Hi! Newbie’s here

Hello loubelle26,

A warm welcome to the lung cancer forum, although I'm very sorry you have the need to join due to your boyfriend's unfotunate diagnosis.

I'm sorry you are struggling with your situation and would like to suggest in the first instance that you contact the Macmillan support line where you can talk through your problems and obtain practical help.

Details of their free services can be seen by Clicking here

I do hope you can resolve your problems soon. 

With my best wishes, Derek.

Dear Loubelle26

Firstly, you have taken the first step in trying to help your boyfriend by reaching out to this community -  a group of cancer survivors with a very wide range of experiences of living with cancer.  Maybe by sharing how others have helped us, we can give you a few pointers that you can use to help your boyfriend who you say has recently been diagnosed with terminal lung cancer.  

Firstly, to be told by a doctor that you have cancer is a devastating shock.  Our first reaction may be disbelief, and then when the shock wears off, many of us believe that we are going to die within a few months.  It is very, very frightening.  We may become sad and frantically worried and irritable.  We may be unable to sleep or concentrate on anything else.  We become afraid of what pain we may have to bear and whether we’ll be able to cope.  Until our doctors have developed a treatment plan for us we can feel uncertain and worried and just terrified.

Our thoughts immediately go to our family and friends – and we wonder how our terrible news will affect them, and we try very hard not to show our fear, to be very brave and strong for them, to make this awful diagnosis as easy for them as possible.  So it might seem sometimes that we are coping and that we don’t need anything.  But don’t be fooled.  The knowledge of having cancer is always, always with us, every minute of the day.  We wish it wasn’t and we try and distract ourselves and keep quiet about it as much as we can, but it’s always there.

What do we ask from the close people and partners in our lives at this time?  We appreciate being listened to so we can be comforted.  We would like our physical health and needs to be placed ahead of theirs for a while until we’ve learned to navigate our own shortfalls.  We would like others to take over all the little details and work of daily life for now and until or unless we can resume these duties.  We may need and appreciate, (especially if we’ve had surgery, or are undergoing chemotherapy or radiotherapy) someone else to cook the meals for us, to bring us little snacks when we feel like eating, to clean for us, to keep the kitchen and bathroom sparkling, to vacuum, to do the laundry, to take the rubbish out, to walk the dog, to create a calm and welcoming atmosphere, to do special little things for us even when we don’t ask them to, to bring us small treats and in fact to do everything they can to show that they care about how we feel, and they understand that we don’t have much energy and so that we can concentrate on trying to get better, and learn to live with this terrible diagnosis.   

Afterwards, when we learn that our treatment is working, that we will not die next week or next month, our love and appreciation for our special people who’ve been able to really help and comfort us during this very, very frightening time, to listen, to put us first, is almost unlimited.  I really don’t know how I would have coped without my husband and I will never forget how amazing he was when I really needed someone to be amazing for me.  Love makes the world go round and every day is a gift.

I hear that you have autism, but I understand that being autistic is not incompatible with having empathy.  Since a cancer diagnosis is possibly fatal whereas being autistic, while challenging and difficult for you, is not.  It really may not be necessary for this to be framed as any kind of competition. Your boyfriend will logically hope that you’ll be able to put his feelings first, at least for a while.  Would you be able to do that?  When he becomes irritable, are you able to tell yourself that he’s suffering, and are you able to respond with patience and kindness and empathy?  We know that this is very hard for our partners and loved ones but it helps us so much if you can be strong.  You’ve made a really great start by reaching out to ask for advice.  I hope this helps.  

PamelaAnne.

I am sorry to hear of your partner's devastating diagnosis, he must be so afraid and is obviously turning to you for support, which, from what you say, you are not able to give it. You say you don't want to ask him how you can support him, but you should ask him.  When he is in one of his "down moods", don't react, it's not personal, he is just scared of the future and lashing out, he needs empathy and a little hug now and again not an argument, as he says to you "at least you're not dying".

I won't go into your mental health, only just to say, although understandably important to you, it's not a priority at this time and now is the time to put your partner's needs first, even in his "down moods".  I say this because; many year's ago I had breast cancer and my ex-husband was very unsupportive, to the point where he 'eye rolled' whenever I wanted to talk about my fears, have a cry, or I needed help.  I won't go into the full details, suffice to say I was left completely alone in my diagnosis, treatment and recovery.  I have now, two and half year's ago, finished treatment for lung cancer, my now adult children were there for me in every step with lots of support and lots of hugs and talks.

I hope you have not taken offence in my reply, I'm in no way trivialising your diagnosis of ADHD and autism, I have a family relative who has ADHD and I know stress can trigger symptoms, it's just that at this time it's not a priority.  You and your partner are going through a tremendous upheaval and a very scary time and I wish you both well.  You have come to the right place here on this forum, you can offload all of your anxieties and fears and get help and information without it causing friction at home.

Very best wishes to you both.

Ann