Care for the Caregiver

Testicular Cancer is rarely a solo effort, impacting thousands of wives, partners, family members, and friends. There are issues that these important people have to face as well as the patient, but little is done to address these needs. This area of the TCRC is dedicated to providing you with the information you need and the support you require. It is a dynamic site - not by design, but by nature - as it will "live and grow" with your input. Please feel to contact me or any of the supporters listed here with your thoughts, concerns, articles, links - whatever! - and on behalf of all of us who have been on the receiving end of the scalpel - thanks for your support!

Email Support Group:

TC-SUPPORTERS is our email support group for you, the supporter and caregiver! This list is slower and less fact and medicine based than our main email list, but it serves just as important a purpose. Please join and introduce yourself!

There are two basic ways to subscribe to TC-SUPPORTERS:

The recommend method for joining the list it to use the web interface. This interface is simple to use and makes it much easier to configure the list the way you want it.

You will get a welcome message from TC-SUPPORTERS soon after, confirming your subscription and telling you about using an email service. Unless you already have an ACOR password, you will have to reply to the confirmation in order to complete the subscription process.

Please note that you can also use this web interface to change your options or leave the list. However, in order to do this, you will need to remember exactly what email address you entered when you signed on to the list.

If the web interface is unavailable, you can join the list the old fashioned way. Send an email to:

Address: listserv@listserv.acor.org
Subject: leave blank (or put a dash, if subject is required)
Message: subscribe TC-SUPPORTERS Firstname Lastname

The default is to get email from TC-SUPPORTERS throughout the day, but if you would like to get the mail in digest form (in other words, only once a day), once you have subscribed send the following email message:

Address: listserv@listserv.acor.org
Subject: leave blank (or put a dash, if subject is required)
Message: set TC-SUPPORTERS digest

Helpful Hints

Here is a great opportunity to share what you have learned with those who are going through it now - please send any ideas you have our way!

• Be prepared!! - From the day of hist first meeting with the doctor's I carried a day planner book. It has every appointment, note, and anything else related to TC, to include phone numbers for docs, insurance companies, etc. It also helps to keep your mind focused.

• Be included in everything that goes on - well, maybe not everything...(grin)
  It is best for both the patient and supporter(s) to know what is going on. While the patient is trying to deal with Cancer, they often can not remember every word that the doctor or nurse says. Two sets of ears are better than one.

• Talk to someone other than the patient. Sometimes we have to remember that they are dealing with cancer and don't really have time for us, but that does not mean that they do not love us. I once talked to a friend at 2:00am for an hour while my husband was in the hospital. I started the call crying hysterically but was feeling much better at the end of the call. Remember friends and relatives do not always understand or know how to help when cancer is the subject, often the best thing is just to have them listen. Talking to other cancer supporters can also be a big help. I went to a few support groups and am interested in going to some more - it helps to get motivated.

• It is OK for you to be depressed too. Although you do not have cancer, this is affecting your life too. Things change rapidly without time to plan (and boy, am I a planner). I would be interested in hearing ideas on dealing with depression for supporters. Have not really found anything that works for me except vegging in front of the TV and eating! I have probably gained all of the weight my hsband while lost at the hospital (and he can have it back whenever he wants!).

• You probably don't want to push your man to talk and discuss his feelings, he needs to do that on his own. Coming to grips with this disease is tough, he may have to go outside and throw lawn furniture around before he accepts the fact that he has cancer! - don't let that scare you...he will probably open up after that. Then you can discuss ways in which you can stay informed of his treatment and feelings, work out a system that works best for you as a couple.

• Get help! If you are taking on tasks that he usually does, your life will get busier. These tasks include taking up his part of the household chores, shopping/cooking, going to the doctor/chemo appointments or even just driving him back and forth to his appointments, picking up prescriptions and other pharmacy items, etc. Also, your stress will increase because someone you care about is going through a severe illness. Taking on extra tasks, even if it only adds up to another hour a day increases your stress (and all those items add up) and depending on how much he normally does, you could be taking on several hours more a day. When he is very sick from the chemo he may do very little other than get through the day, you are doing everything and feeling the stress of him being so sick. Getting help for house cleaning and cooking was the best thing I did. It really lowered my stress and I was not overdone just getting through my day. [Editor's Note: One of the best "gifts" to give someone dealing with this is a month or two of maid service!]

• Beware! Shopping can take up more time than you are used to because it may be more difficult to find things s in the hospital from that Wednesday, to Sunday morning. On Friday, I was getting used to the hourly checkups and ongoing noises and walking periods when a stranger introduced himself to me as the Hematologist and Oncologist. That scared me half to death. Throughout the last two week since this began, I stayed strong, up till this. He said he would have the results for both surgeries tomorrow morning

  These words really let me get some sleep. No matter how hard I tried, I could not get to sleep. I WONDER WHY!!!!!!! Well the outcome was I had Stage 1 mixed type germ cell embryonal carcinoma yolk sac tumor. I didn't know what the hell he said so I said plain English please. This is the best type of any cancer to have if you were unfortunate to have cancer. We got it in the earliest possible stage and the twenty five lymph nodes removed showed no signs of any spreading. FANTASTIC!!!!! Over the next few years I have the ongoing blood tests, CT scans, chest x-rays, bone scans, MRI's and oh, I almost forgot. The left testicle had to have the hydrocele taken care of (water surrounding testicle) and one little tiny, very, very, very painful kidney stone was removed. Well. Things are going good. Sex is alright but no full release or complete ejaculation due to nerve damage during the RPLND surgery, but hey, Patti says good, no wet spots and no more birth control pills. This bothers me but I have to deal with it the best I can. I was told it would happen. Just dry air no "sperm". Regular check ups go great. Things are good.

  WHAM!!!!!!!! It's now Oct. 7 2000 while showering, like us guys do, I felt there and felt a lump on the back of my left one. OOHH NNOOO. I went ballistic I could not conceive of this again