A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 23 September 2015

Opportunity in the tough times

It is never good to be ill. It is particularly bad to be ill enough to need to be hospital. It is even worse to need to go into hospital when you're meant to be on holiday. Quite honestly, it pisses me off. However, given that I have ended up in hospital whilst on holiday in Cambridge, it seems that I couldn't have ended up in a better place, even with all the negative press that Addenbrooks is getting at the moment because of their financial situation. So far I have nothing but praise for the care that I have received from every single doctor, nurse, and health care assistant in every ward or department I've been in.

I try not to let my asthma restrict me too much in terms of going on holiday. Okay, so I haven't been able to go abroad for several years, but I still try to holiday in the UK when I can. But my asthma doesn't dissappear when I go away from home and it is always something of a risk to be away from my home medical team. I take that risk for the good things that a holiday can bring, but it means that I do sometimes end up in hospital away from home, like now.

Usually the 'foreign' hospital's priority is to get me through and patch me up so that I'm well enough to go home. That's fair enough. But here at Addenbrooks they actually want to do more. They want to look into my asthma more deeply, see if there's something else driving it all, see if there's something more that might be able to help me. This is amazing.

The consultant looking after me at Addenbrooks happens also to be the personal physician of the eminent physicist Stephen Hawking, so I think I'm in safe hands. He is an incredibly nice man as well as an excellent doctor, and all the way through has been checking with me that what they're doing is okay with me and what would usually be done by my home team. Yesterday he came to me and asked if it would be okay to ask Addenbrooks' difficult asthma expert to come and see me. He said there was no pressure on me at all to agree, but I have jumped at the opportunity for a second opinion. It isn't because I in any way disrespect the opinion of my own consultant at home or don't think he's doing a good enough job, but because this is a chance for someone to look at my case with a fresh pair of eyes.

My own consultant at home is an expert in difficult asthma, but he hasn't been able to come up with any new ideas for me for a long time. It might well just be that there aren't any new things out there, or old things that haven't been tried. But it might be that a fresh pair of eyes can see the possibility of something that might be able to be tweaked, and it might be that a small tweak could make a big difference.

Addenbrooks' difficult asthma expert came to introduce himself to me yesterday evening, and he's coming back this afternoon. He has set aside two whole hours to see me, go through my asthma/medical history, assess me. He is coming in a little over an hour for that consultation, and whilst I am somewhat nervous about it, it also excites me. This is a real opportunity that I must take, and was most unexpected. I am astounded and delighted at the medics here who really do want to do everything they possibly can for me, and way beyond the patching up and sending home that other 'foreign' hospitals have done.

It is not yet clear whether or not Addenbrooks would be able/want to form an official collaboration with my medical team back in Newcastle, but they haven't immediately dismissed the idea. I think it could be useful to have a second team on board that can look at things periodically and see if they have any fresh ideas. This needs more discussion, and probably discussion with my home team too.

So, for all that it is horrible to be in hospital, especially when I'm supposed to have been on holiday, it has brought me some unexpected possibilities that are potentially very exciting.

Monday, 21 September 2015

Long time no see

It's a very long time since I last posted, for which I apologise, but a lot has happened this year and much if it has been very difficult. I will update you with all the happenings over time, but at the moment I need this space to write because I am in hospital whilst away from home.

I was on holiday. I had a brilliant week in Wales the week before last, then came across to Cambridge for a few days here. I managed a couple of days in the youth hostel and then ended up here in Addenbrooks. I'm on day seven of the admission now, but the first six days were in the Critical Care Unit. I am a lot better than I was, but still have a way to go before I can think about leaving hospital and then getting home to Newcastle.

Earlier today they moved a woman into the bed opposite me (here in the respiratory ward). Someone else was there before, but she was moved into a side room so that this woman could come in. That is a very usual practice, except that, in my opinion, this woman ought to have the side room. She is dying. Her family have been called in and they are taking it in turns to be with her in small groups. The curtain is pulled between her and the lady beside her who has the television on and distracting herself with the news. It is filling any silence there might be. The doctor is in the corridor with the rest of the family and giving them information about their relative's situation. The teenagers are crying. The young children are bemused. The adults are trying to stuff their emotions back behind their eyes and keep that typically British stiff upper lip. They talk to the woman, ask if she wants a drink or some yogurt, tell her to lift her head so they can move her pillow. They are trying to help her be more comfortable, and trying to help themselves feel in some way useful.

I don't want to watch this woman's death. I don't want it for me and I don't want it for her dignity. Everyone ought to have privacy and dignity in death, and this is too public.

Sunday, 3 May 2015


Oh, it's so long since I posted, but given all that was going on at the time of my last post, perhaps you understand some of why I haven't blogged.

As you have probably guessed (or perhaps hoped), I have been discharged from hospital since I last posted.  I had a long admission with a very, very slow weaning of the aminophylline, which went smoothly, but given the upset of my father's death shortly after I was moved from ITU to the ward, we all wanted to be sure that my lungs were going to cope with the reduction in IV and its replacement with the tablets.

Asthma is most definitely a physical illness, but like many illnesses, it can be affected by emotional upset and distress.  This doesn't mean that it's psychosomatic or 'all in the mind', just that physical and emotional well-being is intertwined, and asthma can become worse with both repressed emotion or expressed emotion.  Laughing or crying can both induce an asthma attack in some, including me, which seems most unfair.  When I was in hospital this last time, and out of ITU, I was trying to recover from a terrible asthma attack whilst also trying to find a way to grieve for my father without undoing the healing that my lungs had thus far done.  One of the junior doctors came to see me one weekend evening, still doing her ward round.  I poured out some of my upset that most of the time I was trapped with on my own, and as I forced back some of the tears she said, 'There's no harm in crying and letting some of it out.'  I replied that I wanted to and needed to, but the harm might be that it could set off the asthma again.  She held my hand, which was enough to tell me that she understood that dilemma and that fear, but didn't have the words to make it right.  I'm glad that she didn't try to make it right.  Through a series of comments and observations on both our parts I established that she was a Christian, and I asked if she would pray for me.  She told me that as a doctor she has to be careful about not imposing her beliefs on others, but as I had asked then of course she would pray, and she did.  This lovely young doctor sat with me in my hospital room, with my upset and distress very much on show, and prayed, and it was exactly the right 'medicine' for me that evening.

After my week in the Intensive Care Unit at RVI, I had another three weeks on the ward at the Freeman Hospital.  It was a difficult discharge, not so much because of the asthma, but because I felt like I'd had everything knocked out of me - physically and emotionally.  The one thing I was holding on for was cuddles with Isobel Artemis, my gorgeous kitten.  I had actually seen her once during my admission when a collaboration between my friend J, who was looking after Isobel, and N, the hospital chaplain, meant that J was able to bring Isobel to the hospital chapel (with the permission of Infection Control), and N was able to trundle me down there from the ward in a wheelchair.

I was so looking forward to seeing Isobel Artemis again and giving her masses of cuddles because I'd missed her so much ... but when I got home she wasn't there.  J said that Isobel hadn't been at home when she'd come in to feed her that morning, but we waited in hope that Isobel would return.  Isobel hasn't come home.  She's still missing almost eight weeks later.  I have been so lost without her and every day I wish she would saunter in through the cat flap as though she doesn't know what all the fuss has been about, but every day there is nothing.  I have registered her as missing with the microchip company so that we will be reunited if/when she's taken to a vets or shelter that scans for microchips.  I have registered her as missing with the company Animal Search UK who have put her details on her website and Facebook page.  They've also produced this poster.

 I've put up forty five of these all around the area, plus dropped about 2000 similar flyers through letterboxes in the area.  I've been out calling her at all different times of day (and night).  I've emptied the vacuum cleaner out in the back yard and tied a piece of my clothing to the back fence as both these things carry my and her scent so are meant to attract her home if she's anywhere nearby.  I've contacted the dog and cat shelter, and put her details on every appropriate Facebook page that covers the area.  I've contacted several vets practices in the area.  I've had a few calls from Animal Search UK with possible sightings that I've followed up immediately, but they've turned out to be other cats or nothing at all.  Nothing.  It's like she's just vanished.  The vet receptionists think that, given all that I've done to try to find her and there's been so little response, she's most likely been stolen.  I can only hope that she is eventually scanned for a microchip and discovered to be missing from me.  I long to have her home.

I will never give up on getting my precious Isobel Artemis home unless I get a call to say that she's been found dead, but I'm not good at having no cat in my life.  I'm going to get another kitten.  J has a grown up nephew who has cat who had kittens thirteen days ago.  I would like another little girl kitten if possible, and in a couple of weeks J's nephew and I are going to take the four kittens in Daisy cat's litter to the vet to be sexed.  One of the kittens is a little calico so is almost certainly female, the other three are tabbies like Daisy, and I'm kind of hoping that one of them is female too as I think I'd quite like a tabby.  Anyway, I went to meet all four of them when they were just two days old.

I can't tell from the photos which is which, but I do know that all four of them appear in these photos.  Let me know if you can tell the difference between them.  They'll be much easier to tell apart the next time I see them at four weeks old, and I'll hopefully be able to see more of their personalities too.

So, the other departure, the one I've been avoiding saying much about.  Dad.  We had to wait a month after Dad had died until we could have his funeral, in part because of a backlog at the crematorium.  It was a difficult day, and actually I don't want to say very much about it ... Although I will say that after the funeral and the wake I had a really good family time with my mum, step-dad, my brother M and his family, and my brother C and his family.  M and family were staying in an apartment hotel (a hotel comprised of little apartments, with self-catering facilities as well as food/drink that can be ordered and brought to the apartments) that we all congregated at both between the crematorium and wake and after the wake.  The children were able to run around inside and play together, which they all needed as there isn't much scope for that at a funeral.  The rest of us sat and chatted, and remembered Dad, and then we ate and talked about 'normal' things too - things that weren't about death and dying, or the people we've struggled with through the whole process, or the difficult aspects of Dad that were ignored in the wake remembrances.  We enjoyed being together and being a family, and you know, since then we've perhaps had more contact with each other than we had before.  Maybe it won't last, but at the moment it is good, and that is the positive that's come out of Dad's death.

Wednesday, 4 March 2015

End times

Dad died the day after I wrote my last post. I asked the doctor if I there was any chance that I could go and say a last goodbye, but I wasn't well enough or stable enough. I know the consultant was right, but it's still impossibly difficult that I didn't get to say goodbye.

The last time I saw Dad was a couple of days before I came into hospital, although up until then I had been visiting him every day. I got a virus and didn't want to risk giving it to Dad so I stayed away, but when I last saw him I'd fully expected to see him again. Alive. I didn't know that the seemingly innocuous sore throat that I woke up with on the Tuesday was suddenly going to turn on me and have me almost dead by Thursday.

I woke up confused, not knowing whether to see a doctor or not, so I put it off so as not to be a nuisance. My mum phoned me in the afternoon, said I sounded awful, and I told her my dilemma. She said that if I was in doubt about whether or not to see a doctor then I needed to see a doctor - "That is the rule," she said.  So I rang the surgery, apologising for calling late in the day (3.10pm) when I knew it was unlikely they'd have any appointments.  Much to my surprise I was given one for twenty minutes later.

I waited fifteen minutes beyond my appointment time before being called through to the doctor, but almost as soon as he saw me he was calling for an eight-minute, blue light ambulance. In my confusion I was surprised. It frightens me that I am so poor at realising how ill I am, however many times it happens.

The paramedics ignored my calm demeanour and misleading numbers, correctly reading the calm as a sign of a life-threatening asthma attack, and the numbers as a tiring asthmatic who is too used to the scenario and is on medication that affects some of those numbers. They bundled me into the ambulance, miraculously got a cannula into a vein in my arm, and gave me hydrocortisone, adrenaline,  chlorphenamine, and several nebulisers. They strapped me firmly onto the stretcher, then tossed us through the streets with flashing lights, screeching sirens, and blaring horns. The journey to the city centre hospital took no more than five minutes, during which time the paramedic called ambulance control to give the A&E department warning of our imminent arrival.

I was taken straight into resus, where I was greeted by the waiting doctors and nurses, and was there only minutes before the ITU team were being called. An aminophylline infusion was started, blood gases were done, bloods were taken, an x-ray was done, the anaesthetist arrived, they all hoped the aminophylline would start to work quickly, but it never does. It works, but with me it takes a while, a long while. Hours. Time wasn't on my side and I was taken to HDU, but only in passing, because as soon as the anaesthetist consultant saw me he had me moved to Intensive Care.

I spent a week in ITU on BiPAP, all the while receiving texts about my dad's decline. The nurses rang the home for me to enquire how Dad was, but they never told us anything useful, and the real information came from Dad's wife - the news that his respiratory nerves had started to fail, he was breathless and distressed, time was running short. I was useless. I was struggling myself to keep breathing, and I couldn't be with him when I wanted to be.

I was moved to my usual ward, teansferred by ambulance from the hospital in the city centre to the one in the outskirts. Moved to the ward that is my second home and the staff are like family and friends. I was closer to Dad than I had been, but I still may as well have been a million miles from him. I so desperately wanted to be with him, to hold his hand, to say goodbye, to see him one last time, to see him as I had expected. It didn't happen.

At 12.25pm in the afternoon of Sunday 22nd February I received a call on my mobile, while I was lying in my hospital bed, to say that Dad had died just five minutes beforehand.

I hadn't been there. I hadn't been able to say goodbye. I hadn't been able to hold his hand. I hadn't been able to see him again as I'd been sure that I would. I still wasn't well myself.

More than a week later, I am still in hospital. My lungs are much better, but I am not coping terribly well with Dad's death, my own near-fatal asthma attack, my time in ITU, a whole host of emotions, and trying to think about Dad's funeral. I have a room on my own, and I'm ever so thankful for the privacy, but I still don't have the space to grieve. My day is dictated by the functioning of the ward, and all the while I'm here I'm watched. I need now to be home, except that I'm also fearful of going home, of the suddenness of my decline (again), and to be alone with my grief for the first time.

Saturday, 21 February 2015

Very briefly

I am in hospital. I've been in ten days now, with a week in Intensive Care. I am mending, but still pretty poorly and completely exhausted. At the same time my dad is in a nursing home four or five miles away. He is dying. His wife and my brother have been called to his bedside this morning. He is in the final throes of life and death. I can't be with him and I can't say goodbye.

Saturday, 3 January 2015

Review of 2014

*peeps around the corner*
*whispers* Hello... I'm still here... I've been a bit busy... Sorry about that.  I'm back now, and I intend on being more productive here this year.  In the meantime, seeing as I'm here, I'm going to do my annual review of the year, but seeing as there's not a lot of point in reviewing this year, with only being three days into it, I'll do the more typical thing of reviewing the year that was, using the same questions I set for my previous Review of the Year.

1. What has been your biggest achievement this year?
Probably gaining a position as a lay reviewer for Asthma UK.  This is a new thing for me, only gaining it three or four weeks ago.  I was one of many applicants throughout the country for about five lay reviewer positions, and went through a process of application form, short-listing, telephone interview, and selection.  I was greatly surprised and hugely delighted to be successful, and I'm looking forward to getting started in a few weeks time.  It's a voluntary position that I can do from home, will involve a lot of reading, and some teleconferencing.  As a lay reviewer I'll be on a panel of other lay reviewers, scientist, and medics, who will collectively decide which of the many research proposals put forward to Asthma UK are granted funded from the charity.  It means a lot to me to have got this position, because it means that finally my experience and knowledge of asthma will be put to good use, and has potential to be a part of something that changes and develops treatment and management of the disease.
2. What made you laugh most this year?
Hmm, I always seem to have trouble with this one.  It's not that I don't laugh through the year, it's that I have trouble remembering what the hilarity was about.  Let me think...I know that I've had some very silly conversations with my mum through the year that caused us both a lot of laughter.  Again, I can't remember what these times were about, but most likely they were plays on words that probably ended up being a bit rude ;)
3. What unfulfilled hopes do you have for this past year?
Writing.  I didn't get much done at all this past year, which my blog reflects with only four posts for 2014.  I'm sorry about that, but I'm mostly sorry that I haven't been in an emotional place where writing has felt very possible.  I'm still emerging from the horrible thing that 2013 was, but I'm a great deal better than I was this time last year, and I'm hopeful that I will be able to write this year.
4. What has been your favourite/most listened to piece of music this year?
I have an eclectic taste in music, my listening has reflected that, but certainly at the back end of 2014 I listened a lot to the Peter, Paul, and Mary track 'Jane Jane'.  It's a piece I first sang as a teenager with the Swing Bridge Singers, and which I've been singing again this autumn and winter with my current choir, Flotsam.  I love it, particularly the arrangement we do by Scottee (MD of both Swing Bridge Singers and Flotsam).
5. What was your best holiday this year?
I had a few trips up to Edinburgh through the year, but my only real holiday was a family holiday to Shropshire in May for my mum and step-dad's seventieth birthdays.  It was very lovely, and great to spend time with all the family.
6. What new skill, if any, have you acquired this year?
Crochet!  I had decided that this was something I really wanted to learn in 2014, and then in February/March my friend Ruth said she also wanted to learn.  Ruth had a couple of months off work recovering from surgery so we got together during that time and taught ourselves to crochet from a fab little book I'd bought. We learnt all the basics together and then went our separate ways with it, and now I'll give almost anything a go.  I am completely addicted and find it very relaxing.
7. What's the best book you've read this year?
I think probably 'The Music Room' by William Fiennes, which I was given for my birthday.
8. What has been the biggest challenge of this year?
Emotionally surviving.  There has been a lot of stress and unhappiness in the last twelve months, with several deaths, and a number of very difficult situations.
9. What is your happiest/fondest memory of this year?
Hmm, despite the upsets and difficulties of the year, there have also been many good things.  I have lots of lovely memories of times with friends and times with family, especially my nephews.
10. Of what one creation of the past year are you most proud or pleased?
Probably some of my crochet creations, and probably one of these:

11. What new hobby did you take up/old hobby did you reinstate this year?
I took up two hobbies this year, one I've already talked about - crochet; the other is geocaching, which is basically an on-going international treasure hunt using GPS.  I love that it gets me out and about, discovering new places (even locally), rediscovering old places, even just going to places I usually go to but looking at it a different way because I'm on the hunt for the 'treasure' - the cache.  I've also enjoyed setting a couple of caches myself and making some new friends too.
12. What one thing would you really like to do next year?
I'd like to write.  I'd like to make good progress with my book.  I'd like to crochet some warm hats, scarves, and gloves/mittens for homeless folk.  I'd like to find all the mulitcaches in the city centre.  Lots of things, not just one thing.
13. What was the saddest thing of this year?
Oh, lots of death at the beginning of the year.  It started with the death of a friend of twenty-five years and more in January, then the tragic and unexpected death of one of my cousins at the beginning of April, and nine days later the death of my gorgeous and ever-characterful cat Zachariah Zebedee.
14. What has been your best discovery of this year?
In a very literal way, I was delighted to discover a particularly tricky geocache at East Cramlington Nature Reserve, in fact it was the first one I went hunting for there and it took me at least 25 minutes to locate it.
15. What news story of this year has had the biggest impact on you/do you most remember?
Gosh, there have been so many terrible things in the news ... I think the bleakness and such widespread impact of the Ebola crisis in Western Africa has been just terrible...still is terrible. 16. What's the best film you've seen this year?
I didn't see many films at the cinema this/last year, but I did see 'What We Did On Our Holiday' and absolutely loved it.
17. What was your best buy this year?
Isobel! My gorgeous kitten.  Strictly speaking I didn't buy her because she was bought for me by some beautifully-hearted friends, but I think she still counts for this question.  Here she is lying on my legs last night.

18. What has been your best day out this year?
You know what, I've had many good days out this year, a lot of them doing geocaching.  I had a fabulous day with my new friends Helen and Carrie doing geocaching in the Tyne Valley, and another in Chopwell Woods.  I had a great day geocaching up near Morpeth with my friend Ruth too.  However, I think all the fabulous days I've had geocaching are just about pipped by a day with my dad at Rising Sun Country Park.  It was so special to spend some time with him, just the two of us, and to see him enjoying himself.
19. If there’s one thing you did this year that you’d do differently if you could, what would it be?
I'm not sure ... There was something that came up in my therapy sessions with my psychologist that caused me a great deal of stress as it looked as though some old demons might be forced to the fore.  I had several weeks of stressful uncertainty, and perhaps I would approach things differently if I were to go through that again ... but I'm not sure that I would have any choice in the matter, as I don't think I really did this time.  Difficult.
20. Is there anywhere you'd like to visit next year?
Um, possibly Derbyshire.  I spent a few nights in Derbyshire at the end of my Dorset holiday in 2013, but there's a lot of it to see and I wasn't there long enough to see very much of it.  Also, the triceratops hat I made (shown in one of the photos above) is for the young son of a friend in Derbyshire so it would be lovely to give that to them myself.  I would also like to visit my brother and family who are in Cambridgeshire, especially as they gave me identical twin nieces as an early Christmas present at the end of November.

21. Name one thing you did this year that you'd like to do again?
Take Dad for another day out.  It's not easy with my limited mobility and Dad's own disabilities, but we did manage it a couple of times in 2014, and I think if I find the right places to go, it should be possible again.
22. Who gave you the best advice this year?
Probably my psychologist.  She's helped me through a huge amount of stress, difficulties, and upsets through the year, and at times that's included giving advice for management and survival between appointments.
23. What new skill would you like to acquire next year?
I might like to try Tunisian crochet, which is sort of an extension of crochet knowledge, whilst also being a new skill itself.
24. What was your favourite TV/radio programme this year?
Oo, there's been quite a lot of good telly this year.  I really enjoyed 'The Wrong Mans', and then there was ... oh, what's it called? It was set in Yorkshire and had what'shername in as a police officer ... 'Happy Valley'!  Yes, 'Happy Valley' was great too.
25. What would you like to make more time for next year?
Two things - writing, and my dad.  If I am to try to write I need first to make time for it, even if I sit doing nothing for a while before I find a way back into it. As for Dad, I haven't made enough time for him in recent months, mainly because I find it so upsetting to see him in such a deteriorated state, but I'm also aware that it's the coward's response to avoid the difficult things.  I want to make the most of whatever time he has left, but I also want those times to be good.  I find it particularly difficult when I go to see him in the care home and I'm searching for something to talk about and not knowing quite what response I'll get from him, so I want to take him out.  I want to take him places I know he will enjoy, but where I can manage him too, places we can enjoy together, that just being there initiates conversation, places that will form good memories together.
26. What has been the biggest disappointment this year?
I'm not sure.  To be honest I can't immediately think of any major disappointments, except that of not writing.  I'm sure there have been things that I've missed due to illness that I was disappointed about at the time, but I can't now remember what they were.  Perhaps that's a good thing.
27. What was the best or most enjoyable concert you went to this year?
I haven't been to many concerts in the past twelve months, but I did go to a great one of music from Oscar winning films, hosted by Barry Norman.  The concert was at Sage Gateshead and I went with my friends Rachel and Marc.
28. What do you think was the best thing that you did for yourself during the last year?
Went to see my GP early when I suspected I might be developing diabetes.  I was lucky that it turned out I had Impaired Glucose Tolerance, rather than full diabetes, when I first went to the doctor, but my early action meant that it could be watched closely, so as soon as it reached a level that diabetes was diagnosed, the wheels of diabetes management/education could be put in motion. 
29. What is the biggest difference in yourself from this time last year?
I'm not as depressed as I was.  In fact, I'd say that I'm low rather than depressed, and not so low that it often causes me a great deal of distress.  I hide myself away sometimes still, which is counter productive, especially as I sometimes find myself getting lonely too...
30. What are you most looking forward to about next year?
Meeting my twin nieces, starting the Asthma UK lay reviewing, getting out and about with more geocaching, hopefully with friends.