A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: A New Chapter

Postby RLF » Sun Mar 30, 2014 9:48 pm

Sorry to hear you're having a tough time Sarah, I do get the breaking point as I know there are times I have felt so close to just saying "that's it" and stopping my path. Your priorities are your choice, if you want to put your mum at top of your priority list then that is up to you, but sadly you will burn out and other people will suffer from it. In a way I'm lucky I have nobody else than Carl to worry about as everyone else I love it so far away I can just get on with it. You have a much trickier balance to find, but as you say you do need to keep those Dr on course as it seems without someone ...well, nagging them, they tend to forget a lot. Take some time and recharge, see how you feel. Something I've learnt is that there is no right or wrong, you do what you need to. Hope you feel better soon!
Rob
x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Mon Apr 07, 2014 6:18 pm

Have just made the decision to use the sick note the doc gave me last time I saw him. At the time felt I couldn't do that to my boss, but a week on I've given in.

Mum is pleased. I haven't been properly well for 8-10 weeks and have just had a chest x-ray for a persistent cough (had a Bupa lifescan in Jan so not fretting bout anything really nasty), but also very very tired mentally.

I know it's the right thing to do.

Mum, by contrast is doing better every day. Nausea is mainly gone, she's looking forward to eating again, I think she's putting on weight and pain is well controlled. She's sold a property recently that will give her a financial cushion to spend on "what the hell" things and practical things without having to worry, but right now hates the urgency she feels about going places and doing stuff "before it's too late".

Have told her that cocooning at home, if she wants to, is exactly what she should do. On the other hand if she fancies a trip to see my sis, we can book a fab hotel without thinking about it and I'll drive her. She's still not quite believing that everyone will back fill the chores at home if she wants to disappear off at the drop of a hat, but that's many years of being prime organiser for you. Think she doesn't feel a holiday is a holiday unless she's been stressed for a week and got up ant 4am to pack!

A few "probably the last time I'll..." things cropping up, but at the same time we're planning another trip to London to see oncology wunderkind and find out if he has any trials in the offing she can take advantage of. Something without chemo involved would be fab!

Also going to touch base with the good prof as her liver mets are very treatable as is her primary if the cyst has resolved (pain levels suggest it could be getting less).

Right now tho, being mucked about with is at the bottom of her to do list and I'm on board with that.

Love to all,

Sarah
XXX

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: A New Chapter

Postby Didge » Mon Apr 07, 2014 6:57 pm

Am glad you're managing to take time out and that it looks like some pleasant times are ahead if your mum fancies it.
Didge x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: A New Chapter

Postby Cathy » Mon Apr 07, 2014 7:43 pm

Glad to see you are taking time out Sarah. I worked full time all last year after Jonanthans diagnosis in Dec 2012 without a day off sick until it all got too much in mid Dec and, wow, what a huge weight was lifted from my shoulders not having to stress when I did. Deffo the right thing to do, for both of us.

Great your Mum is feeling better. I hope that she will do what she wants to do and not what she feels like she should. From experience I would say those "could be the last time" moments are hard to ignore but, you know, I am glad I/we had them as I think it focussed us on relishing every moment even tho the majority of those could be the last time moments weren't. Those moments are hard to forget. I think a good rule of thumb for all of us as no-one knows what is around the corner?

All the v best going forward and remember that offer to meet if you head down into my neck of the woods.

Cathy xxxx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: A New Chapter

Postby J_T » Mon Apr 07, 2014 9:08 pm

Yes Sarah, what Cathy said :)

I know you've been working hard on the petitions too! Glad you're taking advantage of the sick note, you need to recharge a bit.

Glad to hear your mum is feeling a lot better, long may that be so.

Julia x

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: A New Chapter

Postby EmmaR » Mon Apr 07, 2014 11:39 pm

Sarah ,
Please take time off ! take rest ! you've earned it and feel happy that you mum feels so good and positive at the moment .
Emma x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Wed Apr 09, 2014 9:06 am

Thanks lovely ladies. The petition reaching the target gave both of us a big boost, but think I'm going to put a lid on stuff for a while and chill out with her.

XXX

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: A New Chapter

Postby Slewis7313 » Wed Apr 09, 2014 10:29 am

You must be frazzled out with everything youv've been doing since your Mum was diagnosed. It's great to hear that you can take it easy for a while and enjoy some time with your Mum. Also great to hear she is doing well att the moment.

Take care (both)

Steve
X

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: A New Chapter

Postby nikkis » Thu Apr 10, 2014 2:52 pm

So glad to hear your Mum feels so well Sarah. I have just agreed with my employers that I am going to take a year career break (they have been fab), so don't feel guilty about taking a bit of time off yourself, this is exhausting. Hope the Wunderkind can come up with something good,
Take care,
Nikki

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: A New Chapter

Postby InfoForMum » Wed Apr 16, 2014 11:48 am

Not such a good time. Mum's in hospital with an infection I think is linked to her stent. She was shivering uncontrollably, throwing up constantly and high temp. Ambulance in and IV fluids and antibiotics overnight. Low liver pain on palpation & bloods, x-ray done. More vomiting overnight, was bile-like, but now also some fresh blood. No-one will speak to us! Dunno what's been found and what's planned.

Sis is here and very greatful for that as I'm poorly with cough that's bin around for six weeks. My bloods/x-ray were OK, but spiked a 39.8 temp last night.

Horridness :-(

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: A New Chapter

Postby sandraW » Wed Apr 16, 2014 3:23 pm

Hi Sarah,
Sorry to hear both you and your Mum are not too good, glad you have your sister there to help look after you both, thinking of you take care sandrax

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: A New Chapter

Postby J_T » Wed Apr 16, 2014 7:11 pm

Sorry to hear of your mum's infection Sarah, they are a bugger those infections! Hope they get back with battle plan pretty sharpish.

Good that you have your sister around when you're not feeling top jolly yourself.

Get well soon!

Julia x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: A New Chapter

Postby Slewis7313 » Wed Apr 16, 2014 9:07 pm

Thinking about you both Sarah and hope things pick up for the weekend.

Take care

Steve
X

belgrade
Posts: 157
Joined: Fri Jul 05, 2013 11:53 pm

Re: A New Chapter

Postby belgrade » Thu Apr 17, 2014 1:30 pm

Thinking about you and your Mum and hope things will improve for you both.

Hilary x

MSH
Posts: 228
Joined: Tue Apr 30, 2013 11:03 pm

Re: A New Chapter

Postby MSH » Thu Apr 17, 2014 11:13 pm

Hoping you and your Mum are on the road to recovery very soon.