infection… hallucinations
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Dear Patzel, so glad everything is going on an even keel right now. I just don’t understand any government putting off Cancer treatment. It just is not right. I sure hope you get your radiation date sooner than later! In the meantime enjoy the quiet moments!
Fantastic news. So glad this has been resolved. Hope you receive a radiation appointment date real soon.
Hugs,
Marionan update:
He was released from hospital last Wednesday and is doing fine at home. MacMillan had got a pain management sorted out which worked fine. Two days ago he decided to stop taking the opiods and is just on non-steroids and paracetamol at the moment and still doing fine. I was a bit sceptical about this at the beginning but it turned out to be ok.
So it might have been that the cellulitis contributed so much to the pain. Now since that infection is gone he is a lot better.Now we are waiting for news about when radiotherapy is going to happen.
@Gavin: Yes, the professor is ionvolved in the case and it seems the hospital consultants lost a little bit of their self-confidence since that happened so they haven’t come up with suggestions so far and are obviously waiting for the prof’s advice first.
Our problem here in Scotland seems to be that there are guidelines about first cancer treatment waiting times (where the targets set by government still are not reached) but there are none regarding second treatment or recurrence etc., so nothing happens as quick as you would expect it to.So glad to hear things are going better. Sounds like they got the meds right….and that you got a good night’s sleep. That is more important than anything. It’s kind of funny but when things were really bad this summer trying to deal with my husband’s cancer/surgery and my son’s cancer/surgery I had no trouble sleeping at all. I hit the bed at night and crashed. Now that things have slowed down….my son is cancer free now and off to college and things are doing okay with my husband, I am having a terrible time sleeping. I finally broke down and asked my doc for something. It’s helped somewhat.
I have been very lucky this summer having an adult daughter at home so she could care for the animals and take care of whoever wasn’t in the hospital. She has been a big help. It’s a two hour drive for us to get to the hospital where both of them have their treatment.
Keep hanging in there and it is so good that he is doing better and that the antibiotics are working.
KrisV
Hi Susanne,
So glad to hear that you got him to hospital and that he is doing so much better on the Macmillan ward than he was doing last week, this is great news. And very happy to hear as well that he is being spoiled rotten and that the nurses are taking great care of him in all respects. Fingers are crossed that his recovery from the infection continues and that the pain plan keeps on working too. I know how exhausted you will have been so happy to hear as well that you are feeling more recharged too. The extra hour in bed with the clocks going back this morning came at the best time I would argue!
Any word back yet on the referral to Prof Valle?
My best wishes to you both,
Gavin
@Kris
I think the two of us are in a very similar position…He’s in the MacMillan ward at the moment (which is the cancer ward) and the nurses are doing a brilliant job. They seem to have worked out a good pain management (still with some opiods but in a dose where he’s not dopy and confused anymore and no more hallucinations). It was so good to see him yesterday, painfree and cheerful and looking far more positive in the future than in the last horrible week where he was in a haze and trapped in a vicious circle of either being in agony or doped and confused.
Infection is responding to antibiotics and he is getting the best attention I can ask for being the only patient at the moment in this ward and the 2 nurses caring exclusively for him (and spoiling him with homebaked sweeties).
Due to the winter timetable of our ferries I can’t go in today (just the one ferry tonight which takes the kids back to school) but will be on the morning ferry tomorrow.
There would be possibilities to stay in a B & B or with a cancer charity nearby like I have done the first night but I also have 8 horses and a cow to look after, some small animals and his cat… to hire someone to look after them all is too expensive and therefore reserved for the times when he will be in the bigger hospital on the mainland for the radiotherapy where I can’t travel daily.I managed to get myself “recharged” with a good night’s sleep (got up after 10 this morning) and setting the clocks back an hour to winter time has also given me an “extra” hour so I’ve done some more trivial things today like washing and cleaning which had not been done for a while.
Patzel –
I am glad you are taking care of yourself. Is there anyway that you can stay closer to him so you are not having to ride the ferry everyday? Is there a way you could maybe stay one night in his room or an inexpensive hotel close by? Just a thought. When Mark is in I stay right next door.
The opiods could certainly contribute to the hallucinations and personality changes. What is he on for meds and at what dose? Have they tried anything like Haldol or Seroquel? Both of which are anti-psychotics that might help.I don’t want to bombard you with suggestions like Lainy said but I am more than willing to help any way I can. You can email me directly if you would like at: dazoo3563@comcast.net and I give you support as needed.
Hopefully you get some good sleep and take care of yourself.
KrisV
kvolland wrote:P
Also have they checked his liver function tests or an ammonia level both of which could lead to hallucination and behavior changes.I have asked them to do that and according to them the results were normal so it must have been the opiods which caused the hallucinations.
@lainy
I would have preferred them to investigate more detailed. But – as I said – this is the NHS and sometimes it seems there are “budget guidelines” which is still difficult for me to cope with since in Germany they investigate health issues not only by “look and feel” but also using lab facilities even in minor situations.Another problem I have is that he’s not telling the medical staff exactly how he feels. When they ask he says he’s fine (he’d love to go home) and after they are gone he tells me that he still feels bad. Also he’s still confused and dopy although the dose of opiods has been lowered. So the speech is still sometimes slurred. Doctors and nurses might get the impression of a confused elderly gentlemen so it is a hard job to convince them that he’s usually absolutely clear and this is not his normal self at the moment.
But now I need to get a few hours sleep, will have to be on the early morning ferry to go over to the hospital again which is a 2.5 hours boat trip one way (same back again in the evening) so I think I should better have a rest.
Oh Patzel I am so relieved for you both, HA, the hospital said he should be there, now what does the DOC say?
I know you don’t want all advice thrown at you right now but when Teddy got infections his ONC who was a #1 in the city always put him right on an IV of Levaquin plus they need to do a blood culture which takes a few days however they can start the Levaquin IF they have it. It starts to take hold by the next day. The ONC said it will take care of ANYTHING! Best of luck you did the right thing!Patzel –
One thing I can say is that if it is cellulitus which it very well could be…..In my personal opinion I am not sure the Penicillin is the best choice for an antibiotic. Some sort of Cephalasporin like Cephalexin or the IV equivalent might be better. We see a lot of cellulitus and usually treated with oral antibiotics…one called Kelfex. You may ask about that. There are some other broad spectum antibiotics that might work better. Not trying to second guess the docs but sometimes resistance is easy to build up to Penicillin.
Also have they checked his liver function tests or an ammonia level both of which could lead to hallucination and behavior changes.
The other thing you might ask for is somethind like Haldol to keep around for hallucinations and such. It is an anti-psychotic that works well in situations like this.
I am glad you finally got him airlifted and that you were able to go with. Hopefully they can get him all fixed up so you can both go homeKrisV
he’s been airlifted with the helicopter to the local hospital on the main island yesterday. Luckily I could come with him so he didn’t have to travel alone. GP was still not sure whether it was necessary but agreed when we insisted that he should be admitted.
Hospital said it was the right thing to do and put him on the drip immediately.@clare
it is around the area where the drain was, but it could not have been a “fresh” infection because that was more than 10 months ago.Hospital staff think it is cellulitis, did not rule out other possibilites yet but will only perform a biopsy if they are not happy with the response to the antibiotics. In other coutries they do a routine biopsy to find out which particular bacterium caused the infection just to make sure they got the right antibiotics but under the NHS this is not done as a routine.
So far there seems to be a positive response to it but considered he’s been on oral penicillin for 1.5 days and now on iv penicillin for another 1.5 days I would have expected a bit more of a response.So at the moment they are trying to sort out his pain management and hope with the infection going back that the opioid dose can be lowered (because he seem to get a hang of it).
Finally also Aberdeen must have come up with a treatment plan or at least they are discussing it according to the information of the local hospital staff. They are thinking of either bisphosphonates or radiotherapy.
So I need to find out now what will be the best option and what sort of radiotherapy might be possible. And I hope whatever it will be that it has not too many side effects, I don’t think he could cope with too many more problems at the moment.
Hi Patzel,
I agree with everything the others have said. I know that in the rural areas of Scotland, doctors may have to manage things slightly differently but I believe there is a case for being more cautious and almost being a step ahead because of the complexities of logistics and transportation to a major hospital being more challenging. That’s without a condition of CC in the mix which needs his specialist to re-assess.
Can I ask – the red hot swelling – was there previously a drain there or a point or entry for anything during a procedure? If you think he is septic then he needs hospitalised -no questions asked. Would it be Aberdeen or Inverness he would be air lifted too?
Patzel,
There are so many things that can cause an infection like that…..and many may no even be touched by oral antibiotics. Sepsis is a real risk related to any infection and can make so pretty unusual changes in a person. Antibiotics (oral) will not be very helpful for sepsis and the fact that whatever in causing the infection may not be susceptible to the antibiotics.
The hallucination may also be a reflection of the liver not working well especially if accompanied but dark urine and light colored stools. It could be a sign f an elevated ammonia level and there are several ways to deal with that.
I would keep calling and calling you GP telling your concerns over and over again. Tell them you want him seen in the hospital and you won’t take no…..squeaky wheel gets greased.
Hang in there and keep us posted.KrisV
Patzel…gale force winds present a difficult situation. However; your husband needs to be evaluated by a physician familiar with this disease.
Hugs,
MarionI agree with you all, also does the nurse who came round today.
Unfortunately GP doesn`t think he should be admitted as long as he`s looked after at home. He is convinced the antibiotics should be sufficient to keep the infection at bay and has lowered the dose of the opiods. Well, the latter I agree with to hopefully minimize the hallucinations. But I am not so sure about the infection…
It`s not easy to just go to the hospital if you live on a remote island. The only way would be to airlift him with a helicopter. And this can only be organised by the GP.
In the meantime (during this night) I can only keep an eye on him and if there is any worsening to call the GP again in order to get the helicopter (gale force winds tonight so this might be some task)…
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