

Thanks - you are right of course with regard to space and time. However I need to make sure that he will come out of it. My worry with doing this course of action is how long is enough? Maybe his focussed attitude at the beginning was a bit of a mask that we all missed. I am really out of my depth when it comes to working this out though!

There is little you can do to "make sure he comes out of it". He needs time. He was focused at the beginning and treatment gives a patient a set target to work through, which is handy if you need goals. It won't have been a mask. But now he's probably a little lost. Treatment is over but for him the shadow of cancer will never really go away. It's not something you yourself can have any real influence on. I mean this in the nicest possible way - have you considered you might benefit from talking to someone yourself to help come to terms with and understand the trauma your son has been through?

Edited by popeyewhite on Monday 4th June 13:25

[mattyn1]

popeyewhite said:

There is little you can do to "make sure he comes out of it". He needs time. He was focused at the beginning and treatment gives a patient a set target to work through, which is handy if you need goals. It won't have been a mask. But now he's probably a little lost. Treatment is over but for him the shadow of cancer will never really go away. It's not something you yourself can have any real influence on. I mean this in the nicest possible way - have you considered you might benefit from talking to someone yourself to help come to terms with and understand the trauma your son has been through?

Its funny you should mention that - definitely I would benefit. I did at the beginning - to really quantify what was going on with me and to ensure I could offer and give the support he needed. I had the plan sorted and then stopped, and the plan went ahead like clockwork.

I don't however completely buy "there is little I can do to make sure he comes out of it" though other than an inability influence the time scale maybe. Support, guidance, love and understanding (well up till now) I can give in spades, and I must - unconditionally. If only I could get him to talk - or should I say if someone could get him to talk.

I suppose I am direct and mechanical with him, to which he is fending off, but I am trying to consider the longer term rather than just the now. I think he is capable of both. I know full well if I can get his mindset back to what he likes he will easily get back on track. I am hoping the GP and FoS will trigger something.

I like your "he is a little lost" comment. Probably he is more than a little and is defaulting to an easy option.

Thank you mate - I feel like you have a wet fish to slap me with!!

[popeyewhite]

mattyn1 said:

Its funny you should mention that - definitely I would benefit. I did at the beginning - to really quantify what was going on with me and to ensure I could offer and give the support he needed. I had the plan sorted and then stopped, and the plan went ahead like clockwork.

I don't however completely buy "there is little I can do to make sure he comes out of it" though other than an inability influence the time scale maybe. Support, guidance, love and understanding (well up till now) I can give in spades, and I must - unconditionally. If only I could get him to talk - or should I say if someone could get him to talk.

I suppose I am direct and mechanical with him, to which he is fending off, but I am trying to consider the longer term rather than just the now. I think he is capable of both. I know full well if I can get his mindset back to what he likes he will easily get back on track. I am hoping the GP and FoS will trigger something.

I like your "he is a little lost" comment. Probably he is more than a little and is defaulting to an easy option.

Thank you mate - I feel like you have a wet fish to slap me with!!

You're welcome

I share the same diagnosis as your son (squamous cell, to be exact), and am shortly to get my fitness to practice as a counsellor (Rogerian). It is absolutely no fault of yours that your son appears to be struggling, it's all part of the process of coming to terms with what a close call with cancer actually means. Most likely he will be changed for ever, but only in small ways. It will take time, but he will heal mentally. Your unconditional love and understanding is crucial at this stage as it's very possible he will display some out-of-character behaviours in the coming months. Your love and nurturing will give him a chance to heal in his own space. Oh and well done being an excellent father, must have been awfully hard for you.

[mattyn1]

It is extremely hard and I have had to compartmentalise a lot to get through it - knowing full well that it was Jack going through it - certainly was not in the "Being A Dad" handbook! It is like walking around somewhere you don't know with a blindfold on - although we did go through the trauma of my daughter being born with a few holes in the heart 11 years ago, so I understand the support I have to provide as a father.

I hope you don't mind me asking - have you had it, or got it? Are you coping ok?

[popeyewhite]

mattyn1 said:

It is extremely hard and I have had to compartmentalise a lot to get through it - knowing full well that it was Jack going through it - certainly was not in the "Being A Dad" handbook! It is like walking around somewhere you don't know with a blindfold on - although we did go through the trauma of my daughter being born with a few holes in the heart 11 years ago, so I understand the support I have to provide as a father.

I hope you don't mind me asking - have you had it, or got it? Are you coping ok?

This time last year I was told I had head and neck cancer. It was a type called squamous cell carcinoma. I was given the all clear just after Christmas this year. At the time I joked it was an inconvenience. Physically I'm fine now but I don't know whether mentally I'll ever be the same again. There are cancer forums out there which helped me understand, rationalise and deal with the diagnosis and treatment. It undoubtedly helped I was very fit when my treatment began and I kept a very positive mental attitude. But, perhaps like your son, life was very 'uninteresting' for a few months afterwards even though I had huge support from family and friends, which, to be completely honest, often irritated me. Sometimes less is more.

[mattyn1]

Well from me well done on the all clear. For all the nastiness that cancer brings it is great to hear success stories of people who fight it and win.
Was it you that said cancer is a bully that hates being stood up to? If so it was something that stuck with me.

How often are your scans now?

[aaron_2000]

mattyn1 said:

Depression/PTSD - I don't know if there is fundamentally a difference but the comments are bang on. Three months ago he was really focussed - looking forward to getting this done and moving forward. I think you might be right about how he probably feels now the attention on him is waning. We have had the celebratory stuff when my eldest has finished university, where the attention was certainly not on Jack.

I guess I am disappointed the hospital(s) have not offered to put things in place! Anyway emails have been sent to the consultant - so difficult to speak to someone on the phone!

You'd have to expect it after everything though, maybe it's worth you having a flick through the depression thread?

[popeyewhite]

Every two months. But they're not scans - I have a camera stuck up my nose and down my throat for a good lookaround. It wasn't me who said cancer was a bully, I don't believe that to be the case. Cancer is part of us, it's our cells...and when they grow we just have to deal with it. No-one really 'beats' cancer - the treatment either works or it doesn't. There's a bucketload of luck involved as well.

[NDA]

Difficult on anyone, more so on the young.

A boy in my son's house and year at school fell into a coma a little while ago - he's now out of it following brain surgery (a tumour). At the school's open day he was bald and in a wheelchair as he can no longer walk. He obviously won't be sitting his GCSE's.

As we left, my son said "we won't see XX again, he's leaving the school, that was his last appearance". I felt this was incredibly harrowing news - just so sad. What effect will this have on the lad? Who knows? A big Rubik's Cube of emotions being twisted this way and that and all at just 15 years old.

I guess the lesson is that we have to take these things a day at a time - fiercely grasping on to the good news parts. The rest, with support, will follow.

Not easy yards to walk.

[Tumbler]

I'm 6 months post chemo, and still have side effects;

Fatigue, really difficult to describe but it's not like normal tiredness, it's a slam you in to the wall tiredness which comes on with no warning, a mile walk would be too much most days.

Neuropathy, excruciating pain in my feet and hands, not really controlled by pain relief but oddly tumeric spray really helps.

Memory difficulties, these are really disconcerting, couldn't remember my date of birth the other day, I feel like an idiot some days as I can't string a sentence together and muddle up my words.

Weight gain, I've lost nearly three stone, 4lbs to go, this has been really tough to do due to lack of exercise but I've stuck to 1200 calories a day.

Everyone tells me I look great, people don't really 'get it' I no longer look nor feeel like 'me' everyone has an opinion on cancer! you've got to fight it or you've got to live your life and make the most of things! well hello I was loving my life pre diagnosis! I blog which helps, I have returned to work four days a week but this is way too much so will be scaling back.

I'd try and encourage him to engage and connect with Macmillen, he would probably benefit from meeting someone of the same age who has had the same cancer, I've joined a closed Facebook group for my cancer and helps to discuss fears with those who really 'get it'

Just typing this is tiring as I've had to constantly check my spelling and nothing flows like it used to, chemo really is a b1tch

Edited by Tumbler on Monday 4th June 19:27

Edited by Tumbler on Monday 4th June 19:28

[Legacywr]

As just said, MacMillan will be your best guid through this Matt!

Tumbler, it took me ages to get well after chemo, it turned out my testosterone was low, now that I have treatment, I've never felt so well! I'd suggest getting your levels checked!

[Tumbler]

Legacywr said:

As just said, MacMillan will be your best guid through this Matt!

Tumbler, it took me ages to get well after chemo, it turned out my testosterone was low, now that I have treatment, I've never felt so well! I'd suggest getting your levels checked!

Thanks, but I'm female, full hysterectomy, HRT not safe due to cancer being Nueroendocrine aggressive and incurable.

[Tumbler]

Has he had his thyroid levels checked, chemo can kick these out of kilter

[Legacywr]

Tumbler said:

Thanks, but I'm female, full hysterectomy, HRT not safe due to cancer being Nueroendocrine aggressive and incurable.

Oh ok.... not quite sure which emoji to insert here...

[mattyn1]

Thank you all for your comments and advice today. I really appreciate the advice and candid telling of your experiences. I have also spoken over the past few months to a number of people who I would say are in far worse positions than us and have been bowled over with such positive attitudes.
It seems a common trait... the positive attitude. I will help Jack through this as I have helped him so far. I am cognisant of the fact he might just want us parents to back off .... I will take that into account. We will seek help ....... all of us to help us all understand fully what he has gone through.

Also I would like to apologise if I have come across as a bit of a martyr. Not my intent and I fully understand some of you are suffering with this illness. To you I send my best wishes and positive thoughts.

A good thing I suppose is we have raised a few grand for Clic Sargent...... which is only one of many charities and organisations who have helped.

I was quite down this morning..... not so now. So thanks guys ...... oh and girls!!

[NDA]

Tumbler said:

cancer being Nueroendocrine aggressive and incurable.

Perhaps I misunderstood - you're going to be OK aren't you?

[popeyewhite]

Tumbler said:

Everyone tells me I look great, people don't really 'get it' ..

So true in my experience as well.

Tumbler said:

he would probably benefit from meeting someone of the same age who has had the same cancer,

Absolutely, the surprising strength of 'bond' and honesty I experienced with other other cancer sufferers was an instant relief over the well-meaning but clumsy and often useless and sometimes downright irritating small talk of healthy people who were "only trying to help".

[Tumbler]

NDA said:

Perhaps I misunderstood - you're going to be OK aren't you?

Currently my prognosis is poor, more than a year but likely to be less than 2, but I'm mindful that progress in cancer therapies is constant, so I remain hopeful of remission in the future.

[mattyn1]

Tumbler said:

Currently my prognosis is poor, more than a year but likely to be less than 2, but I'm mindful that progress in cancer therapies is constant, so I remain hopeful of remission in the future.

I really do not know what to say.

In admiration of your positivity, you know we are all here if you need anything.