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.