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The Roy Castle Lung Cancer Foundation
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Brain tumour again

Well after having lung cancer successfully treated 2015 and a brain met successfully treated May 2017 it seems I now might have another one ,well I definitely have extensive oedema in one area and the likely tumour setting up home in a new area .I am a little disappointed that my brain keeps inviting these uninvited guests. Tomorrow I start high dose dexamethasone again after having only been off it for two months and lost 8lbs of the 2stone I had put on whilst taking them .I am alive with only a weak left foot that is something .But I am not looking forward to this let alone the thought of having more treatments .Anyone else in a similar situation? Diane

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Hi Diane

I am sorry to read this and send you lots of love and best wishes for your forthcoming treatment.

xxxx

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Hi Janey, Thanks for your reply I hope you are recovering from your recent therapy ,it always takes longer than you think .

I do feel calmer this time around .I have a new grandchild coming in January and my daughter under such pressure still managed to get her nursing degree finished pregnant and with an ill mother ,although she knows little about my current situation apart from steroids and swelling again . My son is doing a masters in Cardiff back for Xmas so that will be nice . I am glad they are getting on with their lives their future is not been held back by me .My poor husband is the one I really feel for as we all do .But all these things help to keep me striving forwards keep me going .I am too nosey to give up yet and I believe all is treatable at the moment. Luckily a pacemaker has made a hugh difference to my heart function and I can still get about with a stick or a rollater which means I can shop ,without it I wobble a lot but still keep trying with a stick on its own .Lucky too that I was able to retire at 58yrs so financially ok .

Are you still working I know you are younger than me you probably will still be getting a lot out of working ,its the social element I miss more than anything ,but I still have work friends I keep in touch with and meet up with every couple of months and I have rediscovered knitting at the local mustard tree ,it keeps me together. I have started swimming again and walk as far as I can .I hope you have been able to get back to running and things are ok ?Have a good Xmas and you are able to enjoy it Diane x

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Hello Diane

I too am sorry to hear your news.

My journey was similar to recap.

I had 2 tumours blasted (stereo) but the larger of the two returned with extensive oedema pushing the midline shift (of the brain) shifting over to the other

side. I was told the tumour may come back within the year and it did. This time it was suggested to have it removed surgically. Very serious op I dont need to tell you but...successfully removed. Since then one clear scan and awaiting chest CT and brain MRI just before Xmas. Fingers crossed.

Please keep me up with your news Diane. It's good to talk to others in a similar position. Let me know what they decide for you.

As much as we hate those Dexies they do help with the swelling.

Thinking of you.

Best wishes

Hoggy xx

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Nice to hear from you Hoggy, I am glad to hear that things are looking brighter and good luck with your awaited scans .This cancer thing is an uphill thing you just think your making progress and its back again .I am lucky in one respect as my GP under a little pressure from me will give MRI results early so I have started steroids earlier. My consultant appointment is the 17/12/18 all that waiting time which isn't that long would have frustrated me and delayed treatment ,this way I will be on a lower does of steroids by the time Xmas arrives better for all of us .I think my husband was shocked that it had come back so early ,but I was not really ,you sort of know when things aren't right .l feel calmer this time around although still very apprehensive at the moment wandering what plan will made and what that could do to me .Lots both hope for a good Xmas anyway results and plans for both of us ,take care Diane ....hug x

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I’m helping a friend through this now. She’s had to be put in a skilled care nursing facility because swelling by the active tumor was causing stroke-like symptoms.

She’s started cyberknife treatment and has 2 more to go. We are seeing improvement all around. I hope your treatment goes just as well.

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Thanks for your response Denzie,Sounds like your friend that is hopeful situation ,no plans for me yet just copping with high does steroids again not nice but required and awaiting to see my consultant ,Diane.

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Dear dianne55,

Good to see you are positive and hope you respond to your proposed treatment. You have been through it before and know what to expect. Sounds as if you have very good family support as well as support from the online community.

All the team at the Roy Castle Foundation send our very best wishes,

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Ah - how lovely to have a grandchild on the way in january - congratulations!

I am glad you are doing okay and back swimming.

I feel okay after my treatment and my scans a couple of weeks ago were clear so that was a relief. I am back running again and did Snowdon marathon at the end of October again!

I am not working - but have a busy social life with the running club, doggies, welsh class and art class!! Lots of xmas meals coming up.

Steven ended up in hospital unexpectedly recently - was admitted for a couple of weeks and found to have a rare autoimmune disorder!! Luckily he is back walking now but still has some sensory and functions to come back - he is having physio. Came out of the blue. We are quite a couple!! Either running marathons or in hospital with serious issues!!!

Touch wood that 2019 will be a good year for us all!

Have a good xmas with your son - that will be nice to see him.

Wishing you all the best and happy knitting! We have a nice coffee shop nearby called the Mustard Seed - we go there quite a bit!

Look after yourself xxxx

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Hi Diane so sorry to you have another one off them little blighters. But I'm shore you will evict it very soon. you have all ways been very positive person last time I messaged you was feeling really well and was going to have a holiday .so get rid off it and plan next year's holiday take care xx xx Carol

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