Hello deejay12,

I'm just popping by to ask how did your mum's appointment go?

Do come back when you find a moment and let us know, we're thinking of you both.

Warm wishes,

Renata, Cancer Chat Moderator

Hi Renata, 

The tumour is 2-3 inches. So the risk of blockage means mum has little option but to have surgery. It will be keyhole which has reassured mum, in the next four weeks. The lung nodule has been shelved as an issue as the nodule is small and the treatment options are limited with mums age. So not perfect, but a bit brighter than a few days ago. 

Paul

Hi,

Its a year since I last posted. I need to update in stages as this is not easy to write. 

Mum had her pre-op on 21 June 2017. That showed an irregular heartbeat. So mum was given a heartscan and placed on beta blockers in preparation for the op. The day of the op was 28th June, the anaesthetist wasnt aware of the heart scan and had to find it first. The op went ahead and mum was in intensive care for 4 days during which she time her stomach shut down (called an Illius) and she had to swallow a tube to pump out her stomach. Her vein also broke open and needed stitching. I was in hospital everyday 10am-8pm with food breaks during this time.

On 3rd July Mum was moved to a ward and i could only visit from 2pm.  At first mums bowels were very loose so lots of bed changes, sometimes 5 times an hour until an imodium type drug was given. On the morning of tuesday 4th the rehab team tried to get mum up, she messed herself and fainted due to the blood pressure change. Mum woke with a mask on, laying on the floor. That scared her and me when i was told. But over the next couple of days mum picked up, a few assisted steps each day with a zimmer frame and a chair behind. So far so good then.

Mum never liked hospitals and she had been convinced to have the operation as it was a keyhole technique with an average 5-7 day hospital stay. A rehab centre stay had been mentioned but not stressed as definite. The cancer nurse on the ward however was certain mum needed a period in rehab. I explained I lived with mum and would care for her but I was convinced by the nurse that it was not in Mums best interests to discharge now, mum would be properly assessed at the centre and any self discharge by Mum would not be safe. The nurse spoke to Mum, who was digging her heels in about coming home (saying we'd get by), and, to my everlasting regret, the nurse said to mum that I also thought rehab was a good idea. So Mum talked to me. I said I would struggle with Mum as she was, and said the centre would help. As mum trusted me implicitly she agreed. We tried to argue for one centre but got another one instead, as it was first place avaliable. On Monday 10 July Mum was transferred to the one where the first place was available.

I saw Mum on the evening of the 10th, the rooms were small, two to each room. The lady with mum suffered from dementia and talked at mum constantly, the poor lady was also not properly supervised and got up and fell on her face breaking her nose. Mum was terrified and begged me to bring her home. I went and saw the head doctor who again said mum was not ready. In the end I got mum moved into her own room that night. The following two days (Tuesday 11th and Wednesday 12th) mum received no rehab as all staff were on a training course. Thursday and Friday involved a daily 10 minute session where mum was wheeled to a small flight of stairs and helped up them. Mum was getting more rehab just going to the toilet in her room and I already had a comode at home since mums colonoscopy. So this all could have been done at home. In the meantime mum was asking me everyday when she was coming home, she wasnt eating or drinking enough due to the anxiety of being in hospital. At one point the Doctor said mums operation wound was open, but changed her mind the next day. The physios didnt work weekends either but it looked like mum would be discharged on the Monday when they were back. On Saturday afternoon mum complained to me she had been shivering all night. In the early hours of Sunday morning Mum was rushed to the hospital with suspected pneumonia.        

The first I knew was when I turned up at the rehab centre on sunday afternoon and mums room was empty. The rehab centre had phoned my work and left a message rather than my mobile. When I got to the hospital mum was in A & E. She was fed up , felt ok, but wasnt eating. A doctor told me mum had hospital acquired pneumonia. Mum told me she should never have gone to rehab and I felt so guilty. Mum was moved to a ward. Her infection count was 260 rather than a normal 10. Mum also had a severe UTI from the catheter that had been in place since the op.  Blood was being passed causing mum to double up in pain. Antibiotics slowly brought the infection level down but Mum didnt eat whilst in the hospital. Everyday I took in sandwichs, chips, anything I know she like that was calorific, but mum just picked at it. She was thoroughly fed up and getting thinner and thinner. She also couldnt get good rest and sleep, it was too noisy. 

The hospital wasnt great. They didnt know mum had  the op for three days even though i kept telling them. Blood pressure/tests were taken from the wrong arm (mum had her lymph nodes taken out when she had a mastectomy the year before). Doctors were young and never available. The rehab team was just two people, one of whom seemed close to cracking up due to the workload. I was on edge constantly.

I obtained a hospital bed from an Aunt who'd gone into a home. I raised all the chairs, had a commode ready and a care package was set up. The catheter was removed on the 23rd July and on 25th mum was discharged to home (they still wanted rehab and we both refused this time). I thought we could at last begin Mums proper recovery. The hospital had not warned me of anything to look out for.  

Mum was not in great shape. The compression stockings the hospital had insisted mum wore during her stay had been poorly put on with creases. Mums legs had swelled due to the water tablets they had given her (which were switched to diaretics just before discharge). This caused cuts and blood blisters all over her legs. The hosptial had also increased mums beta blocker dose to 10 mg on discharge.

Mum felt sick in the car on the way back. However she was able to use a zimmer frame to walk into the front room and use the downstairs toilet the first day. Mum also ate like a horse the first few days back. The carers were just there to watch mum wash down in the kitchen. Students and men. Not that skilled. Mum was getting more tired each day, which I put down to the beta blockers and recovery. However her urine was also smelling though it wasn't that dark. The carers would empty mums commode not saying anything about the smell. I would empty it sometimes too. I hate myself that I didnt realise mum had the UTI back. 

On Sunday 30th July just before midnight mum became incoherent and couldnt speak properly. My girlfriend lives opposite and she had been a great support visiting mum in hospital.  I called her over and we decided that I should go to GPs at 8 am and arrange a home visit. I should have called 111 there and then. Another deep regret. During the night mum needed to do her number 2's and it took about 5 goes to get her onto the commode, she was so scared and disorientated. 

At 8am monday morning I went to the GPs and explained the urgency. A neighbour stayed with mum. The GP came at 4pm. He had no knowledge mum was home.  The hospital had sent there discharge letter to the wrong surgery. Even then the discharge letter just said see your GP in a couple of weeks to review the beta blockers. The GP had a completely different view. He said mum was very frail and I had to make a choice as to whether treatment was now relevant! He said he could given mum antibiotics but they may not be the right ones and mum would be septic by tuesday with me alone to deal. Or he could call an ambulance and let the hosptial give mum all the relevant drugs. The problem being the ambulance may not take her in especially if mum said no, even though she was delerious. What a dilema.

He called the ambulance, told me it was a two hour call. Its was actually a four hour call but they only came at 11pm. Mum said no, so they persuaded me it was in mums best interests to have the antibitoics at home (though they didnt have any)  they also couldnt understand why the GP hadnt given them, and said mum had no symptoms of sepsis.   So they called the night doctor, who came at 5am tuesday morning and gave mum antibiotics nearly 30 hours after she went delirious. 

Through tuesday daytime mum was having the antibitics and I was waiting for them to kick in. Then at 5pm mum started to vomit. Every 30-40 mins. I called the GPs as soon as it started who said the antibiotic needed changed, so I rushed up to get more.  But it didnt help. I counted 16 separate vomits. Just me and mum and a bowl. At 1 am I decided to call 111. I sat there on the phone being assessed. Very stressed. The same nighttime doctor came out and said mum needed to go in. Mum said in her state, how long for, he said a few days. Mum agreed. The ambulance pitched up straight away. Mum was taken to A & E. I was immediately taken to one side and was told mum had Sepsis and was asked about resuscitation. I said no ressus, as I know the bones would break and there would be no mum left, but to try to sort the infection. 

Mum was transfered to a ward. Mum started to suffer severe pain in her legs, she was crying out and in tears. It was horrible. Gradually during the day mum settled. But mum had changed. 

I cant write any more today, I will complete this tomorrow.  . 

A fog had decended over mums brain, and she could not get most of her words out.  She'd say a few words but be unable to finish, it frustraited her and she would wave her hands over her face to show her thoughts were fuzzy. I was there each day, as i had been everyday, this time from 10am till 5pm. The infection level came down over the next few days but mum couldnt get out of bed. The physios tried but mums blood pressure would always drop dangerously. They tried lifting with a hoist and one day got mum into a electronic arm chair but just the once. Mum wasnt eating. When In Rehab mum had been more likly to take a drink from the nurse than myself, the authority approach seemed to work, so I stuck with that this time going for food breaks when mum was due to eat. But when i came back mum hadnt eaten, but thought she had in her head. I tried Jellys, Ice cream, soups, anything I could. I was on first name terms with the chief trying different recipes.  As each day passed mums arms began to swell, the doctor said it was protein deficency. So I tried bringing in foods, like high protien yoghurts or boiled eggs. Mum chewed and swallowed with difficulty and i had to par boil the eggs so they were loose enough to swallow. One day I overcooked the eggs and the lumps just stayed in mums mouth, I had to get them out.  

The doctors said the Sepsis had caused the brain fog and that would wear oiff in time, but in the meantime mum was struggling. They kept trying to take blood to check her infection level but mum was dehydrated so the vein were just not there. Mum would look at me wide eyed and say "Paul, Paul" as they tried to take blood or add a canula. The canulas would fail regularly and the antibiotics would swell mums arms up instead of entering her veins. Or they would take mum for scans and remove the canulas. Then it was back to trying again, and again, and again. Even using her tender ankles. Mum crying or pleading each time. 16 times they tried in one day. They could only have two goes each so sisters, nurses and doctors were queueing up like buses to inflict this on Mum. But whilst i complained I didnt stop them because I wanted mum to live. I will never forgive myself for this. I could have stopped this torture.