How to know when to support and when to give space?

[Pink Converse]

My 23 year old son found a lump about the size of a pea about 4-5 weeks ago. He gave it a couple of weeks, when he noticed it getting larger, he scheduled an appointment with a GP. Since he hasn't seen a doctor in a couple of years and moved this past January, they scheduled him for two weeks later (this past Friday) and he didn't push the issue. Trying to keep me from worrying, he never said anything to me until Friday when I was driving in to take him to the airport for him to take a 2 week vacation in Europe (which he cancelled after seeing the GP).

By the time he saw the GP Friday, the lump had grown until the testicle was about 4 times the size of the other testicle. He had ultrasound the same day, was given suspected cancer diagnosis from urologist Monday with tumor markers drawn on Monday and had surgery Tuesday afternoon. He had some additional bleeding in recovery, but was re-bandaged and sent home. Yesterday (day before Thanksgiving), he bled through his bandaging and we went to ER and bleeding stopped on its own. Surgeon thought the large hematoma that had formed at incision site would keep enough pressure to keep the bleeding stopped. It didn't, and we ended up back at the ER today for a second surgery to remove all the clotting and excess blood and to cauterize whatever was bleeding.

While in the ER yesterday, the urologist told us AFP and HCG were both elevated. I chose to not ask what the numbers were - we can get to that next week after CT scan (Monday) and when pathology comes back.

Enough history. As a 23 year old son who is protective of his mom, he wants to be independent and not rely on me. I'm trying to balance giving him space and time with making things easier for him. As he heads into chemo, should I push him to let me do more or wait for him to ask?

Cathy

[jmb5026]

As a 28 year old who is close with his mom, I loved having my moms support. However my mom was obsessed with making sure everything was okay and telling me so. She tried everyday to support me and make things better even though she cloudnt. Chemo is kind of a kill the clock situation. A lot of the time I just wanted to be alone and pass time watching movies ect. I would pay close attention to him but respectful of him just wanting time to himself. Don't be constantly talking about it and checking in, it may become too much and irritating.

With that said, I don't know your family dynamics and how you are to each other. Take it day by day and keep things light and positive.

You'll get through this. I was in almost the exact situation this time last year. A year later I am celebrating 9 months cancer free and I am closer with my mother than ever

[JeskiM69]

Cathy,

I am so so sorry that the IO has been this problematic for your son. Not exactly a good way to first experience the "fun" of cancer treatments. I am glad that you found us though. I am also glad that it seems that the ER visit today has put an end to that unfortunate complication.

You mention that chemo is next....has the doctor already set him on that path without completing staging and pathology ? That doesn't make sense. No induction chemo should ever be given without identifying active cancer that has metastesized outside of the testis, You will not know that until staging is completed. He is due for a CT on Monday. He should have been referred to an Oncologist now. By the time he meets the oncologist and gets back the CT results the onco. will do another blood test to see if the AFP and bHCG have normalized. If they have normalized and the CT is clean then he will be a Stage 1 and chemo may not be needed. There's still a good chance of that being the case, despite the size of his primary tumor. The IO has an 80% chance that he is already cured.

As to your question about support. That is a tough one as it depends on your family dynamics like JMB said, It will depend on how your son reacts to his cancer diagnosis and how he chooses to deal with it. It also depends on external support structures like work and friends. Lastly it will depend on how eventful/uneventful the surveillance and/or treatments go.

If he needs chemo (3xBEP or 4xEP) and it's uneventfull then he will not need much "support". It's because you know how when you get real sick you just want to be left alone to sleep or otherwise try to be comfortable....that's how the sick times are. Between cycles he will be more like himself.

My chemo was pretty uneventful; as in I did not end up in the emergency room or had any real serious issues like blood clots, internal bleeding, lung or other organ issues, or infections. If he has events like that. that's when chemo gets ugly. For me mostly I had too much other things going on in life: my daughter was finishing kindergarten, we were buying a new house, selling the old, packing up and moving and had two homes to deal with for a few months while in the middle of chemo. So back to the point of an uneventful chemo regimen. We learned during chemo that there was very little that my wife or my mom (who came down during that time)9and my dad who helped during the move) could do for me. My challenge was to deal with the side effects. Mostly that was on my doctors to get me the right drugs,etc to deal with it. I depended mostly on my doctors to get me through it. for example:

1: Hydration -- That's on me and the docs. I got to the point where even drinking water just made me sick
2: Food/Tastes -- It all tasted like crap. It was on me to find food that tasted ok and did not make me want to puke
3: Extreme fatigue -- nothing could be done about that but to sleep through it
4: Nausea -- on my docs to give me good drugs for it and on me to take it as directed
5: Smells -- nothing could be done about that other than try to stay away from the offending smell
6: Constipation -- again that's on the docs and me to take something and drink something for it
7: Blood pressure -- never could do anything about it
8: Neutropenia -- Docs had to deal with that by giving me drugs and I had to inject them myself
9: Chemo brain -- nothing could be done about that; I had to just slog through it
10: Tinnitus -- nothing to be done about it; just slog through it
11: Hearing loss -- maybe I can get hearing aids, that's on me
12: Neuropathy -- nothing to be done about it but to live with it
13: Dizzyness -- that's on the doctor to solve (nore drugs)
14: Mouth sores -- that's on the doctor to solve
15: Baldness -- I actually enjoyed that one side effect
16: Nuepogen bone pain -- Take pain killers and grin and bear it

The rest is all mental and how your son deals with it. Doe he get depressed, angry, withdrawn, etc How he handles it will impact what you can do for him.

That list is big and unfortunately there's very little that can be done about it except to rely on the doctors and him just pushing through it. I think sometimes the cancer treatments are worse on the caretakers than the patient. It drove my mom nuts because she came down to help me and wanted to care for me but there was nothing she could do for me. I just had to power trough it, It's rough. It's exactly like being sick. You just have to push through it and mostly you want to be left alone. I don't mean alone like pushing people away. I mean just let me watch tv all day, do nothing all day, sleep all day, eat what I a want, when I want. Don't push me. Don't force food or drink. Don't force me to go for a walk. Don't make me come to the dinner table because I don't feel like it.....that's the kind of alone I mean. You have to always be there, but you'll have to give space when he needs it. Just be there but don't coddle. Don't break. Don't be fake. Be strong, Listen, Let the doctors deal with the stuff you can't supply.

Hope I wasn't being too blunt. I am only speaking from my pesronal experience. It's always an individual experience.

It's a lot to deal with and you can really only deal with it one hour at a time, one minute at a time. Kinda like a drive across country....you just take it one mile at a time.

Before you know it it will be done and the cancer thing will be in the rear view mirror with the rest of his life ahead of him,

- Matt

[Davepet]

First, we still do not know enough to know if chemo is going to be needed yet. Waiting for test results is often the hardest part of a cancer diagnosis.'

Second, at 23 your son is an adult, but lacks some experience at navigating something this complex.Seek to fill in the gaps where his experience is lacking, but otherwise let him deal with things if he can.My first TC at 20 it was helpful that my folks stepped in & got info I didn't think to ask about, so you have a fine line to follow at this point. It is his journey and you just need to be looking for areas he might not be up to dealing with himself. I know you want to be in control, mamabear, but that ship has sailed. You now need to sit back & be proud of who you raised and be ready to assist if needed. JMHO.

Dave

BTW, do not be offended if you are not needed, It means you did a good job!

[Va_Dad]

Hi Cathy, I'm the father of a 21 year old who was diagnosed with TC 16 months ago, everything happened so fast it was a blur. My son went to the ER and was admitted to the Hospital on Friday, he was diagnosed with TC on Sunday, CT/MRI scans on Monday, fitted with a port and started Chemo on Tuesday, I/O on Wednesday, it was crazy. Watching your son go through this treatment may be one of the hardest things that you have to do. All the responses above provide insight as to how your son may feel and I second Davepet's comments in his post! Your job is to help guide your son through the treatment process. I personally feel that you have to do both, push to help and wait until they want to be helped, I know its confusing and very frustrating. Ultimately you know your son the best and you will inherently know when to leave them alone and when to push them along.

[Bones]

Hi Cathy,
My husband has just finished round 2 of his 4 cycle EP. I'm going to agree totally with what Matt said, he is right on the money. My husband is a terrible patient but he has discovered the hard way that he needs to have help. He can't drive himself to appointments at the end of a cycle, the chemo brain & fatigue meant he missed anti nausea drugs if I didn't remind him to take them.
That being said I'm trying desperately to maintain our husband/wife relationship rather then patient/carer. He only really needs my help at the end of each cycle and I just get on with what ever needs to be done rather than ask him or make a big deal. I just keep everything else going and try not to add anything to his plate. He tells me not to do anything special but then really appreciates the mints I got him to help with the bad taste and the Gatorade when water just didn't taste good. He did say he doesn't like to talk about it as if I ask how he is it just reminds him what is going on so I just take my cue from what he looks like.
I do think it's important for someone to keep track of what's going on, my husband has forgotten things that the oncologist said he really needed to know, especially in relation to managing the side effects.
Mostly though, as Matt says, it's on him and he just does his best to get through each treatment knowing that it won't be forever. Best of luck to you x

[Pink Converse]

You guys are the best! Some great suggestions, facts, and experience here/ I've actually printed all of this to refer to and remind me. Thank heavens for the ability to learn from other people's experiences.

After a second surgery to control bleeding after I/O five days ago, he is doing much better. Started working from home yesterday. CT scan yesterday. Initial tumor markers were AFP - 264 and HCG 222. Meeting with urologist on Friday to get path & CT results.

Best to everyone!
Cathy