General discussion

1234annie

Chemo yuck and PIP

Hi All,
I'm a week past my 2nd folfiri and I still feel like poo!! The nausea is still lingering dispite omdamsatron. It feels like my body is taking a right battering this time, more than folfox for some reason although not having neuropathy is much better. I can do very little which is frustrating given it's half term.
Also had a massive go at DWP today. They said I need an interview at home but they have no one to do it so I'd have to wait till there was!! Omg... I went mental, in the end I contacted my local MP who rang them to ask wtf was going on!! Plus an e-mail to Amber Rudd!!
It's absolutely disgrace what we have to go though. I suggest to the DWP and Amber that they book a training session at our local chemo wards so they can educate themselves!!
The long and short was someone with an ounce of common sense decided they can make a paper based review and I'll hear in 5 days. I also contacted James OBrian from LBC so I hope he highlights it too.
Wa*kers!!
Lots of love Annie :x: :x:

1234annie
Quote from @jamtart:
@1234annie other Half found Irinotecan much tougher than oxaliplatin, he managed 3 out of 4 treatments and for him it had no real effect on his tumour. πŸ˜•
And well done on given DWP a broadside, we can be too nice sometimes.

Totally rubbish that it did nothing to the tumor :( That is the worry that you put your body though it for little or no results. I can only hope and pray. :x:

Baxter2

@1234annie

I tried to attach an update on the Marie Curie petition delivered to Downing St. Yesterday but being a dinosaur, I've been unable to do it! I'll keep trying!

Karen πŸ’›πŸ’œπŸ’™β€οΈπŸ’š

1234annie
Quote from @Baxter2:
@1234annie

I tried to attach an update on the Marie Curie petition delivered to Downing St. Yesterday but being a dinosaur, I've been unable to do it! I'll keep trying!

Karen πŸ’›πŸ’œπŸ’™β€οΈπŸ’š

I've signed it Karen from your last share❀!! I got an email about it too to say it's going to parliament. I sent the email to my MP and said get behind this please, because he asked what else could he do. So thank u v much for that :x: :x: :x: :x:

Baxter2

That's great @1234annie

Sounds like a good time to raise your concerns!

Good luck and lots of love

Karen πŸ’œπŸ’šπŸ’™β€οΈπŸ’›

Polly 1

Oh well done @1234annie
It's not like we make these things up is it. There is plenty of evidence on what people go through with these treatments without having to actually sit in front of you!
My husband has had two of these assessments now and they are so stressful. If they are short staffed even more reason to accept an Oncology letter etc to prove it - you shouldn't have to wait.
They need to have a rethink on how they treat cancer patients on treatment!
:x:

Gypsy

Loads of love for all of this @1234annie . You are some woman- you have all my admiration. :x::x:

1234annie

**PIP update**
Had a call from my MPs office this morning to say I didn't need an interview, it has been awarded based on what I sent and at the higher rate!! 😊 This is a huge weight off my mind. Thank you @Gypsy @Polly 1 @jamtart @cyclingjohnny @Clancy @jj @Baxter2
😘😘😘 Annie :x:

bettebette

That’s good news @1234annie. Well done you :x::x:

Polly 1

Great news @1234annie - like you say a huge weight off your mind and well done your MP!

Baxter2

Oh wow! Fantastic news @1234annie

I'm so delighted for you and hope others will follow your example too and be awarded this!

Lots of love

Karen πŸ’šπŸ’›πŸ’œπŸ’™β€οΈ

Lirio345

Terrific news @1234annie, I am so pleased for you and very impressed by your tenacity. I will never cross you!!! Take very good care, Kim :x::x:

1234annie

Thank you lovelies, just hope I crack my cancer too with the same attitude!! X x
I said they were more than welcome into my home but not the week after chemo as I can't get out of bed and don't send anyone with a cough or cold otherwise I'll end up in hospital. Think that put the willies up them!! I also said I didn't believe a medical professional had actually looked at my from and decided I needed an interview which is what they first told me.
And miraculously I didn't!! Hope this helps anyone having trouble.

Clancy

Brilliant @1234annie, they had to award it, simply because your circumstances have changed dramatically. Good for you.:x::x:

helena

@annie1234 - I'm so glad that you had the ooomph to e-mail Amber Rudd and your local MP and its good that the DWP have reviewed their decision. As if its not bad enough to be going through cancer it's totally demeaning and demoralising to also be dealing with government departments that appear to not give a jot. Well done you! :x::x:

belinda66
Quote from @1234annie:
**PIP update**
Had a call from my MPs office this morning to say I didn't need an interview, it has been awarded based on what I sent and at the higher rate!! 😊 This is a huge weight off my mind. Thank you @Gypsy @Polly 1 @jamtart @cyclingjohnny @Clancy @jj @Baxter2
😘😘😘 Annie

@1234annie

So glad you got the PIP and at the higher rate - encourages me to go on. It's bad enough having a serious disease without all this hassle with bureaucracy.

Seashells

Well done you @1234annie I'm so pleased you managed to direct your anger to achieve a positive result. We shouldn't have to, of course, but sometimes speaking out when something is wrong is our only option. :x:

GD62

Hello @1234annie

Well done getting your PIP sorted, I too had to write to my MP after making an appeal and waited three months without hearing anything.

Hugs :x::x::x:

Lizalou

Well done @1234annie . So frustrating that is caused so much stress. :x::x:

1234annie
Quote from @GD62:
Hello @1234annie

Well done getting your PIP sorted, I too had to write to my MP after making an appeal and waited three months without hearing anything.

Hugs

Good on you!! You can make a formal written complaint too. :x:

jj

Hey @1234annie way to go! With this kind of strength, your cancer too will be scared of you and leave you in peace. Hope you get better with the chemo, maybe after the chemo, you give it a piece of your mind.
And you are right, the DWP should have a special person/s dedicated to attending to cancer patients. And it will be an eye opener if these law makers would take time to shadow cancer patients. They would soon have it sorted out.
All the very best and hoping and praying that all will work out well for you.
Regards
Jane