topic Re: 2010 a long road ahead in Diagnosis and treatment

2010 a long road ahead

julie190270 — Sat, 02 Jan 2010 20:39:02 GMT

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

Re: 2010 a long road ahead

Jules2 — Sat, 02 Jan 2010 21:39:56 GMT

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

Re: 2010 a long road ahead

julie190270 — Sat, 02 Jan 2010 21:49:36 GMT

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

Re: 2010 a long road ahead

Jules2 — Sat, 02 Jan 2010 21:56:42 GMT

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

Re: 2010 a long road ahead

julie190270 — Sat, 02 Jan 2010 22:07:33 GMT

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

Re: 2010 a long road ahead

Jules2 — Sat, 02 Jan 2010 22:12:54 GMT

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

Re: 2010 a long road ahead

julie190270 — Sat, 02 Jan 2010 22:16:44 GMT

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

Re: 2010 a long road ahead

Jules2 — Sat, 02 Jan 2010 22:18:29 GMT

Thanks Julie you take care also and will be thinking of you both and congrats on the grandy!! How wonderful!!! Julie xo

Re: 2010 a long road ahead

Teacher_Mum — Sun, 03 Jan 2010 01:57:46 GMT

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.

Re: 2010 a long road ahead

Mrs_Elton — Sun, 03 Jan 2010 13:26:06 GMT

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.

Re: 2010 a long road ahead

julie190270 — Mon, 11 Jan 2010 22:18:57 GMT

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

Re: 2010 a long road ahead

Jules2 — Fri, 15 Jan 2010 01:12:43 GMT

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

Re: 2010 a long road ahead

julie190270 — Fri, 15 Jan 2010 06:22:33 GMT

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

Re: 2010 a long road ahead

samex — Fri, 15 Jan 2010 06:28:48 GMT

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

Re: 2010 a long road ahead

Jules2 — Fri, 15 Jan 2010 12:08:38 GMT

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

Re: 2010 a long road ahead

julie190270 — Sun, 17 Jan 2010 19:43:38 GMT

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

Re: 2010 a long road ahead

Jules2 — Sun, 17 Jan 2010 22:07:38 GMT

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

Re: 2010 a long road ahead

samex — Mon, 18 Jan 2010 05:31:09 GMT

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

Re: 2010 a long road ahead

Mrs_Elton — Mon, 18 Jan 2010 10:09:02 GMT

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

Re: 2010 a long road ahead

julie190270 — Sat, 23 Jan 2010 21:44:00 GMT

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