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!

What am I up to now?

When I first told the students at school that I had cancer, one of them asked "What stage are you at Miss?" I replied "Too early to say" which was quite clever of me as I had no idea what she was on about. I know now that I am just entering stage three. I have the BIG lump on my neck and another swollen gland on my collar bone. That takes me from stage 1 (one lump) to stage 2 (more than one lump) then the body scan revealed that I have one swollen gland below the diaphragm - near my tummy - and that takes it to stage 3. However this gland is 11mm when they class it as enlarged at 10mm. I have some other glands near my heart which are enlarged but only 5 or 6 mm. My breasts, armpits, adrenals and kidneys are clear. Stage 4 is when your bone marrow is affected and I won't find that out until next Wednesday. That's serious.
I have diffuse large B cell of non-activated germinal centre. Ok so that the "tech" report.

Getting ready

Just a week until we see Dr Forgeson, the specialist from Palmerston North who will come up and design my chemo cocktail - it will be a version of the RChop regime. Ha ha since my nickname as a kid was Chop (hence 222choppy was my radio call sign when I was playing radio announcers. Yes I did all the singing and the news broadcasts.)  There will be 6 treatments in a 3 weekly cycle. So I have ordered 6 Agatha Raisin Detective books from the book registry. They are very light reading. Duncan will order 6 bottles of (good) champagne for us to have as each cycle is completed. Although they do say my taste buds will be affected and it will have a slightly metallic effect. We were very pleased when Jill found some information that alcohol has a slightly protective effect from Lymphoma. I am saving all the easy puzzles in my sudoku book for chemo days. It is 6-8 hours for treatment no1, then 4-6 hours for each successive cycle.
Liz and Barry were down last weekend, and Liz bought me her wig block. Her wig she called "The opossum" and advised me to spend a bit of my own money to add to the government grant to get one which doesn't look like roadkill.
At present my neck is very swollen as I have a bit of an infection in my mouth. It makes me realise how careful I will have to be once treatment starts.

Premonitions

This is the first of the BLOGs now that I know that the lump on my neck is a lymphoma and will require chemotherapy.
I had always said that I would be retiring at the end of my 60th year and I can remember a dragging feeling as I headed back for school this year. Now it doesn't look like I will be able to make it through this year, and I am very doubtful about returning next year.
It wasn't long after the lump appeared that I had a nightmare. I was in the kitchen (at 36 Wylie St, Rotorua) and heaps of smiling faces were coming in the door to greet me. All of a sudden a large black bird (like a black magpie, or maybe a crow) flew in and gripped onto my forearm and started pecking at my neck. I was screaming "get it off" -I may have even called out in my sleep. All the smiling people just kept on smiling and chatting and doing nothing! Then Jill came pushing her way through the crowd and lunged at the bird... At this point I woke up in a very agitated state. From that point on, when they said "it's probably viral, but we'd better check that its nothing more sinister"  I think I secretly knew the answer.

There are about 5 possible causes of lymphoma including presence of the Epstein Barr virus - a flag for Glandular fever which I had about 6 years ago and agricultural chemicals. However Duncan thinks it is highly suspicious that this should strike during the period when I could not get Marmite even when it was back on the market! I guess what we mean is - who knows what caused this to flare up?