2010 a long road ahead
Sun, 03/01/2010 - 07:39
wow 2010 and I dont like this year already,3 days before xmas my 17 yr old son was diagnosed with lymphoma,the stage and type ? we dont know yet,we are off to Sydney tomorrow for bone marrow biospy and PET scan and whatever tests the dr says he has to have,Its not fair,I know Im not coping but Im trying to,Alex has avoided me as much as possible since the diagnosis but thats his way of dealing with it ,his freinds and g/f have been great,his dr gave me valium but Im only taking it when Im about to go into total breakdown mode .
Alex is very positive so thats a good thing altho he his dreading the bone marrow biopsy ,thats the only thing he has really complained about so far,we have a 6 hour journey tomorrow to get to sydney so hopefully lots of good conversation on the way,I personally will feel better when we know what stage and what type and how they are going to treat him,and to the dr who told us that his piercings were the cause of 12 nodes on the left and 4 on the right all over 2cm wide being swollen and not to worry about it,go back to medical school,but to the dr who got things moving really quickly,*thanks Sean *
Hope to chat to u all soon
Julie
Sun, 03/01/2010 - 08:49
#2
Re: 2010 a long road ahead
Thanx Julie,u just dont think that a very fit and healthy young boy is going to get cancer.he doesnt smoke,drink ,is very involved in charity work,a hard worker,and the life and soul of whatever crowd he is in,at least we are going to a great hospital RPA ,gotta be better than what we have here in Dubbo,just means that when he has radio we will be in syd for the whole time,
Hope the start to this yr is a good one for u ,love and thoughts and prayers to u
Julie x
Sun, 03/01/2010 - 08:56
#3
Re: 2010 a long road ahead
Julie
There is no rhyme or reason with cancer i dont think. It just does not seem fair!!! You will get through all of this and yes its a tough gig but its doable.
Being a country patient is hard at times and i would urge you to get in touch with a social worker or someone like that who can give you the heads up about what is available re helping you out. Hope thats not too invasive on you, i just know (being a country patient) that being given good information can make life a little easier.
Julie xo
Sun, 03/01/2010 - 09:07
#4
Re: 2010 a long road ahead
ur so very right, the leukemia foundation rang me within a hour of getting home from hospital and are helping me out greatly,its also great that theres a website like this ,I have a feeling Im going to make some great new freinds,and that Ive made one already 
Hope ur having a good day today .where abouts in the country are u ??
Julie x
Sun, 03/01/2010 - 09:12
#5
Re: 2010 a long road ahead
Hi Julie
Thank you it is nice to be considered a friend. The feeling is mutual. Thats fantastic that you have had someone contact you already. Reach out and take all the help you can get because it may not be now that you absolutely need it but later you will. So you may aswell put it in place. Sorry, i dont mean to be telling you what to do ... i am really talking in hindsight of my experience and it may not be the same for you.
I live in western australia in a place called "Roelands" which is on the highway from Perth to Bunbury. It is a blink and you will miss it kind of town!! haha I certainly havent had to travell as far as you have.
Julie
Sun, 03/01/2010 - 09:16
#6
Re: 2010 a long road ahead
well Im off now to take my other 2 boys off to their dad, they are nearly 15 and 11 ,my eldest son 19 became a dad on tuesday so we have a little ray of sunshine happening ,I will try and touch base before I leave in the morning,take care for now and I will be thinking of you .
Julie x
Sun, 03/01/2010 - 09:18
#7
Re: 2010 a long road ahead
Thanks Julie you take care also and will be thinking of you both and congrats on the grandy!! How wonderful!!!
Julie xo
Sun, 03/01/2010 - 12:57
#8
Re: 2010 a long road ahead
My thoughts and prayers are with you. I too am a country patient and Jules is right - there are resources out there to help with your journey. xxxx Keep us posted.
Mon, 04/01/2010 - 00:26
#9
Re: 2010 a long road ahead
Hi Julie,
Safe journey tomorrow, take extra care on the road and I hope it is conducive to some good conversation time with Alex.
Congratulations on your new grandchild, I truly hope that you can find some moments of joy in your precious 'ray of sunshine'!
Really glad to hear of the support from the leukemia foundation, as Julie (jules2) said, take all the support you can get, while you can get it.
Thinking of you and Alex, wishing you strength.
Regards,
Jill.
Tue, 12/01/2010 - 09:18
#10
Re: 2010 a long road ahead
Hi everyone,hope u r all keeping as well as you can be,we are back from the bigsmoke lol and Alex starts chemo on thursday,hes got hodgkins stage 2,looks like a body builder with his swollen neck but his dr tells me not to panic even tho nodes are popping up everwhere.
Thankyou all for your messages they were a great support to me ,Alex is still in deninal I think ,I dont think its really going to hit him until he starts the chemo.I have told him to come online and chat to other sufferes but hes not interested at the moment,at least when he feels ready to chat theres going to be someone on here that he can talk to,
Well thankyou all again ,hope to chat to u all soon
take care
Juliex
Fri, 15/01/2010 - 12:12
#11
Re: 2010 a long road ahead
Hi Julie
Apologies for not replying sooner, i have been in a bit of a hole lately, am back out again now.
Glad to hear you got back ok.
Alex will be ok, he will come to terms with things in his own time. If you get worried that he isnt dealing then you could perhaps point him in the direction to get some help. The Cancer Council has a great support system in place. I think that the hospitals and social workers can access alternatives for you also, if that suits more.
Take care and my thoughts are with you both.
Julie xo
Fri, 15/01/2010 - 17:22
#12
Re: 2010 a long road ahead
Hi Julie,
Hope ur hole has dissappeared :)Anything I can so just let me know,
Well Alex had his first chemo yesterday and boy did it bring him into the real world,just of 4 hours it took and within a hour of him being him the sickness and diarriah hit ,he looked shocking and still wasnt too good this morning ,hes gone to his mates place now cos hes feeling better but Im worried sick about him,I dont think I have ever seen him looking so ill,
I have told him about all the support groups but hes not interested at the moment,but like you said he will in his own time,
Back to Sydney on the 8th March for a few days so hopefully the lymphnodes might of started shrinking by then,
Please let me know how ur going,been thinking of u
Take care
Julie xx
Fri, 15/01/2010 - 23:08
#13
Re: 2010 a long road ahead
Hiya Julie
Thank you ... am out of my hole now. I tend to go with the flow with my emotions, or at least i try to. i refuse to think that there is something wrong with me when most of what we feel is just natural and normal.
Awww am sorry to read that your son has had such a reaction to the chemo so early. Can you talk to the onco's and get them to change some medications for him? They are pretty good at making life easier for us, if they know.
Your son may or may not want to access help. He may find canteen a good thing to access, even if he looks at a website just so he knows what is out there. But, he is young ... it is such a huge thing being diagnosed neverlone being someone so young. We have a few young ones on this website and they are great.
I hope that things are settling down ok for you son. How are you travelling with all of this?
Julie xo
Fri, 15/01/2010 - 17:28
#14
Re: 2010 a long road ahead
I have a 20 year old son and cannot imagine how he would cope. My thoughts are with you and perhaps keep thinking of how resilient kids/young adults are.
Take care, Samex
Mon, 18/01/2010 - 06:43
#15
Re: 2010 a long road ahead
Good Morning you lovely ppl wow what a weekend,Alex hasnt moved off the couch at all apart from going to the drs yesterday to get stronger painkillers,hes not eating,not drinking much and asleep most of the time,its very hard on his younger brothers seeing him like this,Im hoping today he will feel a bit better,yesterday was the first time I had seen him cry,he tells me the pain in his head,teeth and throat is horrendos,looks like another trip to oncology today ,
What really peed me off yesterday was the dr that we saw was the one that told us on a number of occasions that Alexs symptoms were nothing to worry about and sent us home at least 4 times with not even a blood test,when I told him Alex had HL he didnt belive me and went scaning thru his pc looking at all the results,and to top it off at the end of the consultation he said *sorry that u have cancer but thats life !* With that I stood up and walked out before I punched him ,Going to talk to my dr today and see if they will take Alex as one of their patients,
Hope everyone had a good weekend,and u r travelling well
Take care
Julie x
Mon, 18/01/2010 - 09:07
#16
Re: 2010 a long road ahead
hey Julie
I hope that Alex starts to feel a bit better soon. I am just gobsmacked by that doctors attitude. I remember that i had one look in my mouth and tell me "oh well, least its not cancer". Least he had the grace to allow his eyes to nearly fall out of his head when he saw me with no hair and a tachea.
My thoughts are with you.
Julie xo
Mon, 18/01/2010 - 16:31
#17
Re: 2010 a long road ahead
Julie i don't know how you constrained your self. Particularly when it is a child who is suffering so much.
Definitely time for a change of doctor.
Hope is feeling a little better and you are travelling OK.
Samex
Mon, 18/01/2010 - 21:09
#18
Re: 2010 a long road ahead
Hi Julie,
Unbelievable. I think you should have punched him!!! Some people seem to have insensitivity running through their veins.
I really hope that the chemo can be 'tweaked' so that Alex isn't feeling so awful.
As Julie asked, HOW ARE YOU??
Thinking of you all,
Jill
Sun, 24/01/2010 - 08:44
#19
Re: 2010 a long road ahead
Good Morning to you all ,hope everyone is doing ok ,sorry havent been around much this week ,but been trying to get a few hours in at work,only have a few hours on monday now to go then the rest of the week off,
Alex is doing great again at the moment,he was really sick for about 5/6 days,he even went to work for a few hours last night,so thats been good for him,
I managed to get him on the books at my drs,they werent taking new patients but when I explained what had happened last weekend they took him straigtaway.
Im coping,I think lol,not looking forward to him being so ill again after chemo next week,but Ive got to be strong,for his and the other boys sake,
you are all in my thoughts
take care
Julie x
Sun, 24/01/2010 - 12:13
#20
Re: 2010 a long road ahead
Hi Julie,
Great to hear that Alex was able to go to work, as the other wise Julie said, "it will make things more palatable to be able to do something that is normal"!!
I am also glad to hear that you were able to get him into your own Dr, that must be a huge relief for you.
(I don't do/have MSN either!!, is it a WA thing Jules2 or are we (you and me)just behind the times!!!???
Take care and hope you and Alex have a good week,
Jill x
Sun, 24/01/2010 - 14:33
#21
Re: 2010 a long road ahead
So glad to hear that Alex is improving.
My son is also named Alex and my heart tugs every time I catch up with you and your Alex.
Jill and Jules, my kids use MSN (or now Facebook)- I think I am just too old and that Julie 190270 is just much more up to date!
S
Sun, 24/01/2010 - 15:50
#22
Re: 2010 a long road ahead
lol samex you are never too old!!!!! I did have msn but a reformat on my computer yet again means i have to download the up-to-date version to use it. Alas i just havent been bothered to do it. My reformatting is due to facebook (which i use) ... so i fear another format will be needed at some stage. lol
Sun, 24/01/2010 - 16:14
#23
Re: 2010 a long road ahead
Not old!!! Jules like you I am a facebook nut! I have a Mac so MSN and it has a few issues
Sun, 24/01/2010 - 16:17
#24
Re: 2010 a long road ahead
Geeees, teach ... hope you forgive me if i ice you in mafia wars (thats if you play it) haha .... I am becoming "invincible" yanno (said in my bestest russian accent).
Julie xo
Sun, 24/01/2010 - 16:28
#25
Re: 2010 a long road ahead
bah - hate the mafia wars heheheh
Sun, 24/01/2010 - 19:44
#26
Re: 2010 a long road ahead
hmm how bout castle age then? lol
Wed, 27/01/2010 - 13:11
#27
Re: 2010 a long road ahead
Hiya all ,Hope u had a good Australia Day ??
Well Alex should of had chemo today but his neutrophils are too low 
0.4... had a shot of neulasta so hopefully back on track for next week, his hair is falling in clumps now but still refuses to get it cut,he doesnt feel ill so Im hoping and praying that no nasty infection will rear its ugly head.
Love and thoughts to Julie,Jill and Teach,hope u r all keeping well,
talk to u all soon
Juliex
Wed, 27/01/2010 - 16:45
#28
Re: 2010 a long road ahead
Hey Julie
Thats a shame re Alex being low in neutrophils ... hopefully that will rectify asap for him. He will do something with his hair when he is ready ... its such a big decision really. Will keep fingers and toes crossed that no infections set in. hang in there!!
Julie xo
Wed, 27/01/2010 - 19:48
#29
Re: 2010 a long road ahead
It is such a paradox when neutrophils are low and you can't have treatment.
It happened to me twice and while you dread turning up for treatment, I was so disappointed when it was called off for a week as I just wanted it over and done with.
It happened to me both times I took my laptop with me so I stopped taking it!
I hope that Alex is bearing up.
Samex
Wed, 27/01/2010 - 23:41
#30
Re: 2010 a long road ahead
Oh the dreaded neutrophils. It was a panic everytime we waited for the result as T would go in2 a major funk if treatment was postponed. The last treatment they did anywsy as he kicked up such a stink.
Hope all goes well for nxt time and u had a relaxing Oz day'
Alana
Sun, 31/01/2010 - 17:54
#31
Re: 2010 a long road ahead
Well helllo lovely ppl we have just got home after 3 days in hospital thanx to pancretitus caused by the chemo,my poor boy has had enuff already and hes only has 1 chemo,next one is sposed to be on wednesday ,his hair has nearly all fell out ,looks lilke someone has taken to him with thinning shears
good thing is hes not in pain now and im cooking him a roast dinner cos thatrs wat he wants lol
well better go and put the vegies on hes starving again ,got to feed him up before wednesday,
take care all ,thinking of yas
Julie xx
Sun, 31/01/2010 - 21:48
#32
Re: 2010 a long road ahead
Hi Julie (and Alex)
I'm pleased that he's wanting to eat and maybe the next round won't be so bad.You're right. He has had enough and shouldn't have to deal with this but we are never sure of the hand that life deals us.
Both of you hang in there.
Samex
Mon, 01/02/2010 - 07:48
#33
Re: 2010 a long road ahead
thx samex ,ur so very right,he shaved his hair off last night and it really does suit him,Ive got vertigo today,,,wot a pain ! its a stress thing i get occasionaly, Ive had the pills so gonna try and get on with a normal day lol wateva that is ,at least its cooler here in Dubbo today ,
Has anyone heard from Teacher mum ? been thinkin about her lots and wondering if shes ok .
Hope everyone is doin well
Juliex
Mon, 01/02/2010 - 10:07
#34
Re: 2010 a long road ahead
Hello everyone,
Yes, I am on facebook too.
It is a good feeling on here when we can vent our anger on Mr & Mrs Cancer.
I have just come home from my gyno oncologist appointment, he is very pleased and so am I. Next appointment to him will be this time next year, but radiation oncologist in July. It will be 3 years in July, and honestly apart from my knee problem and a few other little nigglies, I feel great. People remark on how healthy I look. Mind you, I didn't have chemo just radiation. This time next week I will be packing my bag for hospital as I have my knee replacement done on the Wednesday, but will go in on Tuesday.
Keep up the good vibes and encouragement everyone.
love Bev
Mon, 01/02/2010 - 19:38
#35
Re: 2010 a long road ahead
Hi there Im here!
Thanks for asking Julie! They found a brain! Which was a relief he he! Menieres Disease by the looks of it. You are in Dubbo! I stayed in Yass over the summer holidays! Whoo-hoo!
OH! and I am doing the Worlds Greatest Shave dedicated to you guys! Yeah Im nuts - the Chemo (methotrexate) I had for a rare ectopic to save my life didnt affect my hair so what will go and do? lol
Its for a good cause as one student said "Miss you will either look really interesting or really gay, but for a good cause "
Mon, 01/02/2010 - 20:19
#36
Re: 2010 a long road ahead
That's awesome. I'm not so brave.
We have a teacher at school who had very long hair and a ZZ Top beard to match who said that the hair would go if $3000 was raised. He then uppped the stakes to $5000 and he would lose the beard as well.
2 other year 12 boys joined him. For one it is an annual event - his only haircut of the year since he was 12!
we had a full school assembly at lunch for the great shave and everyone was scrounging for their loose change to see the beard and hair go. At the last minute the count reached $5000 which was an awesome amount to raise and Steve did the honours himself.
He kept the hair short but is systematically growing back the beard.
Take it easy you guys with the vertigo and Meniere's.
Samex
Mon, 01/02/2010 - 22:36
#37
Re: 2010 a long road ahead
Hiya -
Yep we do all of that at school! The demand is that overwhelming that there wasnt any room for me he he How brilliant is that - so many generous souls
So - I am doing one at home and I am dedicating it to you guys
xxxx
Mon, 01/02/2010 - 23:41
#38
Re: 2010 a long road ahead
Teach... you are a legend or you are gonna be ... lol Good onya!!
Mon, 01/02/2010 - 23:52
#39
Re: 2010 a long road ahead
Hey Teach
It is a sensational feeling!! I did it in 2008!!! Organised an event down at the local tavern and it was so wonderful to find how many people, mostly strangers, came out to support me, either donating, colouring or shaving their own heads. I managed to raise $3400 as an individual plus another $200 through raffles etc. Makes you realise there are still so many good people around
Well done you are an awesome person for doing this. I wish you well in all you endeavor to achieve.
Alana
xxx
Mon, 08/02/2010 - 21:48
#40
Re: 2010 a long road ahead
Hiya peeps, just popped in because Alex asked me to ask if anyone could give him any tips regarding his hair,he shaved it off using the clippers and it was still bristly,now its looking really patchy where he is totally bald ,what he wants to know is should he use a razor and shaving gel or a hair removing cream ??
Hope everyone is having a good week ,smiling whenever possible :)thinking of u all,take care
Julie xx
Mon, 08/02/2010 - 21:54
#41
Re: 2010 a long road ahead
Hey Julie
I had a razor used on mine ... it was used in a device similar to clippers so no cream or anything was used. I would not use depilatory cream, that could cause some reaction and burn the skin. Probably use some cream thats not too heavily perfumed.
Having an ok week here so far, thanks. Hows your week starting out for you? Is Alex hanging in there as far as the nausea is concerned?
hugsss
Julie xo
Tue, 09/02/2010 - 06:16
#42
Re: 2010 a long road ahead
Thx for that Julie Alex has seemed to be really good after his last chemo,but every four hours wether he needed it or not I have been giving him maxolon and I think that has helped,He wanted to go to work last night for a few hours but ended up coming home early and he looked shocking,head aches.back pain,nausea and he was quiet upset that his hair is still falling out even tho its only about a mm long ,hes also got the dark rings coming under his eyes,he has to have a bloodtest today before we see oncologist tomorrow and Im going to ask for him to have a ct scan ,just to make sure nothing nasty us happening after getting the pancreatitus.
Glad to hear ur having a good week,Im 40 on the 19th so we spent yesterday trying to organize a little get together at the club,only thing is Alex has chemo the day before but if he is sick I will cancel it,
well better get organized for work ,trying to get a few hours in today lolgood job my boss is very understanding ,I just wish centrelink was,Im on a single parent pension so have to work at least 15 hours a week which up until 22 dec I was doing and way more now Im lucky to be doing 20 a fortnight with drs appointments,chemo and hospital stays,now I have recieved a letter from them requesting a letter from Alexs dr stating how sick he is and how this will affect me from going to work ! they have even knocked me back for a carers payment of $100 a fortnight because they reckon he wont be sick for long enough !Im glad they know how long he will be sick for because no one else does,phew thats better now thats off my chest lol
Anyway you all take care and thinking of you all
Juliexx
Tue, 09/02/2010 - 08:16
#43
Re: 2010 a long road ahead
Hey Julie
Happy 40th n yayyyy you ... hope you have a fantastic day and fingers crossed that alex is ok for your b'day.
Ahhhh dont get me started re centrelink. Yanno i am now to be assessed by them because they will not accept a doctors certificate any more. So, now i get a non medical person to assess me whether i am ready to work again or not. lol Kinda funny yet reality its pretty scary. I empathise with your problems with centrelink. Is it possible you can access a social worker and get some help that way?? It must be tough to try and deal with all of that on top of what is happening with alex. My mum applied for the carers pension also and we were told the same thing. At one stage i ws not allowed to be by myself at all and i was staying with her, plus she has power of attorney. Her name was down to access centrelink and pats (i hate that word ... lol) and neither of them were very helpful to an 82 year old trying to cope with her daughter having cancer and to do all the paperwork, plus look after my 21 year old.
sorry to get on my soap box, its just processes such as we are discussing really irritate me and i consider most of the red tape totaly inappropriate and unnecessary.
Just keep reaching out Julie and get help.
Julie xo
Tue, 09/02/2010 - 09:44
#44
Re: 2010 a long road ahead
Hard to reply to everyone's comments. So many.
Would like to just to wish everyone some encouragement, you are all so strong.
Reading through people's stories, makes you appreciate your own experiences. Gee, I had stage 2 uterine cancer and lucky enough that I got through that ok, though there are a few issues now, not with the cancer itself but the after effects. They explain to you what can happen, but of course they couldn't cover everything.
I will be offline for a few weeks, going into hospital today to have a right knee replacement tomorrow.
Tue, 09/02/2010 - 09:52
#45
Re: 2010 a long road ahead
Hey Bev
Good luck with your knee replacement. My mum had that done and was in less pain after the op than before and was up and walking within no time at all!!!
hugsss
Julie
Hey Julie
Will be thinking of you all. I just empathise with you so much as i have a son around your boys age. I hope that you have a good trip and that all your appointments go smoothly for you.
Take care
Julie