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Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sun Jan 22, 2017 8:57 pm

I have just lost a huge post pressed submit and it all disappeared. Last night Pete was complaining of ulcers in his mouth and we decided to use a tube of Anbesol we had in the house and that seemed to help. I got up this morning to find Pete fully dressed and looking ill he was in agony with his mouth and said his throat was sore and couldn't swallow properly. He couldn't get any fluids over so also couldn't take his medication. I phoned the number the chemo unit gave me and they said to call NHS 24 and tell them that the chemo unit need a g.p. to visit. He arrived within 15 mins and said that Petes blood pressure was low and his heart was racing so he was admitting him to the local hospital.
The hospital put him on a drip of antibiotics immediately and also fluids. And then gave him X-rays and every test they could. They put him in an isolation room until they can find the root of the infection. He just looks so thin and so ill and I feel so scared as this is all new and I don't know if this is something that happens with PC or what to think is happening. It is like being back to when he was diagnosed and I knew nothing about PC and my mind was racing through every scenario. Can anyone tell me if this happens because of the chemo or is this something new on the horizon. I think I am just scared as I just don't know what I am dealing with .....
Elaine
X

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Sun Jan 22, 2017 9:43 pm

Have you checked the side effects for the chemo ? Did you tell the hospital you had used Anbesol ? It wasn't past its use-by date was it ?

You can tell I'm clutching at straws here, can't you. Let's hope that someone with a bit more sense than me will respond Elaine. Meantime I'm so sorry that things are on a downturn. Try not to be too scared because it sounds as though the hospital are doing all the right things.

Peter has had a miserable few days but feels a lot better tonight. He's got blood tests tomorrow and we see Dr Feelgood on Tuesday.

I hope Pete is a bit better tomorrow, be sure to let us know.

Love and hugs
Mo

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Sun Jan 22, 2017 10:21 pm

Hi Elaine,

This damn disease keeps you on the rollercoaster relieved or scared witless.

Pete is in the right place getting the care he needs and the system works, hooray for that. Ulcers are a chemo side effect, Pete has an infection, also something that people having chemo get because the immune system is compromised, the two may or may not be connected. The hospital are doing all the right things and you did the right things I very much doubt the anbesol is anything to do with it. You will learn to be obsessive about hand washing, yours and Pete's and about not letting anyone with any bugs anywhere near you.

Pete has a very serious illness and he has picked up an infection so it is not good news but you got help for him and the medics are on the case. Infections are always taken very seriously with chemo patients. It happens frequently which doesn't mean he will definitely be ok but it does mean that the medics have had lots of practice and well tried and tested medicine. You have done everything right and you now have to wait for the medicine and fluids to work and rest if you can.

I know what you mean about feeling like you did when he was first diagnosed. We all feel that when they have a step change. I know I bang on about it but attending a hospice caring course is well worth the effort because they cover lots of things that can happen which gives you a bit more confidence when a crisis occurs.

We will all be praying and thinking of you and if you need us get in touch or call the nurses on here, no one minds xxxxx

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newly Diagnosed

Postby sandraW » Sun Jan 22, 2017 10:27 pm

Hi Elaine. It will most probably be the effects of the chemotherapy as his mouth is sore and he has ulcers, Trevor was prescribed a couple of different things to help neither was particularly pleasant but they did help.
I am sure the hospital will be able give him something to make it easier and if he is getting fluids he should feel a bit better soon. Not sure about the the racing heart or the low blood pressure though, but dehydration can cause all sorts of side effects and make you feel absolutely rotten, at least he is in the right place to get things sorted out.
This disease is so bloody scary, always throwing something new into the mix.
I have just seen Marmalade has posted we are both saying the same thing, but she always puts it much better that me.
Let us know how you are both doing tomorrow, take care love sandrax xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Mon Jan 23, 2017 4:15 pm

It does sound like an infection to me, his immune system will be at rock bottom with the chemo and the slightest thing can make them really poorly - infections are easily transmitted from the mouth into the blood (I know this from Phoebe's heart disease days), so if he's got a sore mouth with some open sores, it's easy to see how he's picked something up. Fingers crossed the antibiotics work well and get him sorted.

Much love and hugs

Vx

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Mon Jan 23, 2017 8:41 pm

Oh Elaine, its so tough. How is Pete this evening? Of course you are going to be scared.
Everyone is so different, it's impossible to predict and no-one really knows what they are dealing with. It's such an evil, vile disease.

Thinking of you x

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Mon Jan 23, 2017 10:38 pm

Hi Elaine,

Hope Pete is feeling better and that you have found some peace this evening.

M xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Tue Jan 24, 2017 5:09 pm

Thank you everyone it has been a real downward turn the past three days. There is only one visit per day 7-8 pm so I couldn't get any news of Pete all day and I was worried sick. I emailed the nurses here and as per usual they explained things to me in great detail and put my fears to rest.
When I finally went in I was appalled at the lack of care he was getting and the upshot was a very stressful talk to a nurse when visiting ended. It involved being soiled nothing to eat and medication not being given.......I contacted the chemo units 24 hr care line also I emailed the nurses back to tell them it may be neutropenia sepsis.
No visiting until 7pm was not part of my rules today ....I appeAred at the ward at 1pm with fresh clothing and a whole box of enshakes as when I asked about him not eating I was told they don't do enshakes so was up to me to supply them. They were so different and so friendly today and she said just pop in and see Pete. What a turn around since last night. Couldn't get through on the phone yesterday to ask how he was and when I phoned this morning it was picked up immediately and I was given a full report about Petes condition.
I cannot believe I am at the bottom of the roller coaster again and how little time it took to get down there. Some one posted that you would think everyone had a different illness because of the wide range of issues and it's true. Hope everyone has a good day.
Elaine
X

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

Re: Newly Diagnosed

Postby Proud Wife » Tue Jan 24, 2017 6:46 pm

Shocked to hear your latest news Elaine. That's disgraceful. No excuse whatsoever to find your husband in that condition. How could anyone treat a chemo patient like that, short staffed or not. I am very happy to hear though that you had a totally different experience today.

I hope that Pete has a comfortable peaceful night (and you too of course) and that tomorrow sees the start of an upwards trend again xx

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Tue Jan 24, 2017 9:59 pm

Hi Elaine,

Dont take any notice of the silly visiting hours. If anyone challenges you tell them you are concerned about his nursing care and need to be reassured. Glad you found things better today and hope that Pate has a good night.

You must try to rest if you can, carers need all their wits about them and plenty of energy reserves because as you know, these incidents are exhausting.

Much love and prayers

M xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Newly Diagnosed

Postby Veema » Tue Jan 24, 2017 10:57 pm

Shocking.

Pleased it has been better today...hope those antibiotics are doing the trick.

Huge hugs Elaine

Vx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Wed Jan 25, 2017 5:01 am

Hun. they do not have any legal right to refuse you access to your husband. I get the visiting hours... helps the patients and the carers in general. Dad has 12 - 8 visiting and I was in there at 9 this morning. When they are busy and the patients are very ill it is actually more helpful for you to be there. They just don't want 15 people around a bed for the whole day and the rules help them manage that. Just rock up this morning and explain why you are there and they will be fine. x

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Wed Jan 25, 2017 9:37 am

Good morning everyone and thank you for your support the last few days have been quite stressful but I am benefitting greatly from your replies and growing in confidence at challenging Petes care needs not being met. I will go in there today with Marmalades " Silly rules " ringing in my ears lol thanks M.
DG it was wonderful to see a post from you today I am so glad you are back. Wasn't the same without you.
Today's early news is that Petes neutrophils are on the way up at last and he may be on oral antibiotics by the weekend and ready to come home , fingers crossed.
I have noticed a strange new pattern in myself. I am in this highly charged stressful place during whatever the latest crisis is and constantly wanting to learn how to cope with everything and the way to get Pete through it. As soon as there is a sign the crisis is over I automatically drop those fears and stresses immediately and start preparing for the next phase.. It's getting to be an automatic reaction or is it just that you are all so experienced and such good teachers that I am coping better. I am so grateful it feels good not to be like a headless chicken any longer.
Elaine
X

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Wed Jan 25, 2017 3:49 pm

Oh Elaine, I am so happy to read that things appear to be improving. I don't think it is anything we are doing except maybe a bit of encouragement, it's just that you are coming to terms with the way things are and learning to pace yourself a bit. Sometimes jumping on symptoms is the right thing to do and sometimes you need a more helicopter view, knowing the difference is real wisdom and it only comes with experience.

Great to have good news!

M xx

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Wed Jan 25, 2017 3:53 pm

PS, I am very pro taking medical advice but very anti anyone who tried to keep me from my man. Don't make yourself a nuisance to the staff but don't take any notice of visiting hours either, if you want to see Pete you go and see Pete. xxx