One patient with glioblastoma still alive nine years later
by KentGirl1 on Mon Mar 12, 2012 12:02 AM
My Dad has just entered the final week of his chemo and radiation for his throat cancer, and has very swiftly, in the last week or so, gone from coping really well and driving himself to treatment, to becoming a complete vegetable.
He cant eat, drink, or speak. He is fed entirely through his tube and can only whisper a few odd words. He is only 65 but looks about 90 now, all withered and frail, its so upsetting.My mum is his carer and its really tough on her. My sister is 24 and I am 28...we both live away from home but luckily not too far...but I feel so helpless. Im ashamed to say that I almost dread seeing him, because its such an upsetting sight and I dont know how to talk to him...he looks so sad and depressed and I dont know what I can say to help lift his spirits. And sometimes I think, would he rather I wasnt seeing him the way he is; he is a very proud man and I know he will be HATING the fact that his wife and especially his kids, are seeing him looking so frail.
But I cant tell; do I stay in his room and chat rubbish to him to make him laugh, or leave him alone? He sleeps most of the time anyway, when he isnt coughing up blood and mucus.
I love him so much but im terrified and cant stop myself thinking "what if after all this, the cancer hasnt gone" or "what if he gets the all clear but one day it comes back". I know its pointless thinking like that, but I cant help it.
by PopPop on Mon Mar 12, 2012 01:09 AM
Right now, your Dad is in the worst part of the treatments, he will look bad for a spell. We " Cook" for an additional 4-8 weeks after our final treatment. I could not speak much louder then a whisper in my last week of Radiation. My wife took all phone calls. I would only answer the phone when she called me to check up on me. I had Radiation only, no Chemo (Doctors wanted to save Chemo as a backup) and was able to handle it, with Chemo on top of Radiation, it can really take a toll on someone.
You may want to ask your Dad if he would like to take a short walk with you down the street. It is amazing how a short walk felt to me. I would be winded quickly, but, just getting outdoors for a few minutes helped.
Make sure he gets the required calories in each day if at all possible, it will help his recovery from the treatments. Also, make sure he continues to swallow at least some water orally each day.
Another reason you should continue to visit, is to give your Mom a break and see if you can do anything for her. Even if you suggest that she go out and do a short food shopping run just so she can get out of the house for a few minutes on her own. Sometimes the Caregivers run themselves down worse then the patients.
My Best to You, Your Family and Everyone Here
by KentGirl1 on Mon Mar 12, 2012 10:25 AM
Thank you for your reply. I appreciate it, and sorry to hear you've been through this ordeal.
In terms of the care he is getting, mum is giving him the Ensure drinks to make sure he gets enough calories and I bought him some flavoured water the other day which he appears to be able to take orally, and keep it down. He is in bed all the time, except when he has to leave the house for treatment, so im not sure if he will want to leave the house if he doesnt have to; although I like the idea of taking him on a short walk...maybe when he is able to move a little more easily. We have the additional problem that he cant walk far anyway, even before treatment, as he has bad arthritis in his hip.
I am visiting every weekend, and some weekdays at the moment, to be there for mum and, like you say, get her out of the house for short spells. Im going to contact Macmillan to see if they can send nurses out to look after him for a few hours while I take mum out for longer spells.
I suppose that for now, thats all any of us can do. When im at home, and dad is in his room, we check on him regularly but im never sure if i should stay in the room and chat at him, about trivial, everyday things, to distract him, or if he would rather he was left alone. I guess everyone is different...
I understand that the few weeks after treatment finishes are the worst, so we are preparing ourselves for that. Ultimately though, the hardes thing at the moment is not even knowing if the treatment is working. Docs said they will wait a few months after treatment ends to ascertain whether he is cancer-free or not...which seems like a lifetime away.
by Ladylacy on Mon Mar 12, 2012 03:17 PM
Be sure you use in Ensure Plus because there are more calories and protein than in regular Ensure. My husband had a feeding tube from August 2010 until May 2011 and we were able to get the nutrition feedings thru Medicare with a co-pay. Then once he started to be able to swallow again, after surgery, we just bought Ensure Plus and he still supplements his meals with this. We bought the store brand since it was cheaper. Walmart's brand is cheaper too.
Radiation, we were told on head and neck patients is the worse and we found out that was right. My husband's throat was closed off due to the radiation and when he had a laryngectomy they had to reconstruct his throat.
Your dad needs to keep his spirits up and your visits will be very beneficial to him. Talk to him about anything that will boost his spirits. Our sons don't live near us but did call and talk to their dad until he wasn't able to talk after a trach and now he can only talk with a device. My husband was 73 when cancer was first diagnosed and we were worried about the effects on his spirit but he kept busy as much as possible during treatment and then as soon after surgery as possible. He underwent 35 radiation treatments and 3 chemo treatments before surgery. He is doing good now. Radiation takes a lot out of a person but it does get better.
Be sure to help your mother because as caregivers it is hard on us too. Maybe your father is depressed and needs some medication. This is not unusual we were told and maybe your mother should talk to his doctors about this. Does your dad have a walker? This would be a great help to him when walking because it will help support him.
Best wishes for your dad and the rest of the family. Sharon
by KentGirl1 on Mon Mar 12, 2012 04:05 PM
Thanks for your advice re: the drinks. I think Dad is on the highest calories Ensure, so that's good. Thank God he had the feeding tube put in before treatment started, as he cant eat normally anymore. Im based in the UK so luckily we get all that for free on the NHS.
My Dad has had exactly the same number of radiation and chemo sessions as your husband it sounds like. He cant talk above a hoarse whisper but hs throat hasnt closed up completely so hopefully that wont happen. Im glad to hear your husband is doing well now. It sounds like keeping busy is the key; he does force himself to get out of bed when he can, even if its just moving to the armchair in the lounge. After radiation today, he went to the pub with my mum and sipped water, reading the newspaper. He could only last about an hour before he had to go home and lay down, but that kind of thing should be encouraged, would you say?
Dad doesnt have a walker...im not sure he would ever consider using one; he is so so proud! It sounds like a good idea though. Thank you.
by rogerally on Tue Aug 21, 2012 03:23 AM
My heart goes out to you. I am a stage IV throat cancer patient inb week 5 of rad. I had surgery to remove tonsil and 2 lymph nodes and also am receving chemo. MY first thoght is regardin your desire to spend time with him and what is best. That is very thoughful of you. The treamkent is so debilitating than at some point, stimulus of any kind, even listening, is exhausting. You asked how best to suit his needs and is being with him helpful. Yes and no. Being there is helpful. Being a source of stimuli not so much. If you can, you could read to him in a soft voice, just above a whisper and very slowly. Fast speech rates are hard to comprehend. If you find something he appreciates, the Bible, poetry, sports, whatever, and can modulate your voice then yes, he will appreciate it. Otherwise it makes hum feel worse. Chnaces are he loves you too much to tell you this. 15 minutes is about the maximum time. His desire to sleep is natural and is hs bodies best defense against the poison in the chemo.
To give yu and idea of how debilitating this is...I chose to discontinue treatment today. Rad and Chemo push me close to feeling like I'm dying and the lack of saliva means you wake up during the night with your tongue feeling like it is a rock. It gets so dry that is won't absorb moisture. The treatment presumes that taste and saliva are trades offs for life. However, food must taste somewhat palatable or swallowing trigger tends not fire as if subliminally you're niot supposed to eat this. So, I think the medical community tries to do thier best. But quality of live is important too.
They wated me to have 3 chemo treatments over 35 days of radiation. I have had two chemo's over 23 rads. I am at the tipping point with lesions inside my mouth and all around my neck, front and back. The surguical site receives the most and it is turning purplish. If I continue on past this point, I will surely need the tube and risk loosing my swallowing ability. I have wieghed all factors and am chooing to pray that God will finish the healing process. I hope I'm making the right decision. I will pray hard.
One last thing, buttermilk tastes ok. On about everything else, I can only force down a bite or two.
by CarolynF on Tue Aug 21, 2012 04:02 AM
Almost everything you've said about your Dads treatment is normal. My advice would be to encourage your Dad to be up or at least sitting in a recliner and keeping up with his family~~`In November 2011, I had devinci robotic surgery to remove my epiglottis, that is the small flap of skin that closes when one takes a bite to keep food from entering the windpipe and lungs...I had lymph nodes removed also, but was very blessed they came back clean. Chemo and/or radiation was not needed. never-the-less, I had to relearn how to swallow, and how to speak above a whisper. I had a feeding tube for 3 weeks only...almost 10 months out and I still am on a soft food diet and may be forever..I can deal with that there's many items I can eat and swallow, I took months of speech therpy which taught me to swallow a new way and to help my voice come back, and it did, my surgeon is even amazed at how strong my voice is..tho, if I overdo and talk too long at a time, it sometimes weakens.
I get the impression that your Dad is depressed, I was too and had a lot of guilt because I was a heavy smoker and felt I'd brought this on myself and put my family thru hell because of it. I now take a 5 milgram anti-depressant and feel so much better...my family, husband, son, daughter and their families have been my rock on which to rebuild my new normal life.
I lost 50 pounds but have now put 20 back on, I feel great, all scopes have showed NED ( no evidence of disease)...please encourage your Dad to ask about speech therepy and to swallow all the time...he will start feeling better and there is a new normal waiting for him...I am 66 and feel better than I have for a long time
Best wishes to all of you
by Sdurnell on Sun Sep 02, 2012 11:00 PM
Be there for your parents. When I was at your dad's stage, I couldn't read or watch TV, but I did enjoy my husband reading to me. I can't possibly imagine your dad not being comforted by your being there.
Imagine that he were in the hospital instead of at home. Surely you'd go visit him, maybe with a book or magazine to read if he dropped off for a time. It's the same now. Maybe you could look for funny stories to read or something out of the newspaper. A joke book? Talk to him about his interests, hobbies, friends, or family.
My support group is what got me through the days. People visited, called, sent cards, and emailed. A short walk outside or just sitting in the sun for a little while can be a wonderful thing, so you might consider doing that with him now or when he feels up to it.
I looked terrible during treatment--I lost weight, had a scar and burns, and no teeth. I looked bad, but no one acted like it made a bit of difference. It helped me to interact with others, and I liked talking about something else besides me and my illness.
If you feel he is really depressed, you might want to bring it up with your mom, who I assume is going with him to his appointments. Many of us have mental health problems during and after treatment, and it's crucial to healing that these be addressed.
Keep telling yourself that this cancer is very curable--not just treatable. Your dad has every expectation to get through this and recover with a satisfactory quality of life. I am 18 months out of treatment, and can honestly say my life is good. He does need your support in whatever way you can manage right now--don't let your concern about his future stand in the way of supporting him now. He probably does not want to hear your worries, so I would not bring them up with him unless he expressly asks you to.
Be there for your mom, as she no doubt needs someone to listen to her part in all this. Things can be terribly hard on the principal caregiver. And find someone, not your parents, with whom you can discuss your own worries about him openly. You sound so torn, and need someone to counsel and comfort you as well.
Best of luck to you.
by KentGirl1 on Mon Sep 03, 2012 09:29 AM
A big thank you to everyone that has replied to my original post.
Its many months down the line now, and Dad is well on his way to recovery. He is now able to eat a lot of normal foods, get out and about on his own, drive the car, and generally live a normal life. His 6 weekly check-ups are showing no sign of recurrence and in general he feels good. He still has his tube in as he hasn’t put on enough weight yet, but hopefully that wont be long now. His voice is still a quiet croak, and we’ve been told that his voice wont ever be the same again (his tumour was next to his voice box) but he’s doing the exercises…and it seems a small price to pay for him having a life. A ‘normal’ life.
Best wishes to all who have gone through this or who are going through it. It’s been tough and we aren’t out of the woods yet, but having this forum to read other people’s experiences and advice really did help.
by CarolynF on Mon Sep 03, 2012 12:48 PM
so happy to read that your Dad is so much better~~~ is he going to speech therepy, my vocal cords were bowed out after surgery, my surgeon is amazed at how strong my voice is back ( Hubby too teehee) have Dad hum, mmmmmmm then say these sounds , do as many times a day as you can...I still do them in the car, shower, at the computer, wherever
Blessings to you all
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.