Effing cancer is an effing effer, frankly

[Morningside]

Thanks everyone for your kind words. I really think that you need to take every day at a time. Even harder at the moment as she is getting quite weak on her legs and I know its the drugs (confusion etc) but sometimes she is like a child.

[gwm]

Morningside said:

Thanks everyone for your kind words. I really think that you need to take every day at a time. Even harder at the moment as she is getting quite weak on her legs and I know its the drugs (confusion etc) but sometimes she is like a child.

My mum was the same, and would get very frustrated that she couldn't manage herself and couldn't articulate what she was trying to say. I found just standing/sitting there and holding her hand is best, rather than offer constant words of encouragement which can only add to her confusion.

[ali_kat]

gwm said:

My mum was the same, and would get very frustrated that she couldn't manage herself and couldn't articulate what she was trying to say. I found just standing/sitting there and holding her hand is best, rather than offer constant words of encouragement which can only add to her confusion.

Thoughts are with you Morningside

[kippax]

kippax said:

Just found this thread & thought I'd share my nightmare year.

Wife had ovaries removed in Jan due to cysts which they then found to be cancerous so hysterectomy recommended.

February - Sister in law dies in her sleep aged 45 (epileptic fit)

March - mother in law dies from Cancer

April - Dad dies from cancer & wife has hysterectomy just prior to her 40th birthday.

Dec - Wife told cancer has returned & spread to both lungs & liver & is incurable Chemo starts tomorrow to try & slow it down (3-6 months if it doesn't work maybe 2-3 years if it does)

Worst year of my life & things not necessarily getting better.

Quick update wife still fighting had some success on first type of chemo (Avastin & Capecitabine) with it holding it at bay for a while but it's now started growing again so just changed treatment & the new one is a bd! Totally wipes her out. (5FU).

Got a few weeks off it now as we're going away in FEB then the treatment continues.

[gwm]

kippax said:

Quick update wife still fighting had some success on first type of chemo (Avastin & Capecitabine) with it holding it at bay for a while but it's now started growing again so just changed treatment & the new one is a bd! Totally wipes her out. (5FU).

Got a few weeks off it now as we're going away in FEB then the treatment continues.

Hope you get to make the most of her time off the chemo.

[aspirated]

kippax said:

Quick update wife still fighting had some success on first type of chemo (Avastin & Capecitabine) with it holding it at bay for a while but it's now started growing again so just changed treatment & the new one is a bd! Totally wipes her out. (5FU).

Got a few weeks off it now as we're going away in FEB then the treatment continues.

Good luck with everything, I feel her pain, I've just finished 5x24 hours straight of 5FU and can feel myself beginning to reach the end of my tether

[drivin_me_nuts]

Same with my lass 5fu left her utterly wiped out for days. Sleep; lots of it and don't forget to eat and drink -very easily done. My best wishes to you all.

[aspirated]

eating/drinking is a problem now, the mucositis has kicked in and I've barely eaten in 3 days, may need a stomach tube

[drivin_me_nuts]

aspirated said:

eating/drinking is a problem now, the mucositis has kicked in and I've barely eaten in 3 days, may need a stomach tube

If it is a PEG, it will help massively. Of all the things that happened to my lass, having that fitted made the biggest most instantaneous difference to the quality of her life. You can then pretty much forget about eating. If it's your choice, think seriously about taking it.

DMN

[Speechless]

I had a PEG for 5 months. Bloody marvellous!!!

[TwigtheWonderkid]

Lost soul said:

Granville said:

We have found Macmillan Nurses invaluable, they do such a wonderful job.

I can not speak highly enough of them , they do a fantastic job

I hear this a lot, but when my f.i.l. was had cancer, they were bloody useless. Never saw the same face twice, missed appointments, etc. We blew them out in the end and just got on with it. Can only assume they were going thru some staffing shortage problems.

[aspirated]

Had my PEG fitted Friday, glad it's over with but even almost 3 days later it's still extremely sore and I can barely move

Hope it improves soon

[drivin_me_nuts]

aspirated said:

Had my PEG fitted Friday, glad it's over with but even almost 3 days later it's still extremely sore and I can barely move

Hope it improves soon

give it a few more days, it is a major procedure after all. Are you feeding yourself, or using a feeding machine. Do you have a feeding nurse? We found that when feeding was much better over night and at a slow rate.

[Speechless]

It shouldn't take long to get used to.. Makes feeding way easier than an NG tube. I used a 60ml syringe and just poured my 'formula' straight in, flushed it after with water, job done!

[aspirated]

Thanks guys, during my inpatient hours I'm usually on a 10 or 12 hour feed however I've been sent home for a week before my second course of chemo as my neutrophil count is pretty low at 0.4 and my doctor wants it at at least 1.0

Mouth is back to normal so I wasn't taught how to use the feeding pump as I'm eating normally so I'll be taught next week

With regards to my PEG, I was sent home on Tuesday at around 2pm but the pain grew increasingly worse, even worse than just after having the PEG installed on Friday, and eventually I was rushed back to hospital at around 11pm due to spiking a temperature of 38.8

Stayed overnight, IV antibiotics and the next day I had a stitch taken out of one of the 3 sutures around my PEG as it looked too tight. It's done the trick as now after taking codeine and paracetamol it feels completely normal, whereas before I was pretty 'uncomfortable' even after taking them.

Everyone I've spoken to says the first course as the worst and I'm looking forward to the next 2 now as I kind of know what to expect, my 5FU dose has also been reduced as my mouth became really really bad, so that's another positive.

Onwards and upwards I guess, it could be a lot worse for me and I'm relatively lucky that it's something curable and caught in time, although a particularly deadly form of cancer as the symptoms are everyday things such as tinnitus and hearing loss (which I had been experiencing for upto 18 months prior to diagnosis, GP gave me 2 courses if antibiotics for an ear infection lol) and the serious symptoms only show up in later stages

Excuse my rambling on and I'm impressed if you've got this far

ETA obviously I can't speak for anyone else's experiences but my Macmillan nurse has been absolutely fantastic, supporting me but more importantly supporting my mum who doesn't really have anyone else to talk to

Edited by aspirated on Friday 20th February 13:51

[drivin_me_nuts]

Good news, it's great to read of many positive steps forwards. Rest, sleep, 'eat' .

[Lost soul]

Lost soul said:

Had my 8 week check last week and they are happy with the progress of the recovery from the radio therapy

I am now on 12 week checks

So just when you think its safe to go back in the water

I have been suffering from lower back pain , but its been going on for a couple of months now all started in the gym , because of my history of cancer they got me in for an MRI scan on my lumber region , having scanned my lumber they took me out and said they were scanning my upper back which seemed strange , 3 hours later my GP is on the phone warning me that they had seen something which could probably be cancer in my bone marrow / spine

Had a head neck scan next day which was all clear and saw my oncologist the day after who was not reassuring and was saying basically the same as the GP.

Just had a bone marrow biopsy taken from my lower back (not recommended) and awaiting results

Have a full body CT scan next week , so it aint over till its over as they say

[Mrs Muttleysnoop]

Lost soul said:

Lost soul said:

Had my 8 week check last week and they are happy with the progress of the recovery from the radio therapy

I am now on 12 week checks

So just when you think its safe to go back in the water

I have been suffering from lower back pain , but its been going on for a couple of months now all started in the gym , because of my history of cancer they got me in for an MRI scan on my lumber region , having scanned my lumber they took me out and said they were scanning my upper back which seemed strange , 3 hours later my GP is on the phone warning me that they had seen something which could probably be cancer in my bone marrow / spine

Had a head neck scan next day which was all clear and saw my oncologist the day after who was not reassuring and was saying basically the same as the GP.

Just had a bone marrow biopsy taken from my lower back (not recommended) and awaiting results

Have a full body CT scan next week , so it aint over till its over as they say

Fingers crossed for you.

[Morningside]

Dont know why I am typing this. Maybe I need to get it out of my system.
My wife is now bedridden at home on a hospital bed and airflow? mattress. We have been told that it is only a matter of days.

Its so hard. Its really hard to care for someone who used to be fairly active and chatty with an active mind reduced to a still, shell of a person who can just about mumble a few words and gets frustrated when we cannot understand her. She has lost all concept of time and lays there 'asleep' talking to herself at night and I think her vision has also gone or going as she asked yesterday if it was day or night.

The care that we have received has been utterly, utterly fantastic from the district nurses who come everyday to the doctor who visits twice a week and the carers that come in and bath/clean her up.

I am at a loss with myself and spend most of the time crying about times gone past and how things were but try so hard not to show my anguish in front of her. I asked her yesterday do you now what day it is? Expecting the answer "Sunday" she says "Is it our wedding anniversary?" Well that set me off as this year it would be our 20th and I know she will not be around for it.

As I say to her and she oddly remembers "one day at a time".

[drivin_me_nuts]

Morningside said:

Dont know why I am typing this. Maybe I need to get it out of my system.
My wife is now bedridden at home on a hospital bed and airflow? mattress. We have been told that it is only a matter of days.

Its so hard. Its really hard to care for someone who used to be fairly active and chatty with an active mind reduced to a still, shell of a person who can just about mumble a few words and gets frustrated when we cannot understand her. She has lost all concept of time and lays there 'asleep' talking to herself at night and I think her vision has also gone or going as she asked yesterday if it was day or night.

The care that we have received has been utterly, utterly fantastic from the district nurses who come everyday to the doctor who visits twice a week and the carers that come in and bath/clean her up.

I am at a loss with myself and spend most of the time crying about times gone past and how things were but try so hard not to show my anguish in front of her. I asked her yesterday do you now what day it is? Expecting the answer "Sunday" she says "Is it our wedding anniversary?" Well that set me off as this year it would be our 20th and I know she will not be around for it.

As I say to her and she oddly remembers "one day at a time".

It is so impossibly difficult to do what you are doing now. I wrote pretty much exactly the same as you four years ago and just reading what you wrote brings it all back.

I'll say to you that your crying is a very positive thing. the release of your emotions enables you to process the next bit of what the day brings. It's taking the steam away from the pressure cooker one tear at a time.

It is an utterly isolating and tough experience but as much as you can, draw support for yourself from those around you. If you want to talk to someone whose been through this very same, just email me.

We can only stand and watch and do the best we can do for the person we love. we know that in time we will do the next part alone, but today, whilst we can we hold hands, touch warm skin and say how much we love the person in the bed. Your crying eases your pain and keeps the connection between you and your lady strong. Because without that release, it will all be too much. My best to you and your lady. I wish you a day of close connection.

R.