I think you might be right @DanielleH
Hi Danielle sweet dear !!! Reading this thread again … so glad that you managing to find some help. I go to Maggies too - every Monday and Friday. My husband and I just like the atmosphere there, we have few hours between my blood tests and transfusions.
You know from my day one I think of my husband … what if … (it is a year and half for us now). The “what if” have had different level of worry, for the last few month it is much too real.
You see, we just go … end of pain … you, my husband staying and have to find strength to keep going.
As you saying in 5 years your loved ones are taken from you one by one. Biggest hug to you darling xxx
Wednesday night now, your sister had her surgery today … please talk when you can to talk again. Its got to be a good outcome !!! It will take some time to know and then a long time to get better.
Look after yourself, hope the appointment with GP on Monday will be helpful.
Enjoy your time at the lake, sounds very special.
Big hug xxxx
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It’s so good to hear from you! How are you getting on with the trial?
Thank you for the hug, I really needed it xx
My sister didn’t find out until Tuesday that her surgery has been put back to the 5th Nov so we have had to move our time off around. I am on holiday this week so went to Maggie’s for a relaxation class, during it I got that feeling well up in me that I wanted to cry, so not so relaxing! Going to classes will be difficult as I have to work 5 days, they’ve said I can just call in for tea and a chat, I might do that after work.
It’s good that you have your husband with you for support, I know from mum how long the transfusions take, lots of sitting around and numb bums. At the beginning it was hard to watch but we got used to it after a while, seeing mum perk up the next day.
This week I have been focusing on my personal statement for applying to university, I went to college to do a HND in Services and now want to apply to study law. Mum was a Legal Executive and gave me the bug! At 45 I am a mature student, caring for my parents delayed things a bit but it has given me life experience and think about the employment issues unpaid carers go through. So I want to specialise in employment law.
I’ll post photos below of the loch and the Canada geese!!
Please keep in touch, I have been thinking about you and wondering how your treatment is going xxxx
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The building in the background is Maggie’s xx
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Good evening Danielle,
I love reading your letters very much, hugs, hugs and more hugs to you xxx
Your classes, well crying does help us to get through some tough times. You do that, really good cry, then gather yourself together and back in action. Right?
Next week Tuesday we will be holding everything crossed while an amazing surgeon working his magic. It will be all good, It just got to be !!! xxxx
Wow, what an exiting carer move. Very well done on keeping it going regardless the delays. Your parents will be very proud of you, they are watching (I do believe that xx)
Ok, lets feel you in with the latest in my world.
All October we just waiting (info on “lucky slot” will be available some time early November).
We have an option to start on line 4 of treatment (Venetoclax + Azactidine) any time, it is ok to delay the start. The trial will have V + A also, but + EP0042. The last one an absolutely new drug,
the combination of three will be used for the very first time.
Information about all the drugs is on line (in case if you would like to check it out).
I have been waiting for four weeks already, my cancer was not … so i had to start taking Morphine last friday (only to go to sleep, still holding on through the day). As you can imaging my consultants watching me very closely. Today the white blood cell went just over 15 and we started Hydroxycarbamide.
This great drug is a mild chimo, by watching the dose we should be able to buy some time for me. Hopefully my ribs will not be so painful too and I can leave the bottle of Morphine alone.
So Danielle, thats a great lot of details for you. Beside of my ribs and luck of energy I am feeling fine. On Monday the 4th I will see my trial consultant, he is away this week - big meetings with other top heads in the field. Four countries involved.
I want to be a Guinea Pig, I tick every box. Please pick me!!!
Dear Daniel more hugs for you dear, keep going girl xxxx
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Perhaps loads of love to you too @Karpeta, please do keep posting how you are getting on xxx
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@Karpeta , it’s so good to hear from you, I am glad that you enjoy my letters, it cheers me up to know I am helping someone.
I was at the doctors today and was diagnosed with depression, I have been given antidepressants which I’m worried about taking incase they make me tired and I won’t be able to drive. I have been told to contact a couple of bereavement services in my area too, that’s my job for my day off.
I went to an open day at Edinburgh uni on Saturday, the lecturers were so welcoming and I am going to make it one of the unis I apply to. It was sad though as I had to go on my own and reminded me how, if mum was still with us, I would have been texting and phoning her to let her know how I was getting on.
I am excited that you will be starting a new treatment regime, my mum was on Azacitidine for 4 1/2 years, it was a wonderful drug. Patients of my mum’s age were only expected to live around 2 years, she had so much longer. Mum was given Vanetoclax too when her Acute myeloid leukaemia (AML) relapsed and I did lots of research on it, such a clever drug. I will be thinking of you next week, please let me know on Monday how you get on with the specialist. You have so much fight in you, even though you are in a lot of pain, you are a real inspiration and remind me so much of my mum. Sending you many, many hugs in return xxxxxxx
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Good evening Danielle, hugs going your way first of all !!!
After reading your letter again just now, I have to reassure you I was not in a lot of pain,was just too much for sleeping. Only 5mg of M did it for me, so all good.
I don’t know much about antidepressants, but it can be very addictive. I do realize you need all the help you can get and you need it fast. You are an absolutely that same time you are straitening your pass and heading to the place you want to be. I hope it goes really well tomorrow at the uni. Love Edinburgh, first visit was in 2010 for the Edinburgh marathon. Later my business brought me there, I was designing and manufacturing some ladies tartan evening clothes for a Scottish retailer.
My next (and last) treatment starting on Monday. The trial was delayed by a month (for a third time !!!), after four weeks of waiting for “nothing” we going ahead with L&A plan. We have our plan all ready and starting on Monday. On day 1-9 V&A same time, then V alone with some supporting drugs. Will update you as I go.
Thinking of you and your sister, hope your weekend goes nicely, then the Tuesday will be here xxxx
Have to say, You pics of the lake look gorges !!! I have seen them last time after I posted my reply, so green still, amazing life going on there. Thank you for giving such pleasure. xxxxx
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Hi, it’s so good to hear from you!
I’m glad that you only needed a low dose of the old M, I’m sure you would much prefer something like a port and lemon instead but, needs must!
My sister’s surgery has been delayed again, a test our local hospital did has come back saying that there is a small chance the cancerous cyst originated in her bowel. They need to discuss her case in a patient meeting next Wednesday so things are all up the air again.
I will be thinking about you on Monday and wondering how your treatment goes, please let me know how you get on. Will you have to stay in hospital for a few days whilst they ramp up the dosage of the Vanetoclax? If so you can write to me and I can keep you company, I’ll have to go back to work to save my time off for my sister’s eventual surgery but I will message you back.
I had a day off yesterday and decided to pick up the knitting again. Mum taught me to knit and was always on hand when I dropped a stitch! It was hard without her but I am using a bright, multicoloured wool so it cheered me up. I have also been thinking about Christmas as it is 1st Nov, mostly about childhood Christmases, especially in the 80’s. I remember the foil ceiling decorations and the fairy lights that would always go out and we would spend ages changing each build to see which one had blown! I always used to go hunting for my Christmas presents when my parents went shopping! Do you have any favourite memories?
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Pressed send by accident! Sending you lots of hugs. Danielle xxxxx
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