SCT Late May

Great to hear from you, Mark!

its tough but you’re still taking three steps forward for every two back! 

Little steps, you’ll get there.....

hugs xxx

Good morning everyone.

Just a little update on my progress. Its been two and a half weeks since i was discharged, although being home was lovely i found the first few days very hard emotionally and very fatigued. However as each day goes by i feel very slightly stronger. I am trying to walk a little every day and managed half a mile so far.I am eating quite well but not really enjoying much and have managed to put a pound on.All my bloods are ok except for my HB which is 90 but according to my doctor quite normal due to the drugs I am on.

Its day+50 today so on the countdown to+100.

I applied for PIP in March but was turned down,they asessed when I was feeling quite well before transplant which seems a bit crazy. I have someone appealing for me and will know if succesful in about a week 

Have a lovely weekend folks

Mark 

Good to hear from you Mark.

Yes, the initial 'my security blanket is gone' feeling once you get out of the unit does take time to overcome - it is an emotional time so little steps.

Well done putting some weight on and doing some walks - this does help a lot.

PIP is a very difficult and complicated system. It is normal to get turned down on the first hurdle but good that an appeal has been put in you and lets hope you get the 12 points awarded.

Keep posting and enjoy the weekend....... and the freedom.

Good to hear from you, Mark and so pleased to hear about your progress. Early days, but it's all going in the right direction.  Little steps enable you to cover a huge distance, in the end. 

I am sorry - and annoyed - to hear you were not awarded PIP.  I am glad you have an appeal in progress.  80% of PIP decisions are overturned on appeal. If it's not successful, apply again immediately and get Macmillan or CAB to help you with the form. 

It shouldn't be that way, but how you fill in the form makes all the difference.  I used to work for CAB and have done many a PIP application and appeal in my time.  I get enhanced Care and Mobility PIP AND just on the strength of the paperwork without any medical assessment - and you and I aren't so different.  I no longer work for CAB, but if I can assist in any way, do please PM me. 

Keep on keeping on and enjoy the sunshine!

Kindest regards

Sheri 

Hi Mark,

if PIP is needed and so often it is after a major procedure like a SCT, then if it isn’t awarded then it should be, and I hope your appeal goes your way.

hugs xxx

Good afternoon folks.

A;little update on my progress,my first bone marrow biopsy shows I am 100% donor which I think is good news ! I am feeling a little stronger most days and managing a nice walk most days,eating ok though feeling a bit sicky off and on.

Its day + 60  tomorrow and I am having my second biopsy,fingers crossed.

I have not heard from PIP but have had a payment of £318 into my account so it looks as if I will be having some help. 

They refused my first claim whilst i was in hospital, so my wife contacted someone from Macmillan or Tenovus who is handling it for us,I think he was putting an emergency claim in first and then trying to get it back dated to when i originally claimed which was mid March. I will keep you posted.Thanks for the offer of help Sheri x

Mark 

This is all great news, Mark!  

The sickiness lasted a while for me, too.  Sometimes it came completely out of the blue, after days of nothing at all - but it gradually faded. 

You should get a breakdown from the DWP of what they are awarding, in respect of PIP.  Since we have been through very similar experiences, there seems to me to be no obvious reason why you should not be awarded Enhanced Care and Mobility.  To my reasoning, anyone who experiences blood cancer + SCT should get both.  

If you discover that one or both is not at th Enhanced rate, you may wish to take advice on whether to Appeal that decision.  If you have Enhanced Mobility, you can get a Blue Badge and are eligible for a Motorbility car.  For me, being immuno-compromised and unable to get out under normal circumstances, they have been really valuable. 

All best wishes

Sheri 

There is also an excellent organisation called Turn2Us, which provides links to organisations that offer grants for people in various circumstances, including recovering from cancer.  Many, though by no means all, are occupation-related.  

This may be useful for you too https://grants-search.turn2us.org.uk/

Sheri 

Hi everyone. 

Just a little update on my progress. I am feeling ok on the whole ,still quite nauseous and having to rush to the loo in the morning ,

They changed my anti sickness tablets which have improved things a lot and I am eating almost normally again.Going for a gentle walk some days but also still needing an afternoon nap some days as well. Its 12 weeks today since my transplant so hopefully they will reduce my cyclosporin soon. 3 monthly bone marrow biopsy on Monday. So far no GVHD ,not really sure if this is a good sign or not as I know things may change when I am weaned off the tablets.

Sheri my PIP was the enhanced rate on daily living and mobility which is good news. 

Have a good weekend folks

Mark

Hi Mark

Excellent news about PIP.  It's what anyone going through SCT should get, but it doesn't always happen. 

With enhanced mobility you are entitled to a Blue Badge and a Motorbility car.  I have found both life savers.

Very good to hear the news that you are doing so well.  Keep on keeping on! 

Best wishes

Sheri