Hello, Newly Diagnosed

Well done for doing so well with the radiotherapy.Cath.

i had the 33 doses 10 years ago and have now just recently finished 5 days radiotherapy for my headaches.

i really hated the radiotherapy and don’t want to do it again but my headaches are so much better now and I actually feel better. We are in Bude for a few days and I am walking a couple of miles on the flat.  On the beach with the dog. It is so lovely.

i know what you mean about the tiredness mowerman. It is more of a relief when you finish treatment than a celebration 

I do  have some good news to look forward to, our first grandchild is due in June next year

it is good you may be able to have targeted therapy in the future 

I am n touch with Rob Metcalf and keep up with the research x

Oh beach walks with he dog - what could be better?! Well, except a grandchild of course

B.

That is good to hear Ruth, when there is no respite from a symptom, it is so so draining.  And you are living my Christmas wish - to walk my now 6 month old puppy on the beach again.  Have a wonderful time away with your loved ones and congratulations on the great news.

I had the go head today to complete the now 4 remaining sessions - mugs of tea all round on me  

Good things are going well for you.

thanks to you both for your good wishes x

How are you now ? Did you have any treatment ?

Hi Ruth, sorry for the delay in replying.  

I had 6 weeks of radiotherapy treatment which finished end of November.  I have a CT scan next week and follow up at the end of the month so I'll know how effective it's been.  It's taken a while to recover but I'm pretty good now and enjoying a simple life.  I didn't manage to get to the beach with our puppy at Christmas but I made it NYE, even if it did wipe me out it was so good.

Hope you are doing well after your treatment. 

Cath 

Well done for completing the treatment .

i have been better since my radiotherapy we are going back to Bude this week for a few days with the dog and the family as well this time for a break to walk in the beach. 
hope you continue to do well. Let me know what the CT shows.

Will do.  That's wonderful you are continuing to feel good, have a great time away.  We are away for a couple of nights next week on the east coast with the dog and looking forward to it.

Just to update on where things are at.  

The scan showed that the area that was treated with radio therapy was stable, however there was new growth above.  I'd noticed an increase in breathlessness and an ongoing reduction in my peak flow readings, which I could no longer put down to inflammation from the radio therapy.  

I've had a further stent fitted above the first which will open the trachea up for a time.  For how long?  Who knows. It may be possible for further surgical procedures to keep things open and I'll know to what extent next month.  I'm conscious though that there will soon come a point when it is physically no longer an option.

I'm in good spirits and getting on with life as best I can - my puppy, who is now one, is a great source of joy and keeps me occupied nicely. Frequent mini breaks with my husband and dog to the coast are wonderful and something I look forward to. 

After the various procedures and recovery I've decided that, for now, I want to enjoy the summer time I have whilst I'm still pretty able, so I'm not having targeted therapy, though of course, the door is still open. 

I've also spoken to the local end of life care team, which has been such a comfort and relieved a lot of anxiety.

Hoping that you and MowerMan are keeping well.  I'm so very grateful to you both for the information you gave me.  Best wishes to you both. I shall be back to update - it is slightly scary how quickly the quarterly scans come round!

Cath

Thank you for the update.

You seem to be coping well with the news. I am in a similar situation and want to enjoy the summer . I am not having and more targeted therapy but I am still in touch with all the research the Christie and Jeff Kauffman 

I also am getting more breathless which is tough but I get a lot of support from my oncologist and palliative care team. 
The new  baby is due any minute if she isn’t born in the next 2 weeks my daughter will be induced as the baby is getting too big to allow her to get any bigger 

im glad you are enjoying the puppy. I walk my dog every morning and he is is a great source of comfort xx