End of the road 2

[Aamar1]

It worked so I have clearly been forgetting to press the post button!

I received the news on Thurs that the 6 months of immunotherapy I've had hasn't worked - tumors in my lungs have grown and there are 3 spots on my liver. I start chemo on Thurs (1 tablet per week apparently). This will hopefully give me 6 months.

I know from being a member here that focusing on such timescales is often not helpful - so many of you have exceeded the time limits put on you and are living wonderful lives, so I live in hope.

Unfortunately I have continued to smoke since my diagnosis and I haven't started a healthy diet or looked into supplements - I don't have an excuse except that my head has been all over the place. I think I'm now ready to try anything that will help so if any of you who have defied the medics have any advice, or did something you really think helped ur particular case please send it my way. Obviously stopping smoking is top of my list and when I finish this packet I hope that will be the last I ever smoke.

I've looked into gut health and even went so far as to have my poo tested! I bought kefir, kimichi and sauerkraut but couldn't muster an appetite for them so they're still in my fridge.

I did a course of accupuncture/massage/reflexology - I felt the benefits for about 30 mins after the session ended but that was about it apart from helping me go to the loo more regularly.

I've been very weak and breathless for the last few weeks and am finding life to be a struggle. Finding the energy to even take a shower is challenging some days. I have two kids- 6 and 14 yrs old who are off school for the forseeable and we're all self isolating. I need to be able to do some schoolwork with my 6 yr old and play games with her instead of letting her dir in front of the telly all day - I just feel so guilty. We can't go places to make memories anymore so I need to be making the memories at home. My husband is still working.

Staff safe everyone. Xk

[Benjy2018]

Hello Aarm1

I do not have any sound advice for you. I just want to know that I am thinking of you. Enjoy the time with your family. Are you not receiving community care support?

Susan xx

[Swimdown]

Hi Aamar. Sorry to hear your news but as people on this site have said before time limits on your life are not binding. I have a glass of fresh lemon and hot water every morning and also when I was having treatment and I am convinced it helped. This is a difficult time for all of us in isolation and I hope you can enjoy the time with your children but don't feel guilty if you can't play games or do school work with them. Just being together at this time is more important for you. Take care x

[Ollie13]

Hi Aamar1 I'm so sorry to hear the immunotherapy didn't work I just pray Chemo is more successful. Times are hard during this lock down so just spending time with your family no matter what you do is a plus. Stay positive and think positive which I know can be hard. My thoughts and prayers are with you all at this diffucult time. xx

[JanetteR57]

Glad you managed to post ok this time and sorry to read of your predicament. Personally I found a couple of books really helpful so maybe you could order them online? They both treat life more holistically but recognise the stress of the diagnosis and suggest ways to improve lifestyle as well as explaining some common issues. they are 'anti cancer - a new way of life' by Dr Servan Schreiber and 'cancer is a word not a sentence' by Dr Rob Buckman. Having Skyped family members last night and seeing two of our granddaughters (9 and 12) clearly bored after only a week, led me to reminisce our we made entertainment with very little (we had few toys). I reminded my mum last night (she has dementia) of her giving us tasks like sorting out the button box into colours or sizes (then putting them back in the tin mixed up for another day but hadn't appreciated that at the time), dusting/washing ornaments in a cabinet, weeding the garden, polishing silverware/brassware, making a tray garden, painting pebbles/large stones, washed from the garden, painting faces on eggs to boil for easter, picking mint from the garden and making mint sauce, pressing flowers and learning to identify wild flowers, making 'perfume' from rose and other flower petals, colouring/painting pictures, writing letters to penpals. They probably seem tame to kids today but think the aim was for us to stay engaged, do something purposeful and also make memories. We also had a piano and had to practise every day and I could always lose myself in a book. When my younger sister died some years ago (40) her youngest daughter (12) at the time went to bereavement counselling. Part of the therapy was to make a mask and paint/colour the inside what she was feeling inside and not letting others see and the outside was what she was portraying to others. I always felt this was a really powerful technique/activity and wonder if it might help yours at this unprecedented time. Good luck with stopping smoking - worth contacting your nurse and asking if they can provide you with support as the evidence is that more people stay off them if they are given support. Thinking of you all... and hoping you find some inner strength to carry you through...

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

Dear Aamar1

Welcome back to the forum, and sorry you have not had a good response to your treatment so far. So much is affected with the self isolation that is required for your protection, but an opportunity to share great quality time with your children and them with you, with no other distractions.

JanetteR57 has given a beautiful response with amazing practical tips in providing support for you and your children.

There is great support on health unlocked for those who want to make a start in stopping smoking, they are called Quit Support, you will find them at the top of the health unlocked page, under MY HUB and in the drop down box you will find the Quit Support forum.

Pace yourself slowly in your activities, and if your breathlessness gets worse do let the Doctor know. You may find our booklet on living with cancer useful as it provides advice on the symptoms of breathlessness:

roycastle.org/app/uploads/2...

I hope your husband is aware of shielding you from the Coronavirus when he comes home and information on this can be found on this link for those who have cancer:

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

If you wish to discuss anything you can either email us at [e-mail] or call our freephone nurse led helpline on 0800 358 7200, you may find email better if you are breathless talking.

Take care and hope you and your family stay safe

The Roy Castle Support Team