That was a sh*t day!

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mattyn1

Original Poster:

5,836 posts

157 months

Tuesday 6th February 2018
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Apart from the spelling mistakes, and the wrong name at the bottom......

https://www.royalnavy.mod.uk/news-and-latest-activ...


mattyn1

Original Poster:

5,836 posts

157 months

Tuesday 13th February 2018
quotequote all
Well here we are again .... the usual fortnightly treatment session. Though this one is significantly different.

The mid treatment PET scan was last Friday. This was to tell us whether the treatment is working ..... or more importantly if it is not working as expected, and may result in a more aggressive chemo treatment schedule.

The good news is, based on the scan results, jack is bang on as expected, with all traces of the cancer either diminished or diminishing. It also means that he can now have a reduced recipe.... down to three chemicals from the original four. We have dropped the one that can cause lung issues ...... the relief is indescribable (sic).

It has been a somewhat tricky weekend, not knowing results that could mean harsher and more aggressive treatment is a difficult thing to go through. But this result means we can now start to move forward. Jack knows it is even more likely he will be properly cured, and can plan his future with some commitment now. That means college is back in the agenda for September. That means we can plan the good stuff we have to plan (VMax, Formula E, etc).

I know the medics have done an outstanding job, and catching this early as we did in December means we are in the position we are today. But in addition, I firmly believe we can influence some things by a positive and strong outlook when things go bad. I have tried to do this, as head of the family, but it would not be possible without the positivity and wishes from everyone within PH.

My son is going to be ok, and for that, I thank you.

I am looking out of the window and ironically the weather is the greyest and most miserable it has been on these treatment days. But somehow it is bright.... it is a glorious view of the hospital bins!!!!!

Edited by mattyn1 on Tuesday 13th February 14:26


Edited by mattyn1 on Tuesday 13th February 15:28

mattyn1

Original Poster:

5,836 posts

157 months

Wednesday 14th February 2018
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sir humphrey appleby said:
Hi Matt, just read this thread all the way through, best of luck to you Jack, having a positive outlook will stand you well.
It was my daughter that was on the pitch during half time at Stamford Bridge, when Saints played Chelsea. Twig is right, Chelsea were amazing, everyone was so helpful, stewards in and around the ground were all pleased to see her and wanted to know all about what she was doing at half time. Holding doors open for her so we could get the wheelchair in etc. Funny how little things like that make such a difference! Chelsea are now her second team after Saints. I must admit I see them in a different light and look out for their results.

Anyway, I am rambling, hope all goes well and I will keep an eye on this.
Sending positive vibes...hippy
Did you get to go on the pitch with her? Sounds awesome. And thank you for the supportive words. I was slightly dubious on putting this out there online - you know how some threads go! But it has helped enormously.

Our day was amazing - the hospitality, the food, the attention to detail. Jack and his older brother meeting their heroes was the icing on the cake. Actually, me meeting John Motson was stonking too! But like you say, what amazed me the most was (and I say this knowing how much work goes into organising stuff) how everyone knew what was required for Jack. Even the reception girls in the executive suite reception who as it turned out used to frequent The Pitt Club in Honiton when I used to knock about there - so while the boys were meeting and greeting, and I was not fawning over John Motson, I was reminiscing with her!

We watched the game from the players family lounge - we were right next to a window to the stand so I had to take the opportunity to show the guy on the other side my plate of Brie! Luckily he saw the funny side! Sally who organised the day for us was terrific - having waiter service during a football match was slightly odd though - I am used to queuing for a pie and a cup of Bovril!!

I did make an assumption most clubs do this sort of thing - but from what I have heard I am not so sure. I met Kevin Keegan when I was young -I think he was playing for Southampton at the time - they might well have played Exeter in either an FA Cup match - or a pre season friendly - I cannot quite remember. I remember being in awe. Seeing the boys when they came back from the tunnel brought all that back. Terrific day!

mattyn1

Original Poster:

5,836 posts

157 months

Wednesday 14th February 2018
quotequote all
Crikey.... you must have had more than a tear in your eye.... I have a tear in my eye reading that and seeing the photo.
Awesome experience for her, and you of course.

mattyn1

Original Poster:

5,836 posts

157 months

Wednesday 14th February 2018
quotequote all
TwigtheWonderkid said:
I was at that game, it was in front of the Matthew Harding stand, which is indeed the home end. I was cheering too. I remember you daughter's pen, wasn't exactly a piledriver but it got over the line in the end!!
Which to Dad and Daughter I suspect it was goal of the decade! To do that at the ground would be epic. To have a huge crowd yelling and cheering makes it properly unbeatable.

mattyn1

Original Poster:

5,836 posts

157 months

Tuesday 6th March 2018
quotequote all
Thank you for the nudge to update!

After the good results from the PET scan - Jack decided he wanted to go and spend some time with his mum - so we had the arduous task of transferring his treatment to the Treliske hospital in Truro.

Now this should be relatively painless one would have thought - at least the Doctors told me it would be painless - but the admin process deemed otherwise. Dr Davies at Southampton agreed transfer was ok - and told us he would send the necessary documentation. I personally contacted Treliske hospital and arranged the necessary clinic and chemo appointments.

When Jack arrived at Treliske for his clinic - they told him they had no record of his arrival and chemo would not be possible. Jack obviously now quite distressed, calls me to try to sort it out - I call Dr Davies who has to email the Treliske consultant who Jack was sat with - luckily we were able to get it sorted there and then - but it took over a month for that transfer not to happen!

Luckily we are now a bit further on, and Jack has had his first chemo session at Treliske, and is happy to be on the lesser recipe. Although there was more panic when he was due to have the chemo last Thursday - the day Cornwall was obliterated with snow! Alas all as good as he and his mum booked a hotel for the night before so at worst were only walking distance from the hospital.

He suffered a bit with this first session last week - more sickness etc for the couple of days after - but we have put that down to stress of the move and snow etc. He has developed his maturity so much over the last few months, but alarmingly has spoken about giving up college and going into an apprenticeship when he is better. I have some work to do on that score I think. Trying to be objective is difficult as I firmly believe college is the best way forward.

Jack is now up with me for the week as we prepare to get even more excited for VMax on Saturday. Hopefully we will see some of you there!

mattyn1

Original Poster:

5,836 posts

157 months

Tuesday 6th March 2018
quotequote all
br d said:
Hi Matty, just caught up with the updates in this thread, great to see Jack doing so well.
I had offered to come to Vmax but I haven't picked up the new car yet, it's in being ppf'd and won't be ready till the end of the month. Hope you have a great day there and kudos to all the PH's making the effort, this is a great place when people aren't arguing about stuff that doesn't matter!

Anyway, need to get down your way at some point to see a friend so if you and Jack fancy a spin in an ugly faced McLaren I'd be glad to drop round!
You know how awesome that will be! Just let me know when you are thinking and I will sort Jack to be here. He is particularly excited about this...... so again thank you so much! Lunch will be on me smile

mattyn1

Original Poster:

5,836 posts

157 months

Monday 4th June 2018
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Its been a long time since I updated this but now is a good a time as any.

Jack had a mid treatment PET Scan back end of February - now this went really well and the consultant told us he was responding as text book as can be - and went as far as to say jack will be clear come the next scan in June.

Because of that good news jack made the decision to move back to his Mums and continue treatment in Truro (Treliske). While I was against this move (he was being treated by the country's lead Lymphoma consultant in Southampton so you understand my view) we were fully assured the reduce recipe he would undergo was within Treliske's capabilities. In fact one of the chemicals (one of four, and a particularly nasty one) would cease to be administered so he should not feel so ill after each session.

On the whole this turned out to be quite accurate. It is a pity Treliske is not as geared up as Southampton - he was used to booking in his Clinic and Chemo sessions on consecutive days in Southampton, and the staff would always be waiting ready for him - Southampton and the Young Persons Cancer Centre really is a well oiled machine. Unfortunately Treliske isn't - and Jack was told initially he would have to have clinic and treatment on the same day. Now while this does not sound too bad, it would mean very long days - up and do the 30 minute drive to hospital for a 09:00 blood test appointment - then for a 10:00 clinic appointment with the consultant, followed by a four hour wait for the chemo recipe to be prescribed and issued. Then of course the four hour treatment session. So at best he would struggle to get out of hospital before tea time, and that is assuming no delays in the blood test and clinic appointment times - and assuming no delays in getting a place in the chemo room for treatment. He certainly did not receive priority appointments and was in the "queue" with every one else.

After some military pressure applied by me(!) we were able to negotiate the blood test and clinic on a Monday morning - and the chemo session on the Thursday. This meant at worst he would experience delays for each session and they would not have such an impact.

So this was the plan and it seemed to go well - though he did experience delays nearly every time - primarily Thursdays for the treatment when there was no bed/chair available. The solution was to sit in the waiting room and wait! We never experienced that delay in Southampton, as like I said, they were ready and waiting for him. In fact in Southampton, there was never more than four patients at any time in the ward.

But he battled through this - spurred on by the massively high level of support from here, the guys at VMax and family. This culminated on May 24 when he received his last treatment. We now are waiting for a post treatment regime PET Scan which has been scheduled for just after Goodwood FoS. Apart from the regular check up scans he will undergo, hopefully that will be it.

Except I have new worries now. Although the psycho-therapy bit was mentioned when this first kicked off, it appears to have dropped off since the move to Treliske. I have no doubt he now needs counselling - and I need to be careful how I describe this bit.

Notwithstanding what he has been through - horrific at any time of life and to anyone - his attitude is really down and quite disappointing. Where he was once upbeat and focussed (back in December when he was diagnosed and undergoing treatment at Southampton) everything is now a real burden. He has put weight on (the steroids have caused an increase in appetite which he has not controlled) but is doing no exercise (and I mean none). he will sit in front of his Playstation all day, even taking lunch back to the TV. He does not talk, he does not communicate in any way. When he has come to me I have tried to get him out - like walking the dog with me, going to the shop and posting a parcel etc. he will do his very best to avoid doing it. College was looking doubtful as he wont engage with them and secure his place for September - now fortunately I know the course lead and have sorted next year for him but Jack is really not interested in doing anything. He has not been out or engaged with mates since he went back to Cornwall - he replies to us all with grunts.

He has been offered a job with Tesco - but only because his mother completed the on line application. He has expressed a wish to do an apprenticeship in motor engineering - and he has a CV that he has posted on line - but won't search for possible vacancies as he thinks the site will do that for him. I have tried explaining that he will not get offers of an apprenticeship without him going out there and getting it - but he shrugs and walks away saying he will look into it tomorrow.

I think these are all symptoms of some form of PTSD post the illness, and not his actual characteristics. I have phoned Treliske and tried to explain, but one of the doctors just said it sounds typically teenager! He just spent the last week up with me and he never said one word to any of us (me wife and daughter) without being spoken to first. Something is very wrong and one - I don't know what to do, and two - I don't know if I am worrying unnecessarily early.

I am a very methodical type of bloke - I like stuff planned and organised, and I worry that now Jack is a year older than his educational peers he is in danger of being "left behind" somewhat. He does not have the school organising career fairs and interview possibilities. I feel if we can get through the summer and I can get him back to college (which I think is still the best option) I can help him get through this, and get him back to normal, but I don't know if I can get him there. I know he will have changed post this illness - but this is a trough that I think he sees no way out of. Quite possibly he may not even know he is in a trough!

My wife is really concerned - she is a nurse by the way - and is looking into how we can get jack exposed to some help. She made a very valid point - it seems now, today, dealing with the actual cancer might have been the easy bit.

I am worried.


mattyn1

Original Poster:

5,836 posts

157 months

Monday 4th June 2018
quotequote all
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!

mattyn1

Original Poster:

5,836 posts

157 months

Monday 4th June 2018
quotequote all
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!! smile

mattyn1

Original Poster:

5,836 posts

157 months

Monday 4th June 2018
quotequote all
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?

mattyn1

Original Poster:

5,836 posts

157 months

Monday 4th June 2018
quotequote all
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?

mattyn1

Original Poster:

5,836 posts

157 months

Monday 4th June 2018
quotequote all
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!!

thumbup

mattyn1

Original Poster:

5,836 posts

157 months

Monday 4th June 2018
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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.

mattyn1

Original Poster:

5,836 posts

157 months

Tuesday 5th June 2018
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Can I ask a question Tumbler..... what to you mean by actively funding? And how much does treatment cost in the States?

mattyn1

Original Poster:

5,836 posts

157 months

Friday 8th June 2018
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Berkshire bred said:
Just read through your posts about your condition. I'm sure you've heard it a thousand times but you have my sincerest condolences. Hearing things like this make me even more grateful for being healthy and determined to enjoy life, sorry if this sounds like a tasteless comment, it isn't meant too. I wish you all the best and to be as happy as you can, from some stranger on the Interwebwink
Echoed countless times I am sure - to Tumbler and everyone on PH and beyond who is suffering. Education is the key for us to support - take DKMS for example - it is so simple to register, and one day you can make a difference to someone.

This has been a great thread for me - I cannot thank enough those that have offered good wishes, those that have gone the extra bit to help, and make Jacks recent few months memorable. I am sure we will continue to do what ever we can.