So I was wrong

[Bones]

A few weeks ago I posted with a title - waiting is the hardest part. For those of you who have been through this Im sure you had a wry smile at my expense.
Anyway, here we are and my husband has just finished his first week of EP. Im not sure quite what either of us were expecting but it has been horrible. From my perspective looking in, there is no vomiting but constant nausea, extreme tiredness and a terrible malaise but the worst of it has been the impact on his mental health. It is like he is broken, I would actually say maybe even on the verge of depression (and I don't use that term lightly). He broke down today because he doesn't know how he is going to go back again in 2 weeks time. He will have 4 rounds in total.
Ive read a lot on this site but haven't really seen anything like this - has anyone experienced it so early on? What did you do, did anything help? Im trying desperately to be supportive but I really have no reference point as to how to do that.
Any insight, help or advice would be so appreciated.

[Formula88]

It sounds like I'm a week ahead of your husband's schedule. I just finished my first week of EP last Friday. I can feel where he's coming from. It was hard for me too, because I wanted to know how I would feel when and nobody could really tell me that, since it varies so much from person to person.

Coming from a week ahead of him, I can say that I feel way better today than I did a week ago. I'm not 100%, that's for sure, but I feel more functional and less anxious. It took me a few days, but normalish slowly returned.

The hardest part for me was the chemo smell. After a straight week of it, I was ready to get as much fluid through my body as possible to get that stuff out of me. My wife helped significantly by washing the sheets I was sleeping on multiple times, etc. to get rid of the sweat. I just couldn't stand the smell my body had. Once that was gone (a few days) I started feeling a lot better.

I also found that even though I was tired, it really helped me feel better if I could get out for even just a few hours everyday. I was able to go into work this past Tuesday and Wednesday for a few hours each and I really felt better for it.

For some reason, it also made me feel better to discuss my symptoms with my chemo nurse. I made a list of everything I was experiencing and other questions that I wanted to ask, like can I take melatonin and benedryl to help me sleep, and called the nurse this past Thursday. I'm not sure if it made me feel better to know that everything I was dealing with was in the norm or what, but I have felt more at ease since that conversation.

I still have anxiety not knowing what to expect next or when I'm going to feel worse again. I'm sure my blood pressure is going to be really high when they check my vitals on round 2 day 1 too. I'm not looking forward to the next round, but today I feel like I can do it. I couldn't say that a week ago.

[Smartie]

Hi Bones. Hi Formula88.

Speaking from my experience of BEP chemo in 2002 (in the UK) I'd say that the experience you describe, Bones, is not untypical. I am not present here on the forum so much now, but when I was a few years ago I'd say there was a definite tendency for people, for understandable reasons maybe, to downplay the effects of chemo, both physical and emotional. I guess people don't like to scare others. The truth, for me at least, was that chemo really took a toll. I came through it OK in the end of course, but the experience itself is pretty hellish. I've heard it likened to repeatedly recovering from a car crash just to have another. That said, the whole experience is not necessarily unbroken misery. Your husband is in the low period right now. During those times I would feel utterly wiped out, weak in a way that I had never felt before - nothing like being tired. All the things you describe, including the malaise and depression. I would sometimes sit in a chair for a day or days just rocking and responding in monosyllables to anyone who tried to reach me. It passed though. Pretty soon he should move on the the stage that Formula88 described: feeling better, getting out a bit. Showing Yourself to people and taking a pleasure in interacting with the world. By the end of each cycle I found I was feeling relatively normal and liked to go to quiet places like museums or historic buildings (they're all over the place here!). The cycle would begin again, but at least the second time I knew what I was in for and how long it would last.

Very best wishes to you and your husband. And to you, Formula88.

[Chemin]

My son went through much emotional anxiety after the first week. He bordered depressed as well, but he started to count down when his treatment would be over.Even though each round was more taxing on him physically, it got better emotionally. Hang in there. It's hard on everybody, you included as the caregiver. Be supportive. Let us know how it goes with time.

[biwi]

Getting out for walks as much as I could really helped. Even when I only felt like being on the couch or curling up. Knowing that what I was going through was only temporary and I would be cured in the end helped tremendously. I studied my path report, bloodwork, and ct scans and lined them up with the guidelines and others' experiences here and knew that there is a very high likelyhood that TC is a relatively short speedbump in the grand scheme of my life and while it temporarily sucks, I would get through it and things would get better. The first and 2nd rounds were not too bad for me but the 3rd and especially 4th round really wiped me out energy and nausea wise. It was especially hard having an 8 month old son and my wife having to take care of him 90% of the time in addition to her regular day job. I felt bad that I didn't have the energy to take care of him, as well as avoiding touching him or picking him up from daycare to prevent infection and sickness. But within 2 weeks of my 4th round I was already feeling pretty good. At 5 weeks after my final round I was able to jog for over a half mile continuously. At 6 weeks out I feel pretty much 100% normal again and I have no stomach issues at all. My hair has started growing back as well. Annoying that i have to shave my beard every 3 days again!! haha

[JeskiM69]

I've noticed that for a lot of guys who have a real hard cycle 1 that the next few cycles are relatively easier. I think it's because the nurses get the support drugs sorted out (more effective). Plus he will now have some experience to draw on to do things a little different in the next cycle and his body is adjusting to it. It's very important to tell the docs everything that he is experiencing....including the mental stuff....they may have some drugs to help on that front too. It's best to put this into perspective of his entire life (past, present and future) and you will realize just how much of a speed bump this is. It is indeed temporary (8-12 weeks) and then a strong recovery will happen and before you know it he'll be back in normal life again..

For me the emotional aspects never hit till after I completed chemo. I think it was because I saw it as a temporary speed bump and I only had to fight for those few weeks. Plus I had a ton of other stuff going on during chemo. We were selling the old house, packing up, and moving into a new house. Plus the loan got messed up in the middle of it for us and the people buying our old home lost their loan and we had to put the house back on the market again....so for a while during chemo we had 2 homes to mess with and all my crap was in boxes and I had no energy to sort it out. I don't advise doing a move during chemo....but in some ways I think it prevented me from taking a mental nose-dive at the time as I was focused on other crap.

Now physically I was one of those who the 1st cycle was pretty easy. The second cycle was slightly worse, but then the move wore me down physically and the Neupogen in cycle 2 gave me some some hard side effects that they did not prepare me for. So when I came to my last cycle I was not recovered physically and emotionally I just wanted this to be over with....so then I just kind of gave in to the chemo instead instead of staying active like I did in the first two cycles. I think that made it far worse....not staying active physically and mentally. That last cycle hit me very hard. Nausea, fatigue like you couldn't believe, smells upset me horribly, I did not eat or drink and had to got to the hospital for IV fluids and nutrients, My blood pressure dropped so low for three days if I stood up for more than a minute I fainted....sitting up for long wasn't much better....that was the bottom for me. The first 3-4 weeks after were a slow but steady recovery. The nausea steadily got better. The smells went away pretty suddenly. I drifted in and out of chemo brain for a while. The key was to eat and eat. especially red meat....it really helped my recovery. I noticed that on days when I didn't eat so much that I kinda tanked and lost energy/strength.

I think getting some daily exercise even if it's just walking around the block or a treadmill for 15 minutes has a huge positive impact during chemo. I used my neighbors treadmill every morning before I went to chemo during cycles 1 and 2. we used to live in a tightly knit cul-de-sac where every evening all of us neighbors hung out. We were a family. Our new house has some acreage and the neighbors are farther away and older....so I lost that aspect of "family" in my 3rd cycle. Get out to a movie with friends on the good days between cycles. Do yard work, do a hobby, etc...anything that resembles normal life while you know that next cycle will have it's low points it's really only temporary.

Smartie is correct that people down play how hard the chemo is. Especially when they are in it (getting good support drugs and chemo brain) or freshly out of it. I still remember those first few weeks coming out of chemo. I thought I was doing pretty well. Looking back at it now I realized just how badly messed up I was.

I am at 15 months post chemo now. I am at a new 100% normal level. I'll never be the same as before mentally or physically. However the me now is far better than the old me and I am much happier with life now. Yes I have long term damages from the chemo like neuropathy, hearing loss (in addition to the hearing loss I was born with). Some of the long term damage I have I would not know I have it we didn't have it quantified in all my tests such as: reduced lung function, kidney damage, immune system damage, blood pressure swings. Occasionally I have transient periods where I just don't "feel right" and we can't get to the bottom of it. I suppose that is just the price you pay to have the rest of your life returned to you....I'll take it over the other option I had: 9-18 months to live without chemo.


- Matt

[Bones]

Thank you everyone, I really appreciate all of your openness. It actually got worse after I posted and he had what has been described as an acute anxiety attack on Sunday. The Oncologist prescribed something and today our family Dr has diagnosed depression and given him meds for that too. Apparently this is not uncommon for cancer patients and can affect as many as 1 in 4. We were high risk going in as we are far from friends / family but our new community has really rallied which has been great. He's just a little far down the hole to see it right now. Part of the problem has been that he was given a choice between watching and waiting or getting on with the treatment and nailing it once and for all. Clearly that is playing on his mind now as he fears he has made the wrong decision. He will go back to his Onc on Friday and in the meantime we are trying to get an apt with a pysch who specialises in those on chemo. It is so tough to watch, I cannot imagine how I will get him back for the next round in 2 weeks ...

[Davepet]

I do not think anyone here "downplays" their chemo experience. It is just that we are all individuals and respond to stress differently, both physically and mentally. I'm not saying stronger/weaker, more like lucky/unlucky. I was fairly lucky, my biggest complaint was extreme fatigue. I cannot understand how anyone getting chemo could get up & walk for 15 minutes a day, It was not possible for me, and I did try..

Try to help him focus on the fact that he will be cured & feel better rather quickly after the treatment is done. It is just a few months of feeling bad & then it's back to normal and the rest of his life.

Dave

[Bones]

So actually it turned out to all be caused by the drugs, or rather one in particular. He was given a steroid as the first bag each day to help with nausea and it has a well documented side effect profile that it can cause extreme depression and irrational thoughts. One of the Oncs patients reported that he believed he was responsible for Columbine! It is just unlucky if it does it to you I guess. The effects on nausea don't outweigh the psychological effects so that one will be missed off the next treatment. I cannot tell you how relieved we were! My husband is feeling way more positive about round 2 although a little bit of trepidation as he feels like he's starting again and not sure what to expect. His bloods show he is anemic and he certainly feels fatigued although is back at work. Onwards!

[biwi]

Great to hear he's getting through it. During chemo weeks I went day by day. Each day is that much closer to being done!

[Bones]

How are you doing now Biwi just over a month on?

[biwi]

How are you doing now Biwi just over a month on?

Feeling pretty much normal in all aspects! Hair is growing back. still has a little ways to go to be normal again though.