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Update on Scissors MacGillicutty

suzjazz
Posts: 17
Joined: Jan 2009

My BF, Scissors, has stomach cancer dxed in January. He had 6 weeks of chemo and radiation followed by major surgery last Monday to remove his stomach. He is still in the hospital (though not in intensive care anymore) They didn't find any cancer spread to other organs.
We are still waiting for results of the pathology report to determine if any cancer cells are in the lymph nodes. He has to have another course of chemo when he is healed. He is on a lot of IV pain med but said today that he "feels less shitty than yesterday." he is getting a protein liquid by tube and wishes he could have a homemade fruit punch.

I am optimistic that he will do well. He has been sitting up and walking a little, and tonight he was watching TV for the first time.
He has a huge wound and scar which will take a while to heal. It will eventually be a cure (we hope.) It will be a long journey but we are taking it on.

Tonia11
Posts: 57
Joined: Jan 2009

Glad to hear he is recuperating okay. He's on his way..

Tomissimo
Posts: 37
Joined: Sep 2008

I am glad to hear he is doing well. The good news is it will only get better from here. Though it is a long uphill battle. Having a a good helpful person to get through it means a world of difference which it sounds like you are doing.

Are they feeding him with a J Tube? I wasn't allowed/able to take anything by mouth for about 6 to 8 wks and needed an additional endoscopy to verify I was able to eat/drink. I hope the recovery keeps proceeding for him and we look forward to further promising updates!

suzjazz
Posts: 17
Joined: Jan 2009

Not sure what a J tube is. He has a tube that goes directly into the small intestine. The surgeon said today that he would probably take it home for a while. They want to get him on some solid foods (by mouth) before releasing him. Tomorrow he is going to have a high fat breakfast to test how well the intestine is metabolizing fats. The nurse said it would include eggs and cream in his coffee
(no bacon, though) Today he had some broth, a little apple juice and some jello. He didn't have much. He no longer has a naso-gastric tube or a catheter--he does have an IV and they are trying to figure out how much oxycodone to give him. They have been giving it to him in liquid form. He is supposed to have his antidepressant pills again (there is no liquid form of these meds) I think they are going to grind up the pills and mix them in some applesauce. He was drowsy today and kept nodding off. The nurse thought he was on too much oxy. Each day, though, he seems stronger and better.

Tomissimo
Posts: 37
Joined: Sep 2008

Well not sure I can offer much help in this regard. I wasn't allowed to take anything by mouth for about 6 wks after my surgery. I had a total gastrecomy and the bottom third of my esophagus removed. Not sure if that makes a difference. I never had the gastric tube either. The J tube is a Jeujenum (sp?) tube, which is part of the small intestine. All my nutrition and pills I took via that tube. Used a mortar and pestle device to grind the pills.

Starting eating again was the worst part for me. So I hope if he is eating right away that he won't have the same problems I did. Keep us up to date, and everyday will keep getting better.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

I have been wondering how things have been going for you two. I am glad to hear that the surgery showed the cancer had not spread, that is certainly good news! It sounds like he has the drive to do well since you mentioned he is already up and walking a bit. He is on the road back to recovery and you my friend are such a support I am sure he greatly appreciates. All that said Suz, be sure to take care of yourself as this undoubtedly has been taxing on you as well. Don't feel bad if you need a little Suz time, you need to be in good shape to be able to give him the support he needs. Happy to hear things are going in a positive direction. Take care and know that you are in my prayers.

RE

suzjazz
Posts: 17
Joined: Jan 2009

Thank you for your kind words, RE!
Scissors was supposed to come home yesterday (Friday) but when I got to the hospital he vomited for the first time since surgery. He hasn't been eating much yet. So they decided to keep him overnight. I'm supposed to pick him up at noon today. (It's 3:30 am and I am having trouble sleeping.) We will have a home care nurse come in for a few days, and he will have to have nutrition formula through his J tube at home for a while. He will also be eating some soft foods by mouth.

I was gearing myself up yesterday for taking him home. After he vomited unexpectedly, I started feeling upset. (Actually, I was having a bad day from the beginning and had a hard time not crying from the minute I woke up.) I went to the patients' lounge and began crying uncontrollably ( I didn't want him to see me crying.) There was no one else in there but a nurse aide heard me and came in to offer help. After a while I stopped crying but had to go back to his room. I told him I had a meltdown (he could tell I had been crying) I figured I might as well be honest. No one can be brave all the time. I am the only person who can care for him. I told him it wasn't his fault that he couldn't come home because he kept apologizing. I reassured him that he would probably come home the next day.

I'm telling you this because I had no one I could talk to. The nurses at the hospital were too busy. I usually do not cry and it is very hard for me to lose it in front of people, even my friends. The stress just overwhelmed me temporarily. The nurse gave me a list of caregiver support groups and I will see if I can go to one. I often worry that I will not be able to help him. I feel guilty when I get angry at him for being sick. Sometimes I feel like he has ruined my life although he hasn't. He is a wonderful person. But I am very ill-equipped to be a caregiver and I wonder what will happen to my own life now. I have been trying to take care of myself since this started but it has been 5 months and I can't take it anymore. He might read this, and if he does, I hope he realizes I love him but I need to vent and right now I am having a hard time coping.
Thanks for listening.

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Ahhhh Suz, I know it is difficult I wish I was near by I would listen to you vent and let you cry. Please do go to the caregivers support group as I am sure they will understand and be able to help you with your feelings. It truly is important for you to do things for yourself as well, you cannot allow yourself to be lost in this as I am sure he does not want that for you either. You know I once told my husband I was sorry he got a raw deal having married me and ending up having to deal with the cancer issues. Please know that your feelings are okay your world has also been turned upside down. We as the patient who is striving to survive sometimes forget about how this all effects those around us. Keep me posted my friend, you can email me here anytime and you can vent to me anytime!!! Please take care of yourself!

Your Friend,

RE

suzjazz
Posts: 17
Joined: Jan 2009

Over a week after coming home from the hospital, Scissors is much better (though still has pain and gas.) The visiting nurse said today that he has to get outdoors and walk around. I have been trying to get him to do this but he doesn't listen to me. She persuaded him to go out the back door and walk slowly up and down the driveway. She told me he also "needs a project to work on so he doesn't focus so much on his aches and pains." I have a project for him-- transferring some old tapes of my band to CD--but when I suggested it (he actually offered to do it a long time ago and never got around to it) he said it would take too much bending over to plug everything in.
I said, "I'll do that part." "But I need some new cords from Radio Shack." "No problem. Just make a list for me and I will go buy them and get you set up." Hmmm...we'll see if he follows through.
He ate more than he has since getting home: a huge piece of watermelon (which amazed me) some yogurt, and a scrambled egg.
He's still not hooking himself up to the J tube, and the nurse spoke to him about how important it is. I'm not nagging him about his care.
He has to be responsible for it.
This discussion really should be in Caregivers. There are so few stomach cancer victims compared to other forms of cancer that I want to give others hope by describing Scissors' recuperation. He's going to make it.

Thanks for being a friend, RE!

RE's picture
RE
Posts: 4606
Joined: Feb 2004

Hi Suz, it sounds like things are looking up a tad which is a good thing. He sounds like he has to come to terms a bit with his situation and how to improve it, I am pretty sure that that will come with time. It is hard to have to see ones self in a new light, not being exactly what we once were. I know for me just having one breast marred and all the weight gain from the steroids was such a downer, I was sure my husband was going to look at me differently. Then when the other breast was totally removed I was absolutely certain he would have some reservations, well I was wrong and he never once saw me as anything but the gal he loves which made my return to normal (as normal as we can be) much easier to get to. Change is hard Suz, hard for both of you but it sounds like it is getting there and I am so pleased for you both.

His nurse is right he does need to walk about, even if only in the yard as it will help him regain strength both mentally and physically. I hope he works on that project for you, you will both get something out of it so its a win win situation. You are right Suz, the folks on the caregiver board could benefit from your writings, and you too from theirs. You can always copy it and post it their as well. I hope things continue on an uphill pace, he just needs a bit of time. Keep in touch Suz and know that you and your honey are in my prayers.

Hugs,

RE

Tomissimo
Posts: 37
Joined: Sep 2008

I believe I mentioned this before, if not to you then elsewhere. Do not take any frustration he may have personally. He's gone to hell and back and there is a lot of frustration from the aches and pains, and quite simply being unable to perform many simple functions. It's a strong blow to your pride when you HAVE to rely on someone else to help do simple functions. I for example had to have my wife help me shower, because all I could do was simply stand there for the first week or two when I got home. Or I needed help getting up to go to the bathroom.

Things will get better in time, but constant pain, lack of sleep, etc would put anyone in a grumpy mood. Just remember it is his situation not you that he's mad at.

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