Week 1 and 2
A heart felt thank you!
I have had so many great emails, texts i-messages to read this last week, it has been overwhelming. I promise to get around to answering them all individually before too long. I am hoping for a set of rainy days so I can have compulsory sitting in front of laptop or just feet up and reading a book. Whilst the sun is out I am being the typical conditioned Brit and just have to get outside; even if it only means a short gentle walk or digging up some weeds in the garden (currently all I am capable of) I feel tired and sick after the chemo day and just as I start to feel a bit better it is treatment day again. Mostly I feel strange / not myself.
At least the autumn colours are beautiful.
I am 1/8 of the way through my first set of chemo and already feel like a cross between a pin cushion, and a pill box. Life on 9 different types of drugs is a struggle; I am someone who dislikes taking any pills as I find it difficult to swallow them without gagging. My Thursday diet is 31 pills plus a chemo injection.
The blood is taken from my veins every Tuesday to check vital organs and blood count levels.
This week I have discovered that on top of everything else, I am low on sodium. It is the first time in my life that a nurse has told me to eat more crisps or Chups (as they say in NZ)
The chemo injection is in the abdomen. This is ok if I don’t look, but the injection area swells to a red itchy patchwork quilt like mass after a day or so. Imagine 16 different red swollen bits on your tummy and you will get the idea.
My current schedule is:
All this will ongoing from end August until mid/end October. Lots of fun in hospital.
I met a very inspiration woman in her mid 60s this week who has just been through all of this and is just coming out the other side. She has been having treatment for 18 months and is still on monthly bone strengthening. Everyone is different but she has been great at sharing and taking some of the scariness out of it all. I’m encouraging her to walk more and she is encouraging me to be brave.
I will be in hospital in Christchurch and immobilized for 30 days but having seen photos, the pipework looks fascinating. I may even get a machine that goes “ping” as well as a stent in my neck. I will lose all my hair (all over the body) at this time but Sarah is going to have great fun pulling it out (apparently it doesn’t hurt) I have always wondered what I would look like blonde.
The new diet so far….on chemo
Apart from increasing my salt intake, I have been told to adopt the pregnant woman diet to avoid Listeria. (my immune system is low) I have given up raw seafood (sadly no more oysters and smoked salmon) red meat unless burned to a cinder, soft cheese especially blue cheeses.
The blood thinners and Chemo have had a strange effect to my taste buds. Apart from everything having a faint taste of Marmite/ My Mate (effect of blood thinners) the shockers this week have been:
Sarah continues to make me smile in her her valiant attempts to pretend it is still summer. Its 7C and she is in shorts golfing today. She has a wet suit and swims in both Lake Waikatipu and Lake Hayes. On Saturday, she only got as far as the water line to discuss the temperature with the ducks, before bailing out.
Despite having roller coaster emotions, being constantly tired and feeling rubbish inside, I have had some fun this week. Inspired by James Cordon’s carpool karoke with Adele,
(Check out: https://www.youtube.com/watch?v=Nck6BZga7TQ ) I thought I’d try it on the chemo journey to Dunstan this week to keep my spirits up. I found some old CDs and thought for a change that I’d listen to someone who is not classical or opera or dead. Imagine yellow car Juke with loud music and very out of tune woman tapping the steering wheel at traffic lights, singing at high pitch Scissor Sisters “There ain’t no tits on the radio oh no” when a Camper van of Asian tourists pulled up alongside. I think they were trying to lip read and i got some very funny looks. I gave them a big smile and wave and carried on. Life is made for these moments.
I have had so many great emails, texts i-messages to read this last week, it has been overwhelming. I promise to get around to answering them all individually before too long. I am hoping for a set of rainy days so I can have compulsory sitting in front of laptop or just feet up and reading a book. Whilst the sun is out I am being the typical conditioned Brit and just have to get outside; even if it only means a short gentle walk or digging up some weeds in the garden (currently all I am capable of) I feel tired and sick after the chemo day and just as I start to feel a bit better it is treatment day again. Mostly I feel strange / not myself.
At least the autumn colours are beautiful.
I am 1/8 of the way through my first set of chemo and already feel like a cross between a pin cushion, and a pill box. Life on 9 different types of drugs is a struggle; I am someone who dislikes taking any pills as I find it difficult to swallow them without gagging. My Thursday diet is 31 pills plus a chemo injection.
The blood is taken from my veins every Tuesday to check vital organs and blood count levels.
This week I have discovered that on top of everything else, I am low on sodium. It is the first time in my life that a nurse has told me to eat more crisps or Chups (as they say in NZ)
The chemo injection is in the abdomen. This is ok if I don’t look, but the injection area swells to a red itchy patchwork quilt like mass after a day or so. Imagine 16 different red swollen bits on your tummy and you will get the idea.
My current schedule is:
- 16 weeks of Mobilisation Chemo – with regular checks. On Bortezomib (Velcade) Cyclophosphamide and Dexamethasone (Steroid) also known as VCD. If I get too weak, they will delay the chemo treatment day by 1 week at a time to allow my blood and body to recover
- Once a month bone strengthening infusion (Pamidronate)in hospital: 2-3 hours of watching a drip and time to read.
- If this is successful and my body can take it, I will have an autologous stem cell transplant with high dose chemo. This gives a good explanation: https://www.cancer.org/cancer/multiple-myeloma/treating/stem-cell-transplant.html.
- Basically they take out the stem cells freeze them, zap me with high dose chemo and then give them back to me via infusion whilst I am hospitalised in Dunedin, then in Christchurch.
All this will ongoing from end August until mid/end October. Lots of fun in hospital.
I met a very inspiration woman in her mid 60s this week who has just been through all of this and is just coming out the other side. She has been having treatment for 18 months and is still on monthly bone strengthening. Everyone is different but she has been great at sharing and taking some of the scariness out of it all. I’m encouraging her to walk more and she is encouraging me to be brave.
I will be in hospital in Christchurch and immobilized for 30 days but having seen photos, the pipework looks fascinating. I may even get a machine that goes “ping” as well as a stent in my neck. I will lose all my hair (all over the body) at this time but Sarah is going to have great fun pulling it out (apparently it doesn’t hurt) I have always wondered what I would look like blonde.
- I get a few months off (probably for Christmas) and then they start again with another 16 week session of consolidation chemo. The main drug for this is likely to be thalidomide.
- Not sure what is in store after that. Regular checks are likely but it will depend on the result of the treatment. Whatever, it means a life change for us both. Who knows how long my life will last now. What I do know is that I won’t be cutting back on the crisps! Walkers Marmite flavour perhaps.
The new diet so far….on chemo
Apart from increasing my salt intake, I have been told to adopt the pregnant woman diet to avoid Listeria. (my immune system is low) I have given up raw seafood (sadly no more oysters and smoked salmon) red meat unless burned to a cinder, soft cheese especially blue cheeses.
The blood thinners and Chemo have had a strange effect to my taste buds. Apart from everything having a faint taste of Marmite/ My Mate (effect of blood thinners) the shockers this week have been:
- Fruit and Yoghurt – causing bad stomach cramps
- Curry – Great to taste but the after effects of curry on steroids does not leave much to the imagination. Fortunately, as everything that now comes out of me is toxic, I have my own toilet!
- Some gin: Bombay Sapphire especially (must be the aromatics) and some pinot noir/burgundy is vinegar like. Something to look forward to later.
Fun..
Sarah continues to make me smile in her her valiant attempts to pretend it is still summer. Its 7C and she is in shorts golfing today. She has a wet suit and swims in both Lake Waikatipu and Lake Hayes. On Saturday, she only got as far as the water line to discuss the temperature with the ducks, before bailing out.
Despite having roller coaster emotions, being constantly tired and feeling rubbish inside, I have had some fun this week. Inspired by James Cordon’s carpool karoke with Adele,
(Check out: https://www.youtube.com/watch?v=Nck6BZga7TQ ) I thought I’d try it on the chemo journey to Dunstan this week to keep my spirits up. I found some old CDs and thought for a change that I’d listen to someone who is not classical or opera or dead. Imagine yellow car Juke with loud music and very out of tune woman tapping the steering wheel at traffic lights, singing at high pitch Scissor Sisters “There ain’t no tits on the radio oh no” when a Camper van of Asian tourists pulled up alongside. I think they were trying to lip read and i got some very funny looks. I gave them a big smile and wave and carried on. Life is made for these moments.
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