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jj

New to this community and would like some support

Hello all, my husband has been diagnosed with colorectal cancer, T3, N2. He was to go in for his surgery tomorrow, but there is a pretty big hiccup. When we spoke with the surgeon on the 7th of this month, he was confident that a resection would be successful and he wouldn’t need further treatment just monitoring. However he called us in this morning to have a chat.
My husband had to have a triple abdominal aortic aneurysm (AAA) on Nov 17th, 2017. He was diagnosed during the national screening programme for all males who are 65 and over. All three of his aneurysms were critical. Surgery went well but he developed major Post op complications resulting in the amputation of all ten toes even though he was not diabetic and very very fit. He was in hospital for 78 days in total, 50 days first time and a further 28 days.
His Bowel cancer was also detected by the national screening programme and he was diagnosed following his colonoscopy on jan 30th.
Today his surgeon told us that he had just finished reading through his extensive notes and seen prior scans and reports. So his findings from the reports are
1. His blood supply to the pelvic region is very poor.
2. He thinks my husband may have genetic vascular problems that have caused the blood vessels to collapse.
3. He had spinal ischemia, one of his post op complications from his last surgery which could also be responsible for his poor blood supply.
4. His surgeon informed us that my husband’s chance of one surgery to remove the cancerous part and surrounding lymph nodes without resection and a permanent colostomy is his best option.
5. He fears that when he removes this portion and do a resection the blood supply being poor already, and more blood vessels will be removed during the surgery, will be insufficient for the healing of the resection to take place and chances of the rectum dying is also high.
6. In case there is a leak if a resection is done, then the chances of my husband surviving a 2nd operation to repair the leak will be very poor.
So I would like to know if
A. there are any others here who have had AAA and bowel cancer in this group?
B. If so, how are you coping and what was your prognosis?
C. If there is no one here with AAA and bowel cancer, those who have had colostomy can you please tell me how it has affected your life? And what to expect?

Sorry for this long missive, but this is the only way I could explain what I need help with.
Thank you for your patience and any information you can give me.

Lirio345

Onwards and upwards @jj, take very good care, Kim :x::x:

jj

@Lirio345, @Bear G, @bettebette, @Clancy, @Baxter2, @island girl
, @Gypsy
Thanking each of you for the warmth of your support. How are each of you coping? Praying that like my husband, all of you are on your way forward. Sometimes, we have to take two steps back.

Here is yesterday’s update.
Post op day 3 update
1. Chaks is off the IV and the morphine pump. That's really good and he was off the oxygen yesterday itself as his oxygen saturation was great.
2. His surgeon had been to just check on him three times since his surgery, never seen that before. He has been allowed to start on solids but small quantities. Breakfast was rice crispies, lunch was soup, bit of creamy chicken pie and yogurt. Forgot to ask him what he was having for dinner. Probably soup 🍛 and yogurt.
3. He is only taking paracetamol for his pain😯.
4. Chaks and I worked through two crossword puzzles. He started one, I started one, then we swapped over when we had trouble and finally when there were only two or three left to finish, two brains proved definitely better than one.
4. Chaks has been able to raise himself up a little bit by himself, can lift his legs up while lying down (don't know if he did that while sitting up in the chair in the morning), can reach out for things on his table and help himself to water or things from his bedside cabinet. However, he did need help to get off and back on the bed when he was asked to sit on a chair for a while.
5. Chaks is in good humour and though he didn't get much sleep last night, he was still cheerful.
So all in all, there has been remarkable progress and I for one am so so thankful. May he continue to be protected, shielded and covered with His love and blessings.
That's all ladies and gentlemen for today.
I plan to get an early night, so am already in bed.
Please do be patient with me if I do not answer calls, reply to individual messages or send the update late. Sometimes I am busy, sometimes just plain lazy, and yet at other times I am watching Liverpool FC play. So be patient and tolerant.
.
Thanking each and everyone of you for your continued prayers and support. I promise you, they are not in vain, as you can see they are being answered.
With lots of ❤❤❤ and 🙏🏽🙏🏽🙏🏽

jj
Quote from @bettebette:
That sounds like good news @jj
Best wishes for a continued good recovery

@bettebette have you had your scan and has your CEA levels dropped?

bettebette

Hi @jj I am having an MRI on the 9th (Tues) I haven’t had another cea test, I did ask but was told that it was best to wait for the scan (which I suppose makes sense) Thank you for asking.
Good to hear that things are still moving in a positive direction for your husband. Very good wishes to you both :x::x:

mem

Lovely to hear hubby is doing well @jj. You must be exhausted too so don’t feel bad if you you can’t update us, all of the time. Take care of you too and love to you both :x::x:

jj

ello @bettebette, @Bear G, @Gypsy, @greyhound gal, @island girl, @spannerkate, @lola14, @mem, @bettebette, @Lirio345, @Baxter2, @Clancy,

Hello All just a quick update,

All the drains are out. My husband was walking a bit yesterday. Found walking easier than sitting. May be discharged today. There was a slight reddish, warm patch where the abdominal drain came off and they are keeping an eye on it. Might need antibiotics.
Chemo will likely be needed.
Most of the questions I asked his surgeon were answered by ‘after we get the biopsy results”. Tumour pierced peritoneum and one of the vas deferens, so the left vas deferens was removed.
Lynch Syndrome confirmed. Both Chaks and I will have been automatically referred to the Genetic centre for counselling. Did you know that if my boys do the testing and are found to be positive, their mortgage, insurance etc will be affected. Told the boys it’s their choice and I think health is more important.
Will keep you all updated.
Take care all of you. It’s great to be here.

Regards
Jane

Gypsy

Hi @jj. I'm so glad to read of the good progress made and hope that he can come home to continue the gentle recovery and make the most of Spring sunshine! Yes, I agree, I hope your sons get tested- it is what I would have wanted for my kids. :x::x::x:

mem

It’s all sounding positive re hubbys recovery @jj ☺️. It’s great to hear he is up and about. I also agree re your boys getting tested, and health being far, far more important!
Love to you both and I hope hubby’s recovery continues to be a smooth one :x::x:

bettebette

Hello @jj I hope that your husband will continue to improve. The surgeon’s response about waiting for the biopsy results is right of course, but won’t stop you wondering.
I hadn’t thought about the other implications of the genetic testing other than the health ones, but of course the results will have an impact, I send you and your boys best wishes for good results with that; I wonder how long the testing/results will take. Have a good day and good wishes to your husband :x::x:

island girl

@jj,all sounding good, hopefully hubby will be home soon & well on the road to recovery. One step at a time & one day at a time. Also take care of yourself, you sound like amazing wife & mother. Love to you all 💕 :x::x::x:

Baxter2

Great progress @jj

I'm sure Chaks will be home in no time by the sounds of it!

Lots of love

Karen💜💛❤️💙💚

greyhound gal

Hi @jj, really great that Chaka is progressing so well 👍
For more information and support about Lynch Syndrome, I would suggest you register on the Lynch Syndrome UK website, they will then contact you so you can join their closed Facebook page. They will really be able to help!
Onwards and upwards!!!
Wendy :x::x:

Jomo9

@jj hope that everything is going well. Thought that I would let you know that I am also a Masters athlete, but in hockey. To be honest I am not that great but meet the age requirements and was a GK until the operation! I am going to the European Masters Games in Turin in July. I also run and the operation and chemo has affected my ability but will get back to it soon.

My operation was in October followed by chemo. I had a leak so had to have a second emergency operation that wiped me out. Cue 5 days in ICU and learning how to walk again!

I wanted to reassure you that my tumour was T4N1M0 and I also potentially have Lynch Syndrome. It sounds as if they tested your husband before the genetic counseling session. This interests me as it seems his results were also quite quick. My appointment is on Monday and they will do the blood test then. I’ve been told that it’s a 2-3 month wait for results. Am not sure about the mortgage and insurance details as I don’t think that I got asked any questions about Lynch, just if family had cancer. My dad has prostate and they didn’t seem to think it was that relevant!

Best of luck for your husbands recovery. Jo :x::x:

Hans

@JoMo @jj I wish you all the best and the results good and reassuring. The journey must be so hard and I admire your bravery and determination
Hans

jj

@Gypsy, @mem, @bettebette, @island girl, @Baxter2, @greyhound gal, @Jomo9, @Hans
Thank you everyone. My husband was discharged yesterday so that’s a great relief.
@Jomo9 sorry that you had to have a second op due to a leak. That’s why a permanent colostomy was advised as his surgeon felt he wouldn’t survive a second op considering his history following his AAA op and complications. He was lucky his surgeon was good and managed to do it using laparoscopy without having to open him up. I don’t think my husband will be able to run in competitions again as he lost all his 10 toes following the last op. But he wants to get fit enough to at least walk the 10k that he did regularly prior to his last op. As both his parents died young with stomach/intestinal cancers, I think they sent his blood test off on Jan 30th when he was diagnosed following his colonoscopy. The results just came in the day before his op. So 2 months is about right.
Now we wait for the biopsy results to see what happens next. That should be in, latest by April 18th.
Will keep you updated.

Thanks for your support
Jane

Baxter2

Absolutely fabulous news @jj

You must all be so relieved!

Sending lots of love

Karen💛💚❤️💙💜

bettebette

Good to hear that he is at home @jj
Here’s to a steady recovery :x::x:

KarenE

Glad your husband is back home @jj. Here’s to a smooth recovery :x::x:

island girl

@jj, brilliant news, lots love & big hugs to you both 🤗 :x::x::x:

determinedjoan

V well done 👍 u guys; wishing him a steady, full recovery :x: