Horrible way of dying

Hello epzcaw and a warm welcome to the forum. I am so sorry to hear about your husbands diagnosis and the distressing time you are both going through. I too have terminal cancer, and have access to my hospice and their palliative care team, which i hope you do. My hospice offers me counselling, which has helped me through difficult times and they do home counselling too though i know this is not universal, If your palliative care team are hospice based they may be able to help. I know Macmillan do phone counselling too, 0808 808 00 00. I wish i could be more helpful, best wishes to you both.

Eddie

Hello epzcaw 

I’m Steph and I’m part of the Online Community Team here at Macmillan. May I wish you another warm welcome to the Community, although I’m sorry that circumstances bring you here. I hope you find the site to be a safe place of comfort and kindness. 

I’m reaching out to offer some additional support, as we noticed your post talking of your husband's distress, nausea and extreme constipation.

It’s important that your GP is kept informed about any new or worsening symptoms and how it’s really impacting your husband’s quality of life. They will be the best people to assess and provide any new medication or other practical support your husband might benefit from.

You may have been given a 24 hour hospital telephone number or you could contact NHS on 111 to be assessed (24 hours a day).

I hope you will keep posting here to let us know how you're getting on.

If you’d like to talk anything through with someone at Macmillan, I’d encourage you to contact the Support Line for emotional, practical and financial support. Even if you just want to chat with someone who is there to listen, I’d really encourage you to give us a call.  Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat.

We have some information here to help support you when your loved one has cancer. There are various sections that you might want to have a read through, especially around the nursing and hospice support that might be available in your local area.

How are you feeling epzcaw? It's important that you have some support in place for yourself as you go through this distressing time with your husband. There are also some ideas in the link above around seeking support as a carer.

I hope you find the support you’re looking for. Please do let us know if you have any questions or need further support with anything at all. I hope the Community helps to show you that you don’t have to go through this alone.

I’m not sure if I can be of any help but I have been where you are. My husbands GP prescribed him anti depressants which took a couple of weeks to kick in but did help his mental state for a while. Sending hugs x

Thank you all for your replies.

The palliative care nurse finally came to see us  last week, five weeks after his diagnosis..  She was full of confidence that she could deal with all his symptoms.  The nausea has improved with change of medication, but the constipation is as bad as ever..  Today she phoned - she was rather dismissive and advised to increase dose of one of the medications.

I don't see that counselling or indeed anti-depressive medicines can make you mind any less about how awful ou feel phsically. 

I'm afraid palliative care is not all its made out to be.  I'm signing up to Dignitas ASAP so if I am in this state, i have a better way out.

Hi epzcaw, I am so sorry to hear you are unhappy with your palliative care nurse's attitude, but she will be taking your husbands constipation seriously as it is seen as a significant condition and her recommendation will be based on years of experience, she helped with the nausea, often finding the right dose takes more than 1 try, I understand your position on counselling, I was sceptical too and needed convincing, though I am glad i saw one, Can understand your worries about being in a position where you have little quality of life and want to do something now in case you find yourself there in the future, I am terminal and have done something similar, though at this time life is ok. best wishes to you both, take care.

Eddie xx

Hi Epzcaw

The symptoms you describe are almost identical to those that my husband is experiencing.  He has an aggressive glioblastoma brain tumour and is also on palliative care, he was given 3-4 months at the end of February.  It came as a massive shock to both of us!

Like you, I support with his physical needs but became very distressed myself at his mental state; he cried at night and went to some very dark places in his head, his anxiety levels were sky high.  I did reach out to the palliative team and expressed my own concern, they immediately prescribed Lorazepam, the prescribing nurse even took it to the pharmacy for me, 0.5mg morning and afternoon and 1mg at night.  This has made a massive difference, my husband is much calmer now, and the impact was immediate.  Unlike anti-depressants they have the immediate effect.

We have a wonderful palliative team who are totally focused on making my husband's journey as comfortable as possible; as his care giver they listen to me and always take on board all that I say.  Don't be afraid of telling them exactly what you think and feel about your husband.

Take care x

It's 18 days since the first visit from the palliative care nurse, and things are getting worse all the time.  Hs nausea, which initially went away, has returned. Her repsonse when he told her this on the phone on Monday w.as "oh, it will recur from time to time".  But it is not time to time, it is there every day and preventing hime from eating and making him feel awful (as nausea does) . There seems little point in contacting the team, as the response is usually "keep taking the pills" or "it wil go away" or "it is part of the disease".  Another problem has now worsened - he has severe oedema in  his legs from a pre-existing heart conditoin, which is getting steadily worse. He mentioned this to her on Tuesday, and she said the would send on OT - its Friday and no-one has appeared.  It is reducing his mobiity further and causing pain.

I phoned the palliative care number last weekend to report how diestressed he has, and their offer was to send him to a private care home for a few weeks as they have no beds in their own unit.  He is adamantly against leaving home, which I think is a mistake, but a private care home is not somewhere I would want to go.

it is horrendous for me, and many more times more horrendous for him.

Hi Epzcaw

I am so sorry to read of the distress for both you and your husband.  I urge you to contact your GP.  I actually put an email together to complain at the lack of joined up  healthcare for my husband, this I sent to the doctor's surgery which was then picked up by the practice manager.  It was as a result of this that the doctors contacted palliative care to discuss a collaborative approach to his care.

Since then they prescribed cyclizine for his nausea which he takes every day whether he feels sick or not and, as mentioned in earlier post, they prescribed Lorazepam for his anxiety and distress.  The palliative team now include our doctor in all care given to my husband.

My husband too expressed his desire to stay at home and, despite his continual decline both mentally and physically, our doctor and palliative care team continue to support this.

I send you lots of love and hugs in your journey x

I'm sad (and yet not sad) to say that my husband died today with no let up in his suffering.  After several weeks of nausea, retching and constipation, with increasing difficulty moving, and agnoising trips to the toilet beucase of the gastric symptoms, breathlessness overtook the other problems.  He was admitted to the Macmillan Unit in our local hospital where they are supposed to deal with symtpoms.  He was there for 8 hours before any treatment was decided on.  I don't know how long it took to implement this as I went home then.  I texted him this morning to ask how his night had  been and how he replied "worst ever" and then "same today".  I phoned the unit and they blithely said  a doctor would be on rounds soon.  Two hours later, they phoned me to say that he had "passed away".  He wanted to die at home but agreed to go into the unit because he believed, as I did, that they could make him feel more comfortable.  Sadly not.

I am sad (and not sad) to say that my husband died today with no remission of his agony.  He had suffered for weeks of  nausea, constipation,  more recently regular dry retching and increasing breathlessness wiith multiple agonising trips to the toilet because of either the constipation or its treatment.  Yesterday, he was admitted to the Macmillan unit in our local hospital where they are supposed to able to manage symptoms.  We arrived at 9am, and only at 5pm didi a doctor come to decide upon treatment.  I don't know when (or if?) this was administered.  I texted him this morning to ask how his night ahs been and how he replied "Worst ever" and "same now".  I phoned the ward and they blithely said that a doctor would be on rounds soon.  Two hours later, they phoned me and said he had "passed away".  He wanted to die at hime but agreed to go into the unit because he believed, as I did, that they would make him more comfortable.  Sadly not.