Bowel cancer, stoma, illestomy bags, my journey with my fathers illness

ukmaggie45

Thank you for the update. Glad your Dad was able to get away for a break. Very happy he's getting help for the Blue Badge application - that should help make his life much easier.

Best wishes to you, your Dad, and your Family.

mum2one

I have changed the title as i feel that this has been my fathers journey, through my eyes, and help for him.

He started off with a blockage in the bowel, nothing serious, or so we were lead to believe, less than 48hrs he was rushed into hospital, less than 30 hours from there, he is in theatre for an emergency op, its bowel cancer......

mum2one

Its been a month since the last update, so much has changed mainly for the good, (I hope).

Bags - he has now finally got the bag situ under control, he's had a couple of bursts, as he was advised to empty the bag just 2 or 3 times a day.

Weight I'm really pleased to say that he now has gone back to pre-operation weight, - he lost about 1/3rd of his weight, as he weights about 10 1/2 stone, the difference was really noticeable, you could see him bones in his spine and ribs...

foodHe's still keeping up with his 1 pint a day of full fat milk, and crusha is the favourite mix, he still has his mid morning snack and cup a soup in the afternoon. Food wise hes eating everything normally.

Holidays We managed a week away at half term, he managed brilliantly, he didnt go far, as he can't walk far, and still gets tired, when we did go out it was somewhere that he wasn't far from the toilet, but bar normal visits we had no mishaps.

Bowel nurse the nurse is pleased with his progress, just a case of touching base

Supplies We now order the supplies ourselves for him, touch wood were doing ok.

support we have finally got all the support networks in place, and Mcmillian nurse has been brilliant, shes helped with forms as well as pratical items.
as well, the lady from the Red Cross, has been like an angel to us.

Accessories Were due to return the wheelchair this week, been a great help, the other items were still using such as perching stool, hospital table,

blue badge Dad now has a blue badge, that will help when we go out for appointments for him.

Attendance Allowance This is thanks to the help from the Mac nurse, she did all the forms for us, they were very quick with the assesment, from the form being returned, we had an answer within 1 week, - sounds positive, although he will be getting AA it wont be till next yr, when he has the bag for mths, low rate, it all helps.

chemo After visiting the oncologist it was decided that chemo is an option, I went with him, we had some choices, which we discussed all options with the oncologist, - the outcome was tablets - 2 weeks on, 1 off, - 8 cycles, we have completed the first cycle, and touch wood, no symptoms apart from some tiredness, so hopefully he can tolerate the tabs,

Next steps
Blood test - to see how everything is

Tablets - if all ok, course 2 of chemo

Scan - he has to have a ct scan - check for secondary cancer, - were not out of the woods yet, so fingers crossed

oncologist go back for a review and hopefully good news

bowel surgeon we have an appointment with the surgeon, it will the 1st time that he will this one as its our local hospital.

---
We had a bit of a shock last week, a close family friend passed away suddendly, although he had a fright the week previous they thought he had a heart attack (the family), it wasn't the tests came back inconslusive - but they had found a blockage in the bowel, and he was bunged up (which was the way dad had started), he collasped and from what his daughter had described, - to me it sounds like what dad had - the burst bowel......

It has put a shock to all of us, and its been decided that just be me going to the furneral, as its too much for dad to deal with, as for mum, its going to much of a long day, (90 min drive each way), church, crem, then the wake.

Were taking everything as it comes and dealing with issues as such, were hoping its good news, we havent really looked at the worse case scenerio.. x

ERICS_MUM

I hope this doesn't sound patronising but you are doing a marvellous job supporting your Mum and Dad. Please make sure you are eating properly and getting enough sleep/exercise. It's important that you keep yourself healthy yet it's easy to forget your own needs in such a situation.

Best wishes to you all, long may things continue to improve.

Linda xxx

mum2one

ERICS_MUM wrote: »

I hope this doesn't sound patronising but you are doing a marvellous job supporting your Mum and Dad. Please make sure you are eating properly and getting enough sleep/exercise. It's important that you keep yourself healthy yet it's easy to forget your own needs in such a situation.

Best wishes to you all, long may things continue to improve.

Linda xxx

Thank you so much Linda, that means the world... I'm trying, theyve supported me through ups and down, post natal depression, ptsd, 3 yr employment tribunal, then court case with my ex, theyve been my rock, as well as dad doing the many runs to Manchester airport in the middle of the night, so I (then we, me and DD to Tunisia).

I have to confess do sometimes have 40 winks in an afternoon when DD at school...

We get there some how... xx

mum2one

a little update... hospital appointment...

blood test this morning at the hospital so all results will be fresh...

The chemo tablet run this afternoon.

bless his heart as he hasn't had any surgery at our local hospital, he had to have a further 2 blood samples taken this afternoon.

The results from this mornings blood, - he has low iron count, so we have to go back to the hospital on Wed for 2 blood transfusions, so thats about 5 hrs up there.

x

Indie_Kid

I hope all goes well x

mum2one

It has been a roller coaster and a half, theres been times where i wanted to shout and get me off - but its familes so we stay on the ride.


The updates, -

Blood test - to see how everything is

Tablets - if all ok, course 2 of chemo - the blood test showed up a magnesium low level, so he had go back for 2 blood transfusions, but was given his chemo tablets

blood transfusion - went ok, really nice dept, they even gave us sandwiches, cake, unlimited tea and coffee, I was that shattered that i ended up falling asleep in the comfy chair...

We had a massive incident with the hospital transfer, it was a whole hospital issue, but no one was prepared to "blow the whistle" so it ended up as me and dad being the ones, it made the front page of the local paper, theres an internal investagtion going on.


Bowel Surgeon He was lovely thou didnt look old enough to be out of medical school... He was pleased with how everything was going.

Oncologist Good to touch base, everything was going ok, then the scan came into play - not good news - mass panic as they found blood clots in both his lungs, how he was still with us, we dont know, we think he may have a guardian angel.

From there they have started him on blood thinning injections, - he will have to have them daily for 6 months, - eventually need to learn how to jab him.

We're hoping, that he will be eligable for a medicial trial, know tomorrow, so fingers crossed both aspects the trial and the one set of the medicines.............

I will confess it has been a really difficult few days, this has thrown everyone for 6, its just gone off the ricter scale...

Support wise, the school have arranged for DD to see a counceller, shes had her 1st session, due no 2 this week, shes having 6 sessions, for dad he goes to the hospice on a day outing, once a week, we feel a fraud for this, but as they said he had the cancer, so he is entitled to be there, last week was his first week and he really enjoyed it.

Myself - its it home, it was a roller coaster, as the furneral went to last week, with what his wife had said about the symptoms I thought it was a perforated bowel, but after the pm, it was apparent that it was a blood clot in his lung......... its so frightening.

Mum - shes struggling with it all,were trying to do the best we can.

I'm hoping to get a couple of days away just me and DD, seen a beautiful converted barn, and the out of season a wend is £120 - so going to grab it, one route its half way between where we live and the coast, another roadway, its half way between home and my friends (the lady who lost her hubby) take presents out and her dds bday as shes 30 this yr, done a little gift set of 30 presents, as well as a lovely angel wings necklace.

Take it one day at a time, tomorrow be the review of the injections, next Monday will be course 3 of chemo

A good point - when we saw the oncologist today he had looked at the scan again, and bar an enlarged prostrate, (we knew that from the operation) but its not a major concern at mo.

he is free from any secondary cancer

xx

ukmaggie45

Gosh, what a whirlwind ride! Very glad to hear no secondaries. :j Hope you have a wonderful weekend with your DD and manage to get some rest.

Cyber hugs from Liverpool. :grouphug:

mum2one

Ukmaggie - thank u, ur in a lovely part of the country, Liverpool was my football team when I was a teenager, going back a few yrs, my favs were Ian Rush and kenny dawlish.

A bit of good news today he's been accepted on the trial there's 2 groups 1 tablet controlled the other injections we were kinda hoping he would picked for tablets but he's in the injection group, no probs as he would still needed the injections anyhow. 6mths injections then part 2 of study everyone the goes to tablet 1 group be on proper tablet the other the fake one.

I did his injection today - 1st time bar my own jabs there Epi pens so u don't see the needle, but scary more that I didn't want to hurt him, all went ok, so I'm jabbing now but the weekend going to get district nurse in then next weeks he's going to try himself. Plan is to get another overnight break b4 Xmas, do a big parcel run in 1 go. Xx