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Aaaah, still loving our life!

Friday, 20 May 2016

Grateful Beyond Words - Mindfull Of What We Have.

Last year, after I'm not sure how many weeks of tests, worry and uncertainty, we received Jon's diagnosis for his lung condition. We were house hunting at the time when we did not know what the situation was with Jon's health. It made things difficult beyond belief; to be positive about really wanting to move, not telling the boys anything until we were sure and getting on with life in general.

After chest x-rays and CT scans we were told he was suffering from one of three things; single cell lunch cancer, lymphoma or Sarcoidosis; we needed a broncoscopy to determine for sure. 

On May 20 2015 we were finally told it was Sarcoidosis. We had never heard of this disease which is benign but can be quite serious. It is described as a snowflake condition because it can present in so many different ways, including cancers, as well as being diagnosed in the eye, brain and other parts of the body. Jon's symptoms had included red insect-bite like marks on his legs, major flu symptoms in the beginning, fatigue, a persistent dry cough and the scans showed a huge swelling of the lymph glands in his chest.

He has continued taking steroids for it since then and luckily there have been no side effects, no weight gain etc. We have an appointment on June 1 to hopefully find out if the lymph glands have reduced in size. I have to say he is soooo healthy right now - you can see by all the work being done at the house - but we have found anxiety is a huge factor as he can at times be unsure of whether he is relapsing, if he will always be here for me and the boys when they are young and so much more.

So we live with all of this daily - I am by no means alone in all of this I know -  this is just our experience of things. I think, in a way, we have been lucky to have the work and renovations on the house to do as it helped us to get through the after effects of the diagnosis, even though at times Jon has felt he might be doing everything for me and the boys as he may not always be here for us.

Phew, what a post. Sorry if this is depressing in parts but life happens to us all, good or bad, and I know I am able to get stuff out of my head by writing it on here sometimes. 

(Another major entry for my Journal of Gratitude.)

The sun is trying to shine just now but whatever the weather, literally, I am grateful for every second I have Jon in my life, even though our time together will never be long enough. You learn that you must make the best of EVERYTHING, not waste a minute and be grateful for all you have, and what you nearly didn't.

Thank you.

Lou.xx





20 comments:

  1. My sister in Pembrokeshire was diagnosed with sarcoidosis several years ago, although it took a long time for them to diagnose it. She had side effects from the steroids (vision and balance) but is now in remission. I wish your family well and thank you for the pleasure of reading your blog. It brings a little of "home" to Michigan!

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    1. Thank you shadypinesqltr. Thank you for your good wishes, I hope your sister continues to improve and glad you enjoy reading my ramblings.

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  3. well that came out of the blue, I think you have been coping extremely well as a family you have had your fair share of stress over the past 12 months, you have a lovely family home and I hope you get plenty of good news coming your way

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    1. Thank you for that Dawn.xx It has been tricky at times but we keep talking and let each other know how we are feeling and do our best to keep positive. After something like this, which is out of your control, you feel you owe it to your family to keep as healthy as you can to be around as long as you can and that is for our boys.xx

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  4. We never realize how important health is until we face such difficult situations that can have a huge impact on ourselves and our loved ones. My prayers are with you and hope your update is good news. Keep talking - all problems, whatever they may be, are easier to bear when carried together. Hugs to you and Jon. Ranee (MN)

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    1. Thank you Ranee for your kind words.

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  5. Thinking of you and hoping all goes well and is positive at the appointment. Since 2008 we too have been through a similar journey, and a journey it is indeed. For me I realised you can think too much..now I just enjoy and appreciate the "now" for as long as that "now" is. Living with life limiting conditions will never be easy.. I know that. but i wish your little family many happy years ahead

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    1. Thank you for all of that Maria. Very kind of you and I know, for you, day to day living is difficult at times, too.x

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  6. Goodness, that is quite a lot to have hanging over you all when you have had so many other upheavals. All good wishes for the review appointment and, of course, Jon's ongoing progress.

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    1. Thank you Greta. The news can be static or better we think so we'll wait and see.x

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  7. I would love to follow your blog but unfortunately the font is much too small is there any way you can make it a bit larger? Many thanks.

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  8. Sending you and your family good thoughts, Louise. My husband, Chuck, has had a few close calls, including a cardiac arrest (only 8% survival rate), so I can really relate. We think, like you do, that living with uncertainty puts in high relief the importance of appreciating every moment we have with each other and our family. You really never know when any of us will go, but it's so easy to "gloss over" that reality in the day to day. Gratitude makes our life much richer in every way.

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    1. Hi Kathleen.I appreciate your kind words.

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  9. Awe big hugs. You deserve all the happiness in the world and I wish you it in bucketfuls xx

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    1. Thank you for your very kind wishes, Tracy. We really are not expecting any bad news on Wednesday but it still doesn't stop you feeling a little anxious at times. I find myself just sitting here sometimes thinking I should be doing something but can't seem to get going, then I think about the philosophy of just not wasting time so do my best to get on with something. See, guilt gets me anyway anyhow being a stay at home mum!xx

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  10. Because I'm reading this in retrospect, firstly I'm really pleased that you both received the lesser of the three evils as a diagnosis. What a huge relief! And also, what a coincidence that there was a 'case' of sarcoidosis on Casualty last night - weird coincidence. X

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  11. Thank you for that. I don't watch Casualty but may take a peek on the i-player in the week.x

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Thank you so much for finding the time to comment. I really appreciate it and will always try to reply.xx