Never thought I’d need this group again

I asked permission to join the group because I was a full time carer for my mother although I was the person with cancer.Last December mum developed a heart problem and is now a permanent resident in a nursing home.She has gone from being able to walk,feed herself and being continent to being bedbound,doubly incontinent and having to be fed.This has been since January.She has end stage dementia and I miss her a lot.I miss caring for her too,I had done it since 2004 after she suffered a brain haemorrhage.Take care love Jane xx

That's a good point Winker 60. I should come off, too, as I'm no longer a carer. I haven't been posting, but I have been caring about the rest of the people on here xx

Please don’t worry about hurrying to leave the group as I’m sure you are both helping others. 
hubs had his duodenal bypass op done successfully by laporascope, and they got a tumour sample. The Renal/Urology team in this hospital seem pretty useless so I’ve got 3 names, one at Oxford, 2 at Manchester’s Christie, to get the results sent to for a second opinion. 
this mornings news, he’s had one complete post-op day and walked as far as he can (20 metres) before his back causes his legs to go numb (spinal stenosis) and sat out. Still has lots of lines here and there so the nurses have given him a wash, he left the very efficient night staff to do their job and is already sat out in the chair. I’ve got a list of stuff to take in! 
Hugs xxx

Hi Moomy,Thank you for the update.I have been wondering how the bypass went.It must be such a relief your husband has had it done and is starting to recover from it.I hope you get somewhere with the second opinion.Thinking of you both.Love & hugs Jane xx

It’s a 3 steps forward, 2 back scenario, hubs was sick this morning and is back on nil by mouth, I think he felt ‘too good’ yesterday and pushed his luck! The ‘other end’ had a bit of an explosion too, bless him he felt so embarrassed at having to be cleaned up. He’s very tired after a bad night too, leading up to this I guess, but has still been sitting out. 
the biopsy they took on Friday shows NOTHING! Nobody can quite believe it. So it’s an ultra sound guided biopsy as soon as they can, had hoped for this afternoon but no success yet. And then a rapid referral to Oxford with results, and I hope the gut will heal to allow him home to build up a bit of strength before the trip to Oxford, hopefully to get seen and started on some form of anti-kidney-cancer meds as soon as possible. Fridays surgery, they hope, will buy him months; if the cancer can be treated then who knows. 
Hugs xxx

At long last, all 3 of us spending half the day on the phone, have found that the ultrasound guided biopsy will be tomorrow afternoon, so we haven’t lost a bank holiday weekend.

I managed to get my way past reception to take something to the ward, and then got to outside and we were able to wave through a window and chat on the phone at the same time, he was so pleased to see me, even if from a distance. 

Daughter eventually (while I was out and driving) spoke to one of the doctors (a locum) who did tell her that it’s very advanced, so at least the kids are prepared. I just hope something can give us time to sort his things (a huge amount of specialist woodwork tools, he was an engineer who has transferred his skills easily). 
im not sure I’m ready for this.

hugs xxx

Hi Moomy,I’m thinking of you and your family.What a tough time but I’m glad you were able to wave and speak today.I hope the guided biopsy will provide more information.Love and hugs to you all.Jane xx

Thank you.....

Had a call back (at last) from Uro-oncology nurse, she explained the system. Once the biopsy is stained and looked at results will get sent to Oxford. Then they will arrange to see him (she actually said that on paper he looks terribly frail and unwell but In person a strong able man, even now!) and see if treatment is appropriate and the type that he would cope with. Then that can be started. She has seen some folk much worse than him do well. That made me cry as I’ve been thinking we really won’t get long now. 

been FaceTiming -all the family including him, his stomach drain had been empty but has filled up this afternoon, and it looks dark. I just hope that the surgery did work and will give him time. 
I’ve also asked the GP surgery if he should qualify for patient transport since it’s a long trip, and yes he should, I hope. They need 3 working days notice when we know an appointment. 

oh dear this is hard.

hugs xxx

I so wish I could do something to help.I’m sending a friendship request,Love & hugs Jane xxx

Also had a phone call from the consultant ( he was on a course but had so many calls asking him to contact me that he did) who is the link man between our hospital and Oxford, he listened to my interpretation of the story so far and together with the history he has already, helped me through and actually agreed with my supposition that the department seems short staffed! He said they would do their very best particularly due that time has been missed, tomorrow’s biopsy will get discussed with the main team in Oxford next Friday, and an action plan formulated, 

he was kind and incredibly supportive especially when he found out all we’ve been through with cancer already. Sadly treatment will possibly need to be done in Oxford in spite of the new cancer centre locally, they might not have the facilities to make up some of the drugs, he says. 

Ive emailed my nurse counsellor asking to talk tomorrow if possible. 
Hubs’ N-G tube is draining some really dark yukky stuff sometimes which makes him heave when they empty it, he’s not sure the surgery has worked. 

Consultant Surgeon says when he can he will go and see hubs on the ward. 

I feel we’ve spent most of the day ‘at it’ (banging head against a brick wall springs to mind) but we might have some progress in place. 

Just hope it bears fruit. 
hugs xxx