Please read her story
{written by Insa when we started the site in March 2001}
Welcome to my Hospital news page, thank you for your continual support - it means a lot to me through this
difficult time. On 1st Feb I was taken into hospital with a suspected blood clot in my leg but was diagnosed as
having Ewings Sarcoma and received Chemotherapy within 2 weeks of entering hospital. The Hospital (and
especially the Beatson) have been superb - don't knock the NHS until you try them - they are there for you.
NEW EASIER ACCESS SITE ADDRESS - www.cairnleck.co.uk/nigel/insa/htm
News From The Beatson Clinic
(The next few diary notes were in a book that I found clearing up her hospital baggage)
1st February
Woke up to a right leg swollen to twice its actual size. Called Doc Wallace who is heartily confused by the leg, palpitations
and a completely normal blood pressure. He sends for an ambulance to the Western Infirmary. It's late and well crowded but
the banter is hilarious! A&E take me in and put mum in the waiting room (with friendly helpers inc a german doc). They take
my blood, urine, more blood. I get injections, x-rays of lumber spine and chest. I'm told my combination of symptoms could
mean two things : a clot in the leg and a clot in the lung or a clot in the leg and an infection in the lung. They'll take
the tests to the lab and give antibiotics to see if the lung improves.
2nd February
Sleepless night almost through Elspeths talking. Quite of hours but by special permission Stewart & mum are let in. Stewart
is crying, my poor wee baby! Man says that it's most likely an infection. Mum & Stewart turn up again to cheer me up immensely.
So now, Big Fu**ing bombshell. I don't have a blood clot in my leg - I have an unidentified but quite potentially cancerous
"mass" pushing down and blocking a vein. Private room tonight apparently. I AM SO TERRIFIED! WHAT IF IT'S CANCER? I DON'T
WANT CANCER! HOW LONG WILL THIS GO ON?
Oh where are mum and Stewart? Oh god, and how will they feel when they are told that I might be so much more seroiusly ill
than first suspected? Please come here and cry with me, and start praying, it could just be a very rare mass of some sort.
Othopedics never found anything unusual. HELP ME. PLEASE PLEASE HELP ME! I DON'T WANT TO DIE! I WANT TO LIVE! I WANT TO LIVE
AND BE WITH MY STEWART AND GET MARRIED AND HAVE KIDS AND WRITE BOOKS! PLEASE LET ME SURVIVE THIS, OH GODS I HAVE TO SURVIVE
THIS! I'VE GOT TO! I'VE GOT TO! I'VE GOT TO! LIVE! LIVE! LIVE!
3rd February
New visitor : Gail. Everyone is being so nice, just spending day chatting. Doc Gillian helps rearrange mum's flight by letter.
Mum stays - I got some sleep too.
4th February
As above. They decide to move me to the cancer ward. Oh it's all fancy equipment & crap, but the staff are nowhere near as
nice. A new matress to relieve my pain? Oh no, we can't do that - we need an assessment first - a F**king assessment. Well
not all the staff are bad. When I just couldn't get to sleep Dione stayed with me and talked to me for ages.
(Insa never wrote in her dairy again until we got the laptop - during the next while she got critical and pulled through.
The Doctors had given 5 days to live on 14th February and we got her Dad over from Germany. Her notes continue when she started
to get better.
1st March
Been through first chemotherapy and secound bout will hopefully be next week if I have recovered enough.
Legs still not moving yet but I have been in a wheelchair (by hoist) and been outside for brief spells of fresh air.
2nd March
Another tiring day - hair yesterday, gone today. Decided to get it shaved
instead of finding hair all over
the place. Bit of a shock for me and my hospital visitors!
3rd & 4th March
Best friend from Germany came to visit. Was again very tired.
5th March
Eh - my mood is best described as being very angry. Why can't I control my movements. For 3/4 days I have
had reflex muscle spasms in my legs - it is really annoying that I can't control them and move myself.
6th March
2nd Chemotherapy course will start on Wednesday 7th. I am hoping that it will not be as tough as last time but
I still expect that I will be very exhausted again. Please phone if you are thinking of visiting. I am
getting into a wheelchair again today so that I can get some fresh air before I sleep for ages - that taxi rank
and the fumes have never been so refreshing.
9th March
Chemo started on the 7th as expected. Now midway through the course - it has made me very tired again but
I am sleeping well at night - which is a good thing. Unfortunately drugs tire me out through the day as well.
This makes my new daily physio regime a little more difficult but I am determined to get my
independence back so I try to do it even when I am half asleep. I am now pulling rubber bands from the top of
the bed, waiting to work my way from the green to the black belt in rubber pulling. Wish me luck.
12th March
Chemo ended Saturday, this time round it seemed to affect me mentally. I was very weepy over the weekend!
Side effects manifesting themselves in hot flushes and being wide awake at night. Went out to the
park yesterday but got caught in the rain! Sun's out just now, and I'm hoping it will last so we can spend
some more time outdoors. Fresh air!!
Other news is that there was a so-called development meeting about my
mid-term future today. This meant all the doctors, physios, social workers etc discussing how my life
is best organised. We'll have to look into finding a new home as I'll be in a wheelchair for a long time.
The prof said it might be for the rest of my life, but I'm not having that!!! In the meantime though I
keep busy building those upper body muscles (I'm moving on to the blue rubber bands today!).
Determination is everything!
13th March
Sniff. Stewart's away to work for a couple of days and the hospital have removed my lap-top.
Site won't be updated as regularly - but Stewart will do his best!!!!
Spent 6 hrs in chair yesterday and I am getting a blood transfusion today so I'll not be up today. Still trying to cope with
yesterday's news.
16th March
Went to the gym again today. Managed to use the beach ball to roll forward about 20 times and they helped
me do a transfer from my wheel chair to a bench. They did most of the work but it showed me what I need to learn
to do. Social worker was round and there does not seem to be any suitable housing in our area so we need to
look elsewhere. Also had a visit from the wheelchair man to fit me for my new wheels. Feeling good.
18th March
Bad day. My white cell count and neutraphils are low meaning my immune system is knackered – so I am
not allowed out into the park - it is a lovely day and I am very disappointed.
19th March
Mum flies back to Germany today and Stewart leaves for a couple of days of work in Liverpool. White cell count
is back up but my red count is done so I need some blood transfusions – this means I’ll hopefully be bursting
with energy. Went to the gym and couldn’t do much as I was very tired and not having done any physio over the weekend
it was
hard work. My
support doctors said that I should get my lap-top back for a while.
20th March
Spinal injuries person from the Southern General hospital visited me today – more news on this later.
Quite a few visitors and Ian (Stewart’s brother) took me out in the wheelchair for a quick breathe of fresh air.
Gym work out was better today.
21st March
Very tired today but I'll need to get my energy to go to the gym. Missing Stewart.
25th March
Quite a few things on the news front. Let's update you on the spinal injuries thing first. They can't put me in the unit while
I'm receiving chemo, but I got some good advice and suggestions for exercises to help me become more independent. They also
said that with my kind of injury there's a 20-30% chance of walking again! Ha! I just have to hold on to that thought…
One
of mine and Stewart's new things to do is scouting restaurants for disabled access. We went to the Kelvingrove Art Gallery
for lunch and also had a look at two photo exhibitions. Found out that disabled lifts can be either very well or very badly
constructed. My friends Ellen and Kerstin came up from Germany at the weekend, and we went out for a lovely evening meal at
a restaurant near the hospital. I don't think I've eaten that much in a long time. Just goes to show what decent food can
do!
And the last bit of big news is that I'm moving to a hospice after the next chemo. If all goes well, I'll be in Hunters Hill
Hospice on 2nd April. I'm told it's a very nice place, and they have internet access in their library. Their nurse/patient
ratio is somewhat higher than here, so there's more individual care. Their physios will keep me working on those transfers
(I'll need to learn how to get into a car as the hospice is nowhere near anything), although it has, at least, a garden (done
over by Beechgrove). My wonderful palliative support team are trying to get me a single room again which would mean I could
take my harp. I'm told Hunters Hill try very much to make their patients feel at home and give them a sense of normality.
That's just what I need - I'm getting so fed up with being in hospital. As nice as everyone is, 2 months is a long time, and
I really need a change of scenery!
28th March
I seem to be doing well in the doctor's eyes so my third chemotherapy started yesterday - a day earlier than planned!! As
a result I am feeling tired and am flaking out very early in the evening - because of this four visitors from Ottakars were
sent away,sniff. Still trying to work out hard so that my muscles are strong (All the better to hit me with - SK). The sister
has organised a relexology / Reiki person to visit me on Friday - I can't wait. A homeopathic doctor visited today to organise
some homeopathy medicines to combat some of the side effects that I am getting.
1st April
It's been a bad few days, I've been very weepy again, thinking about life, death, the universe and everything. There was a
mixup with the Reiki practitioner and I was sent an aromatherapist instead who was only allowed to massage my arms. It was
nice, but obviously not what I had hoped for. Add to that the general side effects of the chemo, the fact that the palliative
support team and the physio were on holiday and that Hunters Hill will happen but certainly not tomorrow or the day after,
no fresh air for days, and maybe you can imagine why I've been feeling pretty low. Well, things are looking up a wee bit with
palliative support and physio back from tomorrow, my parents coming up next week, and the visits to the park (we try and catch
the sun when we can!). I hope I get out of the hole I dug myself into over the last few days, so watch this space...
3rd April
I moved today!! They managed to get me into Hunters Hill - the Marie Curie Hospice. It is wonderfully quiet. Still unpacking
with Stewart - I seem to have amassed a lot of clutter in my time in Hospital!
4th April
Started working out with the physio and had a jacuzzi bath - the quietness is great.
5th April
Very bad news - white count went down too far so I need to go back to the hospital (SK - Insa seems devastated)as the Hospice
are not able to deal properly with the situation. Aaaaaaggggghhhhhhhhhhhh.
6th April
Well, here I am back in the Beatson roasting with a temperature and wishing that I could have a hammock to sleep in so that
I could get fresh air all around me. I don't know how long I'll be here, hopefully no longer than two or three days. It all
depends on how my blood counts improve (No white blood cells = no immune system). If that wasn't bad enough, I have a throat
ulcer - another common side effect of the chemotherapy - it means I have difficulty eating & drinking anything. In here the
foods not too bad but the Hunters Hill Hospice seems to have food prepared with a little bit more love and effort. Let me
recover from this setback (SK - sidestep not back!) and I'll keep you updated and let you know when I can have visitors.
12th April
After a five day spell on intravenous antibiotics (neutropenia with added streptococcus infection this time) getting back
to HHH felt almost like coming home. It has been a bit busy with lots of people wanting to meet me - doctors, physios, occupational
therapists, student pharmacists,doctors dog (you can also get your pets to visit you here!!), etc. My parents are back in
the country over the Easter holiday, they've spent a few days with me and are now travelling somewhere in Scotland - they'll
be back in time for Easter Bunny Day and the next chemo (Tues 18th). My white cell count has gone a bit haywire again - from
neutropenic (very low) to 43 when the average is 7 to 11!!! - this means they are keeping a close eye on me re infections.
They think it is only the growth hormone stimulant that they give me for my white cells - so there is nothing seriously wrong.
Anyway - I have absolutely no intention of getting sent back to the beatson any earlier than Tuesday morning.
13th April
I met HHH physio number two today - she got me to transfer from one wheelchair to another with the board from hell ( wooden
with grip handles in the middle - for carrying - not for using as my sore fingers soon showed!). It was also a transfer from
soft surface to soft surface - which is more tricky - and to make it worse my trainers kept getting stuck in the wheels!!!
She left me with lots of homework which I am trying to do - pushing myself up from bed & chair so that I rest on my arms -
I get a bit further each time so I am happy. The food here is much nicer than at the hospital. They made a yummy herby garlicky
veg lasagna just for me (wish I could have eaten more, but I'm still finding it difficult after a throat infection that hardly
let me swallow anything for five days - includiong drinks). Today for lunch I had scampi, chips & peas - and even some red
sauce on it! Felt like I was having a good pub meal....
16th April
Yesterday I had my first hangover in a very long time - from just half a pint of beer (cheap rounds!) Stewart brought in a
bottle, a home made pudding and the Billy Elliot video - for a few hours I just forgot I was ill. During the night my temperature
went up again - not much, but Ms Worryclogs here only stopped panicking when my mum and the nurses agreed it may have been
caused by the alcohol!! Plus a rotten feeling in the morning reminded me of a hangover! Next chemo starts Tuesday night -
I am "looking forward" to it with the usual apprehension. Hopefully this time I won't get so depressed and will keep up my
exercises. I can change my position slightly in the wheelchair now with lots of effort & gritted teeth - all I need to do
now is learn to do that in the bed - trickier without the knowledge that there is back support ready to catch me. Keep your
fingers crossed for me - if you want to visit call Stewart or the Beatson - probably won't be ready for visitors until the
weekend and will hopefully be back at the Hunters Hill Hospice early next week.
17th April
Back at the Beatson where some imaginative people had got me a dry cheese sandwich and a plate of potatoes for lunch - and
a roast beef sandwich (!!!) and a plate of chips for dinner. Welcome to the culinary world of the Western Infirmary. After
a walk in sunny Kelvingrove park I'm now hooked up to chemotherapy No 4 - things that go beep in the night - gone that peaceful
hospice sleep. Well I'll get through this too. Hopefully my blood counts won't freefall this time and I can stay at the hospice
for all the time after this chemo until next chemo - if things go well I'll return to the hospice Friday pm or Saturday am.
Wish me luck!.
23rd April
Oh well - chemo number 4 ended on Friday but thanks to a transportation mix up I only got transferred back to the hospice
early afternoon today (monday). On the bright side I'm back here at HHH and I'm determined to stay the full two weeks this
time - al digits crossed. I have now also got my own dinky wheelchair which is a lot easier to move around in than those hospital
issue owns. Oh, I have also now progressed to pulling the black rubber bands (what's after a black belt?)and I'm doing push-ups
(single) in the wheelchair. I just wish those muscles were more visible and I still need to put more weight on - more chocolate
binges required - teehee! I'll finish off on that cheerful note (you would not have liked last weeks downbeat mood) and you
now how to get in touch if you want to visit, speak to me, mail me etc.
28th April
It has been a couple of rollercoaster days - my blood counts are playing up, I do wish they wouldn't. Currently my platelets
are low and they were going to send me back to the Beatson this morning (Saturday) but overnight they rose very slightly so
they have decided that they don't haver to yet. Whites and reds also down but blood transfusions have got they reds up and
the whites aren't down at critical level but as they control mu immune system please don't visit if you have cold/flu etc.
Throat is sore again with possible blisters - however ice cream seems to work well! Watch this space to see what happens now
- no-one seems to know quite what is happening to me!
2nd May
After some more platelet transfusions I've managed to get all those blood counts back to normal, and I'm still at the hospice!
I actually managed to go to a friend's wedding (well, the registry office ceremony anyway) on Monday, and it was lovely! Mind
you, getting to the wheelchair entrance was a bit of an adventure as it led over the Park Circus cobblestones... We got there
by black cab. The first driver didn't have much wheelchair experience as he almost had me lying flat on the road trying to
get me in - very scary! The second one was a lot better. He also left Stewart a bit more room to sit by positioning the chair
in a different way! I got all dressed up for the wedding, too, so maybe you'll get a picture. What else is new? I had a visit
from Beccy, a penpal from South Africa who was up to see relatives. Yesterday the nurses took some of us out to the park to
feed the ducks as it was such a nice day. Quite a bit of excitement then, as you can see. Plus I'm back to some hard work
physio, transfers and upper body training. They do keep me occupied here...
8th May
Well here I am back at the Beatson for Chemo Nr 5, forced to share my room-mates choice of TV - will my tapes & CDs be able
to drown out crossroads & neighbours? Food hasn't improved since last time, so the prospect of a Tesco almond croissant for
breakfast is simply wonderful - Stewart does really well in getting treats for me. We had a delicious picnic in the park on
Sunday - ending in a giant slice of Peckhams finest Death By Chocolate, yum!. Other news - my platelets went funny this time
so I needed platelet transfusions last week - they went down to eight which is rather worrying - now at 100ish. My white cells
fell but not to a critical level - sheer determination and platelet & blood transfusions meant that for the first time I was
able to stay out of the Beatson between Chemos. I got a whole list of new exercises to strengthen my upper body...including
music : I'm getting a knee harp, hurrah! Thank you Starfish. Well as I write this my loely Irn Bru coloured chemical is now
on drip and this is the chemo really starting. They have changed the regime and altered some of the drugs so they think they
won't have to give me the growth hormone to stimulate white cells. Will this stop my white cells from dropping too far? Will
I get de-dripped to get some physio or some fresh air? Will they get a celebrity chef to improve the food? Will I stop sounding
like the end of a Batman episode? Who knows? Join us soon to find out what happens next!
16th May
Chemo no.5 kept me in hospital for two extra days due to some side effects and complications. I was put on an extra bag of
chemo drugs and IV antibiotics. Physio? Trip to the park? Nope. I missed out on all the nice weather! Back at Hunters Hill
now. It's been a very strange couple of days. Basically, I couldn't stop crying. Frustration hit in a big way. I was told
early on that this would happen, that I couldn't be happy, smiley, positive all the time, but until it hits you, you don't
know how low you can be. The nurses were great, holding my hands, listening, shedding a tear or two themselves. It just all
came out, not being able to walk, being stuck either in a bed or a wheelchair, facing the scanners again just after my birthday
(I'm no longer in celebratory mood, more scared), suffering from those flipping leg twitches, thinking of wheeling myself
into the duck pond just to see if the shock would click my spine & legs back into function, etc etc etc. Mind you, now I've
let some of this out, I feel better. More relaxed. I've had a visit from the hospice aromatherapist (head massage!lovely!)
and hypnotherapist (relaxation exercise!great!), and they've offered to let me talk to their shrink. I might. Well, now for
the really big news: Looks like we're getting the flat in Clydebank, the one our social worker really wanted for us! If all
goes well, the nurses will take me up in the hospice minibus to have a look at it (taxi's too expensive, and I still have
to learn to transfer into a car). It sounds so wonderful. Thinking about what I will be able to do there (my own cooking for
starters --ooh, bad pun!) will be one of the things to help me dig myself out of my depressive spell this time. Let's just
hope I get all the physio I need so I'm stronger sooner because that will mean I can move in! That was lots, so I'll leave
it at that for today. More soon...
26th May
Shortly after the last update my white bloodcell counts went really really low, and I was very worried I'd have to go back
to hospital. Yet again, I managed to hang on by a thread and stay in the hospice. Although again, it meant missing out on
trips to the park because it was too hot and I could have got a temperature - which I managed to do a couple of days ago just
by sitting in a sunspot at the window! Good news of the week is that my harp has arrived! It's beautiful! I've been playing
quite a bit already, although I always have to stop when I get those leg spasms, and that is really annoying!
Stewart has now seen the flat and it seems fine, but we'll need to get rid of all the carpets as they're somewhat threadbare.
We're thinking of replacing them with laminated flooring as it will not only look nice but will make moving around in the
wheelchair easier.
I'm still not looking forward to spending my birthday in hospital. I'm just hoping they won't make me stay over the weekend
because that'll just make me more nervous about the scans. If they let me go back here, at least I'll get a proper rest beforehand.
Well, we'll see...
7th June
Last week was chemo week, it wasn't too bad but as per usual in the hospital, I didn't sleep very well (despite being very
tired), so I'm still catching up now. I went through a series of scans on Friday and Monday to see how the disease had changed.
Some of them were very scary, especially the MRI scan which is the one where they put you into a tunnel for 15mins or so.
It's very noisy and claustrophobic. Today I went in for some of the results. I'd had an inkling that there'd be a "do you
want the good news or the bad news" scenario, but I still wasn't quite prepared for what I was told this morning. While my
lungs and chest are practically back to normal and my liver is responding really well, there is still some cancer in the bone
marrow, and that is where they really did not want it to be. It forces me to make a very difficult decision. I could opt for
more chemos which may or may not work, or I could just say no and see what happens. You know how little I like chemo, and
huge amounts of drugs. It will take a lot of thinking. Well, I'm going for some distraction now anyway. There's a strawberry&cream
tea on downstairs. Taste of summer and all that...
Oh, before I forget, there's a charity auction for Maggie's Centre at Ottakar's Bookshop on 22nd June, 7pm. Tickets are £5
and get you a catalogue and refreshments. Hosted by Sally Magnusson, lots include original artwork, limited editions, signed
copies,...
14 June
The decision is made! I will not have more chemotherapy and will instead opt for a combination of alternative therapies, including
high dose vitamins, echinacea and mistletoe. I had my appointment with Professor Barrett (my consultant) today, and she agreed
that this was a sensible decision, and she seemed quite happy for me to try out the alternative therapies. The chemo has helped
with the cancer in the soft tissue (ie liver and lungs) but had little effect on bones and bone marrow. Another 6 months of
chemo may not have any effect and might knock my immune system to very low levels which would make me very ill and miserable.
The aim now is rehab, lots and lots of physio and to get home to our new flat and live as normal a life as possible. The alternative
therapies will be much kinder to my body and mind - and the prof says things often happen that she can't explain medically.
I want to be a such a miracle case!!!
I had a visit from a newspaper reporter and photographer today. They're doing a piece on Ottakar's auction for Maggie's Centre,
and I'm providing the "human interest" part of it. I was so apprehensive about the whole thing, but it wasn't too bad in the
end. Anne, the reporter, was very nice and even brought me some flowers and cake from Peckham's! I'll pig out on that cake
as it'll be the last piece for a month - my echinacea treatment requires a vegan diet (with very few "exception foods" and
treats). Then again, life without egg and cheese sauce won't be all that bad...
18th June
I've moved! I am now in the Glasgow Homeopathic Hospital through the week and back at Huntershill at weekends. They sent me
here in the hope that I will get more physio to build up my strength faster (to get home!!!!) and possibly reduce the effect
of my leg spasms - and also to ensure that my homeopathic detox programme is properly supervised. The good bits so far are
a lovely garden that I get to from patio doors from my room, a common dining area and an easy to use en-suite!! I have also
already had acupuncture to help with my leg spasms (sometimes helps MS patients who also suffer from a similar sort of twitches
that I get). The bad side is that it is back to standard (bog standard?) hospital food - yuk! However, one of the patients
told me that they can do a nice veggieburger - I'll try that tomorrow. Just as well my parents are coming up - mum can do
some catering from the camper van!
25th June 2001
Here I am still at the Homoeopathic (note correct spelling!!!!)HOspital - they had extra staff so I could stay the weekend
- it was very quiet over the weekend as most people go home for the weekend. Mum and Dad are up - supplying me with yummy
food & drink. What has made the hospital food slightly more bearable (I still need to eat it when parents are travelling)
is that I am now registered as vegan - this gives you the extra choice of vegiburgers, nut cutlets & vegi kievs!! (SK - Shame
it took 5 months to find this out!!) The article appeared in the Evening Times last Tuesday - everybody said it was a nice
picture of me too. I am not convinced but then I have never really liked myself in pictures... Friday night was the auction
night - I got to go - only the second big trip out since Feb. It was for Maggies Centre - a drop in centre for cancer patients
& their families where they can get advice, help or just a quiet space to relax/think. It'll be built a stones throw away
from the Beatson. Sally Magnusson hosted the evening which was great fun - thanks to all those who turned up to take part
and/or see me!! Stewart & I even managed to get the Debi Gliori Mr Bear watercolours that we fancied. All in all, we raised
just over £6000 - someone paid £650 to be a character in one of Ian Rankin's next novel!!! It was so nice to see
all my colleagues
again - and so much fun! Needless to say, I was totally exhausted - I was fast asleep on Saturday morning - the nurses didn't
dare wake me up. I got my painkillers over 2 hours late and you know what? - NO PAIN. I'm doing well...I'll need to go as
more homoeopathic concoctions, lunch and echinacea tablets await.
2 July
I'm back at the hospice again, with a little bag full of homoeopathic remedies for my leg spasms. Sometimes they work, sometimes
they don't. I guess the effect is cumulative rather than immediate, so I'll give it some time. Went to two proms concerts
at the Royal Concert Hall, candlelit baroque and the last night. It was great! Exhausting too, though, as I'm not sleeping
very well. It's too hot at night, and the bays are away from the windows and there's no fresh air. Well, the big news of the
week is that it'll be over on the 16th, because I'm going home! They've decided that going to my new flat is the best thing
for me to do. It's a bit daunting, but I'm looking forward to it, too. My very own space, and big windows!! Tell you more
soon...
16th July
On Thursday I finally got a chance to visits the flat! Along with the community physio, ot, social worker, hospice physio,
my parents and Stewart, The place felt very full, and everyone seemed to be talking above my head. The bed hadn't arrived
yet so I couldnt' even try out the new hoist! Still, it was worth it.The flat is lovely, huge bay window in the lounge, space
for planting herbs and - we're moving in TOMORROW! I'm so happy. And yet scared. I had some bad news from the doctors.It would
appear my liver cancer has already returned and is beginning to affect my lungs again.Time to batter it with the next weapon
- MISTLETOE!The echinacea and homoeopathy have worked wonders on my leg spasms, so why not for the cancer. So all you people
out there, thanks for your continued support, and do keep praying.
PS, Jo, if you are still reading this, Nigel couldn't have sent me a lovelier surprise - thank you sooooooo much!!!
More news from HOME, when I'm out of my planned hibernation period!
Yours
Insa
24th July 2001
Insa passed away in her sleep at 9.20 on Saturday 21st July. She got her wish and got home on Tuesday 17th, she got the peace
and time with her family that she so much wanted. The cancer grew so fast - after her last message above the doctors confirmed
that they thought the cancer was coming back and that the next week was critical - Insa was made aware of this and she was
able to say & do things she wanted. She passed peacefully and quickly in her sleep.
Cremation
Insa will be cremated on Friday 27th July at Clydebank Crematorium at 2.00pm. Everyone is more than welcome to attend - please
don't wear black unless you want to - please don't get flowers, donations instead to Marie Curie Centre, Hunters Hill, Belmont
Road, Springburn, Glasgow. We will then go to the West Highway Hotel - close to the crematorium, again, everyone is welcome
to attend.
Insa was/is unique. Please remember the good times and don't dwell too long on what has happened. She fought with so much
strength & energy that we should be proud - even on her last day she still had the willpower and desire to live - she wanted
to go shopping on Saturday morning, her energy just ran out. For 5/6 weeks everything was going for her - her hair & eyelashes
were growing, she put on weight, she got stronger, she started transferring more easily, she knew she was getting home, her
twitches almost disappeared, she looked at finishing er PhD and getting back to work - she didn't just have bad times - remember
the good, the cancer was just too strong for her. She is with us all and always will be. Please keep reading this page as
it should offer hope and strength when you need it.
Parting Ceremony for Insa - 27 July 2001.
[See also www.dcjt.demon.co.uk/caerclud/funeral.html]
Insa was accompanied into the grounds and into the Crematorium with pipe music played by her ex-landlord and friend Willie
Park. Her coffin was carried by two family, two friends and two work colleagues. She had 3 bunches of flowers - one bright
with sunflowers and vivid colours, one scottish with thistles & tartan and one pig(I couldn't let her go without a pig!!).
Some red roses were put on her coffin by my family.
Herald: On behalf of Stewart and his and Insa’s family I would like to welcome you all here today and thank you for coming.
Insa requested that as much as possible of her parting ceremony be done outside as that is where she felt her spirit would
be. In respect of her wishes would you all please gather outside in a circle and the ceremony will begin.
All left the crematorium to Beethoven (pastoral) and formed a circle outside in the bright sunshine - we formed a circle on
the lawn amongst numerous trees - just the way Insa wanted it.
Herald: Let us begin by giving peace.
North: May there be peace in the North.
East: May there be peace in the East.
South: May there be peace in the South.
West: May there be peace in the West.
All: May there be peace throughout the world.
Herald: Let the four directions be honoured that power and radiance may enter our circle for the good of all beings.
North: With the blessing of the Great Bear of the starry heavens and the deep fruitful earth, we call upon the powers of the
North.
East: With the blessing of the Hawk of Dawn soaring in the pure clear air, we call upon the powers of the East.
South: With the blessing of the Great Stag in the heat of the chase and the inner fire of the sun, we call upon the powers
of the South.
West: With the blessing of the Salmon of Wisdom who dwells within the sacred waters of the pool, we call upon the powers of
the West.
North: Let honour be given to the Spirit that brings us here today.
East: Let honour be given to our ancestors without whom we would not be standing here.
South: Let honour be given to the Spirit of this Place. May we all be richer for having come here.
Herald: Insa fought courageously against an overwhelming cancer - I now ask Rowena to speak to us.
Reader: Rowena
THE DOLPHIN by Rowena Love
Cancer's a queer fish:
anaemic amoeba endlessly mutating;
puffer-fish growths bloated with poison;
or shoals of cells
that prowl like piranhas
stripping my health in their feeding frenzy.
But attitude can attack back,
till I'm the dolphin swimming free
from this sea
of sickness.
I'll trawl my system,
catching cancers and fears,
netting them to wriggle and squirm:
powerless.
I'm the dolphin swimming free.
Modern medicine may have me filleted,
canned and processed,
pumped full of additives -
but the rest is up to me...
I'm the dolphin swimming free.
Dread might dorsal my spine,
tears flood my face with brine
but I... CAN... DO... THIS...
I am the dolphin swimming free.
Herald: Grant unto us, I ask, the power of the spirit to bring brilliance of the eternal splendour to one who has now entered
the invisible. Wherever she may be, and on whatever plane, she may now pursue her ideal, let her be blessed with a divine
rest and an utter cessation from strife.
We stand at a gateway now, a gateway that each of us must step through at some time in our lives. Insa has stepped through
this gateway already. Her soul is immersed in the shining light that is the mother and father of us all. The sadness and pain
that we feel now is in our knowledge and our experience of the fact that we ourselves cannot yet cross that threshold to be
with her until our time has come.
Herald: Insa loved life - all aspects of it - especially her work. It combined her love of books with her love of people.
I will now ask Eleanor, Grainne & Natasha to speak to us.
Reader: Eleanor
Reader: Grainne
IF I SHOULD GO BEFORE YOU (Joyce Grenfel)
If I should go before you,
Break not a flower nor inscribe a stone,
Nor when I'm gone speak in a Sunday voice,
But be the usual selves I have known,
Weep if you must,
Parting is hell,
But life goes on,
So sing as well.
Reader: Natasha
DEATH IS NOTHING AT ALL (Henry Scott Holland 1847 – 1918)
Death is nothing at all,
I have only slipped away into the next room,
I am I and you are you;
Whatever we were to each other. That we still are.
Call me by my old familiar name,
Speak to me in the easy way which you always used,
Put no difference in your tone,
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we shared together.
Let me name ever be the household word that it always was.
Let it be spoken without effect, without the trace of a shadow on it.
Life means all that it ever meant,
It is the same as it ever was, there is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you, for an interval, somewhere very near, just around the corner.
All is well.
Herald: Physical death is for the person experiencing it, a birth, a freeing of the self from the limitations of the body
so that the soul can grow and learn and move in a brighter world. Insa is in this brighter world now and it is time for us
to give thanks for her time on earth, for the joy, laughter, love and wisdom which she experienced and which she gave.
Herald: Insa will be most missed by Stewart and her family - I would like to ask Stewart now to talk to us.
ANCIENT SPIRIT Written by Insa Thierling (May 2001) - In memory of Chris Turner & Insa Thierling
I am on the wing of the falcon,
I am in the rustling of the leaves,
I am in the crackling of the fire,
I am in the rays of the sun,
I am in the whispering of the streamlet,
I am in the splashing of the sea,
I am in the hum of the stones,
I am in the heartbeat of Gaia,
I am in the air,
I am in the fire,
I am in the water,
I am in the earth,
I am spirit,
I am,
Watch and listen.
Herald: Let us have a moment of silence in which we each, in our own way, give thanks to Insa for all that she gave us.
Herald: Let us join hands and say together the prayer which unites all.
All: We swear by peace and love to stand
Heart to heart and hand in hand.
Mark, O Spirit, and hear us now
Confirming this our sacred vow.
(repeat twice more)
Herald: Let us join together singing Awens. The word Awen means "flowing spirit" or "inspiration" and Insa was, is and will
be, an inspiration to many.
All: Awen, Awen, Awen
North: Let all be thanked and honour given to those who have made this gathering possible.
East: Let us carry the Spirit of our Ancestors out with us and continue to give them honour.
South: Let thanks be given to the Spirit of this Place.
North: May the lands of Earth, her forests, rivers, seas and all creatures upon her be preserved and protected.
East: May the World be filled with Peace and Light
South: May the World be filled with Radiance, Joy and Harmony.
West: May Love pervade all those who seek to serve. May our souls be united thereby.
Herald: In silence now as we move back inside we send Insa our own blessings for a safe and joyous life in the Other World
- filled with peace and clarity and love.
All entered the crematorium for the final stage.
Herald: As the sun rises in the East and sets in the West, so too are each of us born and so too do each of us die. But as
the Sun returns anew each day, so too do we return to earth, refreshed and renewed. Now, Insa, go safely, go well, go surely.
Our hearts are with you. And you remain in our hearts.
The coffin covered by curtains being drawn to the sound of the Eurythmics - "There must be an angel".
The congregation left the crematorium again to the sound of pipe music and gathered at the West Highway Hotel to celebrate
Insa's unique life. More than 100 people attended the service and 83 went to the hotel afterwards to have a drink on Insa
(For the whiskey drinkers - Lagavulin of course - her favourite tipple!).
Happy Thoughts
I said above that we should try to concentrate on happy thoughts and memories which everyone has of Insa. Various people asked
if Insa had some positive times through her illness and the answer is definitely yes. Here are some of them:
- The NHS actually lending her a laptop
- The day she got the wand & tiara from Anne she held court in her room! I still remember the wicked grin as I walked into
the room.
- Valentines day - the 15 guests, the cahmapers, the rose petals!
- Siusaidh & Piet (whose wedding Insa got to later) met Insa and she was suffering due to her baldness - Piet said "Paint
rabbits on your head and from a distance they'll look like hairs!" She was still laghing about it hours later when I arrived!
- Seeing friends & family - esp Connie!
- Her beetlenut meals - especially with Kerstin, Ellen & Kenneth
- She received a Prayer Napkin from an American church that had held up in front of a large praying crowd - she dubbed this
her "Faith Cloth" and was proud of what it stood for. She took help from everyone - no matter what religion.
- The wedding ceremony she got to
- Her birthday and the wonderful gifts that the nurses gave her - a Rennie Mac Candle holder from the beatson and the celtic
ear-rings from the hospice
- When she got to the end of her chemotherapy, she had to get an MRI scan which is magnetic - so you aren't allowed metal
near it. The lovely nurse read out the list - watches, pacemakers, metal plates....hair clasps. Insa just started laughing
- the nurse looked at her, spotted the bald head and went red. Insa laughed for ages.
- Nigel & Julie came with something special from JK Rowling (Insa was a huge Harry Potter fan). Her face when telling me about
it was lovely, see her thoughts above and the thank you!
- The last night of the proms with me and the candlelit proms with her mum.
- The day she got home to our new house - I'll treasure that look, and so should all the helpers.
Thoughts On Insa
Most of you know just how much I thought of Insa - as I put she wasn't one in a million - those odds are too short - she was
one in a lifetime of the world. She said that we were soulmates and it felt that way, I have never loved anyone like I loved
Insa and no-one has ever got as close as Insa did - she was unique and made my life special, it feels empty and I feel lonely
without her physically by my side. Here are some comments from others who sent me cards/e-mails.
"We will remember Insa for her intelligence, her humour, her sound ability to see through nonsense, her lovely smile - and
most of all for being your friend & partner"
"Her parting ceremony was an incredible experience.....you made a wonderful match, I know you have lost someone, who, to me,
appeared to be a true soulmate to you"
"Please know that she was respected very much in the druid community and held in high esteem by myself and many others"
" She was amazing and will remain so to all of us who knew her"
" She was a wonderful and spirited person"
"She is irreplaceable"
"She was one smart cookie"
"She was a very bright soul and we shall all miss her - the words don't really suffice”
"Somebody loved, creative and always full of ideas & plans"
"I know she meant a lot to you and it's such a tragic loss"
"Insa was a fantastic warm person and anyone who ever met her will never forget her"
"She was an amazing and truely unique lady, whose presence made the world a richer place and whose passing has left a gap
which will never be filled"
“Salute her courage and acknowledge her warmth & genorosity"
"We were very privaleged to know such a special person"
"It is a privalege to have known Insa"
"We will all miss our dear Insa very much, I will always think f her with a smile on my face and every time I see a pink pig,
I will think of how she was - big, bold, bright and larger than life with her flame red pigtails and her bum-bag"
"I'm sure that by now loads of people will have told you that she was a special person - but in her case it was genuinely
true"
" Even though she is no longer alive, we will all carry a part of her around inside, and I'm glad to have known her"
"I'll always think of her with warnth & happiness and a great deal of fondness"
"Condolences on your loss of Insa - what a treasure she was"
"She sparkled - as will her memory"
"Remember she is only a thought away"
"Insa fought gallantly"
"She won't wholly die, as long as she is remembered and spoken of with love, and as long as her spirit, freed to wander, roams
over the hills and mountains that she loved"
"Insa made a lasting and positive impression on me"
"She was so brave during her ordeal"
"She was very brave and had a great heart, she will make the suummerlands light up"
"We'll all miss a great friend"
"A warm-hearted and intelligent girl"
"I was struck by her kindness....She just liked people and folk reciprocated that warmth"
"Goodbye Insa - you were an inspiration"
"She was a very special person who will be sadly missed"
"I have been so moved by the obvious love and caring she has inspired in so many"
"My heart goes out to all of you who knew and loved this wonderful young woman"
"I know how hard you both worked, through sheer optimism and willpower, to reverse the momentum of her illness”
"I know how you were fiercely supported by the Glasgow shop staff (Ottakars), who loved Insa very much"
"Her radiance filled that shop and affected everyone who worked with her, she was a brilliant, lovely person of great warmth,
genorosity & talent. She will be hugely missed”
"Those we have are never really lost to us, everywhere their love lives on"
"A truely remarkable person"
"She was really a wonderful & special person"
"It was lovely to meet Insa, she seemed a great girl"
"She was an amazingly talented person who will be terribly missed"
"Insa was a lovely person"
"She was an incredibly courageous young woman and although you will be devastated you will be proud of the way that she dealt
with her circumstances"
"Insa was a delightful person and a most diligent student"
"She always seemed to be full of life with a wide ranging questioning mind"
"We feel humbled by her courage and fortitude"
"I was inspired by Insa's strength & courage"
"Insa was always so calm on the outside but bubbling with excitement on the inside"
"Insa will be greatly missed by all those who knew her and I hope that you can derive some cofort in hearing that she was
so highly regarded and held in such high affection"
"It seems so unfair that she should not be allowed a longer time to lighten the lives around her"
"What makes it a litle bit bearable for me is the fact that she, unlike so many others, did the things she wanted to do, no
compromise"
"I loved her pitch-black humour. Her ability to see through things immediately and nail things to the point with a few well
chosen words. Her creativity with the pencil and the brush. There was hardly a thing that she wasn't excellent in. I admired
her for her move to Scotland."
"Her happiness just radiated"
"Her sparkling eyes, her quick and witty mind, her great sense of humour and her laughter. Her courage, her strength and the
fact that she could still draw something positive out of the most hopeless situation. Her diary is one of the most encouraging
things I've read in a long time. For me it seems that she would not surrender to the circumstances."
"Karen remembers vividly Insa playing (her harp at a Mensa banquet in Sirling castle) - I am sure lots of other people share
that memory - Insa brought a lot of pleasure to many people. I remember when I met you both, how well you got on together
- you seemed to be so right somehow."
"I admired Insa a lot on how brave and courageously she put up with the terrible disease."
"I will miss Insa."
"Insa was such a good and special friend to me - I miss her so much."
As Insa puts it,
long life, love, happiness & laughter to you all,
Stewart
Contact Details
E-mail - collboy@onet.co.uk, stewart.kennedy@interserveprojects.com
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