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Small cell lung cancer terminal

Minnie2011
Posted by

My dad was diagnosed with stage 3 SCLC in April this year and in July a scan showed it was responding well. After 4 rounds of chemo and 50 sessions of radio we have since been told that the cancer has spread to his lymph nodes in his neck and liver. We saw the Dr about further chemo treatment and she said that we can try Topotecan which is an oral tablet form of chemo to buy us more time. But she said we are talking months. I’m unsure what to do or what the next steps will be? He’s currently taking morphine for pain but isn’t seeming to manage it well and no one has been in touch to help. His chemo is due to start tomorrow but we don’t want him to be uncomfortable. He saw his own GP this week who gave him a stronger morphine but it’s not helping much. 
any advice would be greatly appreciated and also where to turn to for support for myself and my mam as our whole world has fell apart.

Ellen M-Macmillan
Posted by

Hi ,

Thanks for getting in touch with us.

It’s understandable why you’re unsure about what to do and to ask what the next steps will be. Hearing the news that your dad’s cancer had spread, and that the treatment is aimed at trying to prolong his life and not cure his cancer can be devastating.

This is called palliative treatment, which means that the aim is to help to control his symptoms, improve his quality of life and for some that may prolong how long they may live for. Doctors must weigh up these potential benefits versus the potential risks before recommending this.

But that doesn’t mean that because he is having chemotherapy that he cannot be seen by other healthcare professionals to have his pain managed.

It’s important that your dad talks to his chemo team today and lets them know how much pain he is having. They will be able to review his pain medication today. Encourage him to be honest, this won’t stop him from starting his planned chemo. It means that they will be able to properly assess him.

If his pain is not being controlled when he’s at home, it’s important that he lets his GP know so that he can be reviewed. They can refer him to the local palliative care team for support. They can also get him support from other social and health care professionals to help your dad and mam at home.

If you are finding that he is in pain over the weekend you can call 111 for advice, dad doesn’t need to wait till Monday to be reassessed.

Caring for someone with an advanced cancer can be rewarding but it can be tough at times too. It’s equally important that you and your mam look after yourselves and get support too, so that you can both keep doing the great job that you’re already doing.

It can be difficult to cope with some of the feelings and worries that you have when someone you love has cancer. It can help both you and your mam to be open and honest about how you’re feeling. There is no right or wrong way to do this, as long as you’re both doing what is right for you.

Some people do find it hard to talk about their feelings with the person that they’re caring for. They often worry about upsetting them or breaking down in front of them. If you and your mam are finding it difficult it can be helpful to talk to your GP’s about getting support.

There are different ways that we can support you both too. I can see from your activity that you’ve already joined our supportive group that supports each other when someone they care for has a cancer that can’t be cured.

We also have a carers and family and friends group that you can join too. And if you think it would help you can encourage your mam to join too or read what others are saying to each other.

You and your mam can give us a call on 0808-808-0000 and talk to one of our nurses about what is happening to your dad. Our lines are open every day from 8am till 8pm.

You can also look at our search engine to see what support is available in your area.

I hope your dad gets on okay today with his chemotherapy and that he does talk to his team about the pain he is experiencing.

Best wishes and take care.

Please don’t hesitate to get back in touch with us.

Ellen-Macmillan Online Digital Nurse Specialist.


Bombie
Posted by

Hi Minnie2011

my dad has just been diagnosed with the same and I am distraught! He is 83 so pretty old and he will start chemo next week to give him more time but they have said it is terminal. I’m trying so hard to be strong but I can’t stop crying and breaking down thinking of life without him and my poor mum left alone. I’m lost and so overwhelmed with this. 

Ellen M-Macmillan
Posted by

Hi ,

Welcome to our Online Community.

My name is Ellen and I’m one of the nurses who work with the Online Community Team. I hope you don’t mind but I saw your post to Minnie2011 and thought that I would pop in and offer you some support.

Hearing the news that your dad has a cancer that can’t be cured can be devastating. Nothing can prepare you, it’s natural to cry and at the same time try to be strong for others. Feeling upset about your mum and trying to imagine how she will manage without your dad is understandable. It’s because you love them so much that you feel like this.

Feeling lost and overwhelmed are common emotions to have. You wouldn’t be human if you didn’t feel like this. It’s okay not too feel strong all the time, and to let go off your emotions.

That’s why reaching out and wanting to talk to others in a similar situation can be helpful to do. I’m glad you’ve felt brave enough to join us. There really is nothing quite like the support that you can get from others who know what it’s like. It never fails to amaze us just how supportive and helpful that can be. Just knowing that someone can understand and know what you’re going through can help and give you the encouragement to keep doing what you’re doing.

We have a very supportive group that supports each other when they are supporting someone whose cancer can’t be cured, that I would suggest that you join. There is also a carers and family and friends group too that can be helpful to join.

Caring for someone with an advanced cancer can be rewarding, but it can be tough at times too, so it’s equally important that you get help and are able to look after yourself too (I know this can be easier said than done) But taking some “you time” even if it’s only for a short period can be just enough to help you to recharge your batteries, so that you can have the mental and physical strength to look after both your parents.

We have different ways that we can offer you support. This search engine can help you to find what is available in your area.

Talking to someone about how this is affecting you can be helpful to do, you can call our Support Line on 0808-808-0000 and talk to one of our nurses about how you’re feeling. Our lines are open every day from 8am till 8pm.

Bets wishes and take care and I hope you find our Community a helpful and supportive place.

Ellen-Macmillan Online Digital Nurse Specialist.

 

Minnie2011
Posted by

Hi Bombie

Thank you for replying to my post, it can feel a very lovely time. I am the same, one minute I’m ok taking on every day tasks and then the next I’m inconsolable. I can’t bring myself to think about the time when I have to walk the earth without my dad, he’s my rock and anything that goes wrong or I need doing he’s always my first call. I also worry about my mam and how she will cope. He will be 63 on Tuesday, life is so unfair. 
At the minute we don’t seem to getting any support from the cancer team we just seem to be being left to find our own way. He’s very weak, confused and unable to eat but maybe that is down to the morphine. 
I hope we can both find the strength from somewhere to get through this and maybe support each other through this site.

Bombie
Posted by

I hope so I need support and help and it sounds like you do too! It’s such a shock and I’m lost as to what to do. You need to make a complaint as you shouldn’t be left alone and need support from the cancer team! It breaks my heart that this horrible disease it taking out loved ones away too soon. 

Bombie
Posted by

Thanks for your email Ellen, I know I am going to need support and help through this as I suffer from anxiety and depression already. As my father is old I have been waiting for something like this to happen but it’s so sudden he just had a cough and feels fine but it’s incurable!! How is that fair??

Ellen M-Macmillan
Posted by

Hi ,

Thanks for getting back in touch with us.

It’s natural to question why this has happened to your dad and yes, you’re right it’s not fair that this should happen to your dad.

It’s encouraging that you’re identifying that you do need support. I’m glad that you have reached out to our Online Community for support. There really is nothing like the support that you can get from others who know what it’s like. We would encourage you to join our groups.

Talking to others about how you’re feeling, no matter who that is can help. Our group that supports each other when they are supporting someone whose cancer can’t be cured, and our carers and family and friends group can be a great place to start.

It’s important that you “check in” with your GP and let them know what is happening with your dad and how this is making you feel. They will be able to offer you support with your anxiety and depression.

Every Mind Matters NHS website can also be helpful to look at. It has great information and mind plans that can be helpful to try if you’re feeling anxious and depressed.

I hope you do manage to look at the different ways we can support you and to give our Support Line a call on 0808-808-0000.

Best wishes and take care.

Ellen-Macmillan Online Digital Nurse Specialist.

 

Minnie2011
Posted by

Hi Bombie

A district nurse came to see us today and she arranged a prescription for fruit juice meal replacement drinks which we are hoping will build him up and help with his energy levels. All he is doing lately is sleeping and we’ve been told this is a side effect from the chemo. He seems to be loosing more weight recently due to the lack of energy to eat.the nurse is going to arrange for someone to come out and put a hospital mattress on top of dads bed for him as he is so thin she’s concerned about bed sores

a doctor is going to come out to see us on Wednesday to discuss the possibility of getting him tablets to make him feel hungry

it’s so difficult to watch the man in your life decline so much. Every time my phone makes a noise I got into total panic mode

Billythedog
Posted by

Hi Minnie2011. I am sorry to read about what your family are experiencing with your Dads illness. My wife has the same and we have hit some brick walls along the way. If your Dads Cancer is Palliative Care then the Hospital should have given you a DS1500 and put you in touch with a Hospice. Believe me these Hospice Nurses work that fast with everything you wonder where it comes from. I know through experience. My wife has had 6 cycles of chemo and 28 of radiotherapy and the latter has stopped her eating so within 3 hours the hospice had got her some AYMES Shakes ( replenishment nutrition) they cost more than fortisip but the NHS can afford to give them to your dad. Try him on some Soup also he might be able to stomach it. 

You and everyone take care and God Bless You all

BILLYTHEDOG
Minnie2011
Posted by

Thank you for taking the time to reply. Unfortunately my dad was admitted into hospital on tue morning and they’ve decided they won’t give him anymore chemo. He was very weak, confused and dehydrated, we didn’t think we would get chance to have another conversation with him as he couldn’t speak. He has picked up a lot over the past two days, started to talk more, less confused and has started eating small amounts. Doctors have said it’s just a waiting game now and couldn’t answer when I asked if we would get him home. 

Billythedog
Posted by

Minnie I am so sorry to hear this Bad News. God Bless to him and you all.

I know what you are going through as my wife was admitted early hours Friday morning pretty much the same as your dad.

Take Care and God Bless You All

BILLYTHEDOG
Kelly A - Macmillan

Hi Minnie2011,

Thanks for getting back to us at what appears to be an incredibly difficult and stressful time.

It’s good to hear that your dad has started to pick up over the past couple of days. However, there are so many emotions and worries to deal with especially with the uncertainty of when he is likely to get home.

As Ellen mentioned its important to look after yourself and get support too at this time. The support offered by our carers and family and friends groups can be invaluable.

If you feel like talking you can give us a call on 0808-808-0000 and talk to one of our nurses about what is happening to your dad.

Please don’t hesitate to get back in touch. Best wishes, Kelly (Macmillan Information Nurse Specialist).

Bombie
Posted by

Hi Minnie2011

Just wanted to check in and see how your dad is doing? X

Minnie2011
Posted by

Hi Bombie

We brought Dad home last Thursday to care for him. We were told by the doctors to enjoy the short time we have left and that we are doing the right thing having him home with us. We currently have 24 hour care in place for him which is a massive help and support to my mam. He is totally bed rest now and is very sleepy, I really do hope we get to have Xmas with him.

xx