The Roy Castle Lung Cancer Foundation
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Bad update

Well after going through surgery, chemo, radiotherapy and some immunotherapy have been told nothing is working so now not under a consultant anymore just a Macmillian nurse from Christchurch. To say |I am gutted is an understatement as there seems nothing more I can do. |Only one more chemo drug could be used but only a 10% chance of luck and would have very bad side affects and as I have been very bad since end of Oct they do not want to put me through it. So here I am, cant write as feelings gone in fingers, to tired to even get dressed some days and watching my poor new love of 7 yrs waiting on me hand and foot. Trying Hemp oil now, who knows. Praying every day for lots more time.

Therese

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Im so sorry for what you have said its not easy when they say there isnt anything more they can do .so you need to get on with your life the best you can make lots off memories for you your partner and family .get as much help as you can ask for help with washing and getting dressed .to make it a little easy for you on goid days go for walks try to do something so your not allways stuck in the house i know its not going to be easy take care xx

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Dear Livvyloot,

I am so sorry to hear about your situation. The Mc Millan nurse will advise about any symptoms you may have and how best to manage them. In your post you mentioned your partner(love)is caring for you and although you will probably do as much as possible for yourself remember that help may be available to you both should you wish it.

I am not sure if you have been in contact with the district nurse attached to your GP practice she/he can visit you and your partner at home and have a chat with you both and assess your needs and suggest any help which may be available to you both. Sometimes accepting a little practical help allows carers to "recharge their batteries" and enables you both to cope with managing your ongoing care.

By the sound of your post I am sure that your loved one knows how much you care for him. Spending as much time with each other and maintaining as normal a life as possible by doing small things that most of us find enjoyable, like for example, watching a film together can be very therapeutic.

The Helpline nurses are available to talk if you or your partner feel the need to talk to someone. Freephone 0800 358 7200.

With kind regards.

All the team at the Roy Castle Helpline

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Hi, Livvyloot. I am sorry about your news and your pain. Miasam and the RC helpline have given good helpful advice.

I see you are trying hemp oil, so you are not ready to give up. Alternative therapies diet etc can be tried and is calming but don’t spend a fortune on anything, there is no need to. Always consult your Doctor or Nurse if you are still having any form of treatment in case of interaction.

Hand and foot massage can help ease your fingers and feet. Pampering in other ways can be done at home by those close to you and won’t cost anything.

Many blessings.

Margaret.

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I'm so very sorry to hear of your diagnosis. I know it is really difficult, but if you can find it in yourself to be very positive and use visualisation to help yourself. I have been reading How Your Mind Can Heal Your Body by Dr David Hamilton phd. It is an incredible book with lots of stories about people who have been told there is no more that can be done to help who have fought back using visualisation and had incredible results and are still with us many years later..........I just want people to know about this book as it really is incredible, I am using it to fight my battle......... and so far i am winning. Take Care xxx

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Sorry to read your post, Livvyloot. As others have suggested, ask your Macmillan what support is available - it is called 'supportive care' for a reason. No point being stoic all the time - sometimes it's nice to be supported by others whether for yourself or your partner. Wishing you all the best and as others have said, make the most of your time as best you can. xxx

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Hi Livvyloot ,So sorry to hear about your situation which has changed ,at the beginning of last year I too felt that everything was hopeless especially when I was told it had also travelled to my heart although they could not definitely confirm that as too dangerous to biopsy.I nearly gave up there and then ;primary lung and then brain and heart Mets, however I am still here no treatment offered for my heart just a pacemaker to regulate it better . I have a poor walk and need aids but I am okish determined to keep going for my family ,it feels sad some days for them and me ,I get very tired held up on steroids I just try and go out daily and be as cheerful as I can not always easy, I think it helps me as much as those around me .I pretend they can cure me and constantly ask for any news of any new treatments that may help me .

I had high dose stereotactic radiotherapy for brain tumour so they are still monitoring me for that presumably my oncologist will keep seeing me for a while yet as per protocol. I am wandering how long this will continue at some point I know this will end.

I suppose I just want to say keep going and seize the day if your having a good day enjoy it ,if you can ,my thoughts are with you and yours .Rest in between the good bits so you can enjoy those good bits and get a few more .Diane .

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Hi there

Love your positive thinking my mum in law about to have gammer knife at the royal marsden, 1 hour 😬 how long ago did you have yours and how did you feel afterwards.

Hope you don’t mind me asking.

Mum in law living with us I have small children so just trying to prepare.

Many thanks 😊

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Hi there ,The treatment I had was slightly different it took about 45minutes in all ,I felt a little muzzy afterwards and about two hours later had a very minor focal fit whilst resting on the bed .so I would say quiet rest is required away from noise and focal distraction for three or four hours .I think we are all different so it maybe different for your Mum .Headaches for me were not a big problem and all the way through have just been a sought of muzzy at times a funny feeling and visual blurriness ,I also have tinnitus when this combination is going on I find somewhere to rest for an hour or two as I think it is an indicator that something could worsen .I hope that helps .Diane

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That’s does help thank you.

My mum in law has tinnitus also.

Good luck hope your keeping well.

Thanks again

Toni 🍀

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Everything you've gone through is behind you now...you are immensely blessed that you have someone who loves you very deeply....life is given to us one day at a time to live it the best we can, to be content in whatever circumstances we find ourselves, and to be thankful for those who share our journey and are a comfort and support to us..May God continue to bless you...and may you find joy and peace each day he gives to you....XoXo

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Thank you all for your kind wishes, I continue to be positive and do as much as poss but do find it hard especially not having much use of my right hand. Have an appointment with consultant this week don't know what for but hoping he's come up with something else, said I would not see him again, hopefully new trial near me, I'm wishing.

Good luck to us all.

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