Hi all
My Macmillan nurse has just been in to disucss pain relief. We have been having these discussions for about 2 months I think and nothing has really helped in terms of pain relief.
For the last week I have had Fentaynal patches as well as my normal medication of Oramorph, Ibuprofen and paracetomal.
Still the pain.
So the nurse has suggested that I go to the hospice for a week or two to enable pain relief to be sorted out. A doctor will see me every day and changes can therefore be made more quickly to my medication.
Has anyone else done this? My first reaction was - I am not ill enough for a hospice and would feel a fraud if I went in and there are lots of iller patients in there. But my Macmillan nurse has said that is what hospice is for - to get pain relief under control and I must not feel bad.
I would be interested to know if others have been through this and have good or bad experiences of it.
I am going to try and keep this laptop with me (husband’s work one!) so I can still check in each day
Ena x
Hi Ena,
Like you I thought that once they wanted to ‘take you in’ it sends out the wrong message.
I have extensive bone mets since 2002 and have been getting a lot of pain for the past year. I had radiotherapy but it hasn’t helped, then last year on morphine which I didnt really tolerate too well. So I have been switched to oxycodone and still having pain problems. The Royal Marsden have their own palliative care ward where they do much the same as the macmillan hospices and I spent a week there while they adjusted my meds. It really is better this way because under normal hospital appointments/pain clinics etc it just takes ages between appointments trying to find what works for you.
I have found that I tolerate oxycodone a lot better than oromorph/mst. I havent tried fentanyl patches but do have the fentanyl actiq lozenges (lollipops) for breakthru as they are much faster acting.
It is really worth going with their suggestion - it is just what hospices/macmillan nurses are so good at.
Dawn
xx
A couple of friends have had a short hospice stays to sort out pain problems…hospice staff are usually good pain relief experts…I hope they can help if you decide to have a short stay.
Belinda…x
Hello Ena
I have also be offered to attend the hospice to get my pain relief sorted out. I have had a week in the hospital back in January to do this and I have been attending the hospice fortnightly so that the consultant can get miy pain relief sorted out. I am taking Oxycodine twice a day along with volsaid, amytrypteline I have also had to take Oxynorm liquid over the last week as the pain has been so bad.
I can see why the dr is suggesting is suggesting this for you it makes it much easier for them to adjust the medicines.
I think that you would be in the best place
caroline
Hi Ena,
I am in my local Marie Curie Hospice at the moment for nerve pain control-I’ve been there three weeks now.
I’ve found it really helpful.All the nurses and other staff are wonderfully caring.
I’ve tried various medications that haven’t worked for me and am currently on Oxycontin 60mg,Gabapentin(which they are changing tonight for Pregabalin)and Oxynorm 20mg/Paracetamol for breakthrough pain.
I felt the same as you when I first went in.I look and feel well(apart from shoulder/arm pain)and I felt a fraud because there are some very sick people in there and two people have died since I’ve been in there.
They keep telling me that people come in for many different reasons including pain management and even tiredness.I’ve been visited by the benefit advisor,social worker,pastoral care worker to name but a few.
I hope you get as much benefit from being in the hospice as I have.
best wishes,
Alli x
P.S. To Caroline-ask them if you can have the Oxynorm tablets instead of the liquid because,I don’t know about you but I found the liquid tasted disgusting!
Hi Girls
Thanks for your replies.
For the first week I was in here nearly every member of staff told me the password but it turns out to be the wrong one.
Finally my husband took the laptop off to find an IT people in the hospice. Bumped into the consultant who told him the correct password! didn’t think to ask the doc!
Well, I have been in here since Tuesday last week (19 May). Longer than I thought or hoped.
However, on saying that, this hospice is really lovely. The building is relatively new, 15 years, and I am in the even newer extension.
The gardens are lovely and there is a quiet, secret garden which my boys like running through.
The staff are great, although I do not get to see the consultant every day. Usually see a junior doctor tho.
I am currently on 2400 mg Ibuprofen and 3000mg paracetomol daily. and now am on Oxycontin 60mg x 2 per day.
Plus Omeprazole, senna, cyclizine. And monthly I.V. pamedronate.
In terms of pain relief, this has been wonderful. Yesterday was the first pain free day I have had in months. Bliss. But I did feel quite nauseous.
I was, however, attached to a drip and so could not move much anyway.
Blood tests had shown my haemoglobin levels were 7.7 - this meant nothing to me but they should be a minimum of 10 apparently.
And so over the last 2 days I have had 3 transfusions - about a unit (a pint) per go.
Today, back to moving around and have been quite physically sick.
So, not sure what to do. I think I am going to have to cut back on the pain relief…the sickness is dreadful. I am going to be referred to a pain clinic so that might help.
The hospice has tried sea band, acupuncture ‘plasters’ and TENS machine. All to no avail.
I would like to go home now but throwing up too much.
Will sleep on it.
Ena x