A few days ago I received a letter from the Director of ARCOS. Thanks to the generosity of those of you who made donations in memory of Colin, we have been able to give ARCOS just over £800! Given the amount of support ARCOS gave Colin for safe swallowing, they deserve every penny.

In her letter of thanks, the Director said that they "want to make sure that this sum of money helps others with similar difficulties" to Colin, and that, as I know only too well, "it is not easy to obtain specialist help for eating, drinking and swallowing". And "the donations should contribute to enabling others with neurological conditions including brain tumours and those who care for them, to benefit from ARCOS' input".

ARCOS have an open day a week today (Sat 26th Nov) between 11am and 3pm at their centre in Malvern, http://www.arcos.org.uk/. If you are able to visit you will be able to see some of the tremendous things that they can do to support their clients.

So, thank you all again.

Jane.

That is a thank you to all who helped me in any way imaginable with preparing and planning the celebration service for Colin, thank you to all who took part or helped in another way on the day, thank you to all of you who attended and thank you to all who have made a donation to the charity ARCOS in Colin's memory. Spilsbury (the funeral directors) tell me they leave open the receiving of donations for four weeks so I won't be able to tell you how much collectively we have to give to ARCOS until after that. But all of it is really important as the Speech and Language Therapist(s) from ARCOS helped Colin almost from the time he moved to Perrins, giving advice about posture, food and fluid consistency to help with Colin's intake of nutrients due to his swallow difficulties. If we had had to wait for the NHS SLT I guess we might still be waiting!

Jane.

Arrangements for the funeral are almost done and I'm only really posting this here because there are one or two distant and long lost friends with whom I have not been able to make contact, try as I might. So....if you think you are one of them and would like to know about the funeral, then do get in touch by the usual methods. It will be Wednesday next - that's all I'm prepared to say on this media.

Whilst I'm about it, may I say thank you to all of those kind people who have sent messages of sympathy - they are all very much appreciated.

Jane.

The very long, arduous, roller-coaster journey finally came to an end at about 5:50 this morning.

I had left the hospice last night but hadn't felt entirely happy in doing so as Colin's breathing had noticeably changed over the evening. However, having spoken with the nurse on shift and being re-assured they would call me if anything changed, I decided to go home and if nothing else (ironically) to pack an overnight bag.

In the early hours I was awoken by the phone and with heart thumping I knew what it would be. The very kind nurse on the other end explaining that Colin's breathing had changed again over the short period she had been on shift and it being unsustainably rapid she advised I should go into the hospice if that was what I wanted to do. So I arrived there about 2:25 am. And indeed the breathing had changed, quite noticeably again. And so events took their course.

Thank you to all of you who, over the last year and a half, have unstintingly visited Colin. This made a huge difference in that it made his days, which were easily dreadful, more bearable, interesting and cheering. I am, of course like many of you, deeply saddened by his loss but hugely relieved that he is no longer suffering and at peace.

Jane.

Colin is still at St Richard's. Doctor and two consultants decided yesterday to give him another couple of days on hydration as they couldn't decide whether it was making a huge improvement. They will then assess the swallow. Earlier the nurse had managed to get Colin to swallow his Lansoprazole dropped from a syringe but this morning this wasn't so successful as there was a significant delay again before the drops were swallowed and the nurse stopped mid-way.

However, since Colin has been here, he has been really calm. No distress or anxiety, and other than the saline drip and the steroid, he is not getting any other regular medication.

Equally important info - I have practically no mobile signal and some texts are not getting through and certainly no phone calls! I have emailed the family with more details than what is written here. Will try to keep visits calendar updated.

Jane.
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Back in Worcester then!

The CNS from St Richard's Hospice visited Wed, Thur and today. The elimination of the Midazolam from the syringe driver did not induce further fits but did remove the 'glazed over' effect. Yesterday the nurse suggested that she and her counterpart specialist neurology nurse, based at the community hospitals, should review and assess Colin's swallow with a view to returning to taking fluids and meds by mouth again, and so made all the arrangements for this to happen today.

With a fair amount of difficulty, the two nurses carried out the assessment, using the dry spoon method and then with a very small amount of thickened water. However they decided that Colin's swallow was not working well, there being a delay with taking fluid in the mouth and actually activating the swallow. This would mean that if Colin were to take anything by mouth there would be a significant risk of him aspirating. This left everything in a very difficult place as the lack of fluids and meds over the last week was having a significant negative effect.

After a time to consider a way forward they came up with a plan of action. One option was to transfer Colin to the hospice in Worcester for hydration (this is not something that could be done at the nursing home or in the community hospital). I was so relieved they had mentioned hospice and not Worcester hospital that I can't remember the other option! The hospice was their preferred option and they had had to do some wheeling and dealing to get Colin a bed there.

The plan is to see whether Colin's swallow improves following a weekend of intravenous hydration and re-introduction of the steriod (the latter decision made by one of the doctors here). If there is no improvement then all will be reviewed again next week in what to do next in terms of how to support Colin.

I am typing this by his bedside at St Richard's and he has now fallen asleep - something which he hasn't done all day!

Jane
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What a tortuous week! Gradually, bit by bit, Colin had been coming round, from whatever happened. I use the word 'whatever' as now we are not entirely sure that the seizure was as a direct result of inflamation in the brain caused by the lymphoma. There is a suggestion that the cause was a stroke.

Whatever it was, it has certainly affected the muscles in the face and neck, affecting the speech and swallow. Consequently, Colin has not been able to take his usual meds, has been on a syringe driver containing just something to dry mucous secretions and, up until yesterday,  Midazelam purportedly to prevent fits, although I am rather dubious about that. The specialist nurse at St Richard's Hospice has visited and based on advice from the consultant there (who only saw Colin last week) made small tweaks to the meds to monitor over a 24 hour period. She will review this today. By the way, the really high temperature had returned to normal with no intervention!

The trouble with all of this is that not only has Colin not been able to take his usual meds but also he has not been taking on board any fluids. No one truly expected him to come round from Friday and indeed the on-call doctor told us he was unlikely to last to the end of Sunday. Here we are the following Thursday and it's deja vu - remember what happened when Colin was in Malvern Hospital last year.

So I await advice from St Richard's staff on where we go from here. None of us wants Colin to suffer any more but he is too awake not to take all options into consideration.

​Jane.

Over the last week things have been changing.

On Sunday, whilst I was briefly away for lunch, Colin had what the Sister in charge described as a possible TIA. There had been some twitching which was quite pronounced but this episode was accompanied by a spike in blood pressure. To begin with this didn't appear to have ad any affect, although I had noticed that speech was more difficult to understand. The first 3 or 4 words I could get but then it was as if the rest were being swallowed, as if Colin was running out of energy to finish the sentence.

Then on Wednesday I noticed a weakness in the right arm, which sort of confirmed that a TIA was a possibility. However, things took a certain turn for the worse yesterday. Colin hadn't been quite 'right' most of the day. He had managed breakfast and indeed lunch. Mid-afternoon tea and 'pudding' went down a treat. And then it was time for the weekly bath.  Colin had a seizure whilst being bathed and was unconconscious for about 3 or 4 minutes. 

Since then he has not really come around much, although the nurse at lunchtime today did manage to get Colin to swallow his meds and a drink. The out of hours doctor was called about 7pm yesterday but only arrived at 1.30 today! Colin has a chest infection with an accompanying high temperature. This will not be treated. So we now have a waiting game and the inevitable will happen.

Jane.
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Three weeks ago, Colin starting getting shingles. At first the staff were unsure what it was. As some of you know, Colin has a history of eczema but some of the staff were thinking along the lines of bed sores! However, eventually, they agree to get a GP visit, and shingles was confirmed. It was all along the left leg and some on the right arm. A course of anti-viral was adminstered, and eventually the rash has subsided, although the marks are still there. Colin was kept in bed for two weeks which, whilst allowing the leg to be free of clothing and to get air, was not good for posture, which in itself causes pain in the legs and neck, and makes eating more difficult. Colin was not bothered by the shingles - I don't think he could feel it as the left leg has neuropathy. The other reason for not transferring Colin from bed to chair whilst the rash was blistering, was the fear the the sling used in the transfer would irritate the rash. Which of course made it more difficult to move Colin to another room - and indeed, so far he hasn't been moved. Thank goodness. I have been asked whether the batchroom re-fit work and its noise has disturbed Colin, and given the fact that he has been able to sleep soundly through some terrible drilling noises, I think he has not. When he's awake he tells me he is not bothered by it, so there!

​However, whether from the shingles or a deteriaton in his condition (or both?), Colin has had days of complete wipe-out, i.e. totally asleep and not able to be awoken, by anything. This happened on Monday this week, when his sister and brother-in-law visited, and a old colleague of his. He slept from about 1130 to 1700, and awoke just after his sister had left. Fortunately they were still in the vicinity so were able to come back briefly. Weirdly, Colin could remember the other person had visited, even though he appeared soundly asleep and didn't speak to him! And he had another asleep day yesterday, which means no lunch, and almost no evening meal, as well as no drinks!

So today, I am trying to keep him awake. I don't know if I shall succeed. The bathroom works does not stop him falling asleep, so I probably won't stand much chance if his brain wants to shut down. Eating and drinking require more than just being awake, there has to be an awareness of the mouth for chewing and swallowing, and there is a change to this. That's the scary bit.

Oh, by the way, I acquired a new washing machine, the tumble dryer is working again (something intermittment) and the third party who bashed into my car has paid up!

Jane.

As someone famous once said "it can only get worse"! And it did.

This last week has been truly awful - for me at least. On Monday, the Perrins Manager breezed into Colin's room and announced that "she was giving me a heads up that they would have to move Colin sometime due to the impending work to refit the bathroom next door. The noise would be too much for Colin". She could not say when the work would start or how long it would take. She talked about moving him to West Wing and so I said we would talk again nearer the time. However having had a few words about the accommodation in West Wing, which is a secure dementia nursing unit, I asked the Manager to show me the room she had in mind. It was ground floor, dingy and airless. The only part of that wing which has been refurbished is the corridor cum kitchen and the show rooms! There are currently four residents and one carer on at a time. There is practically no noise and so, with Colin's sight loss, he will think he has been abandoned (he does now when there is no one around) and this causes him extreme stress. As the consultant Ophthalmologist said, Colin needs audio stimulation otherwise it is like being in a torture cell. We have tried radio and music, but both seem to irritate Colin and that might be because they get in the way of him hearing his environment. Also the bathing facilities are not appropriate for Colin's needs despite the managers telling me they are, the carers tell me otherwise. Which on reflection is probably why I and the previous Manager chose the location of the room as it is now.

On Wednesday things got worse. Both managers tried to harass me into agreeing to move Colin to that room. They could not or would not find him a room on the floor where he is currently situated. Then the real reason for wanting to move him emerged - complaints about the noise he makes. Well, he will be shouting all the more in West Wing. Some work has already been done in the bathroom, which incidentally the wall of which only shares a few inches with Colin's room, and that banging etc didn't seem to disturb Colin at all. He is not disturbed by the fire alarm, the vacuum cleaner, the kitchen refit work, other residents shouting or their TVs. What frightens him are the staff shouting at each other in the corridor outside his room - he thinks they are shouting at him. 

I have made contact with the neuro nurse for help to get some liaison with CHC, who are visiting in a weeks time. But even on Friday, both managers together tried again to force me to agree or they would make a judgement call i.e. ignore the fact I have POA for Colin. Following another call from me to the neuro unit, the argument change.  Management are now "compromising" and will see in the first week of work whether this disturbs Colin. I don't want to see Colin disturbed in any way and so another room on the same floor would have been OK. But West Wing is another matter entirely.

I have generally not touched on the challenges of each day, but regular visitors will know that Colin does get distrested,  and usually this is about toileting and not wishing to embarass himself in front of his visitors. He will  get distressed when he can't follow what's going on, too many people talking at once is confusing despite some visitors thinking it a great thing!

And if all this is not enough, my washing machine gave up the ghost in the middle of a hot wash, the tumble drier wouldn't dry and the silly woman who drove into my car back in March won't admit liability and so I am having to issue court proceedings. 

Life is just great isn't it.

​Jane