Newly Diagnosed

[Dandygal76]

BTW - dad is back in hospital. 12 - 8 visiting and I called at 7am to say mum is coming earlier. We chatted and they said they need to bathe people and I said that is fine, what is the earliest time that suits you and they said 10am. If dad needed earlier then mum would have gone but right now, that time works for all... not sure about him though as no signal in the ward. So, please do not be constricted by visiting times at all. I will update with our visiting times tomorrow after I see him today. But it will be a discussion, mutual decision and / or what we decide is best for dad. I have not seen how this ward works but I was not overly impressed that the person looking after him on the night shift could not understand what I was saying and repeated the same thing about dad and did not answer my query. Go with your gut always. The hospital have been amazing so I am keeping an open mind and we are being respectful of just mum being there until proper visiting. xxx

[Dandygal76]

Elaine, I have super letters for everything that I can adapt to any situation. If you need that creon right where he can see it then I will write you a letter to give to the ward manager today. Very polite but I bet they change their stance when in writing and it will naturally escalate without complaint. Once in writing they should respond differently... they will think about your rights more. I am never rude but it will most likely work. x

[Elaine123]

DG you have too much to see to right now so I will take up your kind offer but only once your Dad is stable again. Could you mention that his previous medical history makes it very doubtful if he remembers to take it and may need prompted. Thank you so much. Have been thinking of every one of you all day

Elaine

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[Guest]

And we have been thinking of you and Pete. Never far from our thoughts. We old hands are always lurking about in the background, just in case xx

[Quickasyoucan]

How is Pete Elaine ?

[Elaine123]

Pete is still in hospital he was meant to get home yesterday but they decided he needed two blood transfusions. He was so disappointed. Every day he is scheduled for discharge and then another problem rears its ugly head. He just looks so ill and I feel I could just pick him up and bring him home.

The specialist nurse came to speak to us yesterday and she was saying that obviously it appears that Pete cannot cope with the chemotherapy regime he is on ( gem + Abraxane ) and they will need to review this and either reduce the dose or find another way . When she left the room I followed her out and told her that if they take Pete off chemotherapy altogether he will just lose all hope as he has put all his faith into this giving him some quality time she said she is very aware of this but the oncologist will need to weigh up the pros and cons. I don't know what to think any longer , all of a sudden I just seem to have hit a brick wall and no longer know what to do or where to turn. This is not like me Usually when one door closes I have complete confidence that another door will open. I just feel so tired constantly thinking and planning and being strong when I just want to crumple up into a ball. Sorry this post has become about me and not Pete that's so selfish.

Okay time to give myself a shake and get ready to go up the hospital and find out if we can remain still today or if another issue will crop up and have to be dealt with. Take care everyone

Elaine

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[Justamo]

It's not selfish at all Elaine. This section us for Family, Friends and Carers. We can't do anything to help Pete but we can offer support and love to you.

Let us know how things go today.

Love, Mo

[sandraW]

Oh Elaine, I feel for you so much, don't feel you are being selfish, its a lot to cope with, you just want to make it all better for Pete and unfortunately you can't, its all so very scary.

Lets hope when you get him back home, and he gets all the effects of the antibiotics and other medication they have pumped into him out of his system that he will start to feel a bit better. Lack of sleep in hospital is a major problem for a start, as well as lack of the proper nourishment that you will be able to give him when he comes home.

Obviously they can't carry on with that chemo regime if it is making Pete so poorly, but a reduction of the dose or even removing one of the drugs could be a good way forward.

I hope getting it off your chest has helped in some small way, as you say its best foot forward and carry on, unfortunately there is nothing more we can do than as Julia used to say "keep on keeping on"

Please remember we are all here and understand exactly how you feel, please let us know how Pete is doing, you take care too, love sandrax xx

[Dandygal76]

I don't mean this to be flippant... it is genuine experience. Our favourite saying in the family (the carers, not dad) throughout this has been 'suck it up buttercup'. Dry up the tears and yes, shake off the worries and onwards you march. And sometimes it is okay for it to be all about you. When they are diagnosed it changes everything for EVERYONE. Gather your thoughts, listen to the great advice about reduced dosage or perhaps every other week instead of 3 on and 1 off. Gently advocate Peter's wishes. I know people do not always agree with the way I approach things but write them a letter and express those wished clearly and ask them (if they say no) why no reduced dose / less treatment. And, ask for a written response. I always say it may be a no for very good clinical reasons but it will help you and it can make them react differently. When I update my thread you will see I am a gentle force they respond to. I am never rude but they do listen because I know the system and how to work it. If your head is not there Elaine then message me privately and I will do you a letter... It is not a problem and it wil take me 30 mins. I just need DOB, NI etc that I cannot get without you letting me know. It is important for your mind to know you are heard, even if you do not get the answer you want. x

[WifeampMum]

Elaine, you are doing all you can at the moment...being with Pete, standing up for him, querying things that don't seem right.

In terms of planning, others here may feel differently but I think at the moment you can only go with the flow until Pete's condition stabilises. As Sandra says, there are probably still options with chemo and this doesn't have to be decided immediately.

You are doing an amazing job and you are stronger than you think. I find that taking things hour by hour, day by day can help a lot when I'm in a very scary and highly charged situation. If I think too far ahead it's overwhelming.

Thinking of you and hoping today is a better day for Pete and of course, you.

Love

W&M xx

[Elaine123]

Feeling in control this morning.....Pete came home yesterday after we sat for six hours while one consultant and a procession of senior nurses and physios came trooping by , all with different opinions ....you are going home Peter ...next one ,I don't think you are going home today Peter. And this went on and on for hours. About four o'clock I blew up and demanded that someone make a decision and it took until I said I wanted to speak to the consultant who then came to the ward and said yes you are going home Peter and should have been gone hours ago. I think we got caught up in a power struggle by three controlling personalities of nurses and who suffered ......Pete.

He was so desperate to get away that I got him home then went back to the hospital at the allotted time I was told to collect his medication as the pharmacy would gave it ready for 5pm......I should have known better and was sent out to the corridor to wait til they brought it out to me .....half an hour later a nurse came up and handed me two bags of medication and his discharge form and a white envelope that we had to take with us whenever Pete was admitted to hospital. Got home to thankfully find Pete still fast asleep. Once sorted out his pills I opened the white envelope and the first words that jumped out at me was Breast Cancer and I immediately thought what a mistake to make then realised it was another patients DNAR form so will have to take this back to ward today.. However enough of my moaning Pete has got his appetite back and I feel as though I have won the lottery. Every time I mention food I hold my breath waiting on him saying I am not hungry but so far so good.. Some days are diamonds some days are stones is Petes favourite Glenn campbell song and it certainly sums up life with PC. Hoping everyone here are also having a diamond day.

Elaine

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[Dandygal76]

I am so glad he is home hun and eating! It like a rollover lottery win!

You make sure you enjoy this day... every blinking second of it.

xxx

[WifeampMum]

Terrific news Elaine - I hope today is a bright and shiny diamond for you and Pete.

xx

[sandraW]

Elaine that's great news as Dandy says enjoy it.

Great to hear he is feeling like eating again too.

It totally unacceptable that they gave you the wrong paperwork, it all just seems to be getting worse.

I hope you enjoy another diamond day today and that there is a long necklace of diamond days to follow.love sandrax xx

[Guest]

Hi Elaine,

A Glen Campbell fan? I have happy memories of a boyfriend with an MG and a 8 track playing Honey Come Back, Gentle on My Mind, The Everyday Housewife et al. I've had a soft spot for Glen ever since.

Super to have Pete home. We are incredibly grateful for small things because in PC world they are huge. Enjoy!

Much love, M xx

[Elaine123]

HELP please. Pete has been home two days and everything was going great but tonight I have just noticed that his feet are very swollen and a bit discoloured and I am really worried about this .....he is trying to play it down as I think he is so worried that he will be admitted to hospital again after his experiences the last ten days. Could anyone give me advise about this or tell me if there is anything I can do to relieve it. Had a feeling the past two had to end at some point.

Elaine

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[Quickasyoucan]

Hi Elaine just quickly Dad has lymphedema ie legs and feet swelling which can be a symptom of cancer. However he has also had cellulitis which causes red rashy type swelling. Youd be best advised to ring the chemo people who presumably have a 24 hour line. Mild lymphedema is not an emergency but cellulitis needs urgent antibiotics. Only a medical person can tell you what's what. Also try getting him to put his feet up ideally higher than his heart when in bed say on a pillow to assist drainage.

Edited February 3, 2017 by Quickasyoucan

[Guest]

Ok, swelling of legs is fairly common in cancers. Lots of posts on here in various threads. If they are also red and painful or only in one leg it could be a clot which are more common in PC patients but more commonly it is a form of asites where fluid leaks into the the stomach and or legs. This can be helped by wearing only loose socks and by the patient stretching calves, ankles and feet regularly while sitting, walking a little and not standing for too long. Stretching and moving the legs as in short walks at regular intervals helps move and reabsorb the fluid. Don't use compression socks! We got my mums legs down just by getting her up and walking round the house and garden every half hour and ankle turning every 15 minutes, the rest of the time we put her legs up. Maybe he has been sitting a bit too o long. Do they go down at night?

Report it to your GP, or medical team. If you are concerned phone his GP, out of hours, nurses on here or his hospital team. Or your local hospice...

M xxx

[Elaine123]

Sunday ...Day of rest

-----------------------------

Everywhere except the Brown household . Pete woke at three am and put his lamp on to go to the loo and wakened me to tell me this. He went back to bed for an hour then got up to go through and lie on the sofa wakening me to tell me this .That lasted for an hour then back he comes through to bed and proceeded to arrange the duvet the majority of it over at his side. He gets into bed and I said " Pete it is five o clock " meaning try and get to sleep it too early. Next minute he is sitting upright telling me to get up as we were going to miss The Chase on tv. ( a daily ritual at 5pm ) .finally gave in and got up at seven am and made coffee Pete finishes his coffee and says " Think I will just have an hour on the sofa cause I was up quite a bit during the night" when I said tell me about it he had the cheek to say did you have a disturbed night too. Arrggh. The joys of PC. He is now sleeping like a baby and I am wide awake. He will want to sleep all day now lol. Thanks Marmalade I took your advice about his swollen feet and he sat with them elevated then walked about and then raised them again and that seemed to help as they have gone down a bit , will talk to the nurse tomorrow. I hope everyone has a nice relaxing Sunday I know Pete will.

Elaine

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[Veema]

Elaine, definitely mention the swelling, even if it goes down. Nige had really badly swollen legs and ankles and a huge abdominal ascites...it was caused by the cancer in the liver and on the lining of his abdomen...it can be something to do with the liver not being able to do its job properly.

They are terrible for keeping us up all night and them being able to sleep all day...I spent many a day zombified from Nige's nighttime moaning and groaning, tossing and turning...hope you get a better sleep tonight.

Vx

[Proud Wife]

Hi Elaine

Sorry to hear you're not getting much sleep at night. Can you not try having a power nap during the day? You need your sleep too honey! xx

[Guest]

Oh good! So pleased it helped. You have to be rigorous with the ankle turning and walking but it does seem to work...

Sleeping. Far be it from me to interfere in your domestic arrangements but I think you will have to make a sanctuary in another room if only to allow you to have some rest when he is restless or awake because he has been sleeping all day. Get a baby monitor that you can use in case he needs help. I had one I could walk about with. Louis like to watch TV in the night which was fine if I could sleep somewhere else!

I wish you a peaceful night tonight xx

[Elaine123]

Hi everyone it was clinic day and Petes first since coming out of hospital after the sepsis .....he was agitated all day before we left for the hospital. I think that he thought they may stop the chemo after his reaction last time.....however they have said they will reduce the dosage on both the Abraxane and Gemcitibine and monitor him and if he has another bad reaction they will have to withdraw the chemo and talk about where they go from here. He is really so happy the chemo continues so fingers crossed. They are also going to put a course of steroids in the chemo to boost his motivation. Fingers crossed for tomorrow

Elaine

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[Veema]

Everything crossed Elaine...

Vx

[Justamo]

Fingers crossed, paws crossed, rosaries jangling . . . .