That was a sh*t day!
Discussion
TwigtheWonderkid said:
mattyn1 said:
Anyway we had some amazing news this week. A lady called Sally Mills who works for the Chelsea FC Foundation called the Mrs. We now have an invitation to the game on Saturday (remember the boys bought me a ticket anyway). But instead of me and Jack being in the East Stand, and Tom (his brother) being in the Shed End, we are in a hospitality box, with all the trimmings that come with that.
That is not all - Tom and Jack will get to go to the tunnel after the game to meet the players and manager. My god - they are so excited. In fact so am I. We have been told not to wear away team paraphernalia! Lol - as if!!
Chelsea get a lot of stick in general but they are bloody brilliant at this type of thing, second to none. Youtube "John Terry Oran Tully" for a prime example. That is not all - Tom and Jack will get to go to the tunnel after the game to meet the players and manager. My god - they are so excited. In fact so am I. We have been told not to wear away team paraphernalia! Lol - as if!!
There was a Southampton fan with a disabled daughter who was posting on another thread recently about there away trip to Chelsea, and what the club provided.
And the hospitality packages at the Bridge are fab. Great food.
Edited by TwigtheWonderkid on Saturday 13th January 09:38
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...
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...
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. 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...
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 said:
I did make an assumption most clubs do this sort of thing - but from what I have heard I am not so sure.
I'm sure they do, but maybe I'm biased, but I think that Chelsea do it better than most, if not all. The club is wealthy, which helps, and because of our location of some of the corporate guests we attract, the dining experiences the club provide have to be top quality. Hollywood A listers and foreign royalty aren't going to accept a wagon wheel and a Bovril. The club's community work and charity stuff are also very good. We were the first club to pay our unskilled staff (cleaners, security bods etc) National Living Wage as opposed to National Minimum Wage. When you're on £7.50 an hour, a bump up to £9.50 an hour makes a big difference.
The club does have a bad rep, Russian Oligarch money buying trophies etc. And it's not altogether an unfair criticism. But some of the money washing around the place does get diverted to worthy endeavours.
Great news about your lad.
mattyn1 said:
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...
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. 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...
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!
I didn't go on the pitch with her, I stood pitchside.
Daft as it sounds, I didn't want to either. This was her experience and I wanted her to do it on her own, with the Chelsea and Saints kids and respective coaches. I was the only parent allowed pitch side as I needed to help her to the side of the pitch due to her mobility issues, but when walking onto the pitch she held the saints coach hand and managed to stay upright on the pitch.
They scored the goals at the Chelsea end, forgive me but that may have been the Shed end?
It was fantastic when she managed to kick the ball in the back of the net (when I say kick it trickled over the line!) but it seemed that the whole end cheered and applauded her, she certainly seemed to milk it with the applause! I must admit at that point I had a slight tear in my eye, all the stress and worry about bringing up a disabled child and the memories of packing all the baby stuff away when we were told she wouldn't come home from hospital christmas eve when 8 days old disappeared at that point. It was her 9th birthday at the time as well!
Anyways listen to me going on, this is your thread! I do agree that Chelsea did it very well and good on them. Whilst I will always be a Saints supporter, I guess we have a space for Chelsea now too.
Anyways, any excuse to post a photo or two!
Hope everything continues ok for you both in the future. Fingers crossed!
sir humphrey appleby said:
They scored the goals at the Chelsea end, forgive me but that may have been the Shed end?
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 (the little girl on the far right of the pic), wasn't exactly a piledriver but it got over the line in the end!!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. 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!
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!
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!
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!
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 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!
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.
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.
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.
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.
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.
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