[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 585: sizeof(): Parameter must be an array or an object that implements Countable
[phpBB Debug] PHP Warning: in file [ROOT]/phpbb/session.php on line 641: sizeof(): Parameter must be an array or an object that implements Countable
Just Joined - Carers UK Forum

Just Joined

Tell us a bit about yourself here.
Hello everyone.
I am Anthony, but have always been called Ray, (2nd Christian name). I am 72 years old and my wife, Elaine, is 67. In June 2017 just after we had bought a new bungalow, she was diagnosed with Bowel Cancer. Further tests revealed that she also had Ovarian Cancer and was told it was at stage 4. In August, just after we moved in, the 2 tumours tried to combine causing a rupture which spilt out 'bad' stuff into her body. On being rushed to hospital she underwent 6 hours of emergency surgery during which it was touch and go if she survived. By the grace of God and the excellent work of the surgical team at Boston Pilgrim Hospital in Lincolnshire, she did survive. The surgery resulted in the removal of bowel parts and she has ended up with a Stoma.
She had to undergo some other procedures before Chemo as her kidney functions were down, this involved a Nephrostomy and insertion of a JJ Stent.
The 6 sessions of Chemo were completed but, after initial shrinking of the tumour, it has started to grow again and she is to undergo a more aggressive chemo starting on (Of all days) Friday 13th July.
Unfortunately she is now in some considerable pain and vomiting every few days, unable to keep anything down for long.
The prognosis is that with the new chemo she will survive into next year but without only a couple of months.
We have just celebrated our Ruby wedding anniversary so another milestone has been achieved, Birthdays last September and Christmas being the first 2.
It is now getting to me and I feel I need to reach out to others for some support. I would like to hear from others in a similar situation or advice on how to cope over the next few months.
This is only a VERY brief initial reply.

I have stood in your shoes, and it is hell. May I recommend specialist cancer forums such as the Macmillan community, which is, sadly, full of people who have also been forced into these nightmarish shoes.

One thing I learnt from my own time wearing them is that it's essential to 'mug up' on ALL the latest treatments coming on stream. Doctors do not always tell you 'everything' partly because it may only still be in trials, and partly because the NHS may not fund it.

There has been a revolution in cancer treatment in the last ten years, and what was once 'impossible' is becoming more possible. 'Standard chemo' is only the start of it.

That's why it's also important to join the forums of the charities that support specific cancers. I will look up a couple for you. They are the 'pressure groups' for getting more, and better treatments, on stream.

Sadly, what can also hold back a patient receiving the latest treatments is that their health is simply too frail to cope with them. That said, chemo is hardly 'gentle'.....

It's useful to measure your wife on the ECOG rating, which gives an indication of her 'outward health' (it ranges from 'wouldn't know you had cancer' to 'the end of life'.) I wil ltry and post a link to you.

It's helpful to know where your wife is on this, as the doctors will use this to determine what kind of treatment she is capable of having now.

One final word for now - in the midst of despair there is always hope. Cancer outcomes are changing all the time - the trick is to try and keep 'one step ahead', going from one treatment to the next. Cure may not be possible, but keeping the cancer 'at bay' may be.

Kindest regards to you at this dark time for you both -Jenny
Welcome to the forum, although I'm sure with all your heart you don't want to be here. I was widowed suddenly when I was 54, so no time to "prepare" myself. Really not sure which situation is better, each is equally awful. I'll stick to the practicalities, but please don't think me heartless in doing so.
The more help you get, the more bearable it will be.
Your wife should be entitled to Attendance Allowance, if she isn't already claiming it. Be sure to use the Fast Track Scheme.
Has she had a Needs Assessment from Social Services? You, a Carers Assessment? This is the start of getting things you need. Has she got a hospital bed, raised toilet seat, bathing aids, walking aids, and everything else to make things as comfortable as possible?
Has your doctor referred her to the hospice? If your wife is in pain, she needs more pain relief. Our local hospice was brilliant when my dad had prostate cancer, they kept the pain well under control, and their monitoring of the whole body was amazing. They had a day centre, which gave my disabled mum some time away from caring.
Has your wife been referred by the doctor to NHS Continuing Healthcare? Free health and social care, as long as she needs it. Again, your wife might be eligible for Fast Track. Unfortunately, it's a postcode lottery.

I had a nephrectomy 12 years ago, it took me about 3 years to recover fully, just from that. Combined with the other surgery, it's a huge, huge amount to adjust to. Is your wife currently able to walk at all. I found just walking very gently was really beneficial as it reduced the amount of swelling and discomfort in my abdomen. Otherwise, maybe a Circulation Booster might help? Of course check with the medical staff first, but when I had knee replacements it helped chased away a lot of swelling in my legs.

That's enough for now, if there is ANYTHING we can help you will, just ask. Feel free to write "I'm having trouble with xxx. Someone else here might have met and solved the problem already.
Hello Anthony and welcome
Well done in taking that big step to come forward, its not often easy.

As you will already have read, there will be ideas how to get financial, physical and practical help, mainly for your wife, but we are here for carers.

So what help/support do you get? Do you have family or friends nearby , perhaps they can start taking on some sitting duties so that you get a break occasionally? Are you managing to keep up with at least a little social life or hobbies for you? You may think this strange to say now when your focus is on your wife but it is too easy for a carer to give every minute to their caree, then find when the caree passes that it is difficult to start 'normal' life again

Am sure others will be along over the next few days to add their contributions, meanwhile ask away

Kr
MrsA
MrsAverage wrote:
Mon Jul 02, 2018 4:50 pm
Hello Anthony and welcome
Well done in taking that big step to come forward, its not often easy.

As you will already have read, there will be ideas how to get financial, physical and practical help, mainly for your wife, but we are here for carers.

So what help/support do you get? Do you have family or friends nearby , perhaps they can start taking on some sitting duties so that you get a break occasionally? Are you managing to keep up with at least a little social life or hobbies for you? You may think this strange to say now when your focus is on your wife but it is too easy for a carer to give every minute to their caree, then find when the caree passes that it is difficult to start 'normal' life again

Am sure others will be along over the next few days to add their contributions, meanwhile ask away

Kr
MrsA
Many thanks for the reply and kind words. Yes we do have family not too far away. Elaine's brother and his wife live 14 miles away, but he has breathing problems but they do help when possible. Her sister lives in London but does come up on a fairly regular basis.
It is not the financial side that worries me at the moment more the suffering that Elaine has. After writing this reply I am taking her to the doctors surgery as she has stomach problems and a deal of pain. The Morphine she was prescribed has reacted badly and she vomits around an hour after taking a dose, so we are hoping for something different.
As for me, I am lucky that Elaine is not a winger or a pusher, so I am never put under pressure from her so my physical well being is not a problem just my anxiety over her condition.
I have joined this forum to mainly pour out my feelings and also to find out how others in my situation have coped.
Kind Regards.
Ray
Ray, I've had a total of 10 carees, from new born to 87, all four parents, brother and husband have died. In the last 15 years I've had 7 operations, and had 5 years virtually unable to walk after a car accident nearly killed me. Only the fact I was driving my late husband's Range Rover saved my life, but was written off in the process.
I've had many dark days. The best thing to do when you feel you can't take any more is to stop. It's usually a sign of exhaustion. Leave the dishes, the ironing, or anything else that can wait for another time. Shower and early night are required.
Hi Ray
It would be worthwhile you contracting Macmillan nurses or the local hospice as these are the experts in pain care. Mentioning 'hospice' doesn't mean she's destined there, these days most offer wonderful home support, sometimes called 'hospice at home'..

One common thing all of us on here have learned is that these days no one offers anything -you have to seek it out- so do find what are the specialist cancer support in your area. They may well have carer support too.

Meanwhile, pour away on here as much as you need :)

Kr
MrsA
MrsAverage wrote:
Tue Jul 03, 2018 10:14 pm
Hi Ray
It would be worthwhile you contracting Macmillan nurses or the local hospice as these are the experts in pain care. Mentioning 'hospice' doesn't mean she's destined there, these days most offer wonderful home support, sometimes called 'hospice at home'..

One common thing all of us on here have learned is that these days no one offers anything -you have to seek it out- so do find what are the specialist cancer support in your area. They may well have carer support too.

Meanwhile, pour away on here as much as you need :)

Kr
MrsA
Hi.
Many thanks again for the advice. We did see the Macmillan nurse at the Pilgrim Hospital and re referred us for a home visit. Last week one of the nurses came to see my wife and explained a great deal to her to help,including more effective pain relief. Unfortunately the Morphine, prescribed before, made Elaine very sick, constant vomiting and the like, so now she is on Tramadol which does work. She starts a new course of chemo on Thursday this week, 12th July. Her Oncologist phoned just this morning to say that her case was discussed yesterday and they are to change the form of chemo after the meeting.Not quite so aggressive but as effective.
The other point about Macmillan is that they have submitted a claim for attendance allowance. We did submit a claim late last year but were turned down, so Elaine's cause has been taken up by them.
All the very best.
Ray
Anthony_1807 wrote:
Mon Jul 02, 2018 11:57 am
Hello everyone.
I am Anthony, but have always been called Ray, (2nd Christian name).
Have you ever found that a problem in life Ray?

I'm in the same position, first name Alexander but have always been known as John, my second name. Everyone on my father's side of the family has been known by their second name going back as far as 1823, (which is as far as I've traced things).

It has caused problems for me at times, I'll get a cheque made out to John ******, take it into the bank to pay it in and they say, "Well, who's this John fellow, you're Alexander", I point out the second initial but it's not good enough for them, so I have to take the cheque away and doctor it and take it back a few days later.

When I joined up here, I didn't get an option of username, it just decided I was Alexander.
You can change your user name by going to
User Control Panel
Profile
edit Account settings

We recommend people don't use real names, or real names of caree. Most of us on here are genuine but a few may not be. We also get regular visits from various 'career trying to glean information

Hope this helps
MrsA