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

Re: Ascites

Postby Veema » Mon Sep 12, 2016 9:20 pm

So...

Appointment was cancelled. Some mix up because we went a couple of weeks ago, they cancelled todays but didn't tell us. Thankfully the hospice nurse contacted the hospital because she noticed that he wasn't on the list for today's clinic. They then phoned to arrange another appointment and told us the earliest he could be seen is next week...I played merry hell on the phone and we are now being seen tomorrow. I am fuming. The oncologist we've seen the past two appointments has now left (that's our 3rd oncologist to date), so we are seeing someone new again. The hospice nurse also said that the scan had not been reported on, or discussed at the MDT on Friday as we had been promised. It's a complete shambles.

Anyway, he had a major meltdown, phoned school and told them to tell me to come home immediately, which I did thinking something terrible had happened, it's knocked him for six again, just when we seemed to be making a little bit of progress. The clinical nurse specialist thinks they will admit him tomorrow, which I think he is pleased about as he just wants something sorted with his belly...his leg has swollen up now as well, so it seems like it's definitely fluid.

You know, up until these past 3 months we've had the most fantastic care from our hospital team...no issues whatsoever, but it's just gone down hill since June and it's not fair when someone's life is on the line. Our actual oncologist has been on maternity since January, her registrar then left and they've had locums since then who just up and leave when something better comes along. I'm now keeping a diary of everything that happens.

So, we wait another day. We've been promised that they will have the scan results tomorrow. I will not be holding my breath.

On a positive note, he's agreed to have the bed, so this weekend I'll be getting the spare room sorted for him (he won't have it in our room), so I'm going to create him a nice, calm, soothing sanctuary.

Thanks for the messages of support.

Vx

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

Re: Ascites

Postby Dandygal76 » Mon Sep 12, 2016 9:32 pm

Veema, I would suggest you get some e-mail addresses and write to them all the time. When there is a carefully worded e-mail and a trail of what is happening they have to respond or they are out on a limb. I am learning to write and document everything. Even to the point now that I follow up any meeting with the NHS with a summary of what was discussed and agreed. I am finding the strategy successful but I know that I am dogmatic... if you want to then get my e-mail from the PC nurses I will be more than happy to help you do this. Absolutely everything concerning my dad is in writing now and there is no wriggle room for anyone. I am always polite but I treat it on a professional level like I do with work.

It is disgraceful you do not have the scan results, we all know it is the worse time.

Loving the sanctuary... perhaps a man pad of some sorts. x

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

Re: Ascites

Postby Veema » Mon Sep 12, 2016 9:48 pm

Thank you...but I am an expert at writing to people and keeping track of stuff...we had to do it with my mum when she was ill.

I am also going to ask to be copied in on all clinic letters etc.

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

Re: Ascites

Postby Dandygal76 » Mon Sep 12, 2016 9:51 pm

It is a shame we have to do it though isn't it? I hope you both have a peaceful night and you can always get my e-mail address for anything you need anyway. x

Marmalade

Re: Ascites

Postby Marmalade » Tue Sep 13, 2016 12:18 pm

Dearest Veema,

So sorry to hear all this. I know you have everyone giving you advice so I won't. If you want to talk about things we learned in organising Louis room just mail me. I'm going to write some tips one day but I struggle with writing at the moment.

I agree that sometimes you need a dynamic event (hospital admission or similar) to bring about solutions. It's a disgrace but its what we have to work with. I think you did great to get the appointment for today and wish you strength to keep them on their toes.

Much love M xx

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

Re: Ascites

Postby Proud Wife » Tue Sep 13, 2016 12:38 pm

I'm so so sorry you are being treated this badly V. You are going through enough without them making it harder for you. I hope and pray you get results today and they are what you want to hear.

Thinking of you xx

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

Re: Ascites

Postby Veema » Tue Sep 13, 2016 1:20 pm

About to go...feel sick.

Will post later.

Vx

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

Re: Ascites

Postby Dandygal76 » Tue Sep 13, 2016 1:26 pm

I have everything crossed for you both. We are all right here for you. x

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

Re: Ascites

Postby Proud Wife » Tue Sep 13, 2016 3:09 pm

Fingers, toes and everything else crossed for you as well. I so so so hope its good news. xx

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

Re: Ascites

Postby Veema » Tue Sep 13, 2016 4:58 pm

Well...it's spread. Not really unexpected, but still gutted.

It's now in the liver and the membrane that holds all the organs in place...can't remember what they called it...it's also worse in the lungs and the lymph node tumours are bigger.

He's booked in for the fluid draining on Thursday, which may take a few days, he's been warned that he may feel worse after this as it takes all the salts and minerals out of the body. Then, if we can get him back to some sort of decent health, they will still give him chemo. I don't really believe this will happen, he seems to have gone beyond that.

The clinical nurse specialist was really weird...she kept staring at my eyes...perhaps she expected me to cry, but I've not cried in front of them yet and don't intend to start now. I'll cry in the shower, which is where I tend to do most of my crying. I remember back when my daughter was having problems with her heart and we were waiting for her surgery, I used to cry in the shower every morning, then get out, put my make up on and get on with the day, like it was my mask. I think I must have been a right bad bugger in a past life as I've had quite a bit of trauma over the past 10 years!

Anyway...whilst he's in hospital, I'll get his room sorted and then he's somewhere nice to go when he comes home.

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

Re: Ascites

Postby Dandygal76 » Tue Sep 13, 2016 5:31 pm

Veema, I am so sorry to hear your news. You never know when they drain the fluid he may perk up enough and so hold onto that hope for now. Much love to you all. x

Marmalade

Re: Ascites

Postby Marmalade » Tue Sep 13, 2016 6:10 pm

Darling Veema,

You are doing a great job. I had the same trouble with people as you are having with the specialist nurse, I started to think I was not grieving properly as they clearly expected me to behave differently to the way I did. If the shower works for you then the shower it is.

I'm sorry they are so negative about the fluid draining, I have a neighbour who has it done every few weeks and feels heaps better afterwards. I'm sure that he could have some salt and mineral replacement like those Dioralite sachets you have when you can't eat. The blackcurrant is quite palatable. I also understand that there is now a subcutaneous pump which means you don't have to go to hospital for draining and you pee it out in the normal way although not available on the NHS. Sometimes, charities or former employers will help with costs.I think you can also have it if on a trial. http://www.cancerresearchuk.org/about-c ... in-abdomen.

I know you are going to make his room lovely, of course you are, and have probably thought of all this. It's hard to keep bedding on a hospital bed but pretty covers are ok and I found with my Dad that fitted sheets are also ok. The bigger the room the better as you can then get in a z bed or really comfy chair in case you want to rest with him sometimes, room for radio and TV for days when he wants to rest up and in our case, we chose one where Louis had his own loo and shower very close by. I hid everything medical in a wardrobe or another room and just got it when required. I think you are so right to organise this now while he can have a say, it's not fair to shunt them around when they are very ill, they need to get used to changes and not associate the room with pain and upset. You are doing all the right things, planning for bad days and hoping for good ones. You are not "giving up", you are thinking ahead to make life as comfortable as possible for you both and keeping busy. What else can you do?

I will be thinking of you every time I have a shower and probably crying with you M xx

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

Re: Ascites

Postby Veema » Tue Sep 13, 2016 9:37 pm

Thanks for that link Marmalade...if it becomes a regular occurrence I will definitely ask about it...we can pay for it doing, so that's not a problem. One thing we have got out of all of this is plenty of money as he is very well insured, but I'd rather be living in a shed to be honest and not have to go through this.

We have been lucky really to get this far without him being poorly, many don't get the two years we've had.

Going to wallow for a while and then pull myself together and get on with it. Thanks for you kind words, they really do help.

Vx

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

Re: Ascites

Postby Dandygal76 » Wed Sep 14, 2016 8:50 am

I would gladly join you in that shed Veema if it would hep your hubby and my dad.. I know exactly what you mean.

You are entitled to wallow for a while but then yes, we all have to suck it up and make the best of it that we can... however crap it can be.

I hope they sort out the fluids and that he gets the chance of further chemo.

Much love

DG x

Marmalade

Re: Ascites

Postby Marmalade » Wed Sep 14, 2016 10:06 am

Me too Veema, Bad day yesterday and have been weeping on and off for 36 hours! Just came over me, a man in the pharmacy gave me a hug but it's not the same, I wanted a hug from Louis. Just like you I will stop wallowing and pull myself together because its too exhausting to keep it up and we can't live in the shower!

Another day, and I hope that like me you are feeling slightly less jaded and Nige is a little more comfortable.

Thinking of you xx