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

aisha1

Wow! I didn't know that anyone was actually watching my story! Smile

oh yessssssssss, that makes me feel special! Razz

Anyway, I had my first chemo yesterday, and it wasn't that bad. I felt a bit of nausea in the evening and was yawning all evening. THEN I had a massive burst of energy (may have been the steroids) and didn't go to sleep til 3 in the morning. Woke up today feeling great at 10. I'm glad the kids are on holiday for another week though!

The night before chemo I started to sweat at night. I woke up twice and had to take my clothes of and sleep with no covers. I woke up again and had to open the windows and stand next to them to cool off (I know that is like an invitation for germs, I just couldn't help it I was baking).

About my kids - I've been thinking about what I will tell them. We already speak about points that God gives you for certain things. I tell them that if they do something good, at school, outside or at home, God is giving them points, even if no one else has noticed, they must remember that God has, and He is recording it. Likewise he will notice you stealing, even if no one else does, or telling lies etc. They know that they will have points taken away for this. They understand it well, and they are growing to be very appreciative of any small presents I buy them, and also really believe in doing nice things with no reward from this world (when no one has noticed like teachers etc). I was thinking of telling them that God has given me a really big test. I will get LOADS of points for going through this test and this is my chance to gather loads of points. I think they might understand. I'm not going to mention much more, I will talk to them about my hair etc when it is happening rather than freaking them out with too much info. I think this may be the simplest thing for me to say, but I know that my 8 year old will have questions about how it is inside me, that will lead to her asking questions about the body's resources, then she'll ask questions about what it looks like under a microscope, what the tablets do, how do they work etc................... Rolling Eyes

She is very mature, and needs a full explanaition as to why things happen and how, then she starts to make educated guesses about what happens, why and how. So I had better just answer her questions as they come!

My boss is asking me to go in to work. This is just a joke. He told me that I need to just "push myself and come for at least 3 or 4 hours a day". I told him that I will need to preserve the energy I have for 3 or 4 hours a day and I will be very sick. He just got the hump, spoke to me like I was talking shit and then put the phone down. Anyway, as annoying as it is, he can go jump.

Today I feel ok. I suppose it will take a few days to kick in properly, but my bones are hurting a bit. My HIV nad Hepatitis tests came back negative, and that is a relief because that scared me quite a bit. My Ex Husband cheated quite a few times, and I don't even know where those women had been, and so I was a bit worried!

Oh man! My hair! This is making me feel weird! My hair is down to the bottom of my back, and very thick. I will feel so strange with no hair, and even with none on my face. Oh well, it will grow back I suppose, but not sure if it will grow back the same???

Anyway, I'll leave you with this for now. Everyone seems to have NHL which I know is very similar, but it's good for me to have HL because anyone coming to the forum withe HL will have someone who has been through it.

I'm happy I had my kids young. I know have one boy and one girl. I would have been devastated if this had happened whilst I was pregnant or planning kids as they said the chemo will ruin my ovaries.

Anyway, I have lots of shopping to do, and I have to buy anti-bacterial stuff for my house, and hand gel. Oh yeah! Has anyone had a Hickman line? I was going to have one but I'm scared of it getting infected and it will be going straight into my vessels near my heart so I want to know if anyone has experiences of this.

Cheers!

Aisha.

joepet · Senior User Joined: 18 Dec 2008 Posts: 375 Location: Japan

Hi aisha,

From what I hear, the hair deal is different for everybody. Some people get their hair back with no changes. Some people get different hair colors or hair styles for a year or so, then it gradually goes back to normal. And for some people, the changes are permanent.

In my case, my previously straight hair is now very curly. Touching the back of my head feels like petting a French poodle! I know it's a small price to pay for remission, but I'm still hoping that this change is only temporary, or else I'll be sorely tempted to spend the rest of my life with a military buzz cut...
_________________
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

Hey! What's wrong with curly hair! Cool

It's good to have curly hair isn't it? Makes it look thicker anyway! I was laughing about your military buzz cut bit.

I forgot to say; yesterday I looked in my chemo book (small book that they tell you to always have on you in case you are in attendance at another hospital or something. I also have to give it to my dentist to look at when I go there. ----- I'm drifting away from the point again! Anyway, I looked in it, and it said that I have been given one drug, 700mg, another 10mg, another, 46mg and the last one was 18,400 mg!!! What the hell is going on here? These were the ABVD drugs. The last one was the one that was hurting as it went up my vains - no wonder if it is 18,400 mg!! I started to think of what the hell is going on inside my body.

I haven't had any real symptoms as of yet that I can't handle. Little bit of a sick feeling, little bit of stomach pain here and there (short lived) and some pain in my bones (that I had anyway, before chemo). I have had no headaches I was having before, and my chest has felt tight. The day of the chemo (after the last 18, 400 mg) my heart was pumping like no one's business! I could feel my pulse in my shoulders.

I don't drink (ever), and have never smoked. I eat well and usually eat organic or fresh foods, so my body is not used to all of these chemicals. In fact, my haematologist said that this is a good thing. My body will respond well to treatment because it is so clean Cool

It has built up no resistance to outside chemicals or influences, and so I suppose this goes in my favour, but I'm sure my body is wondering what the hell is going on right now!

Anyway, bottom line, I don't really feel that bad. Bit tired, but it comes and goes. I'm expecting to become worse over the next few weeks/months but I suppose it's something I just have to deal with. This is only a year at the most, and then I have the rest of my life to recover from this trouble. So I suppose a year is nothing really is it? At least this has happened when I have already had my kids. I'm glad I had them young, even though it has been hard at times. I'm glad they are here.

This will turn into another novel if I'm not careful........... so thanks guys for the support and hope all goes well.

Aisha (Oh yeah, I do notice my spelling and grammar mistakes when I've already written pieces, and I don't know what is going on with my typo's but I'm just all mashed up - so I have an excuse Wink

)

ChemoMan

Hi aisha 1

That excuse has a name....its called chemo brain.....don't worry it will go away ...eventually Wink

_________________
Age 53
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..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

Ok........ chemo brain Aisha was on shut down mode today!

I woke up at 10 - after being sooooo shattered last night. I had quite a bit of energy, so I cleaned the kitchen, and made myself a juice. Then I went out to meet a friend, but after sitting on the bus for 10 minutes, I found myself drifting off! Very Happy

Nice to drift off in public - I never do it otherwise!

I arrived at my destination, met her, and then began to feel really tired. My feet were hurting, and my legs, like I had run a marathon or something. Then the rest of the day my muscles have been hurting in my face, arms, legs, neck, actually everywhere. My heart has also been beating hard at times, and I have a tightness in my chest. It comes and goes, and only lasts for about 5 minutes.

All day I have felt teary eyed at things that have been going on. Maybe that is the medication? I'm not sure. I also have had pain in my lower abdomen but that could also be my period starting? That would explain the teary eyed bit as well Idea

Anyway, still no results from the bone marrow biopsy and nothing back from the pet scan so I'll try again tomorrow.

Did anyone ever have the feeling that everyone is just wanting a piece of them? My friends keep wanting me to go and see them, and I feel bad if I say no. My boss has PRESSURISED me into going to work tomorrow for 2 hours, and again on Wednesday.

Oh well!

ChemoMan

Hi aisha1

There is something about your boss that makes me want to punch him......probably gives you the same feeling Wink

Are you with a private or public enterprise? I would prempt any nastiness on his part by seeking some advice either from a union, a cancer advocacy group or a lawyer.

Hoping you start feeling a bit better soon.
_________________
Age 53
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..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

aisha1

Hi,

I had a go at him today when I got there. Just a quiet word, with strong undertones of what I expect from now.

Anyway, I've left him to do his own thing, and I'm going to start relaxing now, I have been tired today again.

I'll keep you updated.

Aisha

ChemoMan

Hi aisha1

Good for you Laughing

I hope he shuts up now Evil or Very Mad

_________________
Age 53
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..... NEVER GIVE UP
RULE NUMBER 3..... Don't forget the first 2 rules

SingleDad

Aisha only you can make the judgement call but I felt it was in my best interest to attempt to keep a "normal" business life....

If work is close it may be okay if you are not too far from home and not too stressful.

Depression is a risk and keeping a perspective on "normal" is important in my view.

Your kids will be both an energy drain and a positive - work you have to make a judgement call.

Early in the treatment you may not feel too bad after the 5 day treatment and staying up on your job may be good for your confidence.....

Careful with friends - they can be a real energy drain.

For you and the kids you need to focus on you and that's hard for mom's that are usually the energy source for kids and others....

Moody goes with the drugs and energy and you have girl issues complicating that...

we're here - I found a sense of humour useful.... Wink

hang in there....
_________________
Age 62
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation as a prophylactic measure.
1st Radiation Sept 9 completed Oct 1.
Cancer free scan Jan 2010 - remission confirmed
In South Africa for three months

LukeM69 · Regular Joined: 27 Aug 2009 Posts: 35 Location: Brisbane

I have been reading your story thus far and just wanted to note that you're in my thoughts and I wish you the very best Smile

Badri

Hi Aisha,

Admire your guts and happy that you have been able to keep the humour going through this whole adventure. Thought would adding in a few comments. It is after ten months that I would be rejoining the job, I was too weak due to my hospitalisation before the treatment. Even now my legs pain after sitting in a chair for more than an hour. So I would say that some things can wait, do work only body permitting. Life is quite long and there is no hurry. Some of us have the disease becoz we didnt listen to the body in the first place. I for one repeatedly ignored all warnings. About friends you need their support, lots of it but please dont travel for risk of infection. For the first three months my only outing was to the hospital for the chemo sessions and scans.

Good luck and keep posting
_________________
Age : 44
Diffuse Large B cell Lymphoma
Stage 4
Finished Six cycles of R Chop 14 - 21st Jan '09
Officially in remission 9th February 2009
Remission confirmed 24th April 2009

http://cancerforums.net/viewtopic.php?p=49797&highlight=#49797

aisha1

I have had a lot of people supporting me on my journey. Thank you to all that have posted and given me advice. Very Happy

Last weekend I went away to pick up my children from my family. It was only a 3 hour journey, so wasn't that bad. Now my kids are back - but guess what??? My daughter has a bug! She has been vomitting, sneezing and has gone to sleep early! I'm trying to stay away from her so that she doesn't give me her bug. I feel bad that I can't look after her properly when she's sick, but my sister is dealing with it for now (she has to go to work in the morning though!).

It wasn't too bad, explaining things to my daughter. I just mentioned it in passing, as she was having a bath. I told her that the results of my operation had returned, and I have some cancer cells that are dividing, and they are taking my energy so they have to be given chemo to get rid of them. She said "Oh yeah, I get it. Like head lice?" I was a little confused, and she seen that on my face, and said "Because head lice multiply and they get on your nerves, and make you itch, and even if you leave ONE EGG they will start all over again and begin to mulitiply, so you have to get rid of all adults and all eggs". I told her that she has it spot on, and she understood the purpose of the chemo. I then explained that I will be quite sick sometimes, and this will seem a bit scary but only a few days. The rest of them I will be half normal. She just accepted it pretty well, and I told her that if she thinks of any questions, just ask and I will explain.

I have had a terrible acid coming up into my throat. My bones have been hurting and I have felt really tired. My arm that had the chemo is hurting so much, I haven't been able to sleep. I have been taking pain killers but they took two days to work. That arm also feels weak, and I can't carry things with it.

This is turning into another long story. I don't even want to moan about what is going on in my life, I'm lucky that I'm not too badly off!

Oh yeah, my sister cleaned my house while I was away! That was so nice to come home to! Very Happy

SingleDad

Excellent with your daughter - kids connect the dots very well.

••

Do be careful with the infection - I dodged okay so I can't tell you the consequences but you ARE early in treatment so not yet worn down ( yeah yeah I know it feels like it already ).

First hit so next time you won't be so wound up about it.

Talk to the doc about the and do the diary here...we've been there and the in my view the diary helps...

••

I'll offer one bit of advice....keep the circle of support close...it's very tiring explaining things.
_________________
Age 62
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation as a prophylactic measure.
1st Radiation Sept 9 completed Oct 1.
Cancer free scan Jan 2010 - remission confirmed
In South Africa for three months

aisha1

Pheeew! The nurse just called me and said that my bone marrow biopsy results were not indicative of anything in my bones. Cool

She worded it as:

"Well, from the sample that we had, it shows that the cells in your marrow were ok, from the sample that we took".

She said that twice! About the sample that they had taken. It almost sounded like they weren't too sure, or wanted to do another one or something?

I have an appointment with the haematologist tomorrow at 1:00. I'll have the results of my PET scan as well, to see how far this thing has gone in my body. I have noticed another small node under my left armpit in the last few days (even after chemo?) which I thought was strange. Does this usually happen when the chemo has already started? How can more nodes be coming up? I thought it would at least contain them. I have also noticed my right collarbone swelling as well, I'm sure I'll have some more nodes coming up there as well soon!

I have a crazy rash on my left leg only. All of this crap is only on my left side! Laughing

Anyway, the rash is looking like a measles type of rash. It is raised and looks a little bit like small blisters. Has anyone else had this? It is only on my left leg, not on my right side AT ALL. I don't have a clue what is going on with me anymore. I feel confused and totally out of date!

I am seriously becomming more concerned about my mental health than my physical. I feel very very strange. Like I am in a bubble, and the rest of the world is moving in a different space and time. Is this the drugs? I think I have some sort of come down from the steroids or something? I feel so weird, I don't even know how to explain this feeling. The only way to discribe it would be to say that I feel like a colour. That colour is like a dark blue/grey, while the rest of the world is living in full colour.

I'm going to get ready and go out with the kids. Let's see if I begin to feel more normal when I have been out to buy new school uniform! Oh yeah, I have to take my tablets anyway! I better have something to eat.

This forum is absolutely great. I'm gaining so much info. I am becoming forgetful though, which means that I have to write my questions down for the doctors tomorrow Laughing

Cheers everyone!

SingleDad

It's best if you can state each time where you are in your cycle...

Ie Chop+R ( or whatever they are giving you ) Cycle 1 day 5 for instance...

Then we can tell from our own experience.

I only had rashes after the chemo - but you may be slightly allergic - that's not unheard of.

Chemo brain is also pretty common -

Stop the nail biting and let the doctors do their thing....

You need to preserve your energy and your positive outlook.

Hundreds of thousands of people have gone and are going through this and these days the majority have success.

Stay focused on that - your body IS under assault so feed it ( lots ), rest it when it tells you and keep a positive goal set in mind.

Your kid was casual about it.....take the lead from her, you have an auto-immune condition, it's common and can be fixed and you are going to be successful.

Don't go neurotic as the steroids will magnify that like crazy.

Depression can affect 25% of cancer patients and really badly affect their outcomes as they often fail to follow best procedure in dealing with their cancer due to their depression.

Work hard at keeping spirits up, confidence in your cancer team and in your outcome.
Ask relevant questions here and to the team but don't do the worry wart thing.

You have the condition.
You have the resources to beat it and you are far younger than many of us that have had success.

There are no guarantees but you really can help yourself and your cancer team by avoiding depression and negative thinking and of course that really helps your kids too....and eat...you need the resources.

Chin up gurllll.... Mr. Green

_________________
Age 62
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation as a prophylactic measure.
1st Radiation Sept 9 completed Oct 1.
Cancer free scan Jan 2010 - remission confirmed
In South Africa for three months

	Cancer Forums Forum Index -> Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum	All times are GMT - 5 Hours Goto page Previous 1, 2, 3, 4 ... 15, 16, 17 Next
Page 3 of 17

A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others