Hi.

Thanks for message.what showed up on ct scan was fluid on the lung.no tumours and lymph nodes back to normal.there doing a test on some of the fluid just to be sure.

So am hugely relieved 

Andy

Hi Andy,

Great news! Wishing you all the best for your return to "normal" life!

Joy 

This is fantastic news Andy, congratulations!

My news is somewhat a little unique. My tumour is 7cmx5cmx5cm and placed half around my heart, touching fingers crossed, touching chest wall and two enlarged lymph nodes. With entry into the mass from my lung. It's got them all scratching their heads!

Next step PET scan, then bronchoscopy and biopsy with results on Tuesday 28th January. So more bloody waiting!

Hi Gnomi,

I am sorry to hear that you are going to have more waiting. I am wishing you every bit of strength and stoicism for the next couple of weeks having tests and waiting before you get to starting treatment. That time will come.

I saw the oncologist last week and spent a few days really struggling with the word "incurable"  but yesterday, when I went to find out the outcome of the final tests on the tumour and the treatment regime,  ( which I had been told was most likely chemotherapy and immunotherapy combined), I had some much better news which was that I had a positive result for the BRAF gene mutation and will be having targeted therapy.

This has increased my survival situation and most like reduced the side effects of the treatment. I will take 3 pills per day.

Please get in touch for any support you need as I know how draining the waiting is, and let me know your next steps.

Thinking of you very often

Joy x

Hi Gnomi,

I was wondering how you are getting on with all the tests and the waiting for results. I hope you are okay as it's not an easy time that's for sure.

All the best

Joy x

Hi Joy,

I've just had both the liver contrast MRI and PET scan. EBUS on Thursday and the call due on Tuesday, 28th Jan with provisional diagnosis.

I'm actually getting more and more pain as each day passes now. I couldn't face work today (who are incredibly supportive and I'm on light duties and reduced hours) as the pain had me in a bad way this morning. I've got really stron co-codamol but I try not to take them until bedtime. I'm hoping a rest will ease everything a bit but it's not easy with a teething 8 month old waking every hour of the night ‍♀️
 

How are you doing? Thank you for thinking of me, I'm incredibly touched.

Xx

Hi Gnomi,

It sounds like you are having a really tough time. It's just so unfair to have to deal with this at the same time as having a young family, not to mention work!  I hope you are getting help at home and that the treatment happens as soon as possible.

I am okay, thank you. I have started on my targeted drugs and they are just pills, taken every day,  twice a day so it's very manageable. So far I've had minimal side effects. My surgical wounds are healing and I'm able to do normal activities with no pain relief.

Unless I get bad side effects in the next few weeks, it will just be a waiting game for me for a while now.

I just hope you can keep your pain under control. You sound like a very strong person and you will get through this.

Thinking of you

Xx

Hi Gnomi,

No need to reply I won't be offended at all but I am wondering how you got on the other day?

Hope you are doing okay.

Joy x

Hi Joy,

So after another two rounds of biopsies in my neck and lung and sternum, I finally have a diagnosis.

Classical Hodgkins Lymphoma.

I'll find out staging, grading and treatment plan on Thursday. Given it's in my neck, lung, thymus gland, chest wall, ribs and heart I guess treatment will be heavy. However, I remain positive that whatever they decide to blast me with may well beat this monster into submission. I hope so. The cough is driving me crazy and the episodes of haemoptysis terrify me and my family.

Hiw is your treatment progressing? Have you recovered from your pneumonectomy? (Don't know if I got that right!)

Much love,

Gnomi xx