The Last Visit

 Once again we are being flooded by produce from the garden - our first heavy crop of raspberries, so we have had heaps nice desserts and I have made raspberry and Rhubarb jam which I think comes out better as it doesn't have so many pips. I've even bottled asparagus this year!

So tomorrow I will make my last visit to the chemo clinic to take some jam up to the nurses there. Some people bring cakes or chocolates for the nurses, but I hope the jam will be something a bit different.

My Blogspot has been on the blink for a few days, but has miraculously come right all by itself!

Update on hair

My hair has been quite slow growing. The widow's peak is quite pronounced and on either side there are two bald patches with fluffy white down on them. Just like Mickey.

Premonitions Part 2

Many of you may remember reading of my premonition of the lump being cancer back in May when I dreamt a large black bird attacked my neck.
When we arrived back after the PET scan in Hamilton - which showed no active cancer - look what we found on the front deck.

Getting Petted in Hamilton

Positron Emission Tomography. PET. Whew I'm glad I got that out of the way. A radio active tracer is injected into your veins and after an hour they scan you to see if there are any Hot spots of cancer.

Hamilton has just started doing this sort of scan and as a result there were a few hiccups. As I am allergic to the contrast dye I had to take some pre-meds to stop the reaction. I had been told I couldn't eat for four hours before but the script for the medication came saying take with food. So I rang up the clinic in Hamilton and was told that I would need to get up at 5 in the morning and eat and take my pills then. But this was the wrong thing to do as after I had enjoyed my toast and honey my blood sugars were too high. So I was shown to my lead-lined room and told to wait. The "Activity" as they call it had not arrived yet as it is flown up from Wellington each day that it is needed, but by the time it did arrive my blood sugars were heading towards normal again. They put a canula in my arm and attach it to a long coil of tubing. Then the nurse stood outside the door with just a gloved hand showing and released the activity. Then I dozed for an hour.

By this stage I was in a gown - but I would hardly call it decent enough to have pictures taken in it. Then a voice came over the intercom telling me to go to the toilet - set aside especially for radioactive people - then follow the black line to the scanning room.

 

I was lucky that the reception lady did carmera work for this one. These are the monitors outside the scanning room so yes that is me going through the hoops for 30 minutes. I went to get the camera from her after the procedure and she back off really fast. I wasn't allowed to touch anyone for an hour. So I gave Duncan a little wave goodbye as he took off to go back to Gisborne. Barry made me a cup of tea and soon I was back to normal.

I stayed with Barry and Liz another night, and then stayed with Simon in his rented apartment for two nights, enjoying some shopping with Margaret and Liz on the wednesday.

Then it was time to see the specialist. I was shocked that he had changed his mind about the radiotherapy, but my scan was all cold even though the lump in my neck - really a hump now - is a little larger than desirable. This is why I will have 2 sessions of immunotherapy to stave off any regrowth.

Gentlmen Prefer Blondes

Looking at my stubble, I think I'm going to be a platinum blonde!!! I know some of you would deny my pollyanna spirit and suggest that it will be white - or even grey. But hey, I'm just grateful for ANY hair that might grow. In the meantime I'll just have "more fun" like blondes do until I am proved wrong.

Fuzzy Wuzzy was a worm

I keep feeling my head to see if the hair has grown. Unfortunately my scalp has grown quite tough while I've been bald over the last 3 months so as each little hair follicles punches through it has the consistency of coarse sandpaper.
Duncan refuses to comment on it every day when I say "Do you think my hair has grown?" "I'm only going to comment once a week" he replied. I normally have a haircut every 5 weeks so I am hoping there might be some progress by then.
It feels quite fuzzy wuzzy now, but too small yet to be making a call about colour or curliness.

Hair we come!!

Today I would normally be off at chemo and my poor bristly hair would be slashed down again. But not any more - its free to grow!!

Duncan and I went out to dinner last night to celebrate the end of 18weeks of chemo. Finito. I am now up to two glasses of wine, so that's huge progress!! We crossed the last week off the wall chart and off we went. I took this photo by holding the camera out and it seems to have given me a double chin. (Some of you may understand the logic of this)

My wall oven was very unsafe as its venting fans had stopped working so I took the opportunity to to back to a stand alone oven with a warming draw. The bench still needs some finishing off but at least I feel safe to cook again. Mmmmmm lasagne for tea.

We hope to go down to Mahia for the weekend in the caravan. Duncan has a golf tournament to play in and I will rest and and take walks alone the beach.

More news after the scan and report back on the 24th.



A Whiter Shade of Pale

A lot of people say to me - "you look good, just a little pale." But I'm sure that if you take big bushie brown eyebrows and long luxurious eyelashes off any body then they will look a little pale. Mostly I am winding my way out of the chemo spell - but I've just tried to rush it a bit this last time. I'm now still feeling a bit off colour, and have a sore throat and cold. I nearly made it through keeping healthy all the way.

I did it!!

The night before my last chemo I was in a high state of anxiety and had a nightmare that they gave me the wrong bag of chemo, then the line came out and they couldn't get it back in, then there was a gas emergency in town and the day ward was swamped with people unable to breathe and I couldn't find a chair to sit down on. So it was a great surprize that the line went in first pop, and all the chemo went in at quite a high rate, I got the lunch I ordered and was feeling good when Dawn dropped me home and made me a cuppa. I said goodbye to Patsy and Annette and said - in the nicest possible way that I hope I never see them again. I had given them so much cheek (a bit like my Dad) that I think they might have been pleased to see the back of me.
I noticed in the Listener a quote from a Dr David Agus "We talk about cancer as a noun, as if it is a one-time event. But the body is changing all the time. We should think about it instead as a verb "I'm cancering". The trick would be to pick up on early signs of when a person started to "cancer" and then nip it in the bud."
This is a good reflection of how I feel about cancer now, it is all a matter of cell growth over time. Cancer cannot seem to be diagnosed at one point it needs to be observed over time.
I wonder if my cancering time is over . Roll on October and we shall see what things look like now.

The Ist of Potatoes

The next season in the calendar after the 1st of Aspargus is the 1st of Potatoes. Duncan dug up the first of his Cliff Kidneys as a fathers Day treat. They were very creamy and tasty.

And so time passes but ever so slowly towards the end of the treatment. Next week is my last treatment. The anxiety that it will all go well is mounting, not helped by the apprehension for Market Day. I only have 8 in my year 9 and 10 class, but the diversity of characters mean that it like herding cats - and the day before Market Day some of the boys decide they will polyurethane some boards for cheese and crackers. They will have a lingering smell for a while!
Last week I was at golf and we let a couple of chaps through because I play so slowly. "What are you all wrapped up in a wooly hat for?" said one of them because it was a beautiful day. I'm having chemo. I usually take my wig to put on after golf when we go to have coffee. But this time I hadn't so just had a snood over my head. When I turned from the counter to find a seat I found a whole heap of eyes on me, and a definite hush in the conversation. Trying to work out why I would wear this wooly head covering on such a gorgeous day. Just like I remember staring at the lady in First Light Frozen many months ago. (See Cancerverse 1)

The 1st of Asparagus

It sounds like a new season! this week we have had the first spears of our asparagus.  Can summer be far behind? I have been reading Beach Chic with Kate Moss from the Vogue magazine that Heather sent me for inspiration for the summer. Very skimpy. But today I am fashioning some of my light scarves into headwear as it soon won't be woolly hat season.
Last week I went to Look good Feel better put on by the Cancer society where they give you a makeover and lots of free makeup. It was good to learn how to apply makeip when you have no eyebrows and eyelashes. I still have a few stubborn grey wirey ones left. I didn't buy into the "get them waxed off" . I was late to the morning as I had a class to teach and when I went into the room I was just devastated to see the number of young women there. About 6 of them in their 30's and 40's and 4 of us older ladies - but not that old.
Yesterday I had my 5th chemo. I knew the two ladies who sat next to me. Both of them could not take the treatment they had been given. Rousie's finger and toe nails had turned black and she had black blotches develop on her scalp, so one of her chemicals had to be dropped. Susan who is having 30 weeks of 1 hour a week chemo had ended up being bought to hospital in an ambulance with a fever at week 4 has had her treatment reduced in dosage  - I just hope she doesn't have to do more than 30 weeks! 30 weeks! 18 will be bad enough. It has made me extra vigilant as I would hate to fall at the last hurdle - yes only one more chemo to go now. Patsy, my gun oncology nurse let me down yesterday, and had to have 3 goes to get a line in so bothe my hand are battered and bruised today. But feeling OK, just a little bit unsettled in the tummy.

What day is it today??

Apart from Camille's birthday.
Its 50 days to the end of treatment!! And probably only about 14 of them will be YUK.

So this is an artists impression of my neck lump. You can see that the last scan measured it at 1.5cm and they would like it to be about 1cm. Hopefully this is what the next two treatments will achieve. Then it is likely to be free of lymphoma.

Cancerverse 4

Cancer Cartoons

I'm Mrs Bristlehead
Like a small child's art
With spikes of hair
Just like Bart.

 

I'm Mrs Treacle-legs

Torpid Limbs in toffee shoes

With woozy-woozy knees

Struggling through the ooze

I really shouldn't dignify in verse

Cancer's Brazilian Wax, but in reverse.

Too much information - don't go there

When your nether regions lose their hair.

(No picture supplied)

The Waiting Week and the Lurking Lump

Mind games.
On Monday I had a  CT scan. I thought it was going to be an hour and a half, and that was all the time I had, but it turned out to be an hour and a half drinking the barium meal then half an hour having the scan, so a bit of a panic on then to reschedule around my teaching program which I am having to be very careful not to interfer with too much.
Its a pretty unpleasant experience with some miserable times on the loo to follow, however they do warn you to keep things going so the barium doesn't set in your digestive tract.
My lymphoma lump is still quite big so I am not particularly hopeful when I see Dr Goodman on Thursday, but it may show some improvement.
Sometimes when I run my hands down either side of my throat to check whether it is getting smaller I think I feel a lump on the right hand side as well.
Sometimes I think I can feel lumps under my armpits where I didn't have them before.
Waiting for the unseen to be revealed.

4th one done

Thursday was my fourth chemo treatment, and it was in my right hand so all the nurses could admire the lovely ruby ring that Duncan bought me for our fortieth wedding anniversary. This is taken on the Friday and you can hardly see where Patsy put the line in - she is such a pro! One of the ladies was on her last treatment, so Pat, who had to come for a couple of hours each week (for the foreseeable future) shouted cupcakes for morning tea, which did add to the jollity of this session. Duncan took me up and stayed until the line was in, but as the weather has been so gorgeous he decided to go and play golf after lunch. He has been great, helping with the washing and ironing and vacuuming and every night he clears up the kitchen after dinner. Emptying the dishwasher, getting the rubbish out and continually filling me up with water as well as some wine. In fact I wonder why I didn't have cancer in the first year of our marriage!! I was very thoughtless and asked Olwyn to come and pick me up - Olwyn didn't have such a good time on chemo, so she was at first a bit reluctant, but then she thought she should face the demons. Which was very good as part of my lunch was an orange and a very blunt knife, and as I am not very dextrous with my left hand having lunch was a bit awkward without help. (Thanks to those of you who sent texts - but I couldn't text back with my left hand).
Seem to have come through this one OK, with the usual symptoms but able to manage them quite well by now.

Doing the sums (somes)

I just want to be me
I dont want to be me+cancer
Sadly baldness = me + cancer.

Some days I don't want to talk about cancer.
Some days I don't want to listen to your story about your friend/relative who has cancer
Some days there are just too many days to go.

The New Man

My new specialist is Dr Hugh Goodman, Haematologist from Waikato Hospital. He is the younger of the two men in this picture (second from right). [Sometimes its hard to get good photos off google]. He is tall and suave with a relaxed sense of humour. He was very precise in his communications with us, and obviously very thorough. Sadly he would have preferred that I had taken the other treatment option that I was given.
1. Six cycles of chemo in Gisborne starting the next day - the option I chose.
2. Wait 2-3 weeks to have a PET scan, then 3 chemo in Gisborne followed by a month's worth of radiotherapy in Hamilton.
Dr Forgeson said they both had similar outcomes, but Dr Goodman says the second option has a slightly better total cure rate and is already talking about follow-up radiotherapy anyway. So that's all a bit disappointing.
More blood tests and scans.

Cancerverse 2

Positive

Some people are perplexed by my positive attitude

Faced with Death I accept Chemo with gratitude

Chemo - and what comes with it

Hot drinks searing on the gullet

Foul tasting lips

Throbbing nail cuticles and fingertips

Stomach, cramping growl

Gurgling, griping bowel

Ringing tinnitus in the ears

Denied the dignity of hair

Mouth ulcers and tender nose

Concentration that comes and goes

But hey - wife, mother,

Grandma, friend, organiser, lover

Sister, teacher and all the other

You've got to fight for your right to recover

My Support Team

So many of you are keeping my spirits bright with messages of support. Here's one from April on our first day at varsity in 1970 ready to take up residence at 26 Ariki street in Grey Lynn. Look at my waist!! and those legs aren't bad. Others are sending cards and letters, sending funny jokes and emails, phone calls and even small presents, visits for a cuppa, hugs and kisses. I can't tell you how much I appreciate this - especially when the weather is so bleak. There has been the odd day when their has been no messages, and it is very easy to start to brood as I rub my prickly bald head.

Thank you all, my progress has been so good through this bitter journey because of your support.

Cancerverse 1

Forewarned at First Light Frozen
May 2013

My treatment doesn't start for another week
I go down to First Light Frozen to get some steak.
At the counter next to me is an elegant woman
Telltale black turban and eyebrows artfully drawn
At First Light Frozen I am forewarned of what is to come
Just put on your make-up and get the shopping done.

02.07.13



And the kids came back!!

Who is this handsome man sitting in my chair?

Why, its the Group Marketing Manager for Waikato University - starting October.

Simon's trip back here did not get off to a very auspicious start as his passport had expired (Those 5 year passports are catching everyone out). However a rush job by the embassy and he was on his way, ostensibly to see his sick mother, but also to tie up lose ends with the position.

Jill was due to arrive the day that Simon left, but we couldn't have that! so we got her up here a day earlier, and Simon stayed a day later. Jill was late arriving so we had champagne and canapes and lots of excited chat.

The next day was brilliantly fine so we set off for a walk - part of my regime of keeping fit to fight the cancer. This is Tuesday - by Friday all that hair has gone.

Then coffee and cake at Muirs.

 WE stopped in at Eastland Eyecare to pick up Duncan for lunch and it just happened to transpire that Simon didn't have a pair of sunglasses. ("Thanks, Dad")

Very trendy!

 Toasted Brioche, banana and bacon for me and seafood soup for Simon and Duncan. Jill had a burger. The Works had just put on a new menu, and with the glorious sunshine a most enjoyable lunch.

Hair Today, Gone tomorrow.

Quite a process has happened this week. My hair has gone from normal to nothing. So lots of photos to follow this process. Last weekend it was pretty normal, but thinning. By Tuesday there were definite bald patches.

 By Wednesday there were little piles of hair all around the house. I started to feel bad about the hair loss. Secretly I thought it wouldn't happen to me.

Still a bit of a fringe - thank goodness I could wear a hat and still look normal. On Thursday I had my second round of chemo. The effect of the prednisone was to keep me awake that night. And by morning I had decided to get it shaved off and clear up all this hair. So I took what was left round to Karen and she gently shaved me off!

Weird, but I was OK with it. From inside me I can't tell that I dont have hair. Much in the same way that I don't feel fat unless I stand on the scales.

It feels like a soft leather couch, and hasn't been as cold as I thought - though I wouldn't want to go outside without a hat.

I've seen lots of people with the same haircut as me - guys mainly. Thank goodness it is popular.

 But I still think I will wear the wig when I go out.

Just a shame that I am getting so many compliments on my hairdo when I go out! I might be wearing my wig for ever! I have been truly blessed to have my two children with me during this traumatic time (not to mention the help with the vacuuming up of hairs), but more of their visit in the next BLOG.

The robber - that bastard Cancer

1.Its been quite a sad week as I have returned all my summer clothes to the wardrobe from the spare bed where I was preparing to pack for our trip to see Simon, Jax and Theo. All matched up with sandals and jewelry .Its been too long since I have seen my son, and playtime with Theo is always worth its weight in gold. The cruise down the Nile cancelled - just as our interest was heightened my reading my Dad's War Diaries about his trip down the Nile.
2.My job has been swept away from me - I thought I would have eight hours as the specialist suggested I could, especially as I feel so well. My days are quite structureless now, and the longer I stay away the less the chance that I will return to work. I'm sure I will have to fill my days with something.
3.My white blood cells have been drained. How could they be when I feel so well? They should be between 2 and 7.5  Mine are 1.6. I know this is how is should be, but I thought I would astound them with great results.
Thank goodness Jill is coming to visit.
Thank goodness there are other plans in the pipeline.
Thank goodness things can improve when you are forced to change.
Thank goodness I can still enjoy a glass of wine when I'm feeling low!

Hair is the news

The last normal photos I had taken were at Jill's PhD ceremony.

Shortly after this I learned that I had lymphoma and the most likely outcome would be R Chop chemotherapy which almost guarantees that you lose you hair.

I read in the helpful little book that if you have you hair short it falls out less painfully and less in clumps. So I went to the hairdresser and got it cut short. It was a little bit sad, but a good red colour lifted my spirits. I had to go scrambling for my range of earings from the good old days. (I dont have pierced ears)

 Apparently you can start losing your hair from day 12 of treatment and the wig lady encouraged me to come early in case we had to send away for a new colour. But she had what I wanted anyway - streaks of honey and red. The wig is asymmetric  - we are hoping this will detract from the lump on the neck which is getting smaller and softer.

 My hair hasn't shown any signs of falling out yet, but I feel confident that the wig will be OK which is just as well because I look like a praying mantis in a turban.

So now I have entered the world of wigliners and wig shine, scalp shampoo rather than hair shampoo.
All new steps along the way.

Week One is done

It is just now as I look at my chart that I realise what a hell of a long time 18 weeks is. The treatment has been very hard on the digestive system. I have had both diarrhoea and constipation, wind at both ends,  bloating and cramping. Tea and red wine have gone out the window - must be the tannins. Hot food now scalds all the way down my gullet as the layer of cells there is altered by the chemo. There have been lapses  in energy - of total torpor  - treacle limbs so hard to move. And the worst of it is that I cannot predict any of this - just like the blood noses which gush at unexpected times.
On the positive side I am sleeping very well, and very often. Chewing gum seems to help settle my gullet and cramping. I am getting maybe four hours a day when I feel totally normal!! I've lost another kg. I am still able to walk with my friends. Still able to socialise for short periods - till my concentration lapses.
17 weeks stretches before me. 
Right-o now to get the photos ready for the big wig reveal!!!!

Day 1 of 126

 Now we begin the treatment - the first day of 126. They warm up your hands and then find a nice vein. Lyn, I fear you would not be a good candidate for this! The first treatment is very long as they take their time to inject 5 different chemicals into you.

 But the first one they give you is Phenagan which makes you very drowsy and  helps to relax the body so that it is not shocked by the other chemicals to follow. They laz boys have been well used - I almost wish I had a more supportive chair. Olwyn had warned me about feeling "antsy" and wanting to move around all the time, so I knew it was just a couple of hours of discomfort, and promptly went into a fitful sleep. The nurses say I snored - but I think this might have been a little joke.

 Now the treatment is starting to be injected. I have woken up and had a hearty lunch of sandwiches and Mystery Mushroom Soup.  Patsy was a nurse in ICU for many years and then had a stint as a vet nurse, so I guess if you bark or whinny she will come rushing!

 The next drug must be administered slowly and under supervision. This is the one is the one that will make your hair fall out and make your pee pink. But I guess it has another job as well.

So six and a half hours later I tottered off. Sick and tired of sitting in a chair, so cooked dinner and even had a glass of wine. Feeling good today, but my mouth is very dry, but no nausea, so pleased with how  it is going so far. 125 days to go.

Silly

On Thursday the kids had a shared lunch with me. In exclusive Brethren terms this means I have first servings of the food and then retire to the staffroom to eat so as not to break the "not eating with the exclusive brethren" rule. They also gave me a goody box - enough treats to last the 18 weeks of treatment, and certainly guaranteed not to allow me to lose weight.  I managed to hold it together throughout all this and then three of my old students from previous years appeared with a huge bunch of flowers AND  a vase and this card. I was in floods of tears and then my nose started bleeding so I was a right mess!
Never mind - the sentiment is excellent!!
However looking at these two girls I wondered what I will wear when I lose my hair, and while their headgear is very fetching I have opted  for a very classy felt fedora from Ezibuy. It will either cover my thinning hair - or hold my wig on in the wind. Today's silly something - buy a silly hat!