I am sitting and watching my husband trying to get comfortable so he can sleep to alieve the exhaustion he is feeling and the pain of watching him and not being able to help is overwhelming. I try really hard not to cry again as I do not want to upset him and yet the tears come almost at their own will. I thought I would be more brave than what I have been. His body is bloated with fluid and it is causing further pressure and pain on other parts of the body. His breathing is hard and I ring the palliative care people to seek advise. Trying not to cry over the phone I give the symptoms and am told in a matter of fact way that I am to give him more pain killers and there really is not a lot they can do overnight. While I am accepting of this advise, I am also concerned that perhaps I should not have rang as this is "normal". I know that the professionals see this everyday and know the routine, however I don't see my once strong husband in this pain and looking like this everyday so I am concerned. This has been ongoing dilemna for me throughout our fight with this disease. Never quite knowing when to call somebody as it is all perfectly normal and they will adjust medications later. Just like having children this disease did not come with a book of instructions and it is so hard at times. I don't want to be a pain and take the care away from somebody who really needs it if this is normal. Just tell me. I also don't want to be known as a panic merchant and then when things are not "normal" ring to be dismissed as one. There is enough to cope with, without having to think about each time picking up the phone or not. I thought I would be braver. As we talk of the past and make jokes of the future my heart is breaking and while I am trying to have Christmas be special it is so hard. This is one experience I could have had deleted from my list of things to do and see. I will never understand. I will try to be more brave.
I've been going through exactly what you describe. My friend is home on oxygen after 6 days in hospital with "pleural fluid." Oh, the medicos tell him, your pain could be from blood clots or pleurisy, both are common with metastasis in the lungs. Well, they say to him, we can't really do much more but come back anyway in a month to onclology and we'll review your case (meaning, you will probably be in hospice by then).
I went to a counsellor for carers who listened while I talked for an hour, I just couldn't seem to stop. It was good to uncork the bottled up feelings. By the time I go again in a couple of weeks, who knows what will have happened.
I wish I were a better nurse, gifted with patience, patience and acceptance. As the serenity prayer says, to have the wisdom to tell the difference between what I can change and what I cannot.....and it seems what I can change is my consciousness, my perception, my interpretation, my attitude.
That's a lot.....I have come a long way, far enough to see how far there is to go.
And for my friend, how much more difficult it all is! To go from active to inactive takes a lot of adjustment. Thank goodness for the Palliative Care team and the Royal District Nursing Service for their support. It makes it bearable.
I am being as brave as I can and crying if I need to....and remembering a bigger picture of what's eternal and infinite, (whatever that means to you).
My heartfelt good wishes, Louise
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.