Help I’m drowning ....

Hi  and welcome to the Online Community, although I am so sorry to see the circumstance that brought you here and so sorry to hear that your partner has been diagnosed with small cell lung cancer with secondaries in the bones and liver

I am Mike Thehighlander and I help out on the Community and I will do my best to direct you to the best place for you to find the support and help you need. On my long journey I found the best way to navigate the various challenges that a cancer diagnosis brings was by talking with people who are on the same journey.

My cancer journey was rather different but I see that you have joined the Carers Only Forum we also have our Friends and Family Forum and Supporting someone with incurable cancer.

For cancer specific help you could have a look in at our Lung Cancer and our two Liver and Bone Secondaries.

If you follow the links to any of the groups, have a look round and if you feel that you will be able to connect with people who understand the journey you are on, just join the group(s) and hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.

You may also find our various Macmillan Support Line Services on 0808 808 00 00 to be helpful as you can talk to a friendly person that can help in lots of various ways.

We also have some good cancer information videos

Check this link for Local Macmillan Support Groups and check out Maggie’s Centres as these folks are amazing 

All the best. 

Thank you for this Mike. I have joined a couple of the groups you have suggested.

There is no local help near where we live, no support groups. The hospice used to run them but not any more. I would just love to sit with someone for a while to totally understands what I’m going through. We have an amazing support network of family and 2 close friends but none of them really know what it’s like.

Thankfully Lyndon has things available to him which he now feels able to take up. There is just nothing for me and his son sadly. 

Hi again , so give the helpline a call using the number above as they may have more up to date information for you....... and it’s someone to talk with - that is exactly what it is there for.

I would also suggest you talk with his/your GP and his hospital medical team, especially his Specialist Cancer Nurse who you should have been given contact info for as they may well have access to some local one on one support, or at least sit and talk with you.

Always around to listen ((hugs))

I’ve tried to contact his nurse TWICE, once on Monday where I was told she’d ring us back and didn’t and was told the same again yesterday with no call back. I’ve given up trying to contact them today. 

The hospice has one councillor with a huge waiting list. They did run a support group for carers but not any more. 

Tiggs xx

Hi and I also extend my welcome to the online community.

It's always distressing to read stories such as yours and even more when you can't find some support for yourself and you son and it is very important that you do get some help and this can be difficult to find as you've already found out but you know you can always go into any of the groups you've joined and speak to the very friendly members who are all very supportive of each other. They really are safe places to come to and have rant and rave, let off steam or just have a chat about anything you want.

I wonder if (and you've probably explored this one) the Roy Castle support groups may have one near to you just click on the green text above to open up a new page.

Sorry can't be of anymore help but I do hope you will visit the groups and introduce yourself to the members very soon.

Ian

Bodach .... thank you for your lovely reply. No, I’d not heard of the Roy Castle Support Groups but will look into it. 

I/we haven’t really been informed of anything that’s available to us other than the benefits for my partner as he’s had to give up work.

We has a whirlwind of appointments after his diagnosis then nothing! I’ve just been winging it but I’m running out of steam. 

I only found out yesterday that we could get help with fuel bills and that was by accident! Xx

Hi there Tiggs,

Ive literally just joined the site and am feeling exactly the same way. My husband had his diagnosis only 2 weeks ago, and like you, i dont know where to turn. We have appointments lined up, a million questions, for which we have no answers....We also have 2 boys of 23 and 20 and its hard to stay strong for everyone, whilst trying to get information. Hopefully we can both find what we need over the next few weeks...but im happy to chat anytime, and we can have a rant when needed, whilst keeping each others spirits up xx

And warm welcome to you and so sorry to see you finding us. I see you have found the cancer specific forum and the other links that have been put up above will also be a great help to you,

The Macmillan Support Line covers a lot of different subjects including making sure you are receiving all the benefits available, so if required, give them a phone.

((hugs))

Morning ....... thank you for your lovely reply. We are the same, a whirlwind of appointments, scans and chemo. I don’t know if I’m on my head or my arse. I’ve reduced my work to 3 days a week, but that’s still 40+ hours with travel.

At the moment my partner (who is normally very loving) is vile. This morning he made me cry just before I left for work. I know he’s in a dark place right now trying to come to terms with his prognosis but as he’s more or less shut everyone out I’m the only person he can be horrible too. 

Everyone keeps telling me what a great job I’m doing but I really don’t feel like it. I’m both mentally and physically exhausted. I’m at my wits end with all of this. 

I do get some comfort from here as people understand how I feel xx

Hi Tiggs

I'm very sorry to hear how you are feeling this morning unfortunately having this disease and the medication involved can change a person's personality and very often they don't realise that they are upsetting the people closest to them but as you've found out it can be hurtful and distressing especially as you're doing everything you can to make life easier for him and it doesn't help when well meaning friends tell you you're doing a great job when all you feel is exhausted and drained and this normal when you're juggling everything around looking after your partner and son whilst continuing to work not forgetting keeping up with the housework. You do need to find time for yourself like meeting with friends for coffee or a meal somewhere where you can go and forget about things for a few hours which I know is not easy to do but please try and get some time for yourself.

Do you know if your hospital has a Macmillan information centre attached where you go and have a chat with the friendly people who will totally understand how you are feeling.

Did you manage to phone the telephone support team, they can help you with many things and give you advice, I list below the services and benefits you maybe eligible for 

Emotional support and practical information

Our cancer information advisors offer a listening ear and are ready to talk about whatever matters to you. They can also provide expert cancer information to help you find your best way through.

(7 days a week, 8am - 8pm)

Financial support and work guidance

Cancer can be tough on your finances. Our financial guides offer personalised support and guidance to help you deal with money worries. They can also explain financial products, so you can best manage your money.

Cancer and its treatments may affect your work life. The work support team can help you to understand your rights at work. They can also offer guidance on how to talk to your employer and negotiate adjustments at work. If you need one-off legal advice they can refer you as well as provide information on sick pay and taking time off.

If you need information on benefits and financial support,

Our welfare rights advisors will make sure you’re not missing out on anything you may be entitled to. They can also help you find out if you’re eligible for alternative sources of support or services.

If cancer is affecting your ability to pay the bills, the energy advice team are here for you. They can check if you’re entitled to any additional support through charitable grants – no matter who supplies your gas, electricity and water.

Financial guidance (Monday - Friday, 8am - 6pm)

Work support (Monday - Friday, 8am - 6pm)

Welfare rights (Monday - Friday, 8am - 8pm)

Energy advice team (Monday - Friday, 8am - 6pm)

All the above can be contacted by telephoning 0808 808 0000 and I would suggest, if you have not already done so, that you phone them it's a free phone call so you have nothing to lose but potentially a lot to gain.

Please try and keep positive and keep in touch with us, we are here to help you at anytime you need us.

Ian