That was a sh*t day!
Discussion
Legacywr said:
How often is he having treatment?
I did find having the PIC line fitted very relaxing. I had a Hickman line fitted too... I also mangaged to pull that out too, totally my fault
Fortnightly. I did find having the PIC line fitted very relaxing. I had a Hickman line fitted too... I also mangaged to pull that out too, totally my fault
Everyone we have spoken to has recommended Pic. But as it is fortnightly and his veins recover, I or the staff can’t insist too much. We were just chatting about it during the football..... he feels really comfy doing this bit his way.
We had snags two weeks ago with the cannular. Today it went straight in and held up. That makes Jack feel good, and if he feels good, I feel good.
Even the last minute Arsenal goal has not dampened his spirits. We are expecting nausea tomorrow.... we shall wait and see.
So here we are... in the barbers. Jack woke today and requested a bacon sandwich. He is feeling ok so the more powerful anti sickness tablets seem to be doing their job.
We were informed hair loss can happen any time after the second session. In his typically positive manner, the hair is coming off now. I admire this positiveness but it so emotional. Pride, worry, fear, some panic, realisation all rolled into one.
I say coming off.... as I type and watch he is having some styling done so we shall see what the final cut is like!
We were informed hair loss can happen any time after the second session. In his typically positive manner, the hair is coming off now. I admire this positiveness but it so emotional. Pride, worry, fear, some panic, realisation all rolled into one.
I say coming off.... as I type and watch he is having some styling done so we shall see what the final cut is like!
FocusRS3 said:
mattyn1 said:
He is sparkling today thank you.... he has taken his brother off shopping to West Quay!
Allows me to do some decorating.... the bathroom..... wish I had not started this!
Amazing news have a top weekend !Allows me to do some decorating.... the bathroom..... wish I had not started this!
It does seem
We have dodged the nausea this time round! Must be good tablets!
I think I might take them all out for a fat boy fry up tomorrow morning!!
well its been a week since the last update. All has been ok to be fair. The stronger anti sickness tablets seem to do the job and Jack has had a reasonably normal week or so. The next session is Tuesday next week - and that is three of the twelve that was initially prescribed. As I am a bit of a keen stats man, I have Jack talking we are 1/4 of the way through, much better than saying 9 to go!
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!!
Jack and I have been overwhelmed with the level of support, not only in "best wishes" messages, but in action as well - and you can see from the offers in this thread. It is utterly amazing.
Which leads me on to the fund raising we are just starting. I assume there is no problem me posting a Just Giving link in this thread? We are planning the standard head shave bit that will work with CLIC Sargents Big Shave Off events. Also my daughter is trying to plan a cancer awareness event through her school - now she has the backing of CLIC Sargent who have been to the school to offer support, also the C of E reverend from my work has contacted the school. However i get the impression the school are not too keen to be involved, which I am disappointed with.
Beth who works for CLIC Sargent (our case worker/social worker/therapist etc) is providing my daughter with a load of support info that can be taken to the school. I just hope we get somewhere as this will be really good for her. She understandably is unfortunately pushed out where priority is toward Jack.
So if anyone has any effective fund raising ideas please let me know. We will utilise my Mrs Face Book to promulgate the link, but effective ideas would be appreciated!
Anyway, here's to a great weekend. Look out for us!
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!!
Jack and I have been overwhelmed with the level of support, not only in "best wishes" messages, but in action as well - and you can see from the offers in this thread. It is utterly amazing.
Which leads me on to the fund raising we are just starting. I assume there is no problem me posting a Just Giving link in this thread? We are planning the standard head shave bit that will work with CLIC Sargents Big Shave Off events. Also my daughter is trying to plan a cancer awareness event through her school - now she has the backing of CLIC Sargent who have been to the school to offer support, also the C of E reverend from my work has contacted the school. However i get the impression the school are not too keen to be involved, which I am disappointed with.
Beth who works for CLIC Sargent (our case worker/social worker/therapist etc) is providing my daughter with a load of support info that can be taken to the school. I just hope we get somewhere as this will be really good for her. She understandably is unfortunately pushed out where priority is toward Jack.
So if anyone has any effective fund raising ideas please let me know. We will utilise my Mrs Face Book to promulgate the link, but effective ideas would be appreciated!
Anyway, here's to a great weekend. Look out for us!
Thanks AB!
4 x 4 Golf Balls? What is that?
ETA.....Ah... I think I understand!! We are not talking Land Rovers running over the greens are we!! I have seen foot golf but never 4 x 4 golf! Might be fun though! We will see Clarkson donut soon!!!!
Lol.... it is early still!!
You mean four 4ball tee times I assume! Mate... I am toying with organising a raffle/draw/auction so I might take you up on that. Thank you masses for the offer.
4 x 4 Golf Balls? What is that?
ETA.....Ah... I think I understand!! We are not talking Land Rovers running over the greens are we!! I have seen foot golf but never 4 x 4 golf! Might be fun though! We will see Clarkson donut soon!!!!
Lol.... it is early still!!
You mean four 4ball tee times I assume! Mate... I am toying with organising a raffle/draw/auction so I might take you up on that. Thank you masses for the offer.
AB said:
Land Rovers tearing up the course would probably be more fun and less frustrating but you're right, 4 rounds of golf for 4 people and I'll pick up the tab for a beer and burger each at the end.
Only snag as I say is location. You probably wouldn't want to be more than about an hour or so from the Wirral.
Terrific thank you. You have a PM!Only snag as I say is location. You probably wouldn't want to be more than about an hour or so from the Wirral.
TwigtheWonderkid said:
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.
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.
Are you going today Twig? I have no idea what box etc we are in...... Sue (the woman who has organised this) has said all will be revealed today!!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
I am as excited as Jack!
TwigtheWonderkid said:
So what was the day like. Did you all enjoy it. Shame it was a 0-0 draw, but not a bad game.
The day was ultra amazing! Jack was on top form thankfully and we were looked after in the players families lounge. Loads of food - the lamb was amazing!Good view - the grief Mahrez got for his dive was not screened on TV - but he took it very well. A nicely timed thumbs up to our corner was superb! I think he could fit in at Chelsea!
At about 80 mins we were ushered to the exec Reception for the boys to be given their passes. Then Ron Harris and Gary Chivers came over for a chat before the boys were taken to meet the players. Jacks idol David Luiz wrote a cracking message on the back of his shirt. I waited in the reception where I chatted to the lovely girls behind the desk until John Motson popped in. He speaks in exactly the same tone as he commentates. It is rather amusing! Anyway no photo with JM as I was a bit in awe as he is TV sport royalty!
Absolute cracking day. My thoughts on the game were hazard was all over the place but so clumsy. It did not look it on the TV but my god it is fast! Also, Harry Maguire is built like a church.... massive! Also, we did not look as bad from that corner as we did on TV.
Edited by mattyn1 on Monday 15th January 19:49
Treatment 2A today..... so third of twelve. All going good. The centre is a little quiet, but just as I type now, had to have a quiet word with one of the support staff.
The fourth bag is quite nasty stuff and heavily diluted on the drip with a saline bag. The saline bag ran out so Jack's arm was getting a trifle warm. We pressed the button for help .... this woman poked her head round the corner asking if it was us buzzing. When I said yes we need the nurse she started on telling us how often she hears the buzz but it is a false alarm!! “Stop talking and please get the nurse. We need her now!”
All sorted though! Jack just said it gets proper hot inside his vein! Must be a really odd feeling!!
The fourth bag is quite nasty stuff and heavily diluted on the drip with a saline bag. The saline bag ran out so Jack's arm was getting a trifle warm. We pressed the button for help .... this woman poked her head round the corner asking if it was us buzzing. When I said yes we need the nurse she started on telling us how often she hears the buzz but it is a false alarm!! “Stop talking and please get the nurse. We need her now!”
All sorted though! Jack just said it gets proper hot inside his vein! Must be a really odd feeling!!
Here we go again. Session 2D tomorrow - which on completion we should be 1/3 through it all. That is as long as the PET Scan goes as we hope. That is scheduled for the end of next week!
Thank you to those that have donated a bit to the CLIC Sargent appeal. Really - big thanks as they continue to do a wonderful job. Having my head shaved on Thursday in support of Jack - who is holding on to his hair remarkably well - it is quite thin but if you didn't know I doubt you would guess something was wrong! so anyway, head shave at work to hopefully get some more cash for CS.
Jack doing well - he has had a week or so back in Cornwall where he has loved texting me picture of the pasties he has been munching on! They are not the same in Hampshire!
And finally, everyone still remains chipper and cheerful. Jack's sense of humour still quite dark - but that beside, he seems to be maturing by the week. He said in the car at the weekend he wants to get more out of life than just educate & career. He wants to do things to remember - not necessarily dangerous (his words) but fulfilling too.
He hopes when we go to VMAX he can start with getting as close to 200mph as possible!
The continued words of encouragement, thoughts, and general best wishes continue to come in, so thank you.
Thank you to those that have donated a bit to the CLIC Sargent appeal. Really - big thanks as they continue to do a wonderful job. Having my head shaved on Thursday in support of Jack - who is holding on to his hair remarkably well - it is quite thin but if you didn't know I doubt you would guess something was wrong! so anyway, head shave at work to hopefully get some more cash for CS.
Jack doing well - he has had a week or so back in Cornwall where he has loved texting me picture of the pasties he has been munching on! They are not the same in Hampshire!
And finally, everyone still remains chipper and cheerful. Jack's sense of humour still quite dark - but that beside, he seems to be maturing by the week. He said in the car at the weekend he wants to get more out of life than just educate & career. He wants to do things to remember - not necessarily dangerous (his words) but fulfilling too.
He hopes when we go to VMAX he can start with getting as close to 200mph as possible!
The continued words of encouragement, thoughts, and general best wishes continue to come in, so thank you.
AB said:
Positive news and thoughts still with you.
No idea how I'd cope in the situation, I suspect not quite as well!
Morning and thank you! No idea how I'd cope in the situation, I suspect not quite as well!
I would have thought the same as you. But you just do what is needed. I have had many wobbles....still do. Jack is so strong though we lean on each other.
Again fortunately Jack seems to have dodged a bullet with nausea - the high grade anti sickness tablets seem to be doing the job. Also the Dr does not seem concerned that he will be more susceptible to sickness as the treatment progresses. He said as we go through the treatment, the body will get used to it and fight it more and more. I was concerned the body would deteriorate and make sickness more likely.
Anyway all was good Tuesday, and yesterday as a recovery day was pretty straightforward. It does wear him out though but he is eating like a horse due to his steroids he is taking! So much so we went out last night for "all you can eat" ribs! I had a food hangover this morning!
And today is the day my hair comes off! Family are coming in to rattle the buckets - my stylist is coming in to give me the trendiest Grade 0 cut ever! And its freezing out there! wish me luck!
Anyway all was good Tuesday, and yesterday as a recovery day was pretty straightforward. It does wear him out though but he is eating like a horse due to his steroids he is taking! So much so we went out last night for "all you can eat" ribs! I had a food hangover this morning!
And today is the day my hair comes off! Family are coming in to rattle the buckets - my stylist is coming in to give me the trendiest Grade 0 cut ever! And its freezing out there! wish me luck!
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