“Hole” lotta love

barts

I’m sitting in clinic, balling my eyes out today, grabbing a Macmillan booklet on the emotional effects of cancer and turning the pages like a woman possessed.  It’s a good read if you’re in my situation – here’s the link to the PDF

http://be.macmillan.org.uk/Downloads/CancerInformation/LivingWithAndAfterCancer/MAC11593Howareyoufeeling-theemotionaleffectsofcancerE3pdf20141006.pdf

It has not been a good few days for me emotionally. I’m feeling very overwhelmed – I blame going through 4 years of ups and downs on this blog to be honest. I’m missing the children so much. I think the high of having them here with me and doing all those wonderful things has led to this low. I just should be with them, doing all the things that we take for granted as mothers.

As other patients sitting here watch me nervously, I want to tell them it’s not cancer I’m crying about, in fact this is probably the longest time since diagnosis I haven’t worried about it. I really feel on top of everything medically and I’m waiting here to get my first CT results since the trial began – I’m apparently very very close to Complete Remission which, after only 3 cycles of Obinutuzimab and 2 months on the full dose of venetoclax, is remarkable. I just need to be with my children now – it’s breaking my heart not to be there for them. I’m sick of being strong and I’m cross with myself for feeling so low when I’m doing so well and lucky to be on this trial. #passtheselfpitybucket #atleastthisshouldhelpthesinuses

Update tonight – I got to see John pretty much after I wrote this and told him that the tears were just to help me jump up the list.  The Senior Trials nurse had come to move me out of the waiting room and I think he got a bit of a shock when he saw the state I was in, it’s not very me.  He thinks I may very well be in Complete Remission and that the node which is still slightly enlarged could be scar tissue.  He’s very happy with the way things have gone.  The coolest thing was when I asked him if I should wear a mask on next week’s flight back to Australia and he said no that would stop me being able to drink the champagne.  I do like him, he’s on my wavelength and gets what I’m going through.  He thinks I’ll get to CR and no detectable disease, I just need to have something which I’m not good at practising…patience.

15 thoughts on ““Hole” lotta love

  1. It’s good to vent, and don’t blame yourself for feeling low. It’s understandable. Think of the good times you’re going to have with your children in the future.

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    1. Thanks Graham. I know this separation is aimed at preventing a permanent one and I will be home for the first time in 7 months in only 12 days – think it’s all just getting to me. I’m an on on kind of girl and I know this will pass but it’s good to share with you all x

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  2. I think you’ve been so brave all this time you definitely are allowed to feel sad. By the time you read my msg it will probably only be 11 more days and they will go quickly. Wishing you all the best. Xx

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  3. It’s okay to be emotional from time to time Deb. All aspects of your life have been greatly effected. Look how far you have come in such a short period of time and because of you and your posts you give people like me a tremendous amount of hope for the future. Thank you for being such a great person and blogger 🙂

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    1. Aw Luke thank you! You’ll set me off again if I’m not careful. Feeling better now thanks, I think it’s just that I’m climbing a hill and that last little stretch is really hurting! I know I’ll get there, thanks for helping me x

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  4. Deb it’s O.K. To ” act natural” I’ve so enjoyed reading your blogs. Keep up the good work. I just wish you didn’t have to take those long airplane trips. Of course it’s ok to cry in public. I remember crying all the way home from Hawaii to L.A . After saying good bye to my husband from R.and R. In Hawaii and he returned to Vietnam Nam. The guy sitting next to me must’ve thought I was an idiot. My husband spent a year in Vietnam Nam and we had two little girls 6 months and 21/2 at the time . By the way, he’s still alive and we will be married 49 years in April. When I was Dx with CLL, I thought for sure I’d be dead in 5 years. I will be be 73 next Oct. and I was Dx when I was 63 and I don’t have 13 q with a possibility of 20 years before treatment. As you know I flunked FCR and spent 12 days in a coma. Now I cook , keep house UHg , play golf and just finished my Pilates work out. So you see it’s alright to cry. When the storm is over the sun always shines, never fails. Keep active. It’s good for your mind and body. Your writing is exceptional and a great panacea for what ails us. You do know that many counselors and psychologist recommend writing for the soul.i love your metaphor ” touch the wood.” we knock on wood. Your child is unwell, ours’ is “sick.” I’m a California girl and that speaks for itself. By the way, I’ve been to Sydney three times, Canbera, Melbourne , Cannes, the great Barrier Reef, And Perth . We love Aussies , a really great U.S. ally. Hate the airplane trip , tho. Stay tough and keep the faith. You have a little ways to go yet.
    Niguel Sue , Sue Hamnquist California , Gal
    Dx. C.L.L. Trisomy 12, zap 70 pos, unmutated

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    1. I love your story Niguel Sue – did you ever keep a blog? If you didn’t you should start, you’ve got a gift for a turn of phrase. One of my many blessings throughout this strange period in my life is the people I’ve met online who’ve inspired me and given me strength and direction. You’re one of those I count lucky to have virtually met x

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  5. Tomorrow, tomorrow, the sun will come out tomorrow! Of course you miss those lovely kids and you’re doing the best for all of you by getting the best treatment! I really hope the CT results show CR and you can be back home doing regular mom things! And thanks again for your inspiring blog, tears and all.
    Barbara
    Still in w&w, 11q, unmutated

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    1. Thanks Barbara. I got a very good PR but almost at CR so I’ll take that. The sun is out today and I am feeling better. Venetoclax is a wonderful drug and I’ll just had to keep taking it to let it work its magic for longer. Thanks for the comment, Deb

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  6. So much for reminders about getting a mask for your trip home! Champagne vincit omnia!
    Drink enough of it and you won’t even need patience. Glad you’re so close to CR.

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  7. Hi Deb,

    Chin up mate, for what its worth – I think you are awesome.
    So happy that the doc thinks you will reach your goals. Cant wait to read those words 🙂

    Greg

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    1. Thanks Greg – if I got there too quickly it would end this story too early wouldn’t it? Feeling much much better thanks and John’s agreed I can still have the Bone Marrow Biopsy at the end of March and can have it in Melbourne so it means I’ll be able to get home after cycle 6 in time for Easter. I’m excited.

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