This is all new to me, and I don't know what to think! Help.

aisha1

Hi,

That's nice of you to think of me. I know that Have Faith also thinks of me.

Most times I consider myself brave. I don't like to moan either. Sometimes I have uncomfortable feelings (I don't even like to use the word pain because I sound moany), but I keep them to myself. This time I am feeling a bit battered to tell you the truth.

I have had a sore lower back and I'm sure that it is my kidneys. My legs have also been killing me when I go out. I have to stop in cafes all the time or sit somewhere because they just don't really want to take me far. The top of my spine has been hurting and feels stiff. I also feel like something is blocking my vertabrae in that area from moving properly. I have had an ache on/off on the left side of my lower abdomen as well.

I can really feel this thing (chemo) affecting me now. Sorry to be so blunt but my urine is also a lot stronger and I feel like it is more concentrated. I'm not sure if that is because of the chemo being expelled? Did you have this problem? It's not an infection.

The trouble is, I have 2 kids who really rely on me. Because they are young, I have to do everything for them. I also tell myself that I'm not THAT sick and I keep pushing myself. I don't really have time to not push myself really. As anyone with kids will know, I have to clean the house, wash school uniform, wash pyjamas, hang everything out, make dinner, make packed lunches, change the beds, wash the dishes, clean the floor, fold and put away clothes, clean the bathroom, give the kids a bath, help them with homework, read to them - all whilst disciplining them constantly and correcting them if they do something wrong. I also worry if they are going to be ok all the time.

I am tired but I feel like I am failing when I get a takeaway from outside or make them eat out. I have done this for a few days already and I feel so bad when I come home.

I know that the results for HL remission are good. I'm happy that once this is all over, I can get on with things. I just feel tired. I have just picked up my sister's bug as well.

I have an appointment with the haemetologist on Monday so he will tell me about the results of my PET scan that I had on my birthday. I'm sure he's going to say that the cancer has shrunk.

Thanks again. I will post back.

Aisha.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan

Hi aisha1

Hang in there. RE the urine try drinking more water this should help a lot. Also mention the pain in the back and the dark urine to the doctor next time you go.

I hope you get good news at your next visit.

Good Luck
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

joepet · Senior User Joined: 18 Dec 2008 Posts: 287 Location: Japan

Hi Aisha. Lots of other people are thinking of you as well, myself included.

Since you were blunt, allow me to be so as well. Do you really think so little of your cancer that it is not a valid reason to pace yourself appropriately? You are in a fight for your life, a fight in which the odds are on your side, but a fight nonetheless. This fight is your highest priority, and just because nobody around you has walked in your shoes and can understand what you are going through doesn't change that fact. Be brave enough to order take out, let the dirty dishes and clothes pile up for a day or two (or even empower one of your children to give it a try), and do what you need to do without feeling guilty over it. It is only temporary, until the fight is over.

You _will_ get your rest, in one of two ways. It will either be on your terms, or a forced hospitalization. I think the former is a much better option for all involved.

Like Chemoman says, definitely consume at least 2 liters of water a day. Like you've said before, there's a lot of "weird shit" in you, and water is what you need to get it out once it has done its job.

This is just a virtual website, so moan all you want here; it doesn't count towards your quota of "real" moaning! Razz

_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

havefaith

peace on you aisha,

I am sad that is not your best days. i agree with jopet in everything he said. the kids they need a mother more than a clean house, ask me about it. so hang on, you have deeds for evey little pain you feel.

for the dishes and clothes they never end, the more you clean, the more they add. take care of yourself, and tell yourself that there some mom who are healthy and don,t clean their houses, the kids survive it, yours will too. it only until you get better.

once you ask when i gonna have my chemo. for thyroid cancer, chemo is not something common, they killed the cancer cell by iodine treatement when ever is needed..

god bless you all
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.

aisha1

Hi,

My kids are going away with my sister tomorrow for a week (they have a school holiday). I'm so glad because this couldn't have happened at a better time.

Twice today I have felt like my chest was restricted. I was wheezing and had to sit very still until my chest eased up. Joepet, and everyone else - you are right. I need to sit back and relax a bit.

I actually look fine from the outside and that is part of the problem. I have put on weight and everyone seems to think that I am handling the chemo really well. When they say that, I feel bad if I tell them that in fact I am really tired. I don't look like I am hurting and so I'm scared that they will think I'm lying when I say that my legs are hurting, my back, my neck and I don't know why I am worried about what other people expect of me. I need to just think about myself more.

Now that I am losing my voice, it is more apparent that I am getting worse, and so I'm hoping that people will realise I am sick. I'm my own worst enemy. I tell people that I'm fine. When really I'm not. So I have done it to myself. It's because I look fine from outside.

No one can see my hair disappearing because I cover it. No one can see my aches because they are deep, and not apparent. I keep on getting phrases like "You would never think that you had cancer, you look like your eating well"........"You look good Aisha, you're cancer must be a good one, or an easy one".........."I think you'll be fine, because you're young and fit"..........."I was thinking about you and how well you are coping with the whole cancer thing and how well your body is coping with this all - when my dad/mum/sister/cousin had cancer, they were much worse than you".

These are the typical expressions I get and so I don't know how to answer. I just say "Oh yeah, I'm not too bad, thanks" because I don't know what else to say in that moment.

My kids are constant. I have to collect them from school. I have to at least talk to them. They fight sometimes and one (or both) come to me crying and need me to sort out the situation. I can't rest - even if I really want to, I can't. If I brought them home from school and fell asleep, 10 minutes later I would be awoken with screams of "Mum, mum, I tried to jump from the bed to the tent and I banged my head" or "Mum, tell her, she won't let me put on my DVD that I want because she said it's babyish".

I'm laughing but it's the truth. They are only kids.

On the plus side, my teeth are looking whiter. I think this has happened since I started the chemo. I also think that the cancer has been shrinking because the lump in my neck is really small now. I just have a horrible feeling that something is wrong with the cyst that I have on my ovary. I am getting terrible pains from it. Same side, same place, every time. I have to talk to my consultant about it when I go in on Monday.

Enough moaning. Wink

I'm going to get some rest and I'll post back soon. Thank you guys for helping me out. I'n going to try and take it easy. What you have said is true.

Cheers.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan

Hi aisha1

I hope you do relax a bit. Its a very good idea the Kids are away for a week. Maybe you need to try and arrange this more often. The debilitating effects of chemo tend to get worse over time, especially the fatigue which by the end saps every bit of energy that you have so much so even talking is hard to do.

There is no "good" cancer...... it doesn't exist. Treat your cancer with the respect it deserves as it is a killer and needs to be taken seriously.

Good luck Aisha hopefully your next post is a bit more upbeat Smile

_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

havefaith

Hi every one.

the forum miss you aisha, but we can wait until you get better. chemo man said there is no such thing like a good cancer, i am asking chemo man if even the cancer have a good survive rate.

we have a problem everyone we don't like it when we got sick, we are ashame if we are not a perfect human been. this not normal, i think we must not feel that way, everyone can get seek a younger one or a older, we don't choose it. so why we are afraid to be so weak, even if when we got seek this is the oportunity to know who is there for us even when we are down, when we need to be clean or to have a hand.

last time when i had my surgery, i did have a drain in my thorax +morphine line+iv, it was impossible for me to go to the bathroom, so it was the first time, i need help i was so ashame, i was crying alot, the nurses was so kind. i felt what the older one felt when they lost their independancy at 28 years, it was bad. i wish it was some one from my family who did that for me helping me when i was that weak. anyway the point is that the older that need sch help, they lost their pride, they depend on stranger to do that for them when their kids put them in nursing home because they want no responsability, to move on with their life. they don't know that life repeat her self and the kids will put them too in hand of strangers. back to my story in the hospital a young lady was next to me in the room, i told her that i am ashame coz i am back like a baby who need help, she told that when you are in hospital you must forgot about something call ashameness this normal evryone need help. this lady did have a first surgery to remove colon, so people that they remove for them the colon, need sorry to said, do their toilet in a bag for months and then have a second surgery to solve the problem, so they don't need to use a bag. when i knew that i feel much better coz i need it help for 2 days, some people need it for months and some older one years..

sorry for taking much of your time, god bless you.
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.

aisha1

My kids are off and they have arrived in Scotland safe and sound.

I have a really bad chest, and my cough is annoying me. My stomach muscles now hurt every time I cough because I have coughed so much! I have green/yellow phlegm coming up as well. My voice has almost completely disappeared now and I will mention this at my appointment tomorrow because I have had cold sweats now and again. My temperature has been stable (between 36.4 and 36.8.). I am keeping an eye on my temperature in case it rises. I'm here alone as well so I need to be careful.

I'm scared to go to the doctor in case they give me some sort of injection for the H1N1 flu virus. I am in strong dissagreement with that injection for several reasons, I won't go into here. I just am certain I don't want it.

I am going to watch some good comedy. I need to laugh a bit! Laughing

Less housework for the next week!
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

aisha1

HEY GUESS WHAT????????????

I'm so happy today. I went to the haematologist. He spoke to me about how I am etc etc etc and then he said "Well, I have some very good news for you. The results of your PET scan are back, and.......well, I will read you the report. Uhum (clears his throat) you have two small masses left. All the others have gone. The two left are small and one is the main mass in the chest, the other is in your neck. The uptake in your uterus, intestine, nodes in the chest, around the trachea, and at the sides of the neck have completely gone"

I was in shock, so he said to me, "You do understand that this is a VERY GOOD RESULT?" I just told him that I know that (still feeling a bit strange). He continued to tell his collegue (junior that was sitting in) that I have only had 5 chemo's and that this is a very rare result as when the PET scan was done, I had only had 4 chemo's. He said that he is very happy with this result.

He admitted that the masses in my uterus MUST have been the hodgkins, as it has now cleared with the treatment - which would have made it extra-nodal and a strange place for it to be. He said that I would have been stage 4 and can't understand what happened there, but it is showing as completely gone. Still a bit of a mystery but I don't care! Laughing

He said that he is going to have a meeting and mention this, as I may not need the full 6 months. I may only need another couple of cycles and then some radiotherapy (localised) to finish it off.

I have some anti-biotics for a chest infection, which is just a minor thing really. I should be over it in a short while.

I'm so happy tonight.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

konti · Regular Joined: 01 Sep 2009 Posts: 20

Congratulations!!! Mr. Green

That is wonderful news! Really really happy for you! Wink

aisha1

Konti! I thought that you might have left the forum? Have your nodes gone down now? Did youtry a detox? Laat I heard you had been discharged from the clinic.

Hope you're cool.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

konti · Regular Joined: 01 Sep 2009 Posts: 20

No, my nodes are still there,however not getting any bigger. Finally received my ultrasound result as well! I am not writing in the forum anymore, but I check how you are all doing every day and it was really nice to find out that you are doing so well! Wink

joepet · Senior User Joined: 18 Dec 2008 Posts: 287 Location: Japan

AWRIGHT!!! Laughing

See, no wonder you feel like crap...your body is working triple overtime getting all this tumor garbage out of you! I can't say that you won't feel worse before you feel better, but I hope that now you can see the light at the end of the title, and that it will help you to pull yourself out of the tunnel altogether.

You go girl! Cool

_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

aisha1

Yeah, I know. Now it just feels so worth while. Any aches, pains, worries, fatigue etc actually feels like it is worth it.

My consultant was trying to get me to realise that my body has reacted very well to the chemo in a short space of time, but I was just listening, and waiting for something bad to come along. It only started to sink in when I left his surgery.

My urea is a bit higher than it usually is, the nurse called me this morning and said that I was right, it is my kidneys, and so I have to drink even MORE water.

I feel like I'm going to be ok. I kind of feel like I have already beaten it! I know, I know, still a way to go yet but I feel good about all of this. I have a chemo session on Friday and so I'm bracing myself for that because they are knocking me more and more.

As soon as this chemo is over, I want to lose the weight that I have put on so far. I have put on 8 kilos. Shocked

I hate it. None of my clothes fit me. Anyway, I'll sort that out when I have finished.

Cheers! Cool

_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

havefaith

Hi aisha,
So happy for you and specially for yor kids. there is always hope.
I wish you a happy long life. Thanks god for those wonderful result.
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.

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