COMING HOME

My friend came home from hospital on 16th June. She was sent home with loads of medication for pain and stopping the sickness, so in theory we should be able to cater for any eventuality.


She has good and bad days and her eating still isn't very good, but at least now she does eat. I still have to do everything for her, although she now has a shower seat, so can manage to shower on her own with me hovering outside. She does however still need help with drying and getting dressed.


On Thursday 21st June, we went to see the Oncologist. He told my friend that in his opinion she had made the right decision by not having the operation to remove the tumour, as the probability was that once opened up it wouldn't be suitable for removal anyway. 


He also said that even though she had not had a biopsy, from the results he had seen he was quite happy to proceed with chemotherapy as he was 99.99% certain that it is Pancreatic Cancer.


Tomorrow 25th June we are going to see the chemotherapy suite at the hospital and meet the nurses. My friend will then be given times and dates for her treatment. She has been told that even with the chemotherapy  treatment, her life will probably only be extended by a couple of months.


I don't think I would put myself through all that for a couple of months, but I guess until it happens to you, you can't really say. I think she is very brave!

THE OPERATION

Well my friend has had her operation under sedation and is now drain free. It was rather painful even with sedation, but a small price to pay to be rid of 'Dolly'  the name given to her drain bag.


She has a small temporary drain just in case the stent didn't work, but that is being removed tomorrow Saturday 16th June and hopefully then she will be allowed home. She can't wait.


She now has to carry a card to say that she has a titanium tube inside her just in case anything goes wrong. Let's hope that never happens.


On 21st June, she has an appointment with the Oncologist with a view to having chemotherapy, so my next update will be after that meeting.

ARRIVAL OF EQUIPMENT

I wasn't going to write again until my friend had her stent fitted. However I must just update you.


The district nurse ordered some equipment for my friend, for use when she returns home. A special mattress to stop bed sores etc, a pillow lift/back rest for the bed and a cushion for use in the wheelchair when she eventually gets it.


Well it arrived this morning 12th June. It's huge, the pillow lift/back rest which can be raised or lowered remotely once plugged into the mains, weighs an absolute ton and takes up half of the bed space. Now this is meant to rest on a mattress 6 inches thick covered in plastic so that it can be wiped. By the time all this is fitted, I'm unsure as to where exactly my friend is meant to sleep. 


Who designs these things. Have they no idea as to the size of normal household furniture. I can't see my friend using this equipment, but we will see. I'll let you know.

HOSPITAL UPDATE

My friend has spent a fairly good weekend in hospital. Today -Monday 11th June, she has been told that she is to undergo an operation on Thursday under local anaesthetic to put in a stent, so that the external drain can be removed. She's not looking forward to that.


So it looks like her return home will not be until at least Friday, but this will depend on how she is. There is now talk of chemotherapy, but a major operation is not on the cards. 


I guess there will not be any further info until after the operation to put in the stent. So until then.

THE SECOND STAY IN HOSPITAL

After loads of different medications, my friend has now much improved. She's drinking and eating very small amounts of what she fancies and looks much better. 


On the 8th June the consultant said he would leave it up to my friend as to whether she wanted to come home, but she decided she still didn't feel well enough to come home. Apparently no operations are going to take place at this time.


Saturday 9th June, a registrar came to see my friend this morning and said that she would not be allowed home until a good support network had been set up. Monday is a possibility but it will depend on the support network.


Today my friend managed a shower, although it took her well over an hour with many periods of sitting down, but she managed it. Walking now seems to be a problem. She can only walk extremely small distances before she needs to sit down with exhaustion. She is finding this extremely frustrating and becomes very upset. She has always been a very active person and finds this restriction difficult to take on board.


Overall my friend is in a far better place this weekend than last, but there is still a very long and unknown road to travel.

THE CRISIS

Well things didn't get better in fact they got worse, my friend began vomiting in the afternoon. This continued over night and into the next morning. She couldn't even keep fluids down and was becoming severely dehydrated. Her bones are now sticky out through her skin, the deterioration has been very dramatic.


On Wednesday morning 6th June at around 7 o'clock I left messages everywhere for urgent medical help. At about 8.30am a phone call from the hospital saved the day. They would re-admit my friend, it was just a case of finding a bed.


At 2pm I was finally given the go ahead, a bed had been found. By 2.45pm she was on the hospital ward. She was immediately hooked up to a drip and various drugs were pumped into her to ease the pain and stop her vomiting.


I have spoken with her this morning 7th June and she sounds much better. I will be seeing her later today and hope to find out more.

THE NEXT SEVEN DAYS

Not only had my friend to think about her options, but her general health and her day to day struggle with what now we knew to be a fatal disease was become increasing difficult.


Up until this point I had helped my friend to dress and maintained the day to day running of the home. But suddenly she took a dramatic turn for the worse. Now unable to stand or walk for more than a few seconds, I find I am now doing everything for her. Washing her, drying her, dressing her, everything to do with her personal care. 


What little she was eating has now dropped to nearly nothing. What she consumes would not keep a baby alive. She is still drinking, but only small amounts. She is in constant discomfort, although not what you could really call pain.


The appointment at the hospital tomorrow is now looking increasingly less lightly, unless she makes a dramatic recovery over night. So far apart from visits from the district nurses, last seen on Thursday of last week, we have had no support. This being the Jubilee weekend it is difficult to contact anyone.


I can only hope that tomorrow will be better than today!

THE CONSULTANT MEETING

We arrived at the hospital in good time and made our way to the out patient clinic. The clinic was already running 30 minutes behind so we knew we would have a wait. Around 50 minutes later we were called.


The consultant was  very pleasant and frank about my friend's situation. He confirmed that she had indeed got pancreatic cancer and the prognosis as it stood was 6 - 18 months. He then went on to explain the possible options.


Although the growth was 4cm which normally wouldn't be considered for an operation, he felt that the pictures from scans and endoscopy indicated that removal was a possibility, but confirmation of this would not be possible until they opened her up. Even then removal may not mean a cure and even if an immediate cure could be achieved the growth would be likely to come back in a few years.


The second option would be re-constructive surgery, which would mean creating a bypass around the growth. This would negate the need for the drain and bag and would alleviate symptoms such as sickness and being unable to eat. This could either be carried out as separate operation or if unable to remove the growth once opened up.


The third option was a procedure under sedation which would allow the drain and bag to be removed, but would still mean having the bypass operation at a later date.


This was a massive amount of information to think about, so my friend was given 7 days to think about it. A return has been arranged for 6th June at 10am.

THE ENDOSCOPY

Once at home my friend felt much better, especially now in familiar surroundings. A district nurse was to come to the home to take blood and to check the dressing and wound where the drain entered the body.

A few days later my friend received a phone call with an appointment for an Endoscopy for 9.30am Monday 28th May. This unfortunately was to be carried out on a hospital in the next county. So transport was arranged through the NHS ambulance service.

My friend was very brave and refused any sedative for this procedure, because she didn't want to spend any longer in the hospital than she needed to. Having a sedative would have meant her having to wait a couple of hours. I know I certainly couldn't have swallowed a large black tube with a camera on the end, without some sort of help.

She arrived back home just before lunch time. All we had to do now was wait for the result. The following day we received a phone call from the hospital in the next county talking about operations and all sorts. Very frightening and not quite right.

A few hours later my friend  received another phone call from the local hospital 26 miles away to say she had been slotted in on Thursday 31st May at 10.10 am with the consultant surgeon. Now she would really find out what was going to happen.

THE FIRST EIGHT DAYS IN HOSPITAL

My friend spent the next eight days in hospital undergoing various tests to find out what was causing the jaundice. X-rays, ultra sound and CT scans took place over a period of days. Fluid intake and urine output were monitored for fear of kidney failure. But despite all this and being yellow she seemed relatively well.


She was able to walk down to the hospital paper shop each morning to buy a newspaper, she met me in the hospital coffee shop at visiting time, she could shower and was eating although small amounts.


After 7 days we had a meeting with the registrar, a specialist nurse and a ward nurse to discuss the results of the tests and where to go from here. The registrar told us that he was 95% sure that it was pancreatic cancer, but would not commit himself 100% until an Endoscopy took place.


This didn't come as a shock as my friend and I had discussed this fact and I had carried out some extensive research on line and everything pointed in that direction. It didn't really need a doctor to tell us this fact.


So what next? A permanent drain would have to be fitted in order to remove the excess of bile causing the jaundice and continue to remove the bile so that the jaundice did not return. Only when this was fitted would my friend be allowed home. The following day the drain was fitted with a very unattractive bag attached. The bag has to be carried over the shoulder, like a shoulder bag, not the best designer wear.


After 24 hrs of the drain being fitted my friend returned home to await the Endoscopy appointment.

THE FIRST HOSPITAL VISIT

Driving the 26 mile journey to the nearest hospital with an on call doctor versed in such matters as jaundice, my friend was petrified and determined not to be admitted. We were to report to the Accident and Emergency department with a quickly written letter from the G.P. outlining the problem.


On arrival at A & E the place was packed. Having been assured by the G.P. that we would not have to wait once we were booked in,  we were shocked when we were told to take a seat. However the G.P. was right within 10 minutes were were called through and taken to a cubicle. 


The doctor immediately began a history and took blood samples. The shock then came when he said to my friend that she would be kept in for further tests. She was upset, I was all at sixes and sevens. We hadn't prepared for this. We hadn't taken any night attire or toiletries, so it looked like a hospital gown was the in garment for the night at least.


I waited with my friend for what seemed like ages. There wasn't a vacant bed immediately and the doctor wasn't sure when one would become available. So regrettably I had to leave my friend as I needed to travel the 26 miles back home to tend to our poor dogs who had been left bewildered some hours before. Armed with my list of things to bring at visiting time the following day, I made my way home.


At 10pm that evening, I telephoned the hospital and found that my friend was now safely albeit reluctantly, settled in a bed, on a ward, hooked up to a saline drip. 


What followed over the next 2 weeks can only be described as the most shocking and mind blowing news that could be given to anyone.

HOW IT ALL BEGAN

Five weeks ago my life was perfectly normal, whatever that is! But that all changed when my close friend with whom I share a house, went yellow or jaundiced as it is commonly known over a five day period.


She had been complaining of intense stomach pains on and off for weeks, but as she had a previous history of stomach problems, having had a a major stomach operation in her 20's, she assumed it was something to do with that.


A visit to the G.P for the pains,  assumed to be associated with her previous medical history,  produced yet more problems, as she was allergic to the medication and she came up in a rash. Her urine became dark brown and her skin to me at least began to look yellow.


A return visit to the G.P, was arranged but this time seeing the Practise Nurse. She was diagnosed with an allergy surprise, surprise and a urine infection. Armed with antihistamine for the rash and antibiotics for the urine infection, she was sent home.


Over the next few days, although the rash began to disappear the antibiotics did nothing to help the  'urine infection' and she was becoming more and more jaundiced despite her self denial of the fact. Finally a few days later after seeing herself in the mirror and realising that the whites of her eyes were now yellow and the visiting hair dresser remarking on how yellow she looked, my friend decided it was time to make an emergency appointment with the doctor.


At 4.20pm on 8th May 2012, the replacement doctor on duty, told my friend that she must go straight to the hospital because she was seriously ill. And so began the dramatic change not only in my friends life, but also my own.