Middle of the night gremlins

[Ceibach]

The past 5 weeks... Can't believe how our lives have changed.... My husband has been diagnosed with stage 4 non small cell cancer.... Its been a roller coaster.... He has bee n looked after well by shooting star wrexham. He is starting treatment on Monday... 2 x chemo plus immunotherapy...... I get the gremlins at night..... Positivity is waning

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HI ceibach, yes these are hard things to take on especially if it comes out of the blue.I was diagnosed just before Xmas with stage 3b and as I had always been very healthy and fit, we couldn't believe it. I made the error that many makes which is to looks at Google statidtics and that meant very little time and hope.

It is much better to look at sites like this one or the macmillan as one realise that there are loads of treatments and many people who are actually doing well.

I had a 10 days blast of radiotherapy around the Xmas hols and have now started chemo and immuno therapy. Ketreida, carboplatin and premextred and had 1st cycle 10 days ago. 1st few days were a bit tough but it has gone better. Actually although I should have low immunity now, I just come back from a 10km walk and just a bit tired now.

As you can see it isn't the end of it all. I can understand you have night gremlins and my husband always tells me that it is in his mind, but we are learning to take a day at a time and make the best of what we have.

Having people to give support. Use this blog and the cancer nurses that your husband can access can all make a great difference.

Do good luck for your husband 1st treatment and it might not be as has a he fears

Chanie

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Ceibach

So sorry to hear about your husband and how very difficult and confronting this must be for you all.

It can be quite challenging to keep positive, especially, when during the night , things always seem worse and it all becomes too overwhelming.

Lung cancer treatments have greatly improved in the past 10 years with new treatments like Immunotherapy and Targeted therapies.

There are encouraging accounts from those that have experienced lung cancer and you can find these through this link: roycastle.org/campaigns/lik...

We have a range of information booklets, from diagnosis, the different treatment to living with lung cancer and can be found on this link: roycastle.org/help-and-supp...

It is good to hear that your husband is getting well looked after, and often the loved one or carer can suffer just as much, all be it in a different way. It can be a huge emotional strain and hope you have plenty support for yourself.

We have online support groups through zoom if you or your husband are interested, and you can register through this link: roycastle.org/help-and-supp...

If you are looking anything up on the internet, we would advise to view the following websites that have up to date and accurate information:

roycastle.org

macmillan.org.uk

cancerresarchuk.org

If you would like to discuss anything you can email ask the nurse at [e-mail] or call our freephone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600.

Kind regards

The Roy Castle Support Team

Hope you hear from others in the forum

[Cockailschemocancer]

Once the treatment starts and hopefully the cancer shrinks things will start to feel better. I think your Husband starts treatment today, this is a good thing as finally something will be happening to attack the cancer. Wishing you both lots of luck xx

[Ceibach in reply to Cockailschemocancer]

Thank you.... Its got to be done.... It will a long day without him but I am going to spend the day wisely...... And clear the top of the wardrobe(all handbags and dust).... Its direct in his eye line and really gets on his wick.......... Thank you

[Ceibach in reply to Cockailschemocancer]

Treatment went well... And we are following instructions down to the letter..... He had triple therapy.

[nlg1405]

Immunotherapy can work wonders. My mum was diagnosed with non small cell lung cancer stage 4. She had immunotherapy, Pembrolizumab, and it shrunk her tumours by 80% in just a few months and these were under control with no treatment for 4 years after immunotherapy. Think positive. All the best to you both.

[Ceibach in reply to nlg1405]

Thank you so much..... Such a boost... Thank you... ❤️

[seetray in reply to nlg1405]

You have made me feel so much better, sounds like your Mum has the same as my Husband and immunotherapy drug - he had his first treatment last Monday and is not doing so well, he had to go to hospital yesterday as trouble breathing, he was given antibiotics and hopefully they will work soon. You've given me hope that things will improve - as someone else said it's tough on the partners/carers but, in a different way. I also care for my 91 year old Mum so tough all round but, with the news you've shared we will find a way - thank you so much x

[JanetteR57]

It's particularly worrying at the start when everything is so unknown but the whole experience can be one of good days and bad - even the most positive can experience anger, disbelief and grief for the life they thought they might have had.... when I was diagnosed in January 2011 after my left lobectomy, I had also googled and the stats back then were much worse.... but I was determined to be in the percentage of survivors at 1 year, then 5 years not expecting from what I'd read to be 11 years out. In 2012 I attended a Roy Castle event in Birmingham and met a lung cancer patient diagnosed at stage iv told she only had months left who went onto have targeted therapies for her EGFR positive mutation and lived 4 years 4 months - those treatments have now been improved into 2nd and 3rd generation versions. She encouraged me to become more involved and in 2013 I joined National cancer research institute lung cancer group and since then have been on a number of UK and European committees and attended many many cancer conferences. The comparison with even a few years ago is pointless and much of the 'google' results are outdated and inaccurate....results of trials involving immunotherapy and targeted agents are still running years after they anticipated (follow up data) as so many patients are still alive - and research is producing more knowledge and treatments all the time. Through my involvement I've had the privilege of meeting lung cancer patients involved in research and had no idea that there were survivors of 18-20 years even on the older treatments - so never give up.... but equally don't think you have to do this alone, the resources now available to support both patients and those who are affected by cancer including relatives and carers have never been so good - online, face to face, telephone support, in person support - reach out as much as you need to. When I was diagnosed, these online groups weren't around so I found reading books helpful - two that really helped me were 'anti-cancer - a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman - both helped me adjust my life to a new setting and get on with it rather than being ruled by anxiety... good luck.

[Ceibach]

Thank you.... I am janette too....!!!