I apologise for what is going to be a lengthy post.
On 16th October, my dad had been due to have a staging laparoscopy for stomach cancer, having been diagnosed with a tumour at the bottom of his stomach around early to mid-September. Because he was having difficulty eating and had been losing weight, he had been prescribed Fortisip drinks. Unfortunately, due to the tumour being close to the exit of the stomach, there was only a very narrow gap for liquids to pass through, which was just a bit too narrow for the Fortisip drinks. The result was that my dad ended up being admitted to hospital on 12th October after being violently sick.
The staging laparoscopy went ahead as planned, and at the same time, my dad was fitted with a pump-driven feeding tube into his jejunum (small intestine). This was done at a hospital in Birmingham, as the only thing our local hospital provides by way of cancer services is chemotherapy.
Prior to the laparoscopy, there had been a concern as to whether cancer had spread to the liver, as the tumour appeared to be touching it. Much to our relief, my dad was informed the following day that his cancer definitely hadn't spread to the liver, and still appeared to be contained within the stomach. The consultant was keen for my dad to build himself back up, so that he could then commence two cycles of peri-operative FLOT chemotherapy a.s.a.p (to be finished by Christmas), with a view to performing a curative partial gastrectomy after that, following a further two cycles of chemotherapy (a preventative measure to reduce the risk of the cancer returning).
The date the chemotherapy was due to commence was 21st November, but it was clear a fortnight before this that something was clearly very wrong. My dad was vomiting at least four times a day, but his GP and our local hospital didn't seem overly concerned as to the cause. It was obvious just by looking at my dad that he was in no fit state for chemo, and yet when he had gone to our local hospital on 19th November for some pre-chemo checks, nobody had batted an eyelid. On the 20th November, my dad had phoned his Clinical Nurse Specialist. He told her he felt too weak for chemo, and she could tell just by the tone of his voice that he really didn't sound at all well. The decision was made to cancel the chemo and get my dad admitted to the hospital in Birmingham (as soon as they could find a bed) to establish what was going on.
On the evening of 22nd November, my dad was taken for a CT Scan. On the morning of 23rd November, my mother received a phone call from the Clinical Nurse Specialist, asking if we could go to the hospital because the consultant wanted to talk to us. We knew this didn't sound good. You know when someone is clearly stressed, and they start stroking their face with their hands? Well, this was the consultant when he came into my dad's room and sat down. He was sorry. Really, really sorry. The tumour had grown. Curative surgery was no longer a viable option because if it went ahead, some of the cancer would be left behind. The consultant could not apologise enough that due to hospital politics, the system had failed my dad. The best he could offer was chemotherapy to try to shrink the tumour.
Because the tumour was completely blocking the exit to my dad's stomach, the consultant said he would arrange for my dad to have a duodenal stent fitted. In the meantime, my dad had a nasogastric tube inserted to drain all the bile and stop him vomiting. My mother and I were with my dad when this happened (with our heads turned away), and although we knew it was in my dad's best interests, I cannot tell you how distressing and upsetting we found it.
I cannot fault my dad's consultant and the rest of his team at the hospital in Birmingham, but I do feel a lot of anger towards our local hospital and the system as a whole. We (the general population) are constantly being reminded that the sooner we get symptoms checked out, and the sooner treatment can start, the better. Well, what good is that if the 'system' doesn't have the resources available, and people aren't being faced with lengthy delays!
Anyway, a few days ago I had been informed by my dad's Clinical Nurse Specialist that she would ensure my dad had the District Nurses to visit, to commence following discharge. I had read that this is standard procedure after a duodenal stent has been fitted. Before we left the hospital yesterday, I happened to read my dad's copy of his Discharge Letter, along with a print-out of a nurses' checklist. It stated quite clearly that no referral had been made to the District Nurses. I queried this with one of the senior ward nurses and made a point of explaining what I'd been told by the CNS. She asked why my dad would need a referral, so I said, "Well, presumably because my dad's just had a duodenal stent fitted!" "Oh no, they won't send the District Nurses out for that," she replied. Because I know just how much my mother had struggled after the last time my dad was discharged, I pointed out that there was absolutely no way my mother could cope with looking after my dad, as she'd found it hard enough the last time he was discharged. The nurse's blasé attitude made me snap. "So I guess this is do-it-yourself healthcare? I guess this means that I'll now be needing to have words with my dad's GP then!" >:)
When my dad had been discharged from hospital back in October, it had been sprung on him at the last minute that he would need to self-inject Tinzaparin anti-coagulant medication. He had been given a 3-week supply but thought he would only be needing to self-inject for the first week. His heart sank when he realised he'd got another fortnight to go. Towards the end of the third week, my dad just couldn't bring himself to self-inject. My mother didn't want to do it because she was terrified she would do something wrong. In addition, within days of my dad's discharge in October, the skin around the jejunal feeding tube had become red and inflamed and was oozing gunk. He has a dressing that ideally needs to be changed daily, but while he had been in hospital this hadn't been done, resulting in an infection.
I know the NHS is stretched, so obviously the more the carers are able to do, the less of a drain it is on resources. What annoys me is that the carers (and the cancer hosts) have all these responsibilities foisted upon them, and it's just assumed that they will be OK with it all. Well, what if they're not! Carers are frequently told how important it is to make sure they are looking after themselves and to take time out for themselves. How is this possible if there is no outside helps from the likes of District Nurses, and their time is completely taken up with caring for the cancer host? Does the 'system' assume the cancer hosts have a large circle of relatives and close friends who can all pitch in to help? Does the 'system' really have any idea just how mentally, physically, and emotionally draining it can be for the carers when they're not only having to play the part of a carer but are having to keep on top of domestic chores, keep an eye on household finances, etc?
Oh, and another thing. On my dad's Discharge Letter, it had stated 'Acute Renal Failure' as a co-existing medical condition. This was the first my mother and I had heard. As far as we know, the only condition (in addition to the cancer) my dad has is very mild COPD. Needless to say, I've fired off an e-mail to the CNS to try to determine what the heck that's all about, and also to establish if she has actually made a referral to the District Nurses.
