Hi everyone, I am new to the group, my husband was diagnosed during covid pandemic- 2 years ago, full bladder and prostate removal, chemotherapy and now terminal stage 4, had immunotherapy for 5 months but now spread to pelvis, hip joints, hips and femur, hopefully starting paclitel chemo in September. We are due to fly to the USA on Sunday with our children - this was rearranged from covid but booked prior to diagnosis, he is on many different meds including zomorph and oramorph, venlofaxin and is diabetic. I have lots of questions if anyone can help?
He has been given the all clear to fly by oncologist, GP, nephrologist and palliative care team, all insurance covered and airline medical team have authorised him to fly (phew)
My first question- he has sank into a massive depressive state in the last week, hardly sleeping, crying that he doesn't want to die, nightmares when he does sleep, palliative care team are convinced its anxiety I agree. This has been a huge milestone/target and I think hes worried that once hes achieved it that's it. Any ideas how I can help him? We do breathing exercises when panic sets in, I rub his back chest when he feels he cant breathe. He has been referred for counselling with palliative care team but this won't happen until September.
He is not sleeping much through the night, now totally exhausted and does not stop twitching/jolting in his sleep/naps. Often crying in his sleep and saying he doesn't want to die. He has only just gone over to palliative care team and in logical moments knows its different to end of life care. Hes only 48 and we have 2 children age 12 and 19.
Anyone struggled like this?
I honestly don't care about the holiday but he is determined he wants to go so we are still planning on going.
Any ideas/advice anyone can give us would be gratefully received
My 2nd question is practical based, if it goes to plan and we fly on Sunday do I put all of the medicines and stoma kit in his hand luggage or just enough to see us through? Airline has authorised an extra hand luggage bag and obviously morphine is a controlled drug so have got copies of the prescription along with GP letter.
My heart is breaking seeing him suffer like this, I know there's no magic trick to make him feel better, he's been on venlofaxin for about 6 weeks now, x1 tablet morning and night.
Hes fought so hard to be able to go I just want to give him the most wonderful time with the kids, if that's staying at a villa 24/7 I am good with that. Sorry for the long post, feeling scared and very alone.
GP is ringing tomorrow
Dear Jules99, As a bit of a night owl I just want to offer you a very warm welcome to this friendly and supportive group, at such an awful time for you. Just so you feel a tiny bit less alone if you are checking in looking for some response.
While also being the bc person's wife, my husband's experience is totally different. So I can't offer much useful info on the depression or the travel. I do suggest though that you may get support also on here from the carers' group and 8am-8pm, 7 days, from the MacMillan phone line 0808 808 00 00. Also have you registered with your local carers' Association? The support offered does vary but it's definitely worth doing. Many also have groups, outings etc for young carers which your children might qualify for.
As regards the venlofaxin, I do know that many mind drugs do take 6-ish weeks to give benefit and often make things worse during that acclimatisation period. There may be details in the pack leaflet. Best ask the GP. I would make a list of things to ask during the call, to avoid the frustration of them ringing off only for you to remember something else you needed to ask.
With very sympathetic thoughts to you all,
Denby
I am so sorry Jules. I have no knowledge what you are going through, at this time . I'm hoping someone with a bigger understanding & knowledge . Will see your message. My husband has stage 3. I justhave that info. But no end of life. Your poor husband. We can only imagine xxx the people on this group are fab & positive ️
Kimdav
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