Feeling lonely

[Bozzie5]

Hi I was diagnosed in August 2022 and I am happy to report I am 'stable' after my first three month ct results with some reduction. So fingers crossed my results come soon for my last ct on Monday just gone. Had a bit of scan anxiety and feeling very much alone on this journey. My husband and children are amazing but don't you get tired of hearing people say, stay positive, your living with cancer, you will beat this and when you are feeling better.... I become resentful and overhink everything. This resulted in me telling my cousin I am not living with cancer, I want cancer to live with me so I can do things and keep as active as possible. She didn't understand and is in another denial of my journey. I said on the treatment I'm on which is the target therapy this is the best I will be. I just feel that people want to ask how you are but don't know how to ask you. They don't want to admit anything is going to happen but at the moment I need people to understand and work with me. I don't want sympathy and hugs all the time or a box of chocolates, (which don't get me wrong I appreciate chocolate who wouldn't!) but I look healthy, I'm breathing OK, walking, doing everyday things, but pacing myself. Getting up and doing some house work and walking the dog can be all I can do some days. Sorry rant over. I particularly came on to ask if anyone had any links or help in the Leeds Yorkshire area for groups, alternative therapies, something to focus my mind and give me something to work towards. I was a busy, problem solving, customer service guru, mum to two adult children. Friends to plenty, fund raiser and now I feel a bit lost and lonely. Any advice would be welcome. I do volunteer once a week at a Cancer support centre but unfortunately this means I can't use the centre for any groups or help. Their ethos is to concentrate on one thing as a time and well I know and love them all and it wouldn't feel right. So thanks for reading this long post. 😘😀👍

[Leniko]

can you suspend your volunteer work and take advantage of their services since you need them now? 🙏

[Bozzie5 in reply to Leniko]

It would be the obvious solution. But it keeps me focused and feeling normal. I love to give something back. But they have offered me any help or support from a different centre. Thank you

[Leniko in reply to Bozzie5]

I’m glad you found resources for yourself!🙏

[VikingRoots]

I’d like to be able to give you some incredible advice but I’ve not come up with anything. Perhaps it’s helpful to know that many of us share these same feelings. I’m 18 months ahead of you on the stage 4 journey. Doing well physically but still experiencing these feelings. Albeit less frequently over time. Don’t beat yourself up.

[Bozzie5 in reply to VikingRoots]

Just answering is enough thank you ❤️

[Cockailschemocancer]

Hi Bozzie5,

Sorry you are here and I get what you are saying I really do. I have met online a group of other ladies also with stage 4 cancer and we all have similar experiences to you, so it's good to find like minded people to inspire and moan to who just get it.

If you look me up on Instagram @cocktailschemoandcancer and also @4theloveoflungs you can see who I am connected to and connect for some like minded support and awareness. We are also going to launch some kind of online community, just working out the best way to do it.

Hopefully see you online soon,

Kerrie

[Bozzie5 in reply to Cockailschemocancer]

Thank you and I would love to be involved in the online community. I do already follow you, the love of lungs and just jules. Which gives me so much. So thank you. I just wondered about exploring further. I also will contact the closest hospice for alternative therapies. Each day is a grateful one, sometimes cloudy and sometimes sunshine. 💕🌞⛅

[Boo_Radley]

Hey Bozzie5, it is really tough, people don't know how to handle you. I am stage 4 and was diagnosed at Christmas. It is isolating, and there are days you don't want to be told to 'stay positive' because people don't get the enormity of what you are facing. It feels like everyone else is allowed 'normal' except you. I get it. I've just signed up to Walk all over cancer (10000 steps a day) during March. I have no idea if I can manage it, but I'm going to try. Like yourself, need to be in some sort of control in this situation. My sanity is in setting myself challenges, keeping as normal as possible, and thinking they wouldn't be giving me chemo and immunotherapy if they didn't think I had a chance. And chatting to other people helps too, people who get it. So Cockailschemocancer please include me / involve me in the online community, Bozzie5 give it a try? Remember part of being strong is also being honest about how you feel. If you are having a bad day, acknowledge that, but try not to stay there. Sending you a smile if you need it, Helen

[Bozzie5 in reply to Boo_Radley]

Thank you, and yes I need a challenge. I will do something and get back into doing some fund raising or awareness. I guess I worry about putting too much on my socials to upset my friends and family. There I am again worrying about others. One of my failings......

[Boo_Radley in reply to Bozzie5]

Worry about yourself first. You can't attend to others without putting your own oxygen mask on, etc! Do what you need to do. Keep challenging yourself, because when you do it, you'll prove you were right to believe in yourself. BTW - I'm honest about what's happening with me on social media, because that's what is happening for me. I make no apology for it, and actually other people think it's 'brave' whatever that means! Do what feels right for you, stop worrying about other people, what they think is their business, not yours! Give yourself permission to put your needs first for a change. 😉

[Cockailschemocancer in reply to Boo_Radley]

Hi Helen - yes of course, do you follow 4theloveoflungs on instagram at all as that is where we will do it as I think there are a lot of like minded women who can help with shared experiences and 'get it' xx

[JanetteR57]

Sorry to hear you're feeling lonely and isolated at times and people telling you to stay positive can be a bit wearing. well done on what you're doing for yourself and 'stable is good.

When I was recovering from my treatment and diagnosis, a close friend died suddenly and unexpectedly from lung cancer and I was shocked and angry when I found online that many men experienced similar fobbing off by doctors which he'd had for 6 months. I was also angry that at the time less than 5% of all cancer research went on lung cancer so decided to raise funds for Roy Castle lung cancer foundation by swimming - to improve my lung health, recover my fitness and raise funds in a good cause. I've swum since 1990 and used it at many key milestones in life for therapy, meditation and relaxing but having a goal and purpose kept me motivated.

At the time there were only in person groups around and as a younger never smoker, felt they wouldn't be for me and being self employed, had to work. However I joined Roy Castle foundation patient literature panel and started commenting on a few postings on Macmillan and Roy Castle forums in case my experiences might help others. That was in 2011.

Having raised funds for them, Roy Castle foundation invited me to an event in Birmingham where I met other patients and a patient advocate encouraged me to get more involved. I had no idea there were roles and activities of all manner of things that patients and carers with lived experience could do - it gave me a sense of purpose, giving something back and I've been able to learn a lot about lung cancer in the process, taking part in various groups to help research, studies or influence policies. Such 'dry' work may not be for everyone but Cancer Research Uk has an online group called Patient Involvement Network and regularly posts opportunities where different groups might want a survey answering, a response to a researcher's question or other help.

cancerresearchuk.org/get-in... Involvement_IN_22PIABa_Newsletter_7thFeb23

Events organised by charities often need patient reps or volunteers to help them and in many areas the rollout of targeted lung health checks also may involve patients to help publicise the scheme. Yorkshire Cancer research organises community events for various cancer initiatives and has had a good lung cancer programme for some time.

Does your local trust have any support services for patients? Many have initiatives funded by Macmillan or general funds for living with and beyond cancer initiatives - designed by local cancer teams.... these can be a source of company and an opportunity to share experiences with those who've also walked the walk! There are also closed Facebook groups e.g. lung cancer support UK and specific ones for certain mutations (EGFR+, ALK+) where people share innermost thoughts as well as suggestions, ideas, support for lung cancer patients and carers... I guess a mix of online/in person may suit one more than another - when I was diagnosed, I found reading books helped me (such groups didn't exist back then) and found 'cancer is a word not a sentence' by Dr Rob Buckman, and 'anti-cancer a new way of life' by Dr Servan Schreiber particularly helpful. For those well-meaning friends/relatives, a book by Deborah Hutton called 'what can I do help?' may help -

many of the newer treatments mean many patients can look well especially if they're on steroids which can lull people into thinking there's nothing really wrong but as you've articulated so well, appearances are rarely the full story.

However you may also find getting right away from anything cancer related and volunteering elsewhere may distract you on a cause you believe it - animal welfare, community befriending, (many opportunities are online), AgeUK - have many opportunities for regular phonecalls to lonely older people, foodbanks often need people too.

Take care and good luck.

[Bozzie5 in reply to JanetteR57]

Thank you there is a lot to unpack in your reply. I appreciate the time and effort with your responce. I shall look into the suggestions. Thank you 👏😉

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

It looks like you have received some very supportive and informative replies to your post and hopefully this in some way can help with any feelings of loneliness that you have been experiencing . Waiting on scan results can be a very anxious time , you are dealing with your difficult situation in a positive way by reaching out to those who have or are living with similar circumstances to yourself.

I have included other resources offering support that may be useful to you , these include one to one support to online support groups through zoom , if you are interested in any of these you can register through this link: roycastle.org/help-and-supp...

Our campaign section provides encouraging accounts from those living with lung cancer: roycastle.org/campaigns/

The Maggie’s centres are a great place to have a cuppa and a chat, they provide practical, financial and emotional support; maggies.org/ . This may be a particularly useful resource to help with speaking to friends and family.

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

[Bozzie5 in reply to RoyCastleHelpline]

Thank you very much 💕💕💕

[ConnectRoyCastle Administrator Roy Castle]

Hi Bozzie5,

You have had lot's of great advice and our Roy Castle Support Groups and the help we can provide have already been highlighted. I will just add a bit more specific information about what options we have in terms of support at this time..

Living With Lung Cancer - continuous and fortnightly. 2-3pm every second Wednesday the next one is tomorrow 15th February.

Genetic Mutation Driven Lung Cancer - weekly for 8 weeks and shall start off this Thursday 16th of February - 6.30pm -7.30pm

Lung Cancer Surgical Support Group - weekly for 8 weeks and kicks off on Tuesday 28th of February 7-8pm.

The Keeping in Touch service is where we can contact you regularly via telephone and just be there as a listening ear and a bit of support one to one.

If these sound of any use please get in touch.

[Bozzie5 in reply to ConnectRoyCastle]

I'd be interested in the group tomorrow at 2pm. Would I be able to join at all?

[ConnectRoyCastle Administrator Roy Castle]

Hi, absolutely!Can you give me an email to forward the link to you? It would be great to get you on there.

[ConnectRoyCastle Administrator Roy Castle]

email me - [e-mail]