the road well travelled

Hi all, 
I just wanted to post on here as over the years this forum has provided me with such brilliant information and comfort. 

To give you a potted history of my story, I lost my mum to Inflammatory breast cancer 4 years ago. During her treatment, I lost my younger sister to sudden adult death syndrome, and at the begining of this year lost one of my very dear friends to breast cancer. 
My Dad has just been diagnosed with advanced lung cancer (6 weeks ago) which has spread to his liver and spine. The prognosis is very poor and he started chemo last week with the aim to hopefully add a few months to his life. 

The first thing I want to say is that whilst our story is so so bleak and sad, Im not on here for lots of sympathy. I believe in being realisitc but proactive. So I wanted to come to this group with the hope of some support or offering advice on certain things. The thing Im struggling with the most is where Im going to get the energy from to go down this path again with my Dad when I know what the outcome is going to be, its so so echausting emotionally to be in a constant state of limbo, living from treatment to appointment I just cannot get myself into a good space to deal with it all. 

I am honestly gobsmacked that we are going down this road again, it seems incredibly unfair. Im sure our local cancer unit is going to think I have some strange fascination with the disease as I have been in there so much over the past few years! 

My Dad is 70 years old, he has small cell lung cancer (of course the worst kind) with spots on his liver and also tumors on one vertebrae. Hes very active for his age, very fit, which is I think maybe why they offered him some chemo? 
He has his first round last week, 2 days IV, 1 day pills, and so far so good, no side effects as yet and hes feeling totally ok. 

My question to anyone who has been in this situation is how long before we would expect to see a deterioation in him? We are all looking at him waiting for him to just collapse as the prognosis and doctors appointments have been so so bleak, but he is honestly just carrying on as normal? We want to support him as best we can as he now lives alone, but he is still very independant and very active. 

Any help or advice would be so greatfully received. 

Thank you 
Kx 

  •  

    Hi Kittyn,

    A warm welcome to our forum. I am glad to see that you have gathered information and comfort from it in the past and am sure that you will again as your dad travels his cancer journey.

    I cannot offer any platitudes. I have lost both parents as well as several relatives and close friends to cancer and I have had 2 bouts of breast cancer myself in the past 8 years. I'm sure that you ask 'why me?' several times - I know that I did, but sadly there is no answer.

    Your dad will probably find his chemo progressively more difficult to cope with. He may also feel extremely tired at times, may not feel like eatng and may be nauseous. Do you live nearby him? Whilst it is good to hear that he is managing to live on his own, you may find that you'll need to help him with the preparation of meals, general household duties.and even some aspects of personal care as time passes.

    Caring for anyone with cancer can be very draining both emotionally and physically, yet carers seem to find the wherewithall to cope with it. It's as if we have a little hidden reserve stash of energy that we can call on when it's really needed.

    Try not to think of the outcomes you've experienced with your mum and your friend. Don't think of the future. Live each day in the moment. He will have good days and bad. Support him when his days are bad and try to enjoy the good days, because these gradually tend to decrease in number.

    I appreciate that your dad's diagnosis is not good news, but try your best to put a positive slant on things for as long as you can. You will find that this makes it easier for both of you to cope with it. You will also find it better if you can both talk about this openly with other family members and friends, but most importantly between yourselves. Have you discussed how your dad feels about his diagnosis and prognosis? This can often be a frightening time for people, even if he appears to be carrying on as normal.

    By the sound of things you are accompanying him to his appointments. This can be very helpful. The other thing that is useful is to draw up a list of any questions you have for the consultant between visits and take this to his appointments. This way you don't forget to ask important questions.

    I'm sure that you can already appreciate that cancer doesn't follow any rules. It affects different people in different ways. If you have been reading some of the posts on here already you will know that even the doctors cannot always predict a patient's prognosis accurately - in fact they can be out by several years in some instances. At best their predictions are just a guesstimate.

    With my relatives, I found that they began to deteriorate after the 2nd or 3rd chemo treatment. Some picked up after treatment stopped, but others never made it through the treatment, so very different outcomes. I guess that a lot depends on the type of cancer, the stage it is at and the general health of the patient.

    Sorry that I cannot be more helpful. Did you nurse your mum at home to the end?  If you see a marked decline in your dad's health, there are various ways to approach his care. He can be nursed at home,  in hospital, a hospice or at home with additional care facilities. We are currently caring for my mother-in-law at home for a non-cancerous end of life situation. She has dementia and we initially thought that she would be best off in a residential care home as she tended to wander out at night.

    Her social worker suggested trying to care for her at home first and I am so glad that she did. She has been supplied with a hospital bed at home, has carers coming in 4 times a day, a nurse a couple of times a week and is still in the bosom of her family.

    I hope that I have not been too frank for you here. Like you, I tend to be realistic but proactive.

    I wish you all the very best as you set off on this journey once more.

    Please keep in touch and let us know how you are both managing. Remember that we are always here for you.

    Kind regards,

    Jolamine xx