Newbie bowel / lung cancer

[Sannyboop]

Hi all I’m a newbie ,..I’m 51 years old and got diagnosed with stage 4 blwel / lung cancer ...I have 5 kids ,4 my youngest are all autistic and my husband passed away very suddenly 3 years ago so I’m all they have ( both sets of grandparents passed ) my fear is who’s going to take care of them when I’m gone ...I’m terrified of dying ,always had a fear of death even before diagnosis but so much worse now ...hospital are really happy with the way my treatment is going they have now said I could be here years yet ( originally told me 6 months ) they have now decided to operate on my bowel ( said at start there was no point ) but o happy with size tumour on lung has shrunk I go in Monday for my operation ,and there hopeful I won’t need a stoma bag or any other treatment on bowel so that’s all good news again ,,but I just can’t seem to convince myself that things are looking better and just seem to think the worse ..I’ve never had a biopsy done on my lung but they said it was caused by some sort of protein deficiency or something like that ,and was put on chemo ( tablet form ) but took really poorly and they gave me 7 week break then started me on another type of chemo pill ...Tarceva..( also known as Erlotinib ive been ok on this one apart from really dried itchy skin and spasms but I can deal with that ..is anyone else on this drug that could give me any feedback..sorry for the long post I just don’t know what to do ...thank you .

[Babydolltina]

Hi Sannyboop, I have just read your post and sorry you have found yourself here. One thing I would like to say is your Oncologist sounds positive about how you are progressing. Please stop worrying about your family, it's easy for me to say but you seem to have a positive attitude and a caring one too. Keep strong is all I can say and your children will catch your positive vibes.

God Bless and Good Luck

John

[Sannyboop in reply to Babydolltina]

Thank you for your kind words ,I’m really trying to be strong but it’s so hard sometimes, when I see my wee fella just sitting there I feel so sad I’m not going to be here for him ,and I know I should be thinking positive but something keeps me going back into my wee depression .best wishes and I’ll really try to think positive

[Hidden]

Hi Sannyboop ,It sounds like you are at the beginning of a long journey not at the end ,five years ago I was diagnosed with unexpected lung cancer at the age of 55yr and since lung surgery I have developed metasticies around my heart and brain .I have had radiation to my brain and I am currently on immunotherapy which is due to continue until 2021 .At the moment I am classed as stable tumours have shrunken or remained the same .So hey ho ,we all have times when we think it is going to get us and we become anxious .I too have worried about my young adult children now ,however I am still here as you may be in five or ten years time .Lots of people are surviving longer now so be as positive as you can muster .If your having surgery take it one day at a time tiny steps ,follow all the advice you are getting .Hopefully you will recover quickly from surgery and things may feel brighter for you .Take care Diane

[JanetteR57]

Sounds very frightening - especially given your family situation - my dad was in his 50s when he first developed bowel cancer (4 kids) but this year celebrated his 90th after 3 major bowel cancer ops - 2 were 27 years ago and another was 4 years ago. I was diagnosed with lung cancer 9 years ago when I was 52. treatments now are much more varied than a few years ago and some patients responding really well to targeted therapies and immunotherapy as well as radiotherapy and different surgical techniques. good luck with your treatments.

[Sannyboop]

Thank you for your advice I will definitely take that on board ..🙏🏻

[Denzie]

You might benefit from talking to other people in your situation. There may be a Maggie’s Centre near you. They are probably meeting virtually right now so give them a look see.

maggies.org

[Sannyboop in reply to Denzie]

Thank you ..I will definitely try see if any groups near me ...x

[HenryEtta]

Wow that’s a lot for you to cope with . I have found as I am a newbie too the more you talk and explain the better you can cope . I think once you find out other people have gone through the same thing and have come through the treatment it makes you feel better . Sending you positive thought

[Sannyboop]

Thank you for your kind words , yes it doesn’t seem as bad when you realise your not the only one going through this stuff .. x

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Sannyboop

Welcome to the forum and so sorry to hear that you have had to deal with so much and the worry you have for your children.

Macmillan support have some useful information on talking to children about cancer: macmillan.org.uk/cancer-inf...

You will be well aware of the website: autism.org.uk/

who may be able to support and assist you through this or even looking towards the future, which could still be a good many years away.

Any fear can be very crippling in its effect, it may be useful to pinpoint where the fear is e.g fear of pain, of being alone, of leaving loved ones, not in control, the unknown etc. Sharing this with both family and friends may help them find the way to best support you.

Do continue to talk about this to your trusted friends and any close family members. I am sorry to hear there are no grandparents around for both you and your children.

Hope you continue to feel reasonably well on Erlotinib and have good support in place for you when you come home after surgery.

We offer a new service called 'keep in touch' where one of our dedicated team members will email or telephone you once a week to provide support, if you are interested in registering for this service you can do so through this link:

roycastle.org/covid-19/info...

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

All the very best

The Roy Castle Support Team