Wednesday, 23 December 2009

Chrismas Shopping

The weather has made things more complicated than they should be this week. That and the fact that I hadn't realised how popular the online shopping deliveries were over the Christmas period, so I missed being able to book a delivery slot for Mum's supermarket shop this week. I looked at the end of last week to find no slots available for this week at all, on all four supermarket sites that I checked. I REALLY didn't want to have to brave the supermarkets, but as time was running out before Christmas I knew I would have to face it. Surprise, surprise it was snowing when I was planning to go yesterday, but I kept ringing Mum and she said it was better where she was, so I decided to go for it. Tesco was like hell on earth. Some things had completely sold out. Others I realised I hadn't got by the time I got in the queue, but you could hardly get round the aisles, so I decided that the Christmas crackers were going to have to be missing this year.

I waited such a long time in the queue and eventually got to Mum's two hours after I started off shopping. It's not an experience I want to duplicate in a hurry. As a consequence I have blocked off a delivery slot of next Wednesday already and have reserved it with two bottles of milk. I'm sure this will be filled up with the things that Mum has run out off in the next few days, so I can add to it as and when.

The snow has also meant that I haven't been able to get over to Mum's when I thought I would this past week, so I have been very grateful that the carers are going to see her. Sadly Mum has asked that they only go in twice a day, as she has dropped the teatime visit. This was something that the MacMillan Nurse sorted out for her, as Mum had obviously complained about the number of visits. Of course this now means that Social Services want to do another full assessment after Christmas, something Mum is quite unhappy about, even though she has brought it on herself. It also means that Mum has no-one going in between about midday and the following morning, which seems a very long time to be on her own if she isn't feeling well one day. I have left a message to speak to the MacMillan Nurse about how quickly the care can be reinstated when the time arises. It seems a whole lot of faffing about for something which could have stayed in place. Interestingly Mum did all this without my knowledge. I expect she knew that I would have objected to her decreasing the number of visits again, so sorted it out without me knowing about it, until she casually dropped the fact that there was no teatime visit into the conversation...

At least the snow isn't as bad as it was in February. It has lasted for a very long time, as the temperature has stayed around freezing even during the day, but the amount that's fallen isn't as bad as it was earlier in the year. I took the above photo on my way to visit Dad in Weston Park when he was an inpatient in February. I had to walk there in the snow as all the buses had stopped. He'd been admitted as an emergency with an infection, so I was picking up the basics like a toothbrush and comb on the way to the hospital because he'd had nothing with him when he went in. Taking photographs on the way seemed to brighten the day, even though Dad was very poorly when I got there and didn't feel much like chatting. At least I made the effort to go. I really miss him.

Monday, 7 December 2009

Quality of Life

I have been looking through the Cancerbackup leaflet about oesophageal cancer to see if I can make sense of what Mum is being offered in terms of treatment. Here's what it says about treatment:

"Cancer of the oesophagus can be treated using surgery, chemotherapy or radiotherapy. The choice of treatment will depend upon the exact type of oesophageal cancer, its stage, position and size; as well as your age and general health. The treatments can be used alone or in combination."

This in itself is very interesting, particularly as it's portrayed as a "choice of treatment". Thinking this through I know that the tumour is adenocarcinoma and also using the information in the booklet I've worked out that the tumour is probably 2B ("the cancer has grown into the muscle layer of the oesophageal wall" but has not spread to the lymph nodes). I should have really asked about this, but I am very aware that my need for information might result in Mum being blinded by science, so have held back a bit with the more technical questions. We also know that the position of the tumour means it is inoperable.

There's another interesting paragraph in the leaflet:

"If the cancer is at a more advanced stage, treatment may only be able to control it, leading to an improvement in symptoms and a better quality of life. Unfortunately, for some people the treatment will have little effect upon the cancer and they will get the side effects without many of the benefits."

I suppose the "quality of life" bit is the key. All of the clinicians have weighed up how Mum is, her current quality of life and what could be horrible side effects of the treatments on offer, and have made the decision that we wait. As I write this I'm still feeling uncomfortable with this. Even though Mum is happy with the decision at the moment, it's almost like she hasn't been given a choice.

At the same time that all this is mulling over in my head, I spoke to Mum on the phone today and she told me that she had sold her first hand-crafted card. She gets great pleasure out of paper crafting and has been making greetings cards again recently. Mum told me that one of her carers was looking through what she had made and had bought two cards. She was really made up about this. Who would have thought that after weeks lying in a hospital bed not wanting to do anything at all, she could possibly regain this quality of life? It might seem a small thing, but in theory the treatment might take things like this away.

Saturday, 5 December 2009

Not even my own health...

Thursday was a bit of an eventful day. I had a busy morning preparing for the arrival of our new cat, Janet, and went to the RSPCA to sign off all the adoption papers. Then I went to pick Mum up to take her to the hospital for the oncology appointment. There was the shuffling about of dropping Mum off at reception and going to find a car parking space, but this wasn't too bad as I'd allowed myself enough time to build in finding a parking space before the appointment time.

After booking in at the out-patient reception, we didn't actually wait that long before they called us in to clinic. The nurse took us through to one of the clinic rooms, where Mum started to feel claustrophobic and ended up having to wander about in the corridors. When the consultant came through Mum was wound up by feeling panicky, so the discussion about perhaps having radiotherapy in the future was tempered by Mum feeling that she couldn't possibly be have this type of treatment because of her claustrophobia. When it was explained to her that most people manage to be in a radiotherapy room without windows for 10 minutes on her own, Mum just said "Well that's not me!". Radiotherapy's off then love!

The consultation really focused on the fact that nothing would be done until Mum was actually symptomatic. As the stent has resolved the swallowing problem and there isn't in any pain, radiotherapy or chemotherapy wouldn't be offered until Mum was experiencing some difficulties. Whilst Mum was pleased that nothing was going to happen on the treatment front yet, I feel the opposite. It seems like we're in limbo, waiting for some deterioration before something can happen. It really seems like something should be happening, some action rather than just waiting. After experiencing Dad's treatment plan, which was surgery followed by chemotherapy and then chemotherapy on it's own when the cancer came back, it seems really odd to be doing nothing. I can't really work out what the thinking is with this approach, but I know there are people I can talk this through with to try to understand. Mum certainly didn't want to know anything else and was asked several times if she had any further questions, so I wasn't going to ask why waiting for the symptoms to come back would be the best idea. The next appointment is in February, with the proviso that this can be expedited if need be. Even if she is symptomatic, I'm wondering if Mum will turn radiotherapy down.

In a fug of dissatisfaction, I went to get the car, picked up Mum again and headed back to her house. That's when I started feeling unwell. I had only joked the other day that "at least I have my health" - ha, ha! I wasn't feeling so funny by the time I got home, everything aching, feeling shivery and rubbish. Despite this I was supposed to be going to pick up Janet, so went to get her, but when I got her back I really was feeling so terrible, with pains all down the right hand side of my stomach, feverish and shivery at the same time. I actually felt much better when I was sick, but I went to A & E to get checked out. It could have been the start of an appendicitis, but I escaped admission to be allowed to watch and wait. I slept most of yesterday and didn't eat for a whole 24 hours, proving I must be hideously ill. I have improved in myself, but the discomfort hasn't gone away. I will watch and wait some more.

Friday, 20 November 2009

Back to the Grindstone

We have been away for almost a week's break, first in Ireland and then in St Annes-on-Sea, but it was straight back to work yesterday evening as soon as I got home. With a full day at work for me today, the holiday is almost dissolved, particularly as I am looking towards Mum's oncology appointment on Thursday, but I am so grateful to have had some time off.

Mum was still having a range of visitors before I went away. At one point she was seen by the dietitian, a Community OT, someone doing an assessment for the care providers, the carer and the District Nurse in the space of about 24 hours. Most significantly the MacMillan Nurse came to see us. The District Nurse had referred Mum on to the MacMillan Nurse, hence the visit.

That many people are going in to see Mum that she is actually starting to complain about how many times she's having to say everything, and how tired she is having to see them all, but from my perspective this level of support is brilliant. What a very different picture this is from when Dad was ill, when we struggled to make sure he was being cared for properly with very little input from anyone else. Having input from a MacMillan Nurse means that someone who knows about all the different types of support can offer specialist advice, rather than us struggling to know what input could be coming from services we know nothing about.

So the next step is the oncology appointment. I am partially expecting that the Oncologist will recommend not doing any chemotherapy, but that's just a hunch. Who knows what the appointment will bring.

Tuesday, 17 November 2009

Rose Tinted Spectacles

My Fairy Godmother, Claire from Social Services, came to do Mum's needs assessment today. It was quite detailed and it was a bit tricky to keep emphasising that although Mum thought she didn't need all the input from carers, she might not always feel as well as she does now.

Mum actually wanted to drop the morning visit from the carers, the problem being that she was having to get up early to let them in. It won't be so bad when the key safe is fitted, which is a coded safe outside the front door that the carers access to let themselves in. The key safe hasn't been fitted yet, so that will make a vast difference as Mum could theoretically stay in bed if she wanted to. I was quite concerned that she didn't drop the morning visit. Take my experience of going to see her this morning. She had told the carers not to call as my brother was there, but at 9.30 when I arrived, he was still in bed and Mum hadn't got her own breakfast ready. She then asked me to get her breakfast. So, regardless of who was in the house today, if that had been a day when a carer wasn't doing a morning visit, she wouldn't have had any breakfast. I persuaded her to keep the morning visit and in the end Mum asked them to stop the bedtime call. We will have to see how this pans out. I have a terrible vision of her being bedridden by the chemo and there just not being enough carer's visits to cover her needs.

Interestingly one of the things that Claire was saying was that people are often buoyed by their experience of being discharged from hospital. This was certainly the case when Mum was relating information about her circumstances to Claire. As well as not needing the morning carer's visit, Mum said she got help from the neighbours, didn't have problems with motivation and depression, and was going out ok with family members before she went into hospital. In reality she has asked the neighbours for assistance only twice since Dad died, has ongoing mental health difficulties and would only go out with me for short periods of time, never on her own. I suppose it's difficult to be honest with strangers, but Mum certainly seemed to have had the rose tinted specs plonked on her nose. The information passed on from the hospital has definitely highlighted the motivation and depression issues, so I phoned Claire to say that certainly has been the case, which I anticipate could be a problem again. There could also be a fine line between post-discharge confidence and lack of insight about some issues that have been problematic for years, that are probably too ingrained to do anything about.

Mum's comment about the neighbours was actually quite peculiar. Mr and Mrs Neighbour have been keen to help, even whilst Dad was poorly, but this has offer of practical support has only been taken up on a few occasions. Mrs Neighbour called round as Claire was arriving this morning. She hadn't even realised that Mum was home from hospital. When I mentioned it to Mum she said she knew they didn't know and had been "hiding under the settee" since she got back! Input from a good neighbour is actually the sort of company Mum should be welcoming, but I suppose she's thinking that she shouldn't need their help if a daughter is close-by... All I know is half and hour's drive across the city for me is further a distance than down one driveway, along the pavement and up another driveway for Mr and Mrs Neighbour, even if they are both in their 80s. They are still both very active and Mr Neighbour still drives, a useful contact indeed.

There are lots of outstanding issues: a prescription for Fortisips, raised toilet seat, MacMillan referral, key safe, transition to permanent carers. There's probably some other stuff, but I just can't remember everything.

Monday, 16 November 2009

So Far, So Good.

Mum has now been home for three days and it seems to have been plain sailing. Of course, we've no idea how much the home care is costing yet, so all these reassuring visits could be worth a small fortune! The home care provision is means tested, so Mum will probably have to pay for the majority of the time carers are going in to see her. We should find out all this information tomorrow, as Claire from Social Services is coming to see us to do a full assessment. Claire is like my Fairy Godmother, as she waved the magic wand and got everything in place for Mum, at incredibly short notice.

The timing of the assessment is slightly problematic, as although Mum is still wobbly after such a long hospital stay so requires some input, she's still able to potter around at home. The worse may be yet to come once (if? - we are still waiting to see the oncologist) she starts chemo. Dad didn't have a great deal of the symptoms normally associated with chemotherapy the two times he had treatment, but I know Mum may not be as lucky. Then she'll really need the carers four times a day. Hopefully the assessment will take into account the fact that Mum's treatment has not been finalised. I am trying to think of diplomatic ways to feed this into the discussion without giving Mum the heebie-geebies about chemo.

I did another online shop for Mum yesterday, to be delivered later today. Even though I'm not going to be there, my brother is with her, but I am still slightly nervous that something could go wrong and Mum would say she wouldn't want her shopping doing this way in future. I have warned her that some things might not be in stock, so not to be disappointed if some things don't arrive today. It is so much easier to do the shopping for her this way, so I'm just hoping that she will agree to having deliveries at home in the future.

It is VERY strange thinking that I won't have to go to the hospital today (or tomorrow, or the next day!). When you do nine weeks' worth of hospital visiting, it sort of becomes a habit. It's a good job though, because the building work in the attic started this morning. They are knocking a wall back two feet into the eaves and then creating storage space before putting the wall up again. As I need to be at home, hopefully I won't be called to any emergencies with Mum this week though. Being two places at once is something I've not quite mastered yet.

Saturday, 14 November 2009

The Homecoming

Mum got home yesterday. I had gone across to her house yesterday with Bobby early, just so I could get a load of washing in, sort out the bedding and do some work. I also wanted to get in touch with Mum's Clinical Nurse Specialist, Gill, to talk about the referral to the oncologist. I was on the landline to Gill, when Mum rings my mobile to say the ambulance was just crossing Tinsley Viaduct so she'd be home any minute. Far from waiting all day for her to arrive as we expected, she was home by half past ten.

As soon as she got in Mum was wanting to go through the post and I spent quite a lot of time looking for a cheque book she thought should have arrived, as well as doing the ironing, making lunch, unpacking and trying to work. It was a busy day.

The afternoon was spent with a flurry of people coming to deliver things or introduce themselves. Someone delivering the personal alarm system. People to drop off a perching stool, toilet frame and fit the bath board. A Tesco delivery. Also, the lovely carer ladies, who will only be visiting Mum until Tuesday, when the full-time carers take over. As care was sorted out so quickly, an emergency team has been put in place as a short term measure, which will change again next week. Mum also thought that a District Nurse should have been coming, but maybe that was supposed to be another day as no-one showed. Not sure we could have accommodated another visit, so this was actually a good thing.

The fact that carers are going in to see Mum four times a day is amazing. I was actually surprised how much Mum could potter about the house, despite the fact that she said she was finding some things difficult. She managed to walk right down the long corridor in the bungalow without having to sit down and get in and out of the chairs. Still, it's good to know that people will be going in to help her four times a day, so if she's not feeling like getting a meal ready or needs help with something there will be someone around fairly regularly.

I have phoned Mum this morning to find that she was fine, but had a list of things to ask me. Questions ranged from "Where is the remote control for the stereo?" and "What's that lucozade doing on the worktop?", to "Have you got my Lakeland Plastics catalogue?". I was actually very pleased that she had made a list of things to ask, because often Mum calls every time something occurs to her, which means me taking many, many calls a day. This isn't a new thing, but it certainly exacerbates during times of stress. Maybe she's developed this new strategy to save my nerves.

The carers have already been in this morning and have made her breakfast and put some washing in. I'm going this afternoon for a bit, so I imagine there will be some ironing to do. Must remember that Lakeland Plastics catalogue...

Thursday, 12 November 2009

Loosing Track

I have to admit I'm loosing track. I can't remember who I've told what about Mum's progress (or not) and when I was at the Cancer Support Centre yesterday, someone suggested starting a blog. It means that anyone who wants to know can check in online and read about what's been happening. Simple but effective, hopefully. Hope you don't mind, but my normally reliable memory is faltering and this means I keep forgetting who I need to get up to speed on the latest news. Perhaps this will be a solution for my leaking brain.

So somewhere along the line I became the sad person that others can compare themselves to and say "At least I'm not having as bad a time as Kate!". A dead dog, dead Dad, dead cat, Mum with cancer, dog that hated husband and had to be returned and diabetic cat that keeps having hypos later, it turns out Mum's cancer is inoperable. The tumour in the oesophagus is too near to the aorta, making a risky operation nigh on impossible.

Mum has been in hospital for nearly nine weeks. There has been an awful lot of hospital visiting, an awful lot and I am very tired. We await an appointment with the oncologist to see what the plan is next. As Mum said, she will just have to keep going like Dad did, which is a fine sentiment under the circumstances. It is an underestimation to say that Dad engaged with his care when he had cancer, a PE, nephrectomy, subdural haemorrhage and chemo, and was positive throughout.

Today has been spent in a pre-discharge whirlwind of Mum being sent home from hospital. The short version of the day is that first there was going to be care input for her at home, then there wasn't and then there was again. Mum has called me, six, maybe seven times today and even threatened self-discharge (handy). One time she wanted to know if I had a lightbulb, as her bedside lamp wasn't working. I've also spoken to Social Services (twice), someone delivering all the equipment for her house, someone fitting a personal alarm and done an online food shop. Now Mum has her stent in, it was actually tricky trying to work out what she could and couldn't eat. In the end I flipped a bit and told Mum to stop phoning. When I arrived for visiting this evening, the Sister on the ward thought Mum "not being very happy" during the afternoon was hilarious for some reason. Hilarious? Not. Pending all sorts of different assessments, Mum will actually have four visits from care staff a day. Hallelujah!