Halfway point ish and its going well, Jon's temp has returned to normal, he called me this morning to say his laptop wasn't working but when I was on the phone he tried again and it started up it just needed the threat of me I think. He told me he feels fine today.
I have managed today to host a booklet which Jon and I found useful reading before his treatment (thank you TAG for hosting it)
·Purple Ronnie Guide
Its a very simple guide talking you through Lymphoma's and what to expect, with Purple Ronnie pics to help. I have added it to the links section of the blog so its always available.
Edit: After an oscar winning performance Lizz had to change the post. Unsure if its a cold or hayfever will be going to the doctors tomorrow to find out. I have felt pretty low today at the thought of not visiting Jon but if it ends up a cold its the way it has to be.
31 May 2007
Halfway point ish and its going well, Jon's temp has returned to normal, he called me this morning to say his laptop wasn't working but when I was on the phone he tried again and it started up it just needed the threat of me I think. He told me he feels fine today.
30 May 2007
Busy day for visitors today, but good company for Jon, first visitors of the day were Sarah & Aaron, I arrived just after they left at lunchtime but Jon said it was great to see them both. Thanx Mandy for babysitting so they could both come.
We then had someone form filling to do, but didnt take long, and finally Jon got to see the season finale to Lost.. I forgot to take it in yesterday and got told off! as soon as we set it going the doctors then came round to do thier rounds, typical but everything was fine and they are pleased with Jons progress. Jon finished watching Lost, I caught bits of it from behind my magazine.
Then his evening meal turned up, now its been a bit of a battle to get Jon to eat everything, Its hard with mouth ulcers and the tinny taste thats beginning to creep in, but I told Jon (with my motherly voice) that he had to eat it all, when his meal arrived today he ate the soup no problem, then said he was too full for the cooked meal, we took the lid off and it was the tiniest omlette you have ever seen so he did eat it. Then had crackers and a tiny bit of cheese for pud. He then looked at me and said "see I did eat it all bossy britches", but then I noticed he had ticked small portion on his menu.. Im not going to win this one.
In the afternoon Jon started getting cold and put on his jacket, and changed from shorts into joggers, he even put socks on, so I asked the nurse to check his temperature again and they did a while later, his temp is back up. So they have taken lots of bloods and other samples from him again, he is neutropenic at the moment with his blood count at 0, so he may have picked up an infection, or it could be because they stopped one of his anti biotics today.
Kim visited this eve which was great, she got to see how mean Jon is at giving away his blood, the nurse had no problem finding a vein, but the flow is really slow, and when it came to getting a sample from the bead he was holding onto his blood and not sharing, took a while when it came Jon cheered and said "see you can get blood from a stone" Just as this was happening a couple of firefighters arrived so I took them off to the day room till Jon had finished having the bloods taken, Sorry I didnt get to say cheerio Kim, catch you next time your in.
Tony and Chris from Hungerford Firestation visited Jon for a while, was good to see him laughing and joking along with them. Almost could forget there was anything wrong seeing him animated and happy with his mates. They commented on how well Jon looks.
I stayed a little later this eve, till the doctor had been round re Jons temperature, she said there wasnt anything to worry about that everything else is fine and the cough he has now and again isnt on his chest. They have been asking for a few days if hes coughing so I guess it must be one of the symptoms they look out for.
eek look how long this blog is sorry essay again, oh a quick note about people who want to phone Jon, you can phone his landline number thats been given to you anytime, if he doesnt want calls he can unplug the phone or switch his mobile off.
Posted by Venus TAG at 22:25
29 May 2007
At the moment you've prob read thats Jon's in the isolation room , they really prefer it to be a maximum of 2 visitors at a time, something to do with filtering the air etc.
So I thought I would make a timetable on the side of the blog with a rough idea over a few days period of times he is free, and times family have told us they would like to visit, so that nobody makes a journey then only gets a few mins before the next group arrive.
Also we will need to monitor Jon's tiredness as to how long people stay etc but at the moment hes doing fine and just sleeps when I'm there *grin*
I can access the blog from the hospital to amend if people send a text asking to come in.
Posted by Venus TAG at 21:44
Jon just called to say he is due a Lumber puncture again today at 2pm.
Have decided not to take the kids in to see Jon, as Rob is sounding full of cold, am unsure if its hay fever or a cold, have dosed him up but its not worth the risk, so have 2 disappointed kids today, but they understand that Daddy cant catch anything or it will make his stay in hospital longer.
Am really scared of catching anything myself, the thought of having to stay away is really painful, so apart from sealing myself into a plastic bubble I guess I just have to hope for luck to be on our side.
Will post more later when I get back home, his mum is visiting this morning so it leaves me time to get some jobs done at home.
Well Jon had the lumber puncture, went well, the doc did touch a nerve which made his leg have pins n needles for a bit but it did wear off. This process did make Jon tired again, so after a short sleep we watched a bit of TV quietly, I did notice a change in Jon today, hasn't got his spark, but we have been warned of this for at least this week, he may get very tired, and emotional.
Posted by Venus TAG at 10:50
28 May 2007
Well I spent a long time with Jon today and they were right, he is back to his old self again, the flu symptoms have gone, they have warned that over the next few days he may go downhill again as his white blood cell count has gone down and his body will struggle to fight any infections.
Jon's Dad and brother visited him today with lots of great books, he will be kept busy for months with those, thank you. Was nice to sit in the day room and be in the comfy chairs, shame its Jon's last chance to go in there for a while.
He is on a cooked food only diet, he is allowed chocolate and crisps if he eats them as soon as they are opened. He can have small bottles of drink but again only if they get drunk immediatly.He isnt allowed bottled water though.. strange but true. No nuts or bread or salad. He can have fruit but only if he peels the skin off the fruit himself,(so no grapes or he will be peeling for hours).
Finally he has been moved back to a positive pressure isolation room, yay he has a landline phone (please call Lizz if you would like this phone number), also back to having the fridge and exercise bike and more cupboard space, he's not looking foward to the isolation but its better in the new room than the old ward room.
They have asked that not too much is brought in to Jon, as the room has to stay as clean as possible, so just bringing yourself and a smile and a joke will be plenty. The odd bag of sweets if he starts to run out but at the min he has quite a few packets to keep us... I mean him going.
Its good to see him up and about out of bed again, keep going Jon your doing fantastic.
Posted by Venus TAG at 18:58
27 May 2007
Immune system has lowered so Jon is now going to be on a stricter diet, as his body wont be able to digest certain items. Will find out more when I visit him tomorrow.
Have felt guilty not going in today, but in other ways have enjoyed spending a day with just Chris. As my shower/bath still isn't fixed I cheated today and took Chris swimming and had a shower at the pool. After swimming we spent the afternoon pottery painting, I took Chris along, Kids are only allowed to go on Sundays. As the hotel complex is meant to be kid free. Chris has painted a mug with a dalek and a tardis, unsure quite how it will turn out but he enjoyed himself.
Have spoken a couple of times to Jon today on the phone, hes been visited by his dad, and my parents today. At least he is free from all the lines this afternoon, I think just the anti biotic gets hooked up when he needs to have it. So he wandered off to the day room with mum and dad to show them round.
Unsure now his immune system has lowered if he will be able to leave his room for much longer. Nows the time to really be careful you don't have or been near people with colds/flu or stomache bugs recently, or you haven't had contact with anyone with Chickenpox, if you decide to visit Jon. Please call ahead to either of us to check its ok for him to have visitors.
Looking forward to Rob coming home tomorrow. Chris has missed him lots.
Posted by Venus TAG at 19:03
26 May 2007
There is a marked improvement in Jon today, he is communicating and getting back to his old self.
Steve & Toni visited him this morning, Thanx for the book and dvd's, I've now fixed Jon's laptop to view the dvd's it was missing a codec from windows media player so I downloaded a diff video player and he can watch the stuff I record from TV too.
Kim & Sarah visited him this afternoon, I found him with a huge bag of mixed sweets and a bright smiley face balloon, it certainly brightens up that lovely voilet room... such a nice colour.
I didnt go in till this afternoon, spent the morning with Chris, just chilling out watching TV and taking Gemma for a walk. We then went to the pet shop and got Chris 2 new stick insects as all his went a while ago. He chose two and has named them "Sticky & Woody" such original names. Still its better than the names of the giant African snails which seem to have come out of hibernation double the size, they are called Vadar, Obe-wan and Anakin, no guesses for the boys fav films.
By this eve I could tell Jon was getting tired again, we watched a bit of TV together but his eyes kept closing, I think he had a bit of a nap because when I called him a few mins ago to check if Rob had called he sounded alot brighter, said the Aches in his arms and legs had now eased off and he doesnt feel so hot.
Rob is having a great time away in Germany, apparently told Jon hes spent most of his money... was hoping for some change but no chance I guess. He's really excited about tomorrow because they get let loose in Phantasia land..(am guessing its a theme park). He hasnt complained about the food which he was worried about so I guess its not been too bad.
Anyhows great to see Jon sounding better, hopefully were on track for him to be feeling alot more like his old self by monday, except some of the side effects from the chemo might start kicking in, still hes battling on and staying positive which is a big bonus.
Posted by Venus TAG at 22:18
25 May 2007
Hi sorry for the late blog, been helping set mum up on ebay on her laptop, been a while since Ive been near ebay out of practice :p
Jon's not had the best of days today, he has caught an infection in his Hickman line, its had to be removed and they have replaced it with a Pickman line its pretty much the same thing but rather than being attatched to his chest, its attatched to his arm, it now has only 2 beads rather than three.
With this infection Jon has now got flu type symptoms so hes got a very high temperature and is shaking lots. They are dealing with it brilliantly at the hospital with anti biotics and pain relief etc. He is though very very sleepy, so maybe visits this weekend can be left to family only please.
I will let everyone know how hes getting on, as to when people can go back to visiting again, but at the moment he needs plenty of rest, sleep is going to be the best thing for him. I spent most of today with him but he was drifting in and out of sleep constantly, dont think we actually held a full conversation. They said it maybe Monday before Jon's back to his old self, some of his tiredness is also due to the chemo treatment for the past few days.
Try not to worry too much from this news they are very positive that this is just a small blip in the treatment. He's been doing so well I'm sure he will be back texting on his phone every 10 mins real soon.
Posted by Venus TAG at 22:48
24 May 2007
Will edit more later but just a quick note to say Rob left on time, had alarms set all over the house starting at 2.45am to 3.15am. (It worked)
We had breakfast and even got to watch part of an Austin Powers movie before it was time to head out. Lots of excited children at the school and like myself lots of sleepy, quiet parents. The coach left promptly at 4.15am Rob sat grinning and waving by the window. Will miss my little shadow this week but he promises to take hundreds of photos to show Jon when he gets home. Have looked at the weather for his area says no rain, good luck Rob enjoy your trip!
Jon was very very tired today when I visited, not sure if its from the drugs or the fact the pumps keep beeping during the night when the bags of fluids finish, either way he spent alot of time trying to sleep but with the amount of nurses/doctors that pop in to do tests all the time, and the cleaners and tea ladies coming in other times, its not easy for him to catch up on lost sleep.
Hes got a bit of pain in his neck where his hickman line is, they think he may have an infection near the tube so have put him on more tablets, his tablet count at the min is approx 10 per time now with the added anti biotics.
We did know that Jon would need to get unwell to get well (how i explained it to the kids) but seeing it happen makes it hard. They took bloods yesterday to check his levels as to whether he can come of the fluids yet.
Keep going Jon, were all with you on this journey, and to pinch the guild wars motto "You never fight alone", I will be beside you all the way, Love Lizz
Posted by Venus TAG at 04:21
23 May 2007
Yikes getting nervous with this blog now, seems its being read world wide, must watch my spellings. Thanks everyone for tuning in to it though.
Jon had a visit from his mum this morning, she stayed for a couple of hours along with her friend, which meant I had time to go food shopping, suddenly realized we had nothing to put in the lunch boxes today.
I got to the hospital midday ready for the afternoon to find Jon with 3 pumps of liquids, now thats just being greedy! He has had an hour of Cytarabine then 6 hours of Methotrexate on one pump, 2 x 6 hours of fluids on the middle pump and the 12 hours of steroids on the final pump. His heart is still racing a little fast but has improved today with the fluid intake.
There thats the technical bit over with, in himself Jon's doing great, hes getting phone calls from family and friends which is great. It's nice to see him laughing with his mates on the phone.
His final visit of the day was my mum and Robert as well for a short visit before his early night (not a chance with the football on, but will try) before his German trip tomorrow. I'm so scared I will oversleep and not wake up at 3am.
Am writing this mid game of the Liverpool match they are losing 1-0 to AC Milan I do hope Jon didn't shout too loud at the TV. (I did warn the nurse on duty to soundproof his door)
Just a final note, Jon is also allowed to leave his room at the moment and escape as far as the Day room, the room has 2 computers with internet access, so Jon's been checking the blog daily for replies, and the TAG forum for messages and jokes to tell the nursing staff in the evenings. He cant actually check his hotmail, sorry about that.
You don't need to be a blog member to leave a message you can sign it as other and just enter a username and leave the password box blank, or you can have anonymous dotted and sign the end of your comment. Doesn't need to be an essay like mine but he does enjoy reading the comments. One day I will remember to keep the blog short and sweet.
Posted by Venus TAG at 20:38
22 May 2007
Jon had a quiet morning today as I didn't arrive until lunchtime, found him busy on the laptop buying players for his virtual footie team game. They started his Chemo and steroids a bit earlier today, apparently his steroids finished at 2am yesterday, they finished at 10pm today.
Found out a bit more about Jon's treatment today its still all another language to me but in case anyone wants to know:
Day 1 & 2 = Idarubicin (Chemo) for 1/2 hour/ Dexamethasone (steroid) for 12 hours/ Cytarabine for 1 hour.
Alongside this are eyedrops, anti sick pills, anti fungal pills.. hes going to rattle.
Day 3 is a different Chemo called Methotrexate but not sure which of the previous it replaces. Will find out tomorrow.
All in all, todays treatment has gone a little better sickness wise, but Jon's heart has speeded up a bit, they assure us its pretty normal on the amount of steriods he is on, and they are giving him extra fluid bags into his beads to help counter act it. Hes had a full MOT today of ECG, and Blood sugar, weight and then all the normal obs. Cant fault the efficiency of the staff, everyone is great.
When I left at 6.30 Jon was joined by his Dad, and 2 sisters Kim & Sarah, Thanx for the dvd's Sarah, not sure Im going to watch the horror one but might catch the comedy together this week sometime.
I'm busy getting eldest son packed up ready for a 5 day school trip to Germany, hes going to Linz (I think), not easy trying to keep everything going at home and get him ready to go. Thankfully Mum has been on hand and done some shopping for me today for bits I had forgotten. Cheers Mum xxx
Oh I must remember to speak to the nurses tomorrow,need to warn them to clear out any people in rooms and wards next to Jon tomorrow if they let him watch the football, Liverpool in the European cup final... am so glad I'm going to be at home in bed asleep as I will be up at 3am on Thurs to get Rob to school for his trip.
Posted by Venus TAG at 23:07
21 May 2007
Nothing much happened this morning, few observations were done and his lines (his beads as he calls them) were flushed ready for the treatment. They also gave him 5 tablets to take to fight different infections.
Finally the time came at about 1-2pm they loaded up 2 pumps, one pump with an hours worth of Chemotherapy liquid, (sorry didnt catch the name of it) after an hour that was swapped with a 2nd bag of clear chemotherapy liquid for another hour. on another pump was a 12 hour bag of steroid fluid. I will find out all the proper names etc but the nurses were so busy today they didnt really get time to stop and explain.He also needs eyedrops 4 times a day too.
After the 2nd lot of treatment Jon got sleepy and had a snooze for about an hour, when I left him at 6.30pm he had just had more obs done (temp, bloodpressure etc)
He called me not long after I got home to say hes already been sick twice, hes unsure if its the treatment or something hes eaten, he feels a bit better now, but is pretty worn out.
He had one of his old workmates (Simon) visit him this eve, said it nice to see him again and catch up.
Posted by Venus TAG at 20:47
20 May 2007
Well after a great meal out with Paul, Michelle and the kids, thanx for that, it was nice to relax and have a good meal with friends to calm us down, nerves are starting to get to me about having to go back to motorway driving daily.
Chickend out of driving on the M4 to the hospital so opted for the good old A4, got to the ward and eeeekkkkk.... they have given Jon's 5 star room to someone else this week, hes been downgraded to an overflow room, so instead of a TV, Stereo, Fridge, Exercise machine etc.... he has a bed and a table and a small cupboard... grrrr will have to see what we can do to get him moved asap.
So Im afraid its back to the 49p per Min patientline number you all have, at least that number hasnt changed, if he does get moved to the other section of the ward I will pass out the landline number to those who request it. He should though have his mobile on most of the time unless hes actually having treatment so you can always try that its cheaper than the hospital bedphone.
I think were both nervous, but needing the next stage to happen. So weve been dreading the return to hospital but looking forward to it being one step closer to Jons recovery. The kids got to see where Jon is staying, they found the cartoon channel on the bed TV so were happy.
Will find it difficult to sleep tonight without the snores next to me... missing you already Jon, cya tomorrow.
Posted by Venus TAG at 22:04
Well the kids are happy today, Grandad turned up at the crack of dawn , well ok 9.30am to build the trampoline they bought the kids, not sure who was most excited the kids or grandad!
The actual trampoline went together pretty easy, the side netting was a nightmare but 3 hours later the boys got to bounce away.
Even Grandad had a go... much to the kids delight!
Jon wasnt allowed a go, the boys said he cant try it out until hes better. So Dad ended up doing all the camera work.
After a busy morning, were off out for a meal now, will edit post about it later
Posted by Venus TAG at 14:38
19 May 2007
Today has been a very quiet day which after yesterday was needed. Jon seems a little tired today so didn't plan too much.
I escaped while Jon's Dad visited and they watched the FA Cup final, I went pottery painting, its so relaxing, just concentrating on painting a mug with music playing in the background, would recommend it to anyone (Clare's at Littlecote house) near Chilton Foliat.
Jon and his dad had another try at the bathroom this afternoon, and no its not fixed, no matter what we seem to do water leaks down the side of the bath onto the floor when the shower is used, so were open to ideas from all you readers out there as to how to stop this leak, they have put mastic which is waterproof around the bath and the taps 4 times now but nothing works.
This eve we had a delicious meal at Steve & Toni's house (Jon's brother & sister in law),Jon's Dad came along too, it was beautiful, I had home made steak & kidney pudding, Jon had a huge lamb shank, was better meal than you get in restaurants, thanks both of you for putting up with us and the kids, and being forced to watch one of the kids DVD's afterwards. "Son of the Mask" not as funny without Jim Carey but a good film, again 4 out of 5 from us.
Its great to relax, and unwind, and swap tales on what Jon was like when he grew up, He did have to re tell the story of how one of his fingers almost got chopped off by Sarah and Steve letting the pram down while he was inside it and his finger getting caught (thought I would share that one for keepsake here lol).
P.s Mo have watered the turf twice today hope thats enough!
Posted by Venus TAG at 21:36
18 May 2007
Well after a lovely, quiet, slow morning, the afternoon today was total chaos!
First thanx to Nick for visiting Jon, its good for Jon to keep up with his mates from work. Oh and hope you didn't get too much mud on you after helping to carry in the turf that arrived at the same time as the glazier to put new glass in the front window...
New glass was needed as the old glass had constant water condensation, we knew this would be happening sometime this week, we booked it a while ago but today was the first dry day the guy could fit us in. Wow its great to have new windows, no more lime scale stuck inside the double glazing... they gleam.. need sunglasses to look out the window.
Have to give a quick mention to Mrs Anderson & Mrs Butler from school who popped round with a wonderful gift for Jon, its been collected from all the staff, for once I'm speechless as to how to even begin to say thank you. The card from everyone made me cry especially the last comment written by the children of year R, am missing them lots too. Thank you for the visit, hope we get to have longer next time.
Thanx also Sarah (Jon's Sis) for visiting and for the lovely choc's, no I haven't eaten them yet, will let Jon have them in his room next week, then I will wait till hes asleep and eat them hehehe. Hope the foot heals up soon Sarah, and will *wink* work on what we talked about.
Oh did I mention dry day... well actually no 10 mins before my brother came early evening to lay the turf on the lovely dry topsoil from yesterday the heavens opened.. but being the trooper he is my brother got drenched and rather than a mud patch with the odd tuft of grass we now have a lawn again... wonder if he will come round everyday to take care of it? should mention Dad came to the rescue and helped too, cheers both of you.
Green.... its green... out the front we have gleaming windows and out the back we have beautiful green grass. Maybe there is some good out of being ill? I know I know its bad to say things like that but...well... wont mention anything else needs fixing or we will end up with the family building us a new house lol.
This eve the four of us spent time in front of the TV watching a film eating microwave popcorn (2nd batch, I still managed to burn the first lot!). We watched a film called "Willow" PG rated.. grrr too gory for me.. in fact Chris and I both kept hiding behind pillows. Its actually a nice film I would rate it 4 out of 5. It has an element of Lord of the rings to it.
So sorry the blogs late (got told off on msn :p ) but couldn't pause the film to come write it earlier.
Well 2 days left till everything starts, will post a schedule of Jon's treatment times as soon as I can on monday so everyone knows the best times to visit etc.
Keep safe everyone catch u tomorrow.
Posted by Venus TAG at 22:00
17 May 2007
Today has been a busy day so its whizzed past pretty quick.
The start of the day wasn't great Rob our eldest said he didn't feel well, but we think it was just nerves from tests due in Maths today at school, so being the cruel mum I am I sent him in, got a phone call at lunchtime to have him home he was feeling unwell, once home he ate his lunch and was ready to sit and watch TV for the afternoon... tough decision made but Jon and I decided he didn't actually look ill so we took him back to school for the last lesson.
Mothers instinct made we want to believe he was ill, but in reality I knew he was just wanting to be at home. We know hes very worried about Jon, we all are, but Rob is finding this all a bit hard to cope with. It's really difficult I want to allow Rob time at home with Jon but I know his education is important too.... I feel really torn over this.
Oh yeah back to the title...
Jon's Dad spent the morning trying to fix a leak in our bathroom, Monday night we had water coming through the kitchen light fitting (underneath the bathroom), we've been trying to sort out where the leak was every day, fingers crossed Jon and his dad fixed it today! Its just so strange that it all looks ok but turn the shower on and water appears on the floor beneath the bath.
Also my Dad and Brother Mo turned up today to give our mess of a back garden a makeover, so far we have topsoil down and all the weeds have gone, will really miss that 6ft giant thistle bush that we had grown to love and avoid.... turf arrives tomorrow.
Thanks Dads !!!
Both Jon and I appreciate all the help the family are giving to us, everyone is helping out in their own ways. Everyone has been helping look after the kids when I visited the hospital, I'm not sure I could have got through this without the support of all the family, in case I haven's said it enough.
Also this eve a couple of firemen from Jon's work came to visit for a cup of tea on their way home from work, cheers guys we both appreciate that people take time out to come visit and just help keep spirits up.
Posted by Venus TAG at 20:15
16 May 2007
Had a good day today, Jon's mum and her friend came up from Dorset to visit, my mum was also here visiting, so we all went out for lunch. Jon was outnumbered sat at the table with 4 women, It was good for Jon's mum to see how well he is doing, It cant be easy only having contact via a phone. Was nice to see them laughing together today.
We spent the afternoon getting the laptop ready full of games etc so that Jon can use it for his long stay.
Only 4 days left at home before he has to go into hospital for a 3 week period. 21st May will soon be upon us, and we've so much yet to organize.
One quick thought, Jon has very little hair (his own choice to hide the grey) if his hair should fall out due to chemo he wont look any different, do you think he should apply for a NHS wig to go back to his youthful locks? (see wedding pic on website lol)
Posted by Venus TAG at 19:19
15 May 2007
Am very new to the world of Blogg's but hopefully it will all flow along easily enough.
I guess first I need to introduce us, I am Lizz am 37 and work as a teaching assistant in a local primary school, Jon my hubby is a firefighter oh and hes also 37 but for 2 weeks a year I enjoy him being my toy boy as I'm older by 14 days. We have 2 sons Rob aged 12 and Chris age 8. Were your normal average household, happy always short of cash and full of energy esp needed for walking our crazy dog Gemma.
The reason I need to do this blog is to help make some sense of why my hubby, my hero, my best friend has been struck with Cancer! and our journey through the recovery which is only just about to start.
Firstly I would like to give a bit of a hint on how we came to be at the stage we are at now, awaiting Chemotherapy to start next week.
At the beginning of April 2007, Jon told me he could no longer sign his name, well we kinda laughed this off, we put it down to at 37 years old, and technology you don't write so much these days everything is done on a computer, yes even firefighters paperwork is done on a pc, so we basically ignored it....
We then went on a beautiful weeks holiday in Scotland, Jon kept falling asleep when ever he sat down in a chair... not uncommon when relaxing on holiday, and chasing around playing football with the kids, so again we ignored it.....
After our holiday, when out walking the dog one day Jon tripped down the curb, I berated him and told him to pick his feet up, this happened again, and again, it had been a long day, Jon had been to work and we were having an evening walk, we ignored it.......
Finally, I was cooking one of my awful meals, actually they are not too bad but as you will hear later Jon prefers hospital food, I was cooking Spag bowl, am busy eating away when I notice that both the boys plates are nearly empty but hmmmm Jon's is still full, "don't you like it?" was my first thought then I noticed Jon's fork and spoon (he likes to twirl his spaghetti) were totally stationary, thats when I saw the worried look on Jon's face and he told me he couldn't move his fork round on his spoon... I DIDN'T IGNORE THIS...
After a quick call to NHS Direct, we took him to the local hospital, who did some neurological movement tests with him, all we found out that eve was he had a weakness down his right side, with it being a Sat night they felt he would be better sleeping at home and visiting A&E again the next day for a scan.
Looking back now we both realize how small Jon's writing had become, and realize that maybe we should have taken a bit more notice of things earlier.
Oh apologies for the next bit being a bit date by date but One reason to write the blog was to remember what happened when for any information needed at a later stage. Be ok once Im blogging things in date order will flow easier.
THE JOURNEY BEGINS:
14th April 2007 : Jon visits hospital (found weakness in right side, needs further tests.)
15th April 2007: Jon's admitted to the local hospital for observations and to book a CT Scan
After more Neurological tests, they now rule out a bleed in the brain so opt for an MRI Scan over a CT Scan this cant be done today.
17th April 2007: A.M : the MRI Scan is taken of Jon's head.
P.M : Results are given to us, the virus we had been thinking this was was now announced too us as two brain tumour's, our world fell apart. The reason for Jon's lack of hand writing is they think part of the tumour is pressing down on the brain nerves which gives people the effects of Parkinson's disease. This may improve with steroids given to reduce the swelling.
19th April 2007: Jon is transferred to the John Radcliffe hospital, fantastic hospital here they kept Jon in for observations and booked him for a biopsy.
26th April 2007: Long awaited biopsy finally takes place, Jon's been on steroids for a few days and is constantly hungry, and loves the hospital food, 3 course meals twice a day!
27th April 2007: Jon is discharged for good behaviour and allowed home until the results come back.
8th May 2007: Finally the day arrives, we have wanted this day but not wanted it, we sit in a room clasping hands to find out exactly what it is Jon needs to battle.
This is the point the room spins when the doctor gives us the name of Jon's illness
Jon has a Large B-Cell Lymphoma, at that time we are told treatable but not curable. Time seems to stand still, this cant be happening to us, Jon cant have Cancer, it happens to other people, but deep down we knew this might happen, and anyone who knows Jon will know how calm and un-flustered he can be, we ask plenty of questions and get looked after wonderfully by the staff at the hospital. The journey home that day was tough.
9th May 2007: Royal Berk's Hospital call for Jon to be admitted for some more tests tomorrow.
10th May 2007: Jon goes in for some tests. He's given a room on his own, were told its a clean room, that has positive pressure so only clean air gets into it.
11th May 2007:Today he has a Bone Marrow Biopsy, and a Lumber puncture and a body CT scan. Oh and more blood tests which they seem to do daily at every hospital.
Yay Jon's allowed home for the weekend.
14th May 2007: Back into hospital, it really is starting to feel like a second home, today Jon had a Hickman line put in (this is a line into his chest for the forthcoming drugs to be given to him). After an X-Ray to check the line is correct we are allowed home for the week, Jon must stay free from people with colds or infections but should enjoy some quality time with the kids as the next few weeks are going to be a long stay in hospital.
Again apologies for it lacking fun but this blog is to help free up the scribbles on my calendar of what happens when on our journey, hopefully now I will keep this blog updated often, I'm not sure anyone but close family or friends will follow this journey but all are invited to help us through the times ahead.
Posted by Venus TAG at 21:56