Dear Lemongrove, best wishes to you with your new treatment and for a good peaceful recovery. I echo what Punky Flapper said about your encouraging posts. I am far more assertive now with my oncologist,etc. with regard to knowing his reasoning behind decisions he is making for me. Also it is vital to not just accept what is offered if you don’t feel reassured and ask about alternatives/extras which could make a big difference for you, but you haven’t been made aware of!
Thankyou for encouraging us to push for what really matters, which is more open discussion between patient and medics, and the guts to stand up for yourself to get the best treatments available.
Jen. xx
Dear Lemongrove,
I am sorry I have only just found this news of you, I dont post so often now, but I have looked around the site for you every now and then.
Sending love and best wishes for you to have the best possible response to your treatments, and renewed thanks for your campaigning successes and encouragement of others.
Love from Lavender Lassie (from village to the east of you)
xx
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Hi Lemongrove - I am so glad I have found this post as I can’t find the original one where you posted that you had brain mets. You have been on my mind (no pun intended) and I have been wondering how you are getting on. I so hope that your treatment is successful.
Thanks for taking the time to post again. I read your informative posts with interest. Very good luck to you (and us all!!!).
Love Ann xxx
PS Hi Linda. Hope things are going ok. Will be in touch soon.
Good to hear from you Lemongrove.
Like many others I always learn a lot from your posts. i just want to offer you my best wishes and hope that your treatment gives you the best posible results.
Just another update. Went for results of MRI at Charing Cross Hospital yesterday, and it appears the Lapatanib and Capecitabine combination seems to be stopping the brain and spine mets getting any bigger. There was an increased odeoma within the brain, but the Prof thinks this is probably a by product of the treatment.
Originally they planned to give me stereotactic RT using an adapted Linac machine, but having discussed it with their Radiotherapy Department it seems that while Linac is good for larger mets (over 8mm), the cone they use to adapt it means it is not good for small mets (under 8mm). Consequently I have now asked the Prof to refer me to the Royal Marsden for Cyberknife (which is good for small mets).
Unfotunately there could be a problem getting funding for CK, but as I’m a patient rep to our local Clinical Commissing Group (who have replaced the old PCT), I will kick up a hell of a stink if I don’t get it (bit of a rum-do when cancer patients have to keep their fingers crossed for treatment funding that can possibly save or extend life).
Keep on keeping on (as they used to say in the 1960’s).
So pleased to hear positive news, Lesley. I’ve been thinking of you non stop. Good that the combo is keeping you stable and knowing tour spirit, I am pretty sure you will get your way with the Cyberknife.
susan X
Lemongrove,
How lovely to hear from you and with news of stability. I also am pleased to hear that you have your “Ready to kick up” spirit intact! Hope you are accepted for Cyber Knife without having to use up your energy.
KOKO
Lavender Lassie
xx
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hi Lesley
Hope you received my pm. Good to hear that the treatment appears to be working and keeping you stable. Long may it continue.
I also saw the onc today and she has booked me in for a ct scan within the next two weeks to check how things are. I also found out that my brain mets are 1.8 cm and 0.5 cm in size so not very big at all but the concern is also regarding the fluid around the larger met. The good news is that she has given me a letter stating that I am fit to travel so we are able to go ahead and book our cruise. She said it will do me good. Yippee! Fingers crossed that the scan brings me good news too.
Good luck with getting the funding for Cyberknife.
Liz x
Only just picked up your posting…been so shattered this week not been on pc much.Sooo pleased to read your good results and really hope you get cyberknife funding,if anyone can you will!!
Found your posting after replying to pm.Really tired today as had to be at RM early for fasting blood test,then go for rads planning followed by clinic getting home at 7pm.
Catch up soon.
L xx
Glad to hear your news Lemongrove.
Best wishes,
Tournesol
Nannie Spiky. My Prof say’s fluid is usually a bi-product of Lap treatment, so try not to worry too much.
Lucinda (Linda) have sent you a pm. Try and take it easy, because those long days at the hospital take it out of you.
Good to hear your positive news LG, hope the funding for cyber knife comes through soon and it works as effectively as in the past.
Nicky x
Lemongrove added a new update this morning but it hasn’t appeared in this thread.
Bump for LG.
Back in Charing Cross Hospital. Was unwell yesterday with temperature of 40 degrees, and kept falling over. John rang the A&E and they said bring her in straight away (the A&E at Charing Cross are brilliant, and it’s disgusting the Tories are closing the unit). Anyway, by the time I arrived I was delirious and couldn’t stand up, so they took me through to the resuscitation unit. It appears I have an infection in the scar tissue surrounding the surgery I had at Christmas, and a urinary tract infection. Also although the brain mets have shrunk, the fluid surrounding them has increased (hence falling over). Anyway sent to Ward six south, and Hey presto, my temperature is back to normal, and I’m up and running again today. They’re continuing with the anti-biotics, for a few days, and may bring forward my mri to tomorrow. So that’s all for now. God bless Charing Cross Hospital, and damn the Tories for what they’re doing doing to try destroy it.
Lemonogrove, glad to hear you feel better already! Well done girl. And well done to Charing Cross team that look after you so well.
Keep fighting and keep get stronger.
God bless you, Charing Cross ( sorry Torries but you can’t be included)
Valia
x
hi Lemongrove…what a frightening turn of events for you. glad you are feeling so much better today. Well done Charing Cross!
Take care. Pamx
hI lemon grove , you have been through so much , get better soon .
Hugs
louise
Thank you so much for posting to update us all, Lemongrove.
You have been through so much, and still come up articulate and campaigning.
There was an article in one paper today about how cuts to A&Es have been shown to have caused
deaths, but doing a rethink doesn’t seem to be in the vocabulary.
Carry on recovering!
Lavender
xx
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Thank you Lavender. Perhaps you would be so kind as to pass the news to Chris at St Giles so she can inform Father John.
Yes the closure of Charing Cross A&E will be a blow for many cancer patients who are treated there. Frankly, I’m actually quite frightened at the prospect of going to my local Hospital, because i just don’t rate the oncology team there. At Charing Cross I’m treated by Professors who also work in Harley Street and the Cromwell, so why would I want to take my chances at a Hospital where I would probably be evaluated by a locum who doesn’t even have my notes?
Given there is a crisis in A&E srvices all over the Country, it just doesn’t make sense to close them down (particularly excellent ones like Charing Cross).
Sorry to hear about your worrying episode but glad to hear that you are feeling better. Good luck with your MRI and hope the results are in your favour.
Wishing you a steady and upward recovery.
Liz x