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My soul mate.

Started by April01

08 Oct 2015, 11:56 PM

I have been on here for a couple of months now and read every post but did not write anything myself. All of you have helped me in many ways and I want to thank you. My husband has colorectal cancer that spread to his lungs, brain, bones and abdominal area. In December of 2012 he went to the doctor and said he has blood on the toilet paper. His father died colon cancer and a sister has polyps. The doctor sent a referral to the with the added information about family members. Somewhere along the way that referral got missed. It took my husband seven months to get in to have the scope done. The doctor removed the scope when the nurse saw the tumour. The doctor had to recheck to find it. That day he told us that he wanted to remove the cancer and then do treatment but the cancer board would not allow him to do it that way so he was referring us to another surgeon. We waited four weeks for that appointment and that surgeon said that he was going on vacation and would be scheduling my husbands surgery for the week he came back. So we ended up waiting another seven weeks between finding it to having the surgery. The new surgeon did exactly what the old one said he could not do. My husband had some colon, all rectum and anus removed. he awhile to heal. Twelve weeks later we saw the radiologist and oncologist who both said that there was only a six percent chance of the cancer coming back. Neither one of them wanted my husband to have treatment as they felt there was need of it. So we went along with the specialist.

My husband went for all follow up appointments and they we all supposed to be good. He had a scope done in October. In November of 2014 we were told that everything looked great and do not worry, we would see the surgeon again in six months. December my husband started acting different, forgetting things as well. He is a very intelligent man and I thought this was weird. He is only 54 years old. Over Christmas it got worse so on the 27th I took him to emerge. They did a CAT scan and found brain tumours. On the 31st he had an MRI and they found four brain tumours and five lung tumours. When a biopsy was done it was colorectal cancer. He had ten radiation treatments his brain and one stereotactic on one brain tumour. Three months went by when we found out that those tumours went half size. Ok they said, we have more time now. Chemo started for the lungs and after five treatments they were almost gone. In that report we were told that the bone cancer had gotten out of control. We looked at the oncolosist and said what bone cancer. For some reason she thought we knew because she did not. Well, no one told us about the bone cancer. That is when chemo stopped.
He had to have radiation on his spine as three tumours were getting ready to break through the spine. That radioogist five treatments. During treatment my husband started come ting and having diarrhea very badly. We told the doctor who said, we had to hit the stomach because of where the tumours were located. That was the last time my husband a meal. July 29th. Since then he has gotten weaker and sicker and is now on palliative care. Since July 29th he has had probably had twenty ensure and six small yoghurts. I keep telling every doctor that he does not eat, they keep giving him medication for vomiting. Nothing works. My husband says that he feels like his stomach is full.
I am angry and I will deal with that but watching my husband starving to death is one of the worst things ever. Every day he gets weaker and sicker and I am supposed to be thankful for having the medical we have. Our GP has been awesome and has tried everything he can think of but the specialist is where my husband was let down. So sorry to go on and on but this has been going on for too long and I feel I can finally say something. Thanks for listening.

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Reply by April01

09 Oct 2015, 12:02 AM

So sorry about the spelling mistakes..

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Reply by KathCull_admin

09 Oct 2015, 4:51 AM

Dear April01,

Thank you for joining the community on Virtual Hospice. It's not always easy to post to the forum for the first time. It’s good to know that you have found support from reading the posts even before posting. You and your family have had such a difficult experience – I wish it were not so.

Eating and drinking are such an important part of our lives – both physically but also socially and emotionally. I would be interested to know if you find this article by Dr. Mike Harlos Lack of Appetite and Loss of Weight helpful.

I know that you will find others in this community who understand and will support you. It can be so important to talk about what has happened and what we feel – spelling mistakes are not even an issue.

Do you have friends and family who are able to support you.

Take care April01

Katherine

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Reply by April01

09 Oct 2015, 7:29 AM

Thank you Katherine. That article did help me. I know at end stage food is not so important but this has been going on for too long that I actually feel it is going to take him out sooner than he has to go. I am just angry right now and some day I will deal with that. Right now I spend all my time and energy taking care of him. He has been doing what the doctors call pain walking. It is every night and he only sleeps about two hours in bed when it starts. It can go on for about four to five hours Which means I get no sleep because I am up watching him. I do have help but I do not ask anyone to come stay with him at night. I am going to have to as I am getting too tired. We are going away for the weekend with family to the lake so I have already asked for help. The doctor thinks this problem may be from the brain tumours well as the pain. This all has been hard as all of you know. Thanks for helping and listening.....

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Reply by Marymary

09 Oct 2015, 7:29 PM

Hi April 1 (funny that is my birthday seriously)

I so understand your frustration and utter stress/worry about the food thing - I do. At least the ensures are something....have you or him considered a feeding tube - could take away more stress from you for sure. If that is an option I would highly recommend it - I would.

I felt the same way during treatments and you can NOT force some one to eat nor take in anything if they choose NOT to or they literally just can't....I so can relate to your situation. My son's dad has Stage 4B throat cancer finished treatment back on July 3rd/15 and it is up and down, now he is eating BUT is constantly losing weight? No rhyme nor reason for that.....but wait and see.

The wait and see thing is beyond frustrating and so very stressful one day good next day no, the up and down can definitely take its toll.

April 1 - I can not say this enough - YOU must take time for yourself - YOU have too for your own well being I took 6 days away and wow what it did for me was absolutely astounding., just me all by myself. Gives you a much needed REST, a new perspective all the way around and guess what you are NOT the do all end all of things - sorry to be blunt and in your face but it is so true. You are not doing any good by not getting any sleep and the stress and worry put on yourself is going to take its toll - you will be more intolerant of the situation as well as more stressed and more mental anxiety - believe you me I know seriously. I would take 1 day every 3 weeks to go do what I wanted - promising myself no thoughts of him nor my child (18)- it was me time and that was that. You have to love yourself too moreso than him so you can be there but be there 100% in all ways when you are there you will be rested, rejuventated, renewed.

I am asking you to take time for you ok please!!! You can not help him or really truly be there for him 100% if you are not going to take care of yourself too - ok. He will be fine - he will be take care of and he will be ok with you not being there - honestly. You NEED to take time for you - do your damdest to NOT worry and stress about him while you are away - meditate / relax / go into nature - consume yourself with something you love to do., outside of your normal residence - he will be ok - he will. It's hard at first but love yourself enough to do this ok - it will make a world of difference in your body soul mind and spirit - seriously.

As for the food situation - there is another thing you have to release - he will get what his body needs ok. Depending on your age - as mine - the way we grew up has a lot to do with how we perceive or want things to be - eat everything on your plate, eat and you will be ok., eat eat eat. It is our own mentality which limits us - hope that makes sense.

Take care of yourself ok - thinking of you and hope your state of mind gets to a better place for when it does things do not AFFECT as much as they do.

Hope - faith - trust and belief - go such a long way - I be sending positive thoughts and prayers to you and yours April 1.

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Reply by April01

12 Oct 2015, 7:52 AM

Mary, thank you so much. We just got back from three days away with my entire family. Every year we rent a lodge for Thanksgiving and my parents, siblings and all of their families go to be together. We had such a great time. My sister and mother both took the night shifts and the rest of the family took care of my husband during the day. I SLEPT a lot. I feel so much better right now. You are right, I need time for me to recharge. My poor husband is getting sicker and I know things will get worse. I have excepted that and as far as the food goes, there is nothing I can do about it. The doctors changed his pain medications but that is not working either. We just want what is best for our sick ones and right now there is nothing I can do about it. I can only give him his medications and hope for the best. Cancer really changes us, even those of us that do not have it.
How are you doing these days? Did you have a good weekend? Thanks so much for your reply, at least I know I am not alone.... Hugs

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Reply by Razz

12 Oct 2015, 1:02 PM

(((April01))) <- these are hugs.

I am so sorry for what you and your husband are going through right now. I don't thik there is anything worse in life than that feeling of knowing that there is nothing we can do ... that it is all beyond our control. It's such an awful situation to be in and we can make ourselves crazy thinking there MUST BE SOMETHING I can do .... when in fact there isn't.

I am glad to hear that you had a nice weekend with family and that you finally got some rest. As Mary pointed out it's such an important thing and if we want to be of any help to those we love we really do need to take care of ourselves first. It's very much like the "air mask" analogy that you see in the drill on an airplane. Should the air masks be deployed you need to put your mask on first before you help those traveling with you. When you think about it it's much the same thing ... if you run out of air you won't be of any help to your loved one beside you.

Society (and our culture) has placed such an importance on eating that there is a panic that sets in when we see someone we love NOT eating. It seems to be something we can't comprehend and I know that when my Mother stopped eating I just couldn't see how she could last day in and day out with little or no food. However I also knew that it was the fluids that we so important and eventually Mom needed to go on IV to keep that going. It broke my heart to see such a independent person disappear before my eyes but I also knew that she was ultimately the one in control of that.

I'm glad that you have found comfort on this site and know that there are many who have walked the same journey you are on now. It helps to know that you are not alone.

Razz

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Reply by Razz

12 Oct 2015, 1:27 PM

ps - I meant to add that you may want to consider some option NOW to help you deal with the anger you're feeling. A support group? A faith leader? Someone who is not directly or emotionally invested in the situation but someone who is familiar with this type of thing. I know you just want to bury it for now and deal with it later but actually you'll find yourself better able to cope and relate to your husband if you can express some of it safely now. In fact if you want to vent it out here it's a very safe place to do so. We "get it" and not a single person here would judge you but instead offer you a hand of friendship and understanding. It is said that "anger turned inward results in depression". And that is one of the quickest ways to loose your strength. I guess it all goes back to taking care of yourself so that you can be "present" and take care of your loved one. Just something you may want to think about.

be good to you - Razz

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Reply by Marymary

13 Oct 2015, 12:14 AM

Hi April 1 - I am so very glad you got the necessary rest for your body, mind soul/spirit. That you were surrounded by family and got the support you also need.

With it being thanksgiving - being so grateful you do have that support and got the rest you needed, you know there are some people who do not have any one to help out or the support - those I so do pray for and for some they will NOT allow anyone to help out or get support due to control issues and no one can do a better job than themselves, its their loved one and only they can and know how to take care of their loved ones. To each his own but for you - you are one lucky person April 01.

I had an ok weekend. We go to the radiologist tommorow so hoping we get more definite info other than "inconclusive" whatever that flippin means.

I am thankful and grateful for this site also, where others can and do relate to OUR situations., the support is more beneficial than I think more than some of realize. I am thankful.

Sending you positive thoughts your way April 01 and I also want to say I personally can not imagine what you are going through with it being your soul mate/the love of your life, probably the most difficult thing you have ever had to do, and knowing what you know and what is and is not in your control, difficult situation. You are really something so very special, take care of your precious self and continue to do so ok.

So sending you lots of positive/loving energy your way.

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Reply by April01

14 Oct 2015, 2:40 AM

Razz and Mary, thank you both. After the weekend I make sure I take one hour a day and go for a walk. I live by the ocean and I just walk the beach, it is my favourite place to be. I get my husband to lay down for a rest and I tell him where I am going. He smiles says enjoy your walk. That makes me feel better about going. When I come back he is still sleeping and I do not feel so guilty. Thank you ladies.... Tonight was a tough one.. Eric asked me if I thought he was going to die soon. The only answer I could give him was that I did not know. I do know that he is getting more medication than he has been and that he has lost 60 pounds in 2 1/2 months so he is weaker. Tomorrow I will ask his doctor to talk to him, that is all I can do right now. His palliative care nurse came today and was so upset because he has lost 60 pounds and he is not eating. I was sorry at the time but I did laugh. I told her that I have been telling his doctors and all the nurses for two months and now she worried. I have finally come to terms with it and she has not. I do not mean to put anyone down but really.. Oh well. It was nice to get our dogs back today as they have been at the breeders since Thursday and we both missed them. The b is having money issues but would not charge us one penny, she says it is her way to help us. She really is a great lady. we so lucky because we do have awesome friends and family. I am so glad find this site as I can not really say what I want to my family. one would understand if I said to them that my prayers have changed. They have gone from, do not let Eric die to do not let him suffer. I feel guilty praying for that but I do know that I have to be real.
I hope you ladies had a great Thanksgiving... What is knew with you two. Mary, how did the appointment go today? I hope you got some answers... Night folks...
hugs
April

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