Patricia Balsom: Diary of my final days

Like most people, Janet Street-Porter had read about the problems engulfing the National Health Service. But it wasn't until her sister was diagnosed with terminal cancer that she came face to face with the stark reality of our debt-ridden hospitals. And it is all spelt out in the diary that Patricia Balsom has kept as she seeks the care she so desperately needs

Wednesday 25 October

It's eight months since I collapsed and was taken to hospital, where I was diagnosed with lung and brain cancer. Because of my age - 57 - I was told that very little could be done for me, and that I had up to six months left to live. I then discovered that because of the cash crisis in the NHS, treatment is rationed to those who are most likely to recover, and if you suffer from more than one form of cancer, you don't fall into that category. It's particularly the case at the primary care trust that I come under - Hillingdon in west London - which has one of the biggest deficits in the country. Thanks to my sister, I was able to go private and received gamma knife treatment on my brain at the Cromwell Hospital in London at a cost of £15,000. It was after this that the NHS offered me a course of radiotherapy on my lungs, which I had in July. In September, an MRI scan showed that the cancer in my brain was in remission, and I was then offered a bone scan by the NHS to see if the lung cancer had spread further. Two weeks ago I had a pain under my ribs, and my oncologist thought I had either cracked a rib or that the cancer might have spread to one of my bones. I had an X-ray on 12 October but had to wait two weeks for the bone scan at Hillingdon Hospital even though I was in pain. I felt sick on the morning of the appointment, when Mick (my husband) took me to the hospital by car. Once inside the foyer I felt faint, but luckily an ambulance man put me in a wheelchair and took me to A&E where I was checked over and put in the observation ward. That evening I was transferred to a ward. I was breathing with the help of oxygen.

Friday 27 October

I was seen by doctors who slightly changed my medication and told me I could go home on Monday, once a specialist nurse had sorted out what I'd need at home - a hospital bed, a commode, and an oxygen machine. I was told that a carer from an agency would come in every day and help us. No one mentioned whether I would ever get a bone scan. No one explained what we could ask the carer to do and how long we could ask them to work for. The four-bedded wards at Hillingdon on my ward are mixed (men and women), and on Saturday night I was woken up twice by the man opposite. He was standing stark naked at the end of his bed masturbating.

Sunday 29 October

An elderly lady was placed in her bed next to a hot radiator to sleep, but as her bed only had one protective side on it, if she'd fallen out she would have burnt herself. When I mentioned this to a nurse they eventually moved her next to a wall. That evening at visiting time, Mick and I noticed that my left leg had became extremely swollen. We told a nurse, who telephoned for a doctor to come and see me at 8.30pm. At 2am I still hadn't been seen. By now I was crying and extremely distressed. They had already told me I had blood clots on my lung and now I was worried they might be in my leg. A nurse tried to tell me that the doctor might have come while I was asleep. At 2.30am I was so upset that I called Mick at home. Eventually a doctor came to see me while he was visiting another patient, and said he thought the swelling was caused by a blood clot. I was really frightened.

Monday 30 October

This morning one of the nurses told me to keep a pillow under my leg, but they told me they had no spare pillows. So, in spite of breathing with an oxygen tube, I rolled up my blankets and placed them underneath my leg to raise it. When I was admitted to the ward I was told I could only have one pillow, and if I wanted any more I would have to provide my own. Eventually I was discharged. Some of my medication hadn't been sent from the pharmacy. I was told I should have had it all checked by a member of the nursing staff but nobody bothered. I should have been taken home by ambulance that afternoon but eventually I was sent by taxi with a trainee nurse so she could take the oxygen cylinder back to the hospital as they needed it. Some of the nurses on ward were absolutely superb - but one in particular made my life a misery and was totally uncaring. (By the way, are nurses allowed to sleep in empty side-ward beds while on night shifts? Because that's what happened.) When I came home the specialist nurse had arranged for my bed as promised, but it only arrived at the same time as I did, and Mick had no one to help him assemble it. At least I've got a husband. How do single people manage?

Tuesday 31 October

My carer arrived at 10.10am (instead of 9.30 as promised) and I asked her what she was supposed to do. She told me she was tired because she had worked all the week before, and sat down in my chair! She said she would make my bed and empty my commode. She made no effort to do either of these things and asked me to sign a blank time sheet at 10.40am. When she left, my husband rang the agency and told them we weren't happy with her. Later they called and said we would have a permanent carer starting the next day, working Monday through to Saturday.

Wednesday 1 November

My breathing got bad around 5.30pm, and Mick called 999. The paramedics and an ambulance arrived within five minutes. I was taken back to Hillingdon Hospital A&E. I had another X-ray, was put on oxygen and given morphine. While being given an ECG I was asked if I wanted to be resuscitated if I collapsed, as my condition was terminal. They said I should have been asked this when I was first told of my condition. I found this extremely upsetting. Eventually I was taken back to the mixed ward again.

Thursday 2 November

My husband was told to collect me at 11am. When he arrived, they told him he couldn't take me because of the same argument over the oxygen cylinder, which they wanted back. The male nurse I had found so unhelpful on my last visit arranged for me to go in an ambulance at 1pm. At 3.30pm I asked when I was going home. The same nurse put me in a wheelchair with my medications and I was wheeled to the back of the hospital, where I was told to sit and wait for transport. The nurse on the ward rang my husband and said I was on my way home. (This was untrue - I was just sitting in another part of the hospital waiting for transport.) I was eventually brought home in an NHS delivery van, without a carer (even though I was breathing with oxygen) and the driver told me he wasn't insured to take me. But the transport office was closing. When I got home I sent the cylinder back with the van driver.

Friday 3 November

At lunchtime the agency rang to say my new carer would be with me tomorrow. At 4.45pm they rang again to say that she was no longer my carer. They gave me the name of someone else who would be coming instead.

Saturday 4 November

At 10am I was visited by a carer whose name I had never come across. She confirmed that she'd been called by the agency at 7pm the evening before and been asked to be my Saturday carer. She was very pleasant, told me she was coming on Sunday and left without me signing her time sheet. It seems that all arrangements at the agency are made by a lady who isn't in until Tuesday. I am still really guessing about what a carer is supposed to do.

Sunday 5 November

I had to call the out-of-hours doctor service at 7am to get a prescription for Oramorph as I have to take up to 80ml a day and Hillingdon Hospital had discharged me with only one 100ml bottle. My own GP's surgery is closed all weekend so I couldn't get a repeat prescription until Monday. I understand that making sure I have enough medication is my responsibility, but when you are taking nearly 25 tablets and liquid medicine a day, sometimes you screw up. Surely the hospital should have checked through all my medication before they discharged me? A charming emergency doctor arrived at 8.30am and Mick went to chemist to collect the prescription. My carer came at 10am. She actually treats me like a human being - with dignity and not like a lump of meat. She also has a good sense of humour. Still waiting for brochure from agency telling what carers are supposed to do.

Monday 6 November

My carer came this morning, and then my district nurse called in. She has a great knack of making me feel good. Like today she noticed Mick had washed my hair, which is difficult if you are stuck in bed a lot of the time. She said I looked really good. I don't care if she's lying - it perks me up. She is also very good at offering support to Mick because his life has also been turned upside down. My carer is scheduled for tomorrow but there's still no word from the agency. I feel I have such little control over who is caring for me.

Tuesday 7 November

Left leg started to swell around 7.45pm. Called the out-of-hours doctor service. Two hours later we called again. The girl on the phone said she thought we just wanted advice, as this was a line for seriously ill patients. We told her I was terminally ill. She asked if we needed a doctor, and we asked her if she was medically qualified. She said she was not. So we told her that we thought a doctor was needed. One finally arrived at 10.50pm, who told me that a blood clot might have moved but I would be OK because I was taking warfarin. She was concerned that a blood test should be carried out as soon as possible to determine exactly what level of warfarin I should be taking. My district nurse had said she was waiting for authority from our GP to do this, even though I had been given authority to have the test before I left the hospital.

Wednesday 8 November

We called at 9am about my blood tests. A district nurse came and took blood at 10.45am. She insisted that Mick took the blood sample to Hillingdon Hospital because she "didn't have time" to take it herself. (What if I was alone and we didn't have a car?) She told me the hospital would contact me in the afternoon with the results. Didn't explain what I was supposed to do with them. Waited all afternoon and evening, and no call came.

Thursday 9 November

Woke up at 8.40am with a stabbing pain in my left eye. Panic. After about five minutes I could open it, and the stabbing pain became a dull ache. At 10am the Macmillan nurse arrived and said she thought a blood clot could have moved. My district nurse rang to say that they hadn't taken enough blood the day before, and were sending another nurse to do the test again. At 2pm they took more blood. The nurse once again refused to take it to the hospital and didn't know who would tell us the results - just mentioned "a doctor". Mick drove off to Hillingdon hospital again. He is supposed to be my 24-hour carer but luckily my sister had dropped in and could wait with me. Then the hospital rang, demanding to know where the blood sample was. My sister lost her temper with them and said I was very distressed and keeping a diary of my experiences. She told them she would be making a complaint to the chief executive of the health trust, and that she was a journalist. The hospital rang again at about 4.30pm. They needed to know all the medication I was taking because it could interfere with the warfarin levels. Why was it not on my records? They said that when I left Hillingdon Hospital I should have been given booklets about taking warfarin, as well as dietary information. I had never received any, or any advice about the possible side effects of any of the pills I was taking. I was told to stop taking warfarin for two days and then resume on a lower dosage. Someone would come on Tuesday and check my blood again at home.

My Macmillan nurse called at 5pm and I told her how I felt about the way I had been treated. It's not just me. It's also my family and friends who are having more strain put on them. I feel Hillingdon Hospital are making whatever time I have left so much more stressful than it need be. They are cheating me out of quality time with people I care about. Apologies aren't enough, they don't buy time back.

Friday 10 November

At 9.30am I received a phone call from someone at Hillingdon who I think was from the complaints department. She wanted to discuss what had happened. I said I thought it was all a bit late and they were only concerned because they now knew who my sister was. She said she had only found out about Janet that morning and asked me if it was true that I had kept a diary of what had happened. I said yes. She wanted to know some of the problems and I mentioned my trip home from hospital in a delivery van with no carer. She asked for a copy of my diary but I am too weak to re-do it. Fifteen minutes later the woman's boss called and arranged to come at 1.30pm on Monday. Another district nurse popped in in the morning to make sure I was OK. This visit was not scheduled. My Macmillan nurse was supposed to call at 2pm to bring cream for my lips and some medication for my tongue as it feels like it's burning when I eat. She never showed up, and she's on holiday next week.

Saturday 11 and Sunday 12 November

Had a quiet weekend. Didn't feel too bad.

Monday 13 November

The district nurse came and said she would get a doctor from the hospital to visit as I told her I was very worried about my swollen legs, my sore mouth - it's been four days and still no one has brought the cream for my lips and so I can hardly eat - and, most importantly, the amount of medication I am taking. It is TWO WEEKS since a doctor saw me. The district nurse rang later to say a doctor from palliative primary care at Hillingdon Hospital would call. The anti-coagulation unit called and said they would come tomorrow to take a blood test. At lunchtime my sister arrived with flowers and a refugee food parcel. At 2pm a woman arrived from the complaints department at Hillingdon Hospital. I think she thought it was a bit of a social visit because after my sister had ranted her at about the fact that a doctor hadn't been in to see me for over two weeks, she said: "I'll go and get my notebook!" It was very distressing for me to watch my sister and husband get so upset about my treatment.

Tuesday 14 November

Was up most of the night from about 3.30am as both my legs have swollen up. I took painkillers, and walked up and down the lounge, but nothing seemed to work. I managed cornflakes for breakfast, and three energy drinks as everything makes me feel sick. The palliative doctor came at midday and ran through all my medication with me. She said my swollen legs were a case of water retention and not blood clots (as they had said at the hospital), and he checked my mouth. She prescribed pills for my legs and antibiotics for my mouth. Mick collected the prescription from our local chemist. A friend had to sit with me. I also have some new anti-sickness pills.

Another lady telephoned, something to do with with cancer care at Hillingdon Hospital. They want to come and see me next week. I don't understand why. Maybe to do with the fact that my sister and husband complained about the external care I've had. A specialist nurse called from the hospital to say she'd had a chat with my oncologist and that "radiotherapy was now an option again". Problem is, I haven't seen my oncologist for ages, and no-one seems to be in charge of me. It's just a succession of departments and people calling all day with no coordination whatsoever. I want to have radiotherapy, in a couple of weeks, but should I book it now in case I lose my slot? What about my bone scan? It's never been mentioned again.

Wednesday 15 November

Up all night with pain. Crying and want to go in a nursing home to die because I cannot put my husband through all this. The anti-coagulation unit came and took a blood test to determine whether I should take warfarin or not. But my GP still hasn't materialised. My sister had given me a newspaper article about buying lung cancer drugs from Canada on the internet. I don't feel as if anyone in the NHS is really in charge of my case. It's all up to me, Janet and Mick.