Newbie with very little support

Sorry to hear of this

In your case, your husband is your support. Now, he cannot know what you are going through, but he has an idea. However, hubbys sometimes have the "stiff upper lip" or John Wayne attitude and while that might work with his friends, and maybe even most guys, women are not wired like that (a good thing!). Your case points out something important when diagnosed with cancer: the first thing we want to know is if someone else is undergoing the same thing. 

Your case also points out how utterly individual our cases are. We all share something, but the specifics are going to be completely different. The sleeping with pillows I remember - but I used them for a different reason. As to contact with others, Skype can be huge. It is so comforting to interact face-to-face, even in cyberspace, with those whom we know and love.

Anonymous forums such as this one can also be a great help, and a new type of relationship is formed right here. A lot of advice and counsel is available and while not all of it will help, we accept it in the spirit in which it was offered. 

As to needles, time to reverse your thinking and realize that life itself now comes through those needles. I do not necessarily like needles, but I have had hundreds of them in me over the past ten years, and now inject myself due to type II diabetes.

Always remember that you must be alive to have complaints.

There is a saying...

"I went looking for a friend and found none. I became a friend and found many."

It might help to think of others who are far worse off than you are. You can be their lifeline. In helping them, you will also be helped. That's just the way life works. Your treatment center, or various lymphoma foundations have systems in place to connect you with other patients for mutual support. Check the Lymphoma Research Foundation, for but one example.

We are here

Hey Lori, this forum is here to offer support when you need it.  So sorry about your diagnosis, but congratulations for acknowledging that you need some support and for reaching out.  You'll find that folks here will offer what comfort they can, but you'll also find that you won't always agree with what someone has to say.  That's OK. You'll also find that some days you'll get a lot of feedback and other days you just won't.  That's because we are all sick to some degree and not always able to be "there" for others.

Your journey is just starting, but it sounds as though you've found a medical team that knows how to treat you. If you have questions about your treatment or handling side effects, of course ask your medical team, but it's OK to get input here too.  One suggest I would make to you straight away is to find out from your doctors what services you might take advantage of locally, so that you are not exhausting yourself and your husband driving hours to the clinic.  By services I mean specifically: blood work (possibly 2X per week), post-chemo Neulasta/Neupagen shot (if you cannot get this locally, ask your doctor about "on-board" Neulasta...It's a new thing).  Also, where can you go locally if you spike a fever. While it's great that they come to you regularly, there may be times in-between when you need something.

It would be helpful if you shared the chemo regimen that you are looking at...R-EPOCH? R-CHOP? Or?

You may also want to take advantage of the "Chat" feature on this site.  You can find the CSN Chatroom in the upper left hand corner of this page (you must be logged in). There is almost always someone logged in looking to connect.  I am not a "chatter", but I look in there occasionally and see that many folks are that friendships have formed.  The Chatroom is not organized by cancer type the way the forum is, but I expect that you will find people who share your concerns and be happy to talk in real-time.  Right now, that may be exactly what you need.  (As always with a chatroom, be cautious with your personal information.)

Be well and let us know how you are doing. 

Tricky times and blurred lines

Welcome and rest assure you are in a good place here.  Many of us have a thicker skin now.  As survivors we have gone through the chaos, pain, fear of our own personal journey.  Sometimes it may come off as insensitive yet was meant to be the polar opposite.  Some have endured much and overcame unimaginable odds.

Like you and Rocquie I had little to no support not even from my husband.  He was a mess in the beginning, when he tried to help it was all wrong.  He can't cope, plain and simple.

You see I was protecting my young children and my parents for very difficult reasons which made me hide my cancer from almost everyone.

I recall getting out of my treatment on December 15th, in the height of the Holiday season cooking, decorating, shopping, wrapping, hiding the gifts from little eyes, spending time with my sick father and being the master of ceremonies on Christmas Day.  I didn't feel well, tired beyond anything I have ever known before; I just sat down when a family member was making digs at me because I dont do enough.  

For a moment I wanted to cry.  Where was the out pouring of love, care and concern I witnessed from everyone giving my father?  I too read the stories where people bring food etc.....  I remember another family member with an elevated voice tell me, I knew nothing of lymphoma.  He did because his mother in law had it.  Little did he know his sister was battling the same thing.

 

My point in telling you this is, it was hard and still is.  I didn't even find this safe haven until a year after I learned I had stage IV incurable cancer.  I had to be better than I was, somehow.  I learned to dig deeper then deeper yet.  Cancer is hard and terrifying but it also made me a warrior and a woman of more meaning and substance.  My appreciation for life, my family, my sassy strength are priceless.

 

I always try to look at the positive.  You're ahead of me, I found this place one year after diagnosis.  How I wish I had this.  There is something quite comforting about this group.  We have all been there. Different yet similar paths.  We know your fears and concerns and when some else has been there it takes on a whole new meaning.

 

Dont be discouraged but empowered because you have this group.  May you seek and find more.

All my best

CritterMamaLori said:

I made it

Another appointment down. I did find out my regimen is R-CHOP.

All at the office were amazed at the difference in the size of my neck and asked if I was eating well... as in actually chewing and swallowing as opposed to drinking my meals.

Hubby commented I am doing a little better with my needle issue. I have to give some credit to po18guy to help think of it as a life line instead if a threat. Still can't get past the panic attack but maybe in time I won't tear up everytime I talk about it. I would be happy if the nightmares would stop. 

Welcome

I welcome you also, Critter Mama. I am wondering if your screen name suggests pets ? They are often very supportive emotionally.

You will make many friends here.  I did not start on this Board until a few years after chemo ended for me, and I can't even remember why.  The responders will all be different:  Some "clinical," writing only about "factual" issues. Others are mostly emotional, but most are somewhere in-between. You will have a selection to choose between.

R-CHOP is the most common first-line (initial) treatment for most Non-Hodgkin's Lymphomas (NHL).  Virtually all of the ommon side-effects are common with it, but most people only have a few, and there is no way to predict which a given patient will or will not get.  And side-effects ordinarily increase over time, with more infusions completed.

I have always been squeemish and could not tolerate needles, so a port was absolutely vital in my case.  I was run over by a car 30 years ago, and spent about a month in ICU. Constant needles, proceedures. But the worst was arterial blood gases, in which blood is drawn from both arms at once from arteries (not veins), to measure blood gases on each side of the lungs and heart. Probably the worst pain I've endured, although I was awake when a surgeon thrust a chest tube into me to reinflate my lung; this was through 13 rib fractures.  And my knee cap was hanging loose inside me pant's leg, when my clothes were cut off.   I also had "shunts" in both arms, and more drain tubes than I can recall.   Saline flushes every few hours to remove clots in the lines, which burned badly.

After lymphoma, I later got prostate cancer, and had that cut out -- horrible.  I count about 23 surgical incisions today.  My point is that we all get through all of these things.  My listr of medical conditions is two pages long, single-spaced. And all are significant issues: stuff like lung fibrosis, neurological disorders, and many more.   We survive NOT by being heros, but because we essentially have no choice.

I was bedridden almost my whole 6 months on chemo, and had almost no visitors the whole time. Slept about 15 to 17 hours per day.  Most days I could only get to the bathroom. My wife had to pre-heat the car and help me walk out to it when necessary.  Ergo, "visitors" were an impossibility for me.  My lungs were too weak most of the time for me to even speak on the telephone. 

I did make numerous friends at infusion, however, and among the oncology staff, people I still know and cherish today.  A neighbor got NHL about a year before I did a very aggressive strain.  He was a big guy, about 6'4', maybe 300.  Before he was finished with his R-EPOCH therapy, he was skeletal, mayber 130 pounds.  His roommate was a body builder, and had towrap him in blankets and carry him to the car to go for infusions, which for him (and most people on r-epoch) was as an inpatient.   On days when he did not have treatment, his roommate had a bed set up in their living room, but he was unable to get up by himself.  He is totally well today.

My wife did everything for me; without her I do suspect that I would have in fact died.  Recalling later, I do remember waking up alone at  home a few times, unable to breath. I had to pant like a dog to survive, probably due to the fibrosis...my oxygenation was probably close to death.

I hope you find support here.  But you will get through this and get well, absolutely,

max

Walking

Hi Lori, 

Keep walking, whether it’s a mile or a block!  When I went through R-Chop I continued to walk outside as much as possible. just getting outside was helpful. You can eat salad and veggies!  However, wash, wash, wash them! OR steam and sauté them. 

I putzed around the house, ie: cleaned. Consider it exercise and the chair is there if you need it!  As the treatment goes on, you will feel more tired. however enough energy to feed the cats, dog, dust and vacuum. (leave the litter box for your husband).

I worked at the same time, however my employer allowed me to work from home. It kept my brain working.

I love my port. It saved my small veins. i think you will like it a lot especially if you are afraid of needles. 

Sharon