Need advice as a carer of bowel cancer husband

[tsey]

hi I am new to start a blog. My husband was diagnosed with advanced aggressive bowel cancer Jan10. The Pain Management reckon he has this cancer for 20 years (it is 120cm long), surgery is not an option. He has 2 lots of chemo on 5fu & folinic acid in Feb but the cancer maker gone up higher. The drug didn't work for him. They then changed to Avastin last Wed and the family all hope for the best. Meanwhile, I have quit work (retire) to be a home-carer. The most difficult issue for me is to see him not eating at all. On a good day, he might have a Mac-large-milk shake, at best with a cheese burger. Worst days, he would have NOTHING at all. He said water taste metal, so he didn't even try. I will leave a ginger-bear drink with him now, he said it is ok. He lost 15-20kg in a month. I offer tea/snacks. But he would feel I am 'mothering' him and he didn't like that. Also, I think it is b'cos of the chemo-drug, his thinking is not as sharp as he used to be. He will have a general idea of what's happening but not specific. (eg he will not remember the date or time of his doctor appointment). I am stress out as to HOW to help him. I also offer him to drink ENSURE milk product. He didn't like the taste at all. Anything, my husband didn't like, he will not try again. I know in his heart, he is trying, but at times it is just v.v. hard for me. As I just quit my full time job, I only found it difficult for me 'home-bound' as well. I suddenly become no contact to the outside world. I keep up my usual walks during the day, try to keep myself busy mentally by reading, tapestry, clean the house. What's more? How do other survive during this process? Pls suggest

[samex]

Hi Tsey, My experience seems to be quite different from your husband's.He seems to be reacting quite severely to the chemo and this needs to be discussed with your doctor I think. It must be very difficult for you to see this, so as many of us have suggested before, try the Cancer Council Helpline. Personlly, I didn't have Avistan and had to have large amounts of steroids so my problem was putting weight on rather than losing it.It may help also to talk to the dietician at the hospital where your husband has treatment as they may have some advice. good luck with everything, Samex

[#3]

Hi Tsey.. My husband has stomach cancer.. and only diagnosed in late nov last year. Has had it for some time too as it is quite aggressive and we were given months... not sure how long we have got to go... He doesn't eat much.. no appetite, has had 4 rounds of chemo but thankfully not too nauseous. We've tried all the drinks possible... but he is getting to the stage where he doesn't want to eat or drink alot no matter how good it tastes... It's a mental and emotional thing. He's on a new drug that is supposed to increase his appetite and is an anti depressant but not really working.. Zonks him out which they said. I work 2 days, and have 2 young kids, so I understand the carer bit... it is a huge responsibility... and you just have to do your best... Hang in there... wifeyb

[#4]

Hi tsey, My late husband had stomach,pancreatic & bone cancer. I saw my husband also lose about 13kgs in a three week period just before he was diagnosed. Once he started Chemotherapy every three weeks his taste changed and food become a chore rather than something we both enjoyed. I was always stressing about what food to give him and I had the times when I would cook something and he was just not interested in eating whatever was served. It was depressing and frustrating but at the same time I had to try and understand. The last few months he wasn't eating very much and couldn't tolerate alot of food. We tried the ensure products and all the other 'unhealthy' foods & supplements to try and get him to put on weight as the weight was just falling off him. But he never seemed to be interested in them. I was the the primary carer for my husband, I also left work to look after him full time at home. I also had the help from family which was a blessing. But it is so important that you try and keep yourself preoccupied with things you enjoy. The one thing that I think is very important as a carer is to look after yourself. Take time out for yourself. It will definently be a very very rocky road ahead but just remember that there are lots of people on this site ready to sit and lend an ear whenever you need. take care, doofette

[tsey]

Thanks guys, I didn't check this blog for few weeks. I have typed heaps of lines now, but they are all LOST! Gee, I am hopeless in blog writing. (where they in the Pacific Ocean or the Indian Ocean now.... hummm?) I am so happy that someone replies. You all are my angels. Yes, I have registered with the Cancer Hotline, hopefully, I shall be lined up with one of the conference call meeting to share our hopes and dramas as a carer. My boss offers me to take 6-months from work, so I took it. Gee, that is hard of 'not-working'! The 1st week is fun. The 2nd week is terrible. I have seen a counsellor last week (just to release my frustration). Went to the city, stayed in a hotel for an overnight, just to sort myself out, wrote down all my thoughts. The outcome is: - I have to changed. I have to learn to change. I am only 50% a carer. 50% I have to be ME ME ME! - I need to find something that can stimulate my mind (even though I stayed home most of the time) - I have joined the knitters club (which give me some purpose of life and go out to meet other people, be socialise) - I have called one organisation and see if I can do some volunteer work (hard to say, as I need to work around my husband schedule in seeing his oncology and chemo session), will see. We went to see the oncology today. Good news is the Cancer Marker has gone down from 2,400 --> 1,000, so my husband cancer responded to Avastin. Surgery still not considered as it is Stage 4 (spread to other organs). Yes, he has told himself to gain weight from 60kg(now) to as much as he can. These few days, he is a good boy, he can finish 1L of fluid. He has to keep trying to push food into his stomach. This is hard, really hard.

[tsey]

I am not alone. I am so happy tonight. We all have to live today as if tomorrow never comes!

[tsey]

When things go wrong as they sometimes will, When the road you're trudging seems all uphill, When the funds are low, and the debts are high, And you want to smile, but you have to sigh, When care is pressing you down a bit, Rest if you must, but DON'T YOU QUIT! Success is failure turned inside out, the silver tint of the clouds of doubt. And you never can tell how close you are, It may be near when it seems afar, So stock to the fight when you're hardest hit - It's when things go wrong that you MUSTN't QUIT!

[tsey]

My husband's cancer marker gone down from 2,400 t0 1,000. So, we are all v. happy about it. I have put a measuring jug (1L) one in front of the TV (where my husband can see it). Whenever he drinks anything, I will pour the same amount of water into the jug. He will see how much he has to drink further in order to reach the 1L target (least). This method works very well. Now, the challenge is to reach the 2,000 CAL every day. He probably eats around 1,000 CAL/day. It is hard as his taste bud changes daily and he just didn't feel like eating at all. He is trying definitely, but v. hard for him as well. I only learn all these through this process of taking care of my husband. A SALUTE to all carers and all family members. We all work very hard to make things happen and we all need to SMILE as well.

[tsey]

Rainbow Blog by tsey I learnt through the process that: a) as a carer, we learnt to be more patient, offer the love and care on our soft side. b) not one text book explains my unique situation (some lines apply but not actually fit into one case) c) not one text book explains the unique situation of my husband. They touch the topic but every cancer patient has different level, different stage, different drug taken, different treatment. Every patient has different feeling on their cancers, their body reflects to the treatment. d) my husband did not like vegetable juice, coconut milk, avacado, apple sauce and all the goodies that the book said they are good for cancer patient. So, what can we do as a carer? I do not feel hurt about him not eating. I feel helpless that I can't do anything to help. e) we just have to follow the flow. There is no one answer to the question that we keep asking every day: what's next? Is he going to get better? when? will he die? The process is long and no one knows how long will this process last? Whenever I talk to people what I am going through, they are said "woh" "there is a lot to take in!" f) need to find myself a lot of aspiration words to give encouragement to me g) we need to be super-organised, juggle along our schedule along with all clinicial/hospital visits + we want to keep on doing the things we want to do h) when my husband go out with me, we hold hands (we are husband and wife) not patient and a carer. I have made this change. It makes a lot of difference. i) when there are issues that are bothering me, I (imaginally) grap it with my hand, throw it away from my heart position to the air. (I want to throw them away, I don't want them to bother me anymore)

[#10]

You've said it all!!! You seem very wise.. I can relate to alot of it.. my husband doesn;t fit the mould either and whatever they suggest we tend to do the opposite!! Keep going, you are a strong, capable woman Tsey Tonya xo