Bad news today

[Shirlbird]

Gutted. After nine months of chemo, followed by a break of two months followed by three months of immunotherapy just been told as the lung and adrenal gland tumours are growing there is no further treatment. Feel cast adrift. Hard to keep positive. I feel as well now as before I got the diagnosis. But downhearted. Any suggestions welcome please. Anyone in the same boat?

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Shirlbird

Welcome to the forum and so sorry to hear of your recent diagnosis especially after going through your treatment. This must be so difficult for you and hope you find some support and encouragement of this forum.

It is good you feel well at the moment and hope that continues for you, despite the restrictions of your isolation during the current Covid-19 pandemic.

We would normally suggest you could consider asking if there is a clinical trial available but under the current coronavirus situation, a lot of these are either temporarily stopped or put on hold due to this. However not something that you might want to rule out when the restrictions are withdrawn for everyone.

Hope you have plenty support available and can enjoy doing some things at home that this isolation has given so many, a time to catch up on things in the house or in creativity. More importantly something that gives you joy.

There are some very inspirational stories of those with lung cancer under our campaign section on our website, especially the 'like me' ones:

roycastle.org/campaigns/

If you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200

Kind regards

The Roy Castle Support Team

[Shirlbird in reply to RoyCastleHelpline]

Thank you so much. Reading your responses to peoples' posts has been a great support to me over the months. I will certainly ask about clinical trials when the Corvid 19 is over. I don't mind being a guinea pig!!! Shirlbird

[Lita04]

Dear Shirlbird,

I am so very sorry to hear of your most recent diagnosis. One thing you might consider is getting a second opinion. If you are not already going to a major cancer/ research center, please try to find one close to you. You want to be treated by a team of doctors who have successfully treated thousands of patients with your diagnosis. I am praying for you. Please keep us posted.

Blessings & peace,

Lita

[Shirlbird in reply to Lita04]

Thank you so much for your kind words Lita. My o ncologists are in Glasgow so not sure I could do better. I have told them I want to volunteer for any trials when the corona epidemic ends

[JanetteR57 in reply to Shirlbird]

I'd agree - the usual centres of excellence and treat clinicians are now being instructed to work differently across the whole of the UK so with travel limited, agree with your thoughts. Sorry to read your news - you must be devastated - but as you say you feel as well as ever, maybe make different memories, organise your things at home, occupy your time (with as little exposure to endless news), call up friends/family by phone if you can to reconnect anyway, enjoy the fresh air if you're able to go for a walk (if not confined to home on clinical advice). Hang on in there and try to make the best of the situation... thinking of you...

[Shirlbird in reply to JanetteR57]

Janette - You always come up with sensible advice. I take the dogs for a walk every day and am lucky to live in an isolated spot with a big garden and hobbies to keep me occupied. Really appreciate your input thanks. Shirlbird

[JanetteR57 in reply to Shirlbird]

Thanks - I often receive a response to suggestions I make on one of the committees I'm on ' that sounds eminently sensible' and wonder if it's a compliment!

I was thinking of our 2 granddaughters (one is physically/mentally disabled) and can't understand what's happening and is getting restless. I suggested their mum orders or picks up some seeds/plug plants and the girls plant them - as the weeks go on, they can watch their progress - and if vegetables (salad, radish, carrots, cress etc) eat them! Maybe your big garden could give you more pleasure - instead of maintenance/weeding - why not plant some 'special' plants at this time? even a tub/hanging basket if you don't already? Glad to hear you have lots of hobbies - it's something many young people don't have and there's a limit to how much 'screen/device' time we can bear.

Is there a particular tree, shrub or plant type you like that you could order for delivery and watch it grow?

Is there a book you always wanted to read? A recipe to make? a diary/blog to write? Embroidery, knitting, handicrafts? Putting photographs in albums? Replaying music from bygone days to recall memories of more positive times?

A former colleague (who's become a good friend since my diagnosis) had been diagnosed with stomach cancer 8 months or so before my diagnosis and he suggested all manner of practical things that helped me no end - including staying away from Google!

Good luck - let us know what you are up to with your hobbies - whether creative, relaxing or strenuous. They might inspire others.... thinking of you.

[Shirlbird in reply to JanetteR57]

Good advice as usual Janette. I can see it must be traumatic for people with children cooped up indoors day after day. And as you say there is only so much screen time one can bear. I'm 77 so not of the iPhone generation!

I am making a latch hook rug at present. Latch hooking is really easy to do and there are kits or you can make u your own design. I did a celtic knot design first with strips of old blanket, dyed. The one I am currently working on is wool, tartan patterns. Easy to pick up and put down.

My partner is the gardener here. I just hench for her!! But we have just got a new greenhouse so planted some salads in it and have purple sprouting broccoli which was in the polytunnel the greenhouse has replaced. Polytunnel needed a new cover but did not want to use all that plastic to ay nothing of getting rid of the old.

Anyway enough about me - how are you feeling now? I am trying to do mindfulness, especially in the night.

[JanetteR57 in reply to Shirlbird]

Thanks - the rugs sound good therapy. A friend took up rag rug making when she retired due to heart failure - attended classes at the Black Country living museum then took it up as a hobby and swears by its therapeutic value. Growing salads sounds good - hope they taste good when you reap them. Having any part in their growth will make them taste better methinks!

I'm ok, thanks - had been overwhelmed at the amount of paperwork I'd amassed in the home office/back table/filing cabinet but going through it steadily and shredding old stuff to make room for more recent info and a calm sense of satisfaction starting to emerge. lots still to do but it's a task I've promised myself to do for so long but being busy working (and often travelling the UK and Europe for work), never usually have time to get round to it.

Still working from home but thankfully don't have the quantity of teleconferences I had last week.

Calling one friend or family member each day so that's a welcome break but sad that my 87 year old mum (dementia) really doesn't understand why none of her family is visiting nor why she can't go for her weekly trip to hairdressers They don't have the internet and dad's phone (he's 90) is one of those basic ones that only does texts/calls. stay safe... and keep on keeping on... x

[Shirlbird in reply to JanetteR57]

My goodness Janette... you have a lot of plates to keep spinning. Better to keep busy though. I hate doing nothing!! You mentioned reading. I was lucky the local librarian picked several books for me when she got wind of the lock down and her choices have been excellent so far. Good to keep in touch. Very best wishes. Shirlbird

[JanetteR57 in reply to Shirlbird]

That's me ... doing lots, lots still to do! Not yet found time for reading but have plenty on the bookshelf simply calling out to me to be read! take care x

[Kalilou2]

So sorry love hope you get the help and support you need x

[Shirlbird in reply to Kalilou2]

Thank you for thinking of me Kalilou. Keep well and safe. Shirlbird