Apr surgery for mum tomorrow, need advice (cancer of rectum)

Steph19877
Steph19877 Member Posts: 20
edited June 2014 in Colorectal Cancer #1

My mum is 69 and she's has cancer of the rectum, which tomorrow she will have APR surgery to remove her rectum and have a bag For life. To say we are scared is an understatement, I'm worried about death after the op, infections and not healing quickly due to her age. Could anyone give me some peace of mind who's been through this surgery or knows anyone that has? Thank you very much, Steph

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Hi

    First, let me welcome you to this board.  You will find the folks here very supportive and willing to share information.  I am so very sorry that you find the need to be here, but you have landed in a caring place.

    I was 63 when I had the surgery you are describing, plus a bit more.  I have a perm colostomy.  That was 4 years ago.

    How your mom will do with the surgery depends alot on her overall general health.  Mine was very good before cancer diagnosis.

    What part of the world is your mom in?  We have members from all around the world.

    I was told to get plenty of protein after surgery to promote healing.

    I had someone with me for about 6 or 8 weeks to make sure that I got the rest I needed and ate.

    I found that sleeping in a reclining chair was easiest for me.  I am a restless sleeper and it helped to keep me still and not pull on the incision site.

    Recovery takes time, but with a good surgeon, good after care and support from famiy and friends, life can be good after this surgery.

    If you have specific questions, don't hesitate to ask.

    Wishing your mom best outcome from the surgery and an easy recovery.

    Marie who loves kitties

     

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    A loving daughter

    Proof of you being a loving daughter, that you're reaching out to find help, support and information. You have come to the right place. We're full of it (so to speak). 

    I am sorry about your mum. We all here know the fear those first weeks, and months are filled with, after such a diagnosis. Depending on the stage of the cancer II, III or IV (with allot of As and Bs in there) will be a detemining fact in her outlook. 

    Saying that, there are plenty here on the forum that are living proof that cancer is NOT a death sentence. It used to be, for sure, but great strides have been made in treatments, and the outlook is so much better. 

    I know your mum seems old to you, but really she is still fairly young. If she is a healthy person, that and her age are all positives. 

    You will find allot of folks here on the forum who are living with 'The Bag', and they can offer tons of advice. Be patient, as sometimes it can take a few days for answers, as people pop in and out, and not visit every day. 

    Take a super deep breath and face this struggle with your mum. You will find that once her surgery is over and her medical team set up a plan of action, that allot of the stress will go away. The whole 'not knowing' thing is terribly stressful. 

    We're here for you. Keep on visiting and you'll get the informatin and support for yourself and your mum, that you are looking for. 

    Blessings!

    SUE

  • Helen321
    Helen321 Member Posts: 1,459 Member
    Hi Steph, I had the surgery

    Hi Steph, I had the surgery although I am 44. If your mom is in good general health she should be okay. I did not have the best hospital experience so be your mother's voice and don't hesitate to disagree.  It's a bit of a whammie on the body. A year out and I still don't have the strength to lift or run. Just doing light exercise.  I don't know anyone I've talked to who didn't go through depression after so be open and sensitive to discussing her feelings and also when she's able, get her out of the house even if just in small amounts. Getting out helped me realize my world had not ended, just changed.  If your insurance covers it don't stick with the style of bag the hospital gives you. Get samples and try different options. I use a two piece system and have a great quality of life.  It's peel, clean, restick and go. Go with the flow, be vocal, make sure she gets proper nutrition (people can be sensitive to certain items. I can no longer have citrus or dairy) and she should be a-okay.  PS 69 is not at all old. 

  • Steph19877
    Steph19877 Member Posts: 20
    Helen321 said:

    Hi Steph, I had the surgery

    Hi Steph, I had the surgery although I am 44. If your mom is in good general health she should be okay. I did not have the best hospital experience so be your mother's voice and don't hesitate to disagree.  It's a bit of a whammie on the body. A year out and I still don't have the strength to lift or run. Just doing light exercise.  I don't know anyone I've talked to who didn't go through depression after so be open and sensitive to discussing her feelings and also when she's able, get her out of the house even if just in small amounts. Getting out helped me realize my world had not ended, just changed.  If your insurance covers it don't stick with the style of bag the hospital gives you. Get samples and try different options. I use a two piece system and have a great quality of life.  It's peel, clean, restick and go. Go with the flow, be vocal, make sure she gets proper nutrition (people can be sensitive to certain items. I can no longer have citrus or dairy) and she should be a-okay.  PS 69 is not at all old. 

    Hi everyone thanks so much

    Hi everyone thanks so much for your responses and peace of mind. We are in the UK in Bristol and my mum is currently having the APR operation as we speak. myself and my dad are sat here waiting for the call to say it's over. I feel physically sick with worry. The thought that my mum will now go through months of hell after this is heartbreaking. She is 69 yes but her general health is very good so we are praying for the best. Thank you for your comments and I hope you are all doing well in your recoveries. I will update later to say how she got on. Thank you 

    just one question, I know that infections are very likely after this op... Are they easily treated with antibiotics?

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    Hi everyone thanks so much

    Hi everyone thanks so much for your responses and peace of mind. We are in the UK in Bristol and my mum is currently having the APR operation as we speak. myself and my dad are sat here waiting for the call to say it's over. I feel physically sick with worry. The thought that my mum will now go through months of hell after this is heartbreaking. She is 69 yes but her general health is very good so we are praying for the best. Thank you for your comments and I hope you are all doing well in your recoveries. I will update later to say how she got on. Thank you 

    just one question, I know that infections are very likely after this op... Are they easily treated with antibiotics?

    Comfort

    The chances that your mums surgery will go well, are the best ever. The chances of an infection after surgery are always there, but hopefully will not come to pass. When you are with your mum after surgery and in the hospital, make sure that everyone who comes into the room, uses the hand gel. I know England is having tons of problems in hospitals. 

    The chances of your mum going though 'months of hell' are slim too. If she is healthy, and she has the love and supoort of those around her (you and your dad, plus others), then it does not have to be hell. 

    And you and your dad, you have to take care of yourselves too, because you need to be there for her. Its normal to worry, but over-worrying causes more stress and more problems. A positive attitude goes a VERY VERY VERY long way in the healing of your mum. Honestly, I can't stress that enough. Talking as a Stage IV patient, I do NOT want negative people around me. I do not want people to treat me like I am dying. I want positive, happy people around me, and if they aren't positive and happy, then they can stay away. 

    Happy is healing. 

    If you really are having problems letting go of the worry, try a little meditation, it helped me when I was first diagnosed. 

    Thank you for coming back. Your mum will heal and beat this beast, with a loving daughter and husband by her side (and other family & friends). 

    Keep visiting here, we can help you along the way. 

    Blessings!

  • Steph19877
    Steph19877 Member Posts: 20
    Trubrit said:

    Comfort

    The chances that your mums surgery will go well, are the best ever. The chances of an infection after surgery are always there, but hopefully will not come to pass. When you are with your mum after surgery and in the hospital, make sure that everyone who comes into the room, uses the hand gel. I know England is having tons of problems in hospitals. 

    The chances of your mum going though 'months of hell' are slim too. If she is healthy, and she has the love and supoort of those around her (you and your dad, plus others), then it does not have to be hell. 

    And you and your dad, you have to take care of yourselves too, because you need to be there for her. Its normal to worry, but over-worrying causes more stress and more problems. A positive attitude goes a VERY VERY VERY long way in the healing of your mum. Honestly, I can't stress that enough. Talking as a Stage IV patient, I do NOT want negative people around me. I do not want people to treat me like I am dying. I want positive, happy people around me, and if they aren't positive and happy, then they can stay away. 

    Happy is healing. 

    If you really are having problems letting go of the worry, try a little meditation, it helped me when I was first diagnosed. 

    Thank you for coming back. Your mum will heal and beat this beast, with a loving daughter and husband by her side (and other family & friends). 

    Keep visiting here, we can help you along the way. 

    Blessings!

    Thanks so much that has

    Thanks so much that has really helped. they are expecting her in recovery any min they said so we are going to go up to the hospital now. I will make sure we sanitise before we go in. Thank you will let you know how we all get on. I'm thinking positive now 

  • Steph19877
    Steph19877 Member Posts: 20

    Thanks so much that has

    Thanks so much that has really helped. they are expecting her in recovery any min they said so we are going to go up to the hospital now. I will make sure we sanitise before we go in. Thank you will let you know how we all get on. I'm thinking positive now 

    Update on my mums op and

    Update on my mums op and desperately seeking advice... Op was successful weds it's now Friday and she has developed severe anxiety to the point i had to sit by her bed all night holding as hand as she said she was slipping into death! She says her head feled fuzzy and red are blurry but she came off the high led drugs nearly 24hours ago so they should have left her system. She is only on paracetamol And codeine now. She won't be on her own, if we leave the room she has a panic attack and her heart rate goes up and she thinks she's is going to die. Please can someone advise if this is normal it's tearing my whole world apart and my family's. Thanks 

  • Steph19877
    Steph19877 Member Posts: 20

    Update on my mums op and

    Update on my mums op and desperately seeking advice... Op was successful weds it's now Friday and she has developed severe anxiety to the point i had to sit by her bed all night holding as hand as she said she was slipping into death! She says her head feled fuzzy and red are blurry but she came off the high led drugs nearly 24hours ago so they should have left her system. She is only on paracetamol And codeine now. She won't be on her own, if we leave the room she has a panic attack and her heart rate goes up and she thinks she's is going to die. Please can someone advise if this is normal it's tearing my whole world apart and my family's. Thanks 

    Eyes are blurry I mean sorry

    Eyes are blurry I mean sorry spelling mistake and I also mean high med drugs 

  • danker
    danker Member Posts: 1,276 Member
    age

    I had a resection with a iliostomy when I was 77, so I don't thing age is cause for worry.  Knew a lady who had a permanent bag for past 8 years and lived a normal life.  Good luck to you both.

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    Update on my mums op and

    Update on my mums op and desperately seeking advice... Op was successful weds it's now Friday and she has developed severe anxiety to the point i had to sit by her bed all night holding as hand as she said she was slipping into death! She says her head feled fuzzy and red are blurry but she came off the high led drugs nearly 24hours ago so they should have left her system. She is only on paracetamol And codeine now. She won't be on her own, if we leave the room she has a panic attack and her heart rate goes up and she thinks she's is going to die. Please can someone advise if this is normal it's tearing my whole world apart and my family's. Thanks 

    Don't worry about spellign mistakes

    Most of us here have chemo brain, and spelling mistakes are par for the course. 

    I am sorry that your mum is having such a difficult time. Have you talked to her Doctor about it? That would be my suggestion. He may be able to prescribe some kind of anti depressant, or something that will keep her chilled 

    You must make sure you take care of yourself too. If not, you'll end up sick and of no help. 

    The only other thing I can suggest, which may or may not work for you mother, is having some kind of white noise, or quiet music for her to go to sleep to. How long will she be in the hospital? I don't know if she can have music there. I had music on my ipad, and I was also on my own as the other bed was vacant, so I played soothing music (waves, birds, that kind of thing) to help me sleep. 

    When she comes home, she may want to try a meditation or visualization CD. Thats another thing that helped me get to sleep. The one I used was called Meditation to help you with Chemotherapy by Belleruth Naparestek. Its on of the Health Journey series. It worked a miracle with me, and I slept like a baby.

    These are just ideas, as each person has individual likes and dislikes. 

    Good luck, and keep us posted. 

     

  • Steph19877
    Steph19877 Member Posts: 20
    danker said:

    age

    I had a resection with a iliostomy when I was 77, so I don't thing age is cause for worry.  Knew a lady who had a permanent bag for past 8 years and lived a normal life.  Good luck to you both.

    Thank you for the info. And

    Thank you for the info. And trubrit I will look into that. The problem she has is the minute she feels like dropping off to sleep she wakes up all panicy and she said she is having visions of being out to sleep in theatre which is making her not able to sleep now. It's been 3 days not one wink of sleep and she's hulicinating now. Not sure what else I can do? She said she doesn't want any music in her ears? Did any1 else experience difficulty sleeping?

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member

    Update on my mums op and

    Update on my mums op and desperately seeking advice... Op was successful weds it's now Friday and she has developed severe anxiety to the point i had to sit by her bed all night holding as hand as she said she was slipping into death! She says her head feled fuzzy and red are blurry but she came off the high led drugs nearly 24hours ago so they should have left her system. She is only on paracetamol And codeine now. She won't be on her own, if we leave the room she has a panic attack and her heart rate goes up and she thinks she's is going to die. Please can someone advise if this is normal it's tearing my whole world apart and my family's. Thanks 

    What did the doctor's say?

    Has she ever had codine before?  She may be having a reaction to it, or she may just be feeling panicky over what she has been going through.

    Certainly the doctors can give her some anti-anxiety medication.  Follow-up with them.  Not sure about in UK, but here in the states one has to be a bit pushy sometimes to get the care the patient needs.

    There is no need for her to be so anxious.

    You also had asked about infections.  I had a urinary tract infection after surgery, but antibiotics cleared that right up.  More serious infections are most often casued when this surgery is done on an emergency basis and there was not time to do prep to empty the bowel.

    For the most part I would think that good monitoring of the surgical site and her temp should alert you to any infection, and antibiotics should take care of anything that comes up.

    Wishing her easy and speedy recovery.

    Marie who loves kitties

  • Steph19877
    Steph19877 Member Posts: 20

    Thank you for the info. And

    Thank you for the info. And trubrit I will look into that. The problem she has is the minute she feels like dropping off to sleep she wakes up all panicy and she said she is having visions of being out to sleep in theatre which is making her not able to sleep now. It's been 3 days not one wink of sleep and she's hulicinating now. Not sure what else I can do? She said she doesn't want any music in her ears? Did any1 else experience difficulty sleeping?

    Thanks Marie. They can give

    Thanks Marie. They can give her anti anxiety drugs buts she's reacted so badly to all the drugs they've given her so far that they are reluctant to give her anxiety drugs. She had definitely got something going on inside her head that had been the cause of going down for surgery that she can't seem to shake off. Maybe i will see if she can see a counciller tomorrow 

  • Steph19877
    Steph19877 Member Posts: 20

    Thanks Marie. They can give

    Thanks Marie. They can give her anti anxiety drugs buts she's reacted so badly to all the drugs they've given her so far that they are reluctant to give her anxiety drugs. She had definitely got something going on inside her head that had been the cause of going down for surgery that she can't seem to shake off. Maybe i will see if she can see a counciller tomorrow 

    update: mum had a good nights

    update: mum had a good nights sleep and is much better today :) very pleased so far so good. Thank you for your encouraging words 

  • Trubrit
    Trubrit Member Posts: 5,796 Member

    update: mum had a good nights

    update: mum had a good nights sleep and is much better today :) very pleased so far so good. Thank you for your encouraging words 

    Happy Dance Man

    I think this deserves one of my specials

    image

    I pray she will find her happy place, and be able to relax into the fight. I know, sounds weird, but sometimes it takes a fight just to come to terms with the disease, and then you have the energy to fight. 

    Thank you for your updates. We're always here for you (and mum). 

  • Steph19877
    Steph19877 Member Posts: 20
    Trubrit said:

    Happy Dance Man

    I think this deserves one of my specials

    image

    I pray she will find her happy place, and be able to relax into the fight. I know, sounds weird, but sometimes it takes a fight just to come to terms with the disease, and then you have the energy to fight. 

    Thank you for your updates. We're always here for you (and mum). 

    Thanks so much trubrit.

    Thanks so much trubrit. Positive thoughts for sure :) 

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    update: mum had a good nights

    update: mum had a good nights sleep and is much better today :) very pleased so far so good. Thank you for your encouraging words 

    Glad to hear your mum is doing better

    It's an unfortunate reality that many aspects of surgery can be hard on the brain...the anesthesia, the hospital environemnt, the pain meds, the physical trauma to the body (even tho *you* are unconscious, the body still reacts to what has been done to it).  In my own experience of having multiple surgeries, it can take days, or even longer, to recover mentally.

     Your mum may still have some issues once she gets home.  I had one especially difficult stay, with two days of being essentially psychotic due to a combination of anti-anxiety meds and opiates at overly high doses (I was petting cats that I thought were on my bed, and answering phones that weren't ringing...very weird).  It took me months for things to fully clear up from that experience.

    If your mother has anything similar after she gets out of the hospital, it's not really anything to worry about.  Just give her a sympathetic ear and she'll be fine!

  • LindaK.
    LindaK. Member Posts: 506 Member
    Infection

    My mother is 88 and has Alzheimers.  She has had some periods of paranoia, panic and fear.  This went on for several weeks in the fall.  When we finally got a hold of the Memory Clinic she goes to, they said this is common for people with dimentia when they have a UTI.  A few rounds of antibiotics and some changes in hygiene habits cleared most of that up.  It may have been a combination of the drugs and an infection, which hopefully has cleared up.  Most women end up with a UTI after being catheterized.  Hope she is doing better.

    Linda

  • Helen321
    Helen321 Member Posts: 1,459 Member
    Hi Steph, Glad to hear your

    Hi Steph, Glad to hear your mom is better.   Sorry I wasn't on to reply. I went a few days technology free.  As I mentioned, my hospital experience was not the best.  I had a similar reaction to the medications.  I screamed at people right after my surger.   I don't remember much but everyone else does.  I'm not sure if I was actually awake.  I do remember seeing my Aunt for about 3 seconds but I thought I was dreaming.   For the first few days, I would wake up in pain and wanted to crawl out of my skin and couldn't get comfortable on the bed.  My daughter took a picture of me with red racc -oon eyes which was a reaction from the morphine.  I had such a bad reaction to the medications.  I finally got a nurse that stepped in, fixed up my bed with heat, pillows and blankets so that things were more comfortable and called the doctor to assess the situation.  After that, things went a little more smoothly.  I started to get very vocal (politely) so that I could get what I needed.   It's really not always the best experience after such a long surgery.  The staff needs better training in assuming that a person is having a bad reaction to medication instead of thinking the person is being difficult.  As for anxiety, Ativan is very mild and what I use.  I use the lowest dose possible and have had no reaction outside of mild relaxation.   I also can not use most meds.  A few have put me in the ER with suicidal thoughts and one had me hearing voices.  I'm a little shocked they are giving her codeine.  Is she in pain?  I had to get off of the liquid morphine and take a pill form.  I do not remember if the pill was morphine or percocet but codeine doesn't seem like enough.  Each person is different though so as long as she's comfortable.  It was much better once I switched to pill form.  I could take it more often and had more control.   I hope things are getting better and better. 

  • Steph19877
    Steph19877 Member Posts: 20
    Helen321 said:

    Hi Steph, Glad to hear your

    Hi Steph, Glad to hear your mom is better.   Sorry I wasn't on to reply. I went a few days technology free.  As I mentioned, my hospital experience was not the best.  I had a similar reaction to the medications.  I screamed at people right after my surger.   I don't remember much but everyone else does.  I'm not sure if I was actually awake.  I do remember seeing my Aunt for about 3 seconds but I thought I was dreaming.   For the first few days, I would wake up in pain and wanted to crawl out of my skin and couldn't get comfortable on the bed.  My daughter took a picture of me with red racc -oon eyes which was a reaction from the morphine.  I had such a bad reaction to the medications.  I finally got a nurse that stepped in, fixed up my bed with heat, pillows and blankets so that things were more comfortable and called the doctor to assess the situation.  After that, things went a little more smoothly.  I started to get very vocal (politely) so that I could get what I needed.   It's really not always the best experience after such a long surgery.  The staff needs better training in assuming that a person is having a bad reaction to medication instead of thinking the person is being difficult.  As for anxiety, Ativan is very mild and what I use.  I use the lowest dose possible and have had no reaction outside of mild relaxation.   I also can not use most meds.  A few have put me in the ER with suicidal thoughts and one had me hearing voices.  I'm a little shocked they are giving her codeine.  Is she in pain?  I had to get off of the liquid morphine and take a pill form.  I do not remember if the pill was morphine or percocet but codeine doesn't seem like enough.  Each person is different though so as long as she's comfortable.  It was much better once I switched to pill form.  I could take it more often and had more control.   I hope things are getting better and better. 

    Thanks for your responses

    Thanks for your responses everyone. This has now made me realise that the way my mum was is very common. Well good news, she was discharged yesterday (6 days post op) and is at home now recovering well so faR. She has become a bit dependent on me as I have helped her so much... Slept at the hospital with her as the nurses didn't do a very good job when she was in a bad mental state so it was good that I was there. I now know it was all the meds making her like This. when I leave the house she gets a bit worried and has admitted she is becoming a bit dependant on me and feels like she needs me here all the time... But nothin. that a few reassuring words from myself won't help :)

    if anyone else experiences this... Please know that the support from family members is essential. I know my mum couldn't of got through this without our family. It's hard at first but you defo will get through it