this is How I Will Remember Our Precious Stone
(This is just a page for Gem, for Updates on how she is going and if there is more than one person that needs to be notified)
ANNA LOG NOTES
Anna called me earlier informing me that
That Dr Ann just came in and said that she could possibly die in the next 7 – 10 days
So I need to change ur ticket booking. She has too much infection in her lungs
4 lots of infection, 3 in 1 lung – 1 in the other,
has no oxygen in blood and her haemoglobin’s have dropped and doesn’t have enough platelets
Until she gets on top of her infection and replenishes her immune system the chemo could kill her if she has it now.
The cat scans have revealed that she doesn’t have a brain tumour.
however the Lymphoma has taken off. and Dr Ann has Said that there is No possibility of going to a hospiss to die..
She’s not strong enough.
Gemma finds it very difficult to talk and be aware and to talk, However she is a great listener (hence why i thought of making her a Mix tape with favourite songs and positive words, messages and conversations So please guys, if you can, send me any songs, voice recordings(of your talking about how much she means to you) or favourite memories. so they may be infused to focus her mind and heart on wanting to fight and keep living.
love you all
Gemma is having Chemo, every monday for 6 hours, This afternoon Stewart informed me that over the stages of the chemo, one of the phases breaks down the cancer cells, Gemma wasnt strong enough for that part of the treatment to continue and she started shaking. and therefore they had to stop.
The Chemo starts at 7:30 am’s on Mondays and Goes for apron 6 hours, Please consider this when calling after to see if she’s ok.
Love you lots
Below is an email from a friend of Stewarts who has been though the same thing to help Gemma, hopefully it will help you to.
I have been thinking about your friend since the phone call today and tracing back to an approximate time in my own journey and I guess Journey is he right word. For me the advice of the diagnosis was the beginning of a reasonably long journey that has in some ways still not ended for life will never be the same as it might have been without the intervention of the Lymphoma.
My diagnosis came to me by phone from the Brisbane based Oncologist while I was attending a company conference in Sydney. He had been conducting tests and I was aware that we were tracing a blood disorder. His words were fairly simple: : I have conformed my diagnosis and you have A form of Lymphoma (non Hodgkins) known as Mantle Cell Lymphoma and you need to be in the Wesley (Hospital) by 2.00 pm next Sunday. I, of course, looked up Mantle Cell Lymphoma on Google and three different sites advised me that it was incurable or at best any remission would be brief.
THOSE WEBSITES ARE OUT OF DATE AND NEED TO BE IGNORED. They are of absolutely no value to a patient and after the first foray I never referred to the Web again.
To jump a little forward, I was advised by the Oncologist that some patients had died within 14 days of diagnosis, about 80% didn’t survive the 6-12 months of treatment and about half of those remaining didn’t make it past 2 years leaving about 9% to survive in the longer term. NOW, before that elicits any despair, he now tells me that with the medication provided to me (“we wouldn’t normally give this to someone your age, but a, we think you are strong enough to handle it and b. if we don’t you wont be around to comment”.) the survival rate is closer to 50%. Given many of those who contract this type of disease are much less fit and much older than I was and your friend is, it makes the odds so very much in favour of us “younger ones”
Oddly, I never believed I would die. It wasn’t a strength of will, just a belief. But an important one. Besides, all your energy is required to simply combat the effect of the drugs so there is little time to contemplate the future
Now to more practical matters and I should have prefaced this whole piece with the fact that my journey related to Mantle Cell Lymphoma which I believe prefers to attack men in the 60 plus age bracket. As we know there are many uncurable cancers but they seem to be getting on top of the Lymphomas, the majority of which are Non Hodgkins
Hopefully whatever the diagnosis it is for your friend (my apologies for not remembering her name) it is of a less serious strand of this particularly nasty cancer. So to some practical advice:
I was on a 21 day cycle: 7 days in hospital, 7 days living at home but attending the outpatients ward in the hospital for continuing medication and 7 days at home with takeaway medication. The first seven days of intensive chemotherapy has the purpose of destroying most of the living parts of your blood. Then the second seven days continues the process in a kinder way before the third seven days is a build up to prepare one for the next assault. There were 6-8 cycles of this process. I have talked about the insertion of a PICC Line that allows for various drugs to be administered intravenously at any time and a constant water solution also to be kept going. They should provide a list of the various drugs being administered. I had no interest in understanding their names or purpose but each has its own particular effect on you and it helps to know what is coming to psychologically prepare for the ride ahead. Sometimes that ride is only for a short while, sometimes for some hours. It helps to know what is coming and prepare your own strategies. Nausea is a constant companion but they should administer suitable drugs so that you do not vomit….just feel like it. Food will become an obstacle and I would often feel revulsion at the noise of the food trolley coming down the hall. At one stage I had to throw the menu as far away from my bed as I could…..even the words on the menu revolted me. This should never be an embarrassment and the dietician gave every assistance to help me find food that I could eat. I learnt to keep a few mint patties and some potato chips in my drawer and they often became midnight snacks. I also found that I could get myself to the staff canteen and if I saw anything that I thought I could eat, I would buy it and eat it immediately. There was no embarrassment in this and the staff understood. They told me they had seen full trays of food thrown through the ward doorway which makes my hurling of the menu a little tame. Because of the constant supply of fluids there is no chance of starving and the steroids ensure that you dont lose weight.
Yes, my hair did fall out and it happened very suddenly. In my second week and first week at home (or thereabouts) I woke one morning, ran my fingers through my hair (as one does) and came away with a very large handful. Into the shower and a vast amount simply washed off and attempted to block the shower outlet. I then drove to my barber, explained the situation, gave him the option of proceeding or not and he took to me with the number one clippers. Unfortunately the number one leaves a very fine stubble which then falls off like dandruff so have a laugh, get a scarf and forget about it. Losing your hair is the least important thing that will worry you at this point……and it will grow back….besides, there are some lovely colours available in scarves and the fashion can be changed daily.
To other practical matters. Once the chemo begins you become “Cytotoxic” and that means you are poisonous to unprotected people. You will need a reasonable supply of old but casual clothes (Maybe nighties and Pyjamas but I preferred old track suit pants and torn t shirts) and these will need to be handled only by people wearing rubber gloves and should be washed twice before being worn again. Much of your clothing will become soiled with various bodily fluids or chemicals and because of the difficulty of getting sleeves over the PICC line that will hang out of your arm, always with tubes attached, don’t be afraid to sacrifice the odd T shirt to a pair of scissors. When I could I walked around the ward, doing lap after lap and my Ugg boots became very good friends. Make it a rule to always shower every day, no matter how hard it might be and maintain your pride and as far as possible, self respect. Never hesitate to call for assistance whilst in hospital. The Chemo nurses are highly trained and are wonderful people. They will become your friends as will the Oncologist
Now depending on your diagnosis, none of the foregoing may be even the slightest bit relevant. I was given a drug regime known as “Hyper C Vad” For lesser serious Lymphomas they sometime use “Chop R” which requires much less time in hospital and is no where near as severe. I f they choose e to give you Chop R then you are home and hosed, just in for a short term rough ride.
Finally, I am available to chat at any time. I got some snippets of advice a couple of days before I entered hospital and not one word was wasted. Please feel free to contact me at any time including those dark moments in the middle of the night. My phone is never out of reach and if you want a visit in Canberra or wherever they treat you, let me know
I’ll ride this one with you if that will help
0420 442 060
Ps. I should add that in the second and third weeks of the cycles they will administer large doses of steroids either intravenously or in pill form (10 per day at one stage for me) The effect of the steroids is to make you very angry and aggressive and likely to attack those trying to help you. You will not understand this and simply think everyone is looking for a fight. Before you come home after your first period in hospital please find out if you are on steroids and discuss the possible behaviour that could come from them with your family and friends. My own behaviour was atrocious until I understood what the cause was and could add some self control. Until then I just thought that everyone just wanted to make life difficult and argue all the time!!!!