a commonplace thing - living with cancer - one in three of us in the UK will get cancer in their life .. take heart!
Saturday, September 30, 2006
Random things my dad says
While my dad was visiting we shared a few thoughts on my religion, and the power of the mind. He is quite convinced about the mind over matter thing and knew various stories from the news on this theme. One tale he told me was about watering plants - the premise is something like this: the researchers chanted positive sayings over one lot of water and negative sayings over another lot, and then used these different waters on different lots of plants. Over time the negative water plants failed to flourish, whereas the positive water plants flourished. Now this is the sort of thing I find very easy to believe .. and I was wondering if anyone else has heard of this experiment and better still can you locate a refernce for it?
Bad news
My best nurse has got a sore throat :(
Her doc has given her antibiotics and she is sleeping in the spare room - but she has a sorry face on her cos she is worried about making me ill. On the other hand, the nurse at the Nuffield reckons my immunity won't be that low on just my first round of chemo -- so hopefully we'll be OK!
Friday, September 29, 2006
Get Well Banner
BANNER
Yesterday I got this banner through the post. It is a re-cycled gift from the Mistery Brothers - Joe made it for Toby when he had a broken arm. It worked for him cos his arm is mended now, and it seems tailor made for this space. I've decided to pin up all my cards too.. just like Toby did. At times like these I find 8 year olds a great inspiration .. and I can hardly wait to see them tomorrow.
PRESSIES
In fact, yesterday was a good day for pressies - I had a big bouquet and two pottery angels from the students in 1E - my lovely tutor group. I was very touched by that. Bless 'em.
Below are some pics of other lovely flowers I've had in the last couple of weeks. I get great pleasure from flowers and I particularly like these strange orange ones that Mr Kettle sourced .. (they are too House Doctor to just be "bought")
I have also advised a couple of ppl who wanted to get my a pressie to give a donation to Macmillan Cancer Support instead. I will certainly be using that charity in the future, so it is a good option to support them and me at the same time.
If you are "up 'anley duck" it is very easy to donate to them, cos they have a big collection-wall thing just inside the main entrance to the Potteries Centre.
Thursday, September 28, 2006
Nina Simone lyrics
Why am I alive anyway?
Yeah, what about God?
Nobody can take away
I got my hair, I got my head
I got my brains, I got my ears
I got my eyes, I got my nose I got my mouth,
I got my smile
I got my tongue, I got my chin
I got my neck, I got my boobs
I got my heart, I got my soul
I got my back, I got my sex
I got my arms, I got my hands
I got my fingers, got my legs
I got my feet, I got my toes
I got my liver,
Got my blood
I've got life ,
I've got my freedom
I've got the life
And I'm gonna keep it
I've got the life
And nobody's gonna take it away
I've got the life
Reasons to be cheerful Pt. 1
Had a nice relaxing day with mum and dad. Ate pretty much of the rainbow during the day - peach, leek, potato, beetroot, tomato, broccoli carrot and peas. (LOL - this spell-checker doesn't recognise the word beetroot - which suggests how RARE I am for eating the lovely stuff all my life - and it is a superfood to stop you getting my type of cancer -- only it obviously isn't a guarantee!)
Routine
I got up early with B and we did our yoga together then ate porridge with banana, blueberries and raspberries - so you can see I'm feeling less nauseous today too.. Doing this very familiar stuff makes me very cheerful. I'm tired now - but I can go back for a snooze anytime.
Sofa
The lovely man from Highly Sprung called to say they would try to collect the sofa (for re-upholstering) TODAY. This is great news - even though (unbelievably useless) CIS insurance still haven't paid him - he says he will chase them! Good luck to him- we've been chasing them for FIVE months!
I admit I played the cancer-emotional-blackmail-card last week and told him that I NEED this sofa back quickly, seeing as I can't possibly watch crappy NTL telly from a dining chair... he seems responsive to my needs!
Wednesday, September 27, 2006
James
In despair at James's images of himself on his blog
http://theflashpointofvaseline.blogspot.com/
I've decided to post a couple of my own to better show his sartorial elegance.
Here he is, at our wedding this Easter -- In The Pink,.
You can work out the title for the second one yourself.
Caption competition moment:
We love him to bits, and he MUST be the funniest story-teller ever -
this picture captures ppl's usual response to his outrageous stories:
family
I feel quite a bit brighter this morning than I did yesterday. Julie says you can't predict how the effects of the chemo will pan out over the time - but I am hoping that I will have some energy for when she brings the Mistery Brothers up at the weekend.
Tuesday, September 26, 2006
Nurse Connie
Not everyone knows Liz was a nurse b4 she got into teaching - but how handy for me.
She is a top-nurse, very calm and gentle with an ability to rustle up a nutritious meal in a moment. Plus, if I tire of the usual stuff she'll sing a rune or three to while away the hours.
Thanks, Lizzie...
PS - this is how she looks in her tiara:
Arty Friends Theme... I have updated the "links list" to add a link to Liz's newest published work (a short story in a collection called Bitch Lit) .
AND a link to another "Lili" - our darling friend in France whose paintings are in every room of our house. She now has a "galleriste" in the UK - so I posted the link for you to enjoy.
Here she is - varnishing one of our paintings in our garden a few years back!
@Matt - listen!!!! This is meant to be a family show... :) Your message is so TYPICAL of Lit teachers, they can't do anything without ref to something sexual. (Was there a video to watch too?)
Monday, September 25, 2006
Suzi sleeps early and B blogs on!
I'm not sure if she'll approve of all the comments which I've just chosen to publish but hey ho I thought you lot out there would enjoy this challenge:
so........ come on all ye English teachers and English students
'The big C' - Poem story (from Matt's last comment)
- who wrote the 'The big C' poem?
......and Matt I'm waiting to hear how you explained it to him! (But sorry folks I'm not sure if the reply to this will be fit to publish).
"Irish nurse Connie" wins the best dressed nurse competition
Well done to Irish Nurse Connie for your perfectly crafted nurses hat and extra special bonus points for the name badge. Well done Lizzie, today's efforts are going to take some beating!
Carry-On with the Cable
I had a good night's sleep, with Brigid sleeping on the floor at the foot of my bed like a medieval retainer, as we are forbidden to share the space while my poison-chemo is still coming out of me. It tastes vile in my mouth and is making me a bit queasy - but only mild, and quite manageable so far. I feel a bit less tired than yesterday and may be able to do a bit of work later.
A2 Lang students - check out the ENB4 page on the college intranet - I updated it a bit yesterday. Let's get this coursework licked - so far I've seen 7 proposals, and as far as I know there are 35 of you 20%.... well done to the 20% who've got started, but come on the rest of you!
Sunday, September 24, 2006
Hospital Photos
Photos from Monkey World
HOME
@ Keiron - I didn't post your comment since it had your email addy in it - but I wrote to you - let me know if it hasn't got through!
@ Greg - brilliant exposition on how to post a comment - you'd mke a great teacher if you weren't set to be a "Top Scientist" ---- NB to ppl who want to comment - the key thing is NOT to tick the "blogger name" box if you aren't a blogger! If you use "other" you can post without a password and I will moderate the posts later
@ Erin - groovy to hear from you - thanks for your kind thoughts - it is thundering here this morning
xx suze
PS - if you scroll down I've managed to add ONE photo today - the photo-adding thing is very hit and miss....
End of Treatment Day 3
Saturday
Hi – it is me
wresting back Blog-Control from Brigid before you all realise that she has more comedic talent than me. I am pleased that she has been able to keep it going while I’m in here, but now I can type in hospital – thanks to Jan-mum for getting me the lap-top. You are lovely, Jan. *kiss kiss*. We’ve also got 44 days of music to listen to, *gasp* thanks to James for fixing that and the wireless set-up at home … I am surrounded by such kind and generous ppl.
54 hours into the chemo and the hair-do is still in place. This chemo isn’t famous for hair-loss and it is obviously respecting the expense and trouble of my current style. Three days of the cocktail has made me a bit tired and sickly, but nothing at all hard to deal with.
Dr Adeb is very lovely - I am convinced now I’ve seen him thrice without any more recess-probing. He has also admired my metallic pink toe nails and even patted Mabel, the trusty guard-dog. He also showed a surprising knowledge about Charlton’s “progress” in the league this year. You experts out there will realise that there HAS BEEN NO FOOTBALL TODAY. (Yet again).
It really isn’t hard being in here – the space is very pleasant and the food is good, I’ve had prawns twice today, once with Mango salsa and once in sandwiches… very nice and full of essential minerals. I’m also eating masses of fresh fruit and seeds – I might turn into a bird –
haha –
more like a monkey. I’m so looking forward to seeing The Mystery Brothers next weekend, and will save some energy to go to Monkey Forest with them.
and from B
I can't wait to collect Suze and bring her back home. No doubt you'll be pleased to have the electronic communication restored to full working order!
OOOOOOOOps the "L" techno babe has realised why no comments!
Yes obviously I had to look at them in a different section, on edit posts, and then publish them before they would appear! Apologies for the delay in the posting and many thanks Kasia and Tracy for helping to spot the error!
Saturday, September 23, 2006
What no comments!
Suze has had several emails from people unsure of how to leave a comment.
Could anyone who has worked out how to leave a comment, please leave a comment here to explain to others how to do it?!
Just on my way up to see her now. I've printed off all her emails so she'll have plenty to occupy her mind with today.
Many thanks for all the good wishes. I will pass on all your love.
Friday, September 22, 2006
End of Treatment Day 2
Suze is on Day 2 of Chemo and feeling up to doing some college work.
Ann visited to discuss coursework - a very well done to the students who have handed it in - they will be getting lots of advice and tips on how to develop their ideas. Lazy students, you are losing out big time, get some work done!
An extremely efficient Matt in IT did a great job getting Suze's laptop ready so that she can work on developing resources.
The Kettle called, successfully getting past reception with his stella charged "water" bottle. Enjoyed a very healthy fruit salad - the food and nursing faultless. "OK" with Posh's new hair do and skinny knees kept everyone entertained for the afternoon.
Suze's spirit continues to be high but she is looking forward to a good nights sleep. I am too!
End of Treatment Day 1
Packing took ages and despite deciding against the cocktail dress and other luxury goods we still had a full car load. Now, after all the gifts Suzi had today, it'll be two car loads to get it all home. We never have had the ability to travel light. The nurses were entertained by the number of times I passed them laden with stuff. The room is packed with flowers and other essential items like Mabel the protective boxer dog!
S got wired up onto her chemo drug and is pleased to report that her vastly expensive cut and colours she had done to her hair last week have survived the first 12 hours. She had a peaceful few hours chatting with Mandie before James and I burst in laden with more goodies. A beautiful book to go with the dog from James and a very stylish new laptop from Jan/mum.
Time passed very quickly and it was soon passed 9. It was tough leaving but she is so clearly in good kind and caring hands. James and I then met up with Mike for something to eat and a chat which is always enjoyable in their perfect company.
It was just after 11 when we got back home and then James set to work for a couple of hours trying to get the wireless network working. I caught up with the phone messages but by this time it was too late to return any calls but many thanks to you all for your kind thoughts.
I've just finished chatting to S, our regular 2am slot, she is fine comfortable and feeling very well cared for. I told her about all the phone messages of love. She did have a list of several more things for me to take into her tomorrow so I may have to look into the possibility of getting a second room at the hospital to fit it all into.
Time to sleep again for me too.
Love to you all
B
Thursday, September 21, 2006
b's updates
I have just had my first lesson in creating blogs and hence my first posting!
Not known for being a "techno babe" I will do my best to update this when Suze is not able to get on the net. Apologies in advance for when I don't quite manage it.
What to wear for cocktails
I recently bought a lovely, full length chiffon dress from Monsoon and I am pretty aggrieved that I probably wont be able to wear it, as I am losing weight so fast. I knew when I bought it that opportunities to wear it would be few and far between (it looks more like a wedding dress than the outfit I wore to my wedding!) so B's solution is to wear my cocktail dress as I ingest my chemo-cocktail this afternoon. Hmm.... I think NOT.
Students
@ Charlotte M - bless you for your words in the card, you are very kind.
@ Emma C - I am sure that you will get good support from Celia too - and the way you keep working and drafting will surely help you to get good coursework marks again this year.
@ Nat S. I REALLY want you to email me (ask Celia if you don't know how) I need to know how you are progressing with the things we talked about last year.
@ Matt B - we haven't really had time to get to know each other, but since they have put Nigel in charge of our tutorial you have passed into the safest hands!
@ Chris F - now then! *adopts stern voice*. You have got all the potential in the world to get a top grade - so make sure you do plenty of indept. study to build on what you've got already!
@ Becky M - I dunno if it was faith, exactly, but I was always sure that you could fly in this subject, and you proved me right - your first piece of coursework was one of the best I've ever seen for a listening audience. I will be keeping an ear out to make sure you keep on track this year!
@ Matt N - bless you for your kind words. You will find Celia very good for your A2 work.
@ M Areeb - you are another one who did very good coursework, you've made such great progress since your first year in the college, and you should feel rightly proud of yourself.
@ Saiqa - Apart from being amazed that you're still there I will be keeping an ear out to make sure you stay on track this time! Thanks for your enthusiastic words - I'm deeply touched by them.
@ Sam B - thanks for your kindness. I am sure you will make great progress this year.
@ "little Sam" - surely I never used a size-ist term like that? .. is that what your mates call you? I am getting littler myself tho - this condition is like a fierce diet!
@ Sophie - I am delighted that you are carrying on with A2,can you remember what I said to you on results day?
@ Kieran .... I will miss you too, you surely did add to the entertainment factor last year! Did I really "shout" at you!
@ Holly - congratulations on still being there. Try to focus on a bit of study from time to time this year, my dear!
@ BECKY - ah, yes indeed, you made me laugh out loud with that comment. I was right about you, and I hope that you are right about me too.
@ Hanna - I look forward to seeing you all again too.
Some people don't understand why I am still thinking of work, but what else can I do with my mind? Ponder on sickness? You young people are at the heart of my life, and I do enjoy your company and helping you with your learning, so as long as I am well enough to type and chatter I will want to keep hearing about you and offering support if I can.
Wednesday, September 20, 2006
Treatment Plan
No, really, I agreed with B and J, he was very kind and also very confident that he can help me .........................and I'm sure he had good reason to go where he went!
The treatment plan starts tomorrow:
- three days as in-patient for I.V. chemo
- two weeks at home being sorted out for radiation treatment and seeing what the side-effects of the chemo are
- three more days of in-patient I.V. chemo
- start the radiation therapy – total of 28 days, five days a week for nearly 6 weeks – as an outpatient PLUS oral chemotherapy at the same time – during this I will get weaker and iller… and my immunity to bugs will drop right down.
- Then I get a 5 or 6 week “rest” to build up my strength for the surgery
- surgery will need 8-10 days as in-patient several weeks at home, recovering
- possibly more chemotherapy after that ......
Side effects Julie has been giving me tips on how to manage the side-effects, in particular the fact that I will be very buggered as regards my immune system. Please don't come to see me if you have any minor ailments that are carried by bugs!
Malignancy - what a glorious word! The BUPA person I spoke to today used this to describe my condition. There are two quick definitions of malignancy -- here - I prefer the second one .. redolent of dramatic personae like Iago and Caliban ... the thing growing inside me like a damn'd inhuman dog. Hey-ho - I should leave the literary refs to the experts!
Family. Julie is safely back at home with her lovely boys now, and plans are afoot to get my mum and dad up for a visit during the week next week. It was a total delight to have my sister here at such a crucial time, and I was very grateful for her nursing expertise PLUS all her tips and advice as I've been absorbing the new situation and taking in all the medical jargon. THANKS JULIE!
Tuesday, September 19, 2006
The Surgeon Speaks
She's fixed for me to see another specialist today and he will decide if it is possible to reduce it with radiation and chemotherapy. Mrs Hall obviously favours this, but it depends the need to protect the rest of my abdomen from the effects of radiation. If Mr Adeb says "yay" there will be 5 weeks of treatment every day except the weekend. If he says "nay" Mrs Hall will operate Oct 9th.
Shaking. After this phone-call I had my most obvious emotional reaction so far. I was shaking and unable to concentrate at all. The fear of secondaries had been well suppressed, but came bursting out when she told us there are none. I've been able to draw on my yoga-training all week to help me focus on being "well" but last night I was like a fish on a hook - instinctively flapping from side to side, making contact with nothing.
I feel OK today though, and very optimistic that my yoga training will help me to deal with the side-effects of the treatment. Julie looks pale at the prospect of Mr Adeb's treatment, but I am not fretting about it till I see how it affects me; it seems to affect ppl in different ways,
Teaching. Mrs Hall repeated what she said last Monday, that I have to put my own health first this year, and not worry about the current students so that I can make sure I'll be here for future students. The first time she said it she said for ten more years teaching (which is about right). Last night she said 20 years! Arrrrgh..... surely NOT!
Anyway - hard though it is, I am taking on board the underlying meaning of this. I've got to dedicate my energy to fighting this big, ugly thing now in order to have any future at all, teaching or otherwise.
Prayers. Several people have said that I am in their prayers and B's family in Ireland all lit candles for me this Sunday. In previous years this would have seemed irrelevant to me, but over the past few months we have been consolidating a faith of our own (see the Self-realisation Yogananda link on the right). It has been a timely spiritual development and it is giving us enormous support now. I am grateful to all who say that they pray for me, and truly believe that it will help me.
Yesterday. Julie and I had a lovely day. We revisited some family landmarks in Tunstall and Burslem, and ooh'd and aahh'd at the Burleigh Pottery. Then we went to the Monkey Forest at Trentham, which was an excellent diversion. The animals are delightful and the walk itself gave me my exercise dose for the day.
xx
Monday, September 18, 2006
Sunday at Tittesworth
Julie Mark Me
Luke, me, Mark
I'm pleased with this hair do - and no wobbly neck! Our Mark takes a flattering picture.
What a sportif pair they are.
Bless him
xx
Saturday, September 16, 2006
four am
What is it about this time that makes it so hard to sleep? I am not aware of being anxious, just awake. I am also excited cos Julie is coming up tomorrow and staying for a few days. I think we can go out for a little peddle along the canal on Sunday. Then she can help me get some shopping: the "hospital kit" -- slippers! dressing gown! will she be able to cope with the excitement?
Dressing Gowns. This is a challenge - I've actually been looking for one for months. Has anyone else noticed how infantile most nightwear aimed at women is? I'm not at home with the fluffy bunny look. Or you can get slippy satin that is cold to touch and falls open all the time Or they dont "do it your size, madam"..
Julie might be taking on more than she realises, going shopping with me!
Hairdresser. I was so unhappy with yesterday's hair-do that I went to another salon today. I choseJohn English and the M.D. (Gill) was there. She is a stunning woman. She was so kind with me, and sat and talked to me the whole time the girls were fiddling with my hair. She is a shining example of the kindness of strangers, she listened really well and chipped in with relevant and interesting comments. AND my hair looks better! I've had a shorter than usual crop for easy maintenance.
Survivor's Stories I just read some of the survivors' stories from the Bowel Cancer Site. Hmmmm, Maybe not the best idea in the middle of the night.
What they all make clear is that this is going to be a long haul.
Reflection This is better for these dark hours:
http://www.yogananda-srf.org/calendar/ir2007gallery.swf
Friday, September 15, 2006
Cancer Blog starts here!
Yesterday's funniest quote - demonstrating some of the serious side-effects of cancer -- B and I out for a walk up the lane, jogging back (gently, you understand!) and I come to a grinding halt "What is going on? I ate carrot sandwich for lunch and I am running UP HILL .." something wrong there, surely!
Yesterday's most serious thought: Someone who doesn't know me very well said he thought I was "putting a brave face on it" .. erm, no I am NOT doing that ... what you are seeing IS my face, and when/if I get upset or down you will see that face too, cos I'm not one to hold back on my feelings! But at the moment, this is my face ..
I'm not feeling ill, I'm having a good time keeping in touch with everyone and I am being blessed with kind thoughts and love from lots of delightful people. I don't know what the future will bring, and I am a right wimp with pain, but my dad (thanks dad - hope you dont mind me quoting you!) said it best :
I know you will get better, your willpower and determination are some of your stronger points, being a Toft first means you do the right thing and don't give in till you have won.
I think he is right.
Where I am today: I managed to get an almost full night's sleep and feeling fine. Will go to town for an hour later - maybe walk up there for the exercise and swap the books I bought the other day that I already have on the shelf!
Then Matt is coming round after work but with his health problems we probably wont be able to go for a walk :)