Newly Diagnosed

[Elaine123]

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

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[Justamo]

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

[Guest]

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]

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]

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]

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

[Guest]

Hi Elaine,

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

M xx

[Elaine123]

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

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[Proud Wife]

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

[Guest]

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]

Shocking.

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

Huge hugs Elaine

Vx

[Dandygal76]

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]

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

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[Guest]

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

[Guest]

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

[Justamo]

Elaine, I know what you mean about being 'highly charged'. Somewhere in my posts I think I have said that I had the thoroughly stupid idea (but it seemed sensible at the time) that the harder I worked looking after Peter then the quicker he would improve. It was a bit like an Open University Course - the more knowledge I could cram into my head the better.

What was all that about ? Really stupid; instead of one sick person and his carer you get one sick person plus a gibbering wreck who is no use whatsoever. And who can't enjoy today in case tomorrow is awful.

The last time Peter was in hospital there was a PC patient in the bed next to him. The nursing staff gave him his Creons to take along with his night sedation. And he solemnly told me that they helped him to sleep. Marmalade says to smuggle drugs into hospital and dish them out when appropriate, and that's what I'll do next time. Apart from loved ones with PC I bet we've all got huge handbags . . .

Hope Pete improves soon and you get him home to look after him properly.

Take care Elaine, much love, Mo

[Guest]

Yes, absolutely, good point Mo, have plenty of Creon and make sure Pete has a secret supply in his wash bag. A lot of nurses and helpers don't seem to understand that they are not drugs, do not need to be locked up and should be given before and with food not as part of a drugs round

M x

[Elaine123]

M and Mo what is that all about that nursing staff don't know about Creon......when I asked them to always ensure that Pete was given them with meals they were totally confused. For the third time I have went in and seen Pete not wearing his white stockings......actually left a pair over the end of the bed thinking that plus his daily injections would give them a clue that they had to go on. Especially when he was bed bound for 4 days.

Any ways he looked fantastic tonight and is now off one of the drips and comes off the remaining one tonight and commences oral antibiotics and his diarrhoea stopped this afternoon so I don't think it will be too long until he is home again....so looking forward to it. He has been lucky that this is his chemo break week so he hasn't missed out on any as that is his biggest worry. I am going to take everyone's advice and get to bed early tonight especially now we seem to have come out the other end of another crisis.

Mo I know exactly what you mean I think maybe I am doing the same and thinking with good care and if I can do as much as I can for Pete that he will get better ......oh boy can I delude myself at times. Thank you and have a nice evening .

Elaine

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Ps had great advice and support from our nurses again , they have gave me the info on Petes setback and explained the many things I didnt understand.. Thank you so much. X

[Dandygal76]

Yes Elaine, when there is no crisis sleep and catch up and be grateful for that time. I have been night crawling since last week and tiredness is truly horrible around this. I hope you did get a good sleep. My mum said she woke up at 4am this morning and she was already crying before she woke up. That is awful.

As for the creon, we have stocked up over time and dad has his own stash but when they asked about what they were when they spotted it they did seem to understand what they are and not take them off him. It will be great when he can come home and I am glad it looks as though you will not miss the chemo. Enjoy the rest of the chemo break.

My mum has also turned into super cleaner / carer. Take time for yourselves always because it is exhausting. x

[Elaine123]

Another down day last night Pete got moved to another ward out of isolation with all day visiting well 1.30 To 8.30pm which was great. He got moved after visiting was over. I was real happy ay going up there for 1.30pm. And that was when the happiness ended. First off he had a rather long nose bleed yesterday which lasted for hours and his tshirt caught quite a lot of blood as he changed hankies all the time. Said his WBC and his neutrophils were back up again and he was now on oral antibiotics and tummy injections so he was in line for discharge soon. Thought when I went today he may get home, instead I asked a nurse where Pete was and was told he was back in isolation due to diarrhoea this morning and as they didn't know what was causing it they were keeping him in til Monday. I said I knew what was causing it they probably hadn't been giving him Creon again. She said what do you mean and I told her that he has to take that with food and drinks only to be told it was locked in his drug cupboard since he came in last night.. Then proceeded to tell me I don't have a key but will find someone who does. Then I goes into his room and he still has on yesterday's tshirt complete with encrusted blood. Got him changed and he said they had woke him up during the night as his blood pressure was low because of prolonged nose bleed. They had given him a large glass of milk also a milky coffee with loads of sugar but no Creon resulting in it going straight through him. Same this morning he couldn't face breakfast so a large glass of milk and a coffee same result. Proceeded to tidy up his table and locker top a multitude of paper cups and the measures that they had dispensed his pills ( but no Creon ) in. There were two bins in his room one for general waste and an orange lidded one for clinical waste. The black one had no bag in it and was open bottomed so unable to get rid of rubbish. The orange lidded one was so full of waste that the lid was raised and dressings hanging out. I again approached the desk to ask that bin be emptied as Pete doesn't have dressings therefore they must belong to previous occupant and they were not best pleased. Also asked for a bag to be put in black so that I could deposit Petes rubbish. I felt as though I could just pick him up and bring him home. I will phone and ask for a meeting with whoever is in charge of the ward tomorrow ....I just feel he is not getting care conducive to being discharged. Glad I have all that out my system. Home now have pyjamas on a vodka poured and the TVs on....shattered.

Elaine

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[Justamo]

Poor Pete. Poor you.

Perhaps our feelings are all a but heightened at times like this, but nurses can either be absolute angels, or people clearly in the wrong job and marking time till they win the lottery. It's the impression that some of them give you that they are omnipotent and you are a miserable peasant with no right to question anything. If you are the patient you can handle it, but when you see your loved one being neglected you snap straight into protective mode and you'll take anybody on - and win.

I've already had my say about creons this evening (Google tried to type creosote but I caught it in time) but I can't remember whose thread I was on. One of the symptoms of PC is having a partner with an addled brain.

Enjoy your drink Elaine and try to relax.

God bless, love Mo

[Quickasyoucan]

Oh Elaine poor you and Pete. I hope tomorrow is a brighter day for you and an up on the roller coaster. Thank you for thinking of dad on our thread. Luckily dad is being v well looked after in hospital except the creon drought!

You are doing v well being so strong and organised. My hat goes off to you. Take care and best wishes to Pete

[Veema]

You stand up for your man Elaine...you can do it in a polite but very firm manner...his treatment sounds shocking, sometimes the state if things astound me. I remember having to take blood from Nige's line when he was in hospital because the nurses weren't allowed to touch it and after stabbing him in various places still couldn't get any.

I hope he perks up soon and gets home.

I sent you a friend request on Facebook...have you seen it?

Vx

[Dandygal76]

Elaine, we have stashes of creon.. I am not a pharmacist but we all know it is not a medicine. I see you are friends with PW. Link up with me and I will get you some creon today by courier if this is not sorted and you have none spare. Or, repeat prescript at your GP first thing. The hospital is never allowed to take any of dads drugs, they are firmly hidden. We never give him anything outside of the hospital routine other than creon though but if we needed to, I probably would after telling them I am about to if they do not sort out the symptom (we have to say in case it reacts to other drugs). But I must say MK hospital are great and they seem to get creon. In fact they are just great. If your hospital is pants then you also do not have to stay there... I know that can be a logistical nightmare when they are ill but you have the choice to move if you can. Stay calm and polite and firm. They are more helpful with the nicest patients and family than the fraught and distraught. x

[Elaine123]

DG thank you for all your advice I now have a ziplock bag with me that has samples of everyone of Petes medication and a fair old stash of Creon. An added problem we have is Pete had a subrachanoid brain heammorage 18 years ago and his memory can be haphazard at times but even worse now so they really have to treat Creon as something that they have to constantly be aware that he takes. Locked in a cupboard is out of sight out of mind to him. His platelets were really low yesterday and they were going to transfuse him but by afternoon they were on the up again......this week has been a case of fix one problem and another pops up. Still onwards and upwards as they say today's a new day. Tank you for all your advice DG and I am constantly wishing your Dad all the best .

Elaine

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