Update.: Hi good people. I have been quiet for a... - CLL Support

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Update.

Jacksc06 profile image
68 Replies

Hi good people. I have been quiet for a while now as I have been in quite a dark place for the last few months. I think the deaths of my mother and stepfather coupled with my now ex partners infidelity finally ground me to a standstill and I didn't want to put my woes on you all. We are still waiting to cremate my stepfather due to legal wrangles ( He passed away on 27th December) so it is still a stressful time. That aside my latest counts are Haemoglobin - 141, White cell count - 5.9. Platelets - 202. But there has been a further dip in my GFR. Down to 50mL/min. I am seeing my haematologist in early may so will hopefully get some answers. Generally feeling OK but work is very tiring and i am struggling with aching joints. I have decided to apply for P.I.P again and If successfull would look at reducing my working hours. I don't hold up much hope as i have applied twice before and was awarded zero points on both occasion but we will see. Love and strength to all.

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Jacksc06 profile image
Jacksc06
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68 Replies
MsChief profile image
MsChief

You are very focused and brave jackson. You are doing well dealing with lifetime changes we all face as time goes on. Love, MsChief

Jacksc06 profile image
Jacksc06 in reply to MsChief

Thank you. Appreciated.

AnneHill profile image
AnneHill in reply to Jacksc06

Hi, you might find the benefits and work site helpful. I used it when I could no longer work due to pain. They give tips on how to fill in the forms. I realised that you are not talking to your doctor and you have to explain your ability to do the normal everyday tasks. Sorry you have had such a terrible time, Anne uk

Jacksc06 profile image
Jacksc06 in reply to AnneHill

Thank you Anne.

fapumpkin profile image
fapumpkin

Sorry to hear things have been so difficult. Have you thought of contacting C.A.B to get help with your PIP application? There is a charity created in memory of Kay Kendall who may also help with an application. I would consider having someone with you when you are interviewed to give you support. Good luck

Jacksc06 profile image
Jacksc06 in reply to fapumpkin

Thank you

fapumpkin profile image
fapumpkin in reply to Jacksc06

this is a link to The Kay Kendall Leukaemia Fund

kklf.org.uk

CycleWonder profile image
CycleWonder

Jacksc06 -

You have been dealing with a lot. On the scale of serious issues happening within a year, your score would be quite high. The death of parents, infidelity, the end of a relationship, and CLL are each in their own can result in a significant impact on your serenity and outlook on life.

If you have access to therapist, it might help you work your way through these life altering events. My therapist is an important part of my resilience. Not that you are not doing a good job of putting one foot in front of the other to keep moving; rather than it must be at a heavy cost.

Thank you for posting.

Don’t forget to lock your post!

Newdawn profile image
NewdawnAdministrator in reply to CycleWonder

eGFR is estimated glomerular filtration rate and relates to kidney function. Here are the levels;

About CKD stages ;

   eGFR>60CKD stages G1 and G2 

   eGFR 30-59CKD stage G3       

   eGFR<30CKD stages G4+G5         

I think a level below 1 must relate to something else CylcleWonder. Good advice incidentally 👍

Newdawn

CycleWonder profile image
CycleWonder in reply to Newdawn

Yes. I should have looked up GFR first!

Newdawn profile image
NewdawnAdministrator in reply to CycleWonder

No worries. So many acronyms! 🙄

Newdawn

Jacksc06 profile image
Jacksc06 in reply to CycleWonder

Many thanks.

Jacksc06 profile image
Jacksc06

Thank you.

Peggy4 profile image
Peggy4

Hope life picks up for you soon Jacks. Life def throws us some curve balls.

Peggy

Jacksc06 profile image
Jacksc06 in reply to Peggy4

Indeed. Thanks Peggy.

MickUK profile image
MickUK

Love and strength back to you Jack...

Appolonia11 profile image
Appolonia11

Sorry you’re feeling down. Give yourself some time and patience and I hope you feel better sooner than later…

Jacksc06 profile image
Jacksc06 in reply to Appolonia11

Thank you.

PaulaS profile image
PaulaSVolunteer

Thanks for the update, Jacks, but I'm so sorry to hear all you've been going through... and still are.. Far too many major traumas in such a short space of time...

Has your groin abscess finally healed?

I agree with fapumpkin 's suggestion of getting help from CAB (now called CAS - Citizens' Advice Service). They are very used to helping people with PIP forms.

Wishing you all the best,

Paula

Jacksc06 profile image
Jacksc06 in reply to PaulaS

Thanks Paula. I had a slight relapse with the abscess a while back but it seems to have abated now.

Pacificview profile image
Pacificview

Sorry about the tuff time you have had. They are never much fun. I pray clear blue skys for you and the strength to get to them.John

Jacksc06 profile image
Jacksc06 in reply to Pacificview

Thank you John.

LuzyCLL profile image
LuzyCLL

You are going through a lot! I wish you some relief from the pain and a nice friend to help you out. I don't understand how you can work, I sure couldn't, I hope you can work out a shorter work schedule.

Jacksc06 profile image
Jacksc06 in reply to LuzyCLL

Thank you Lucy. Yes work is tough as it's 8 hours of heavy lifting but needs must.

Fran57 profile image
Fran57

Sorry to hear you’ve been having a rough time .

I hope things start to feel easier soon.

Thanks for the update.

Look after yourself,

Fran 😉

Jacksc06 profile image
Jacksc06 in reply to Fran57

Thank you Fran.

Fowey2009 profile image
Fowey2009

So sorry to hear what has been going on. So good to have you back on the forum

Beryl

Jacksc06 profile image
Jacksc06 in reply to Fowey2009

Thanks Beryl

Cheshire2016 profile image
Cheshire2016

any of those life events would be difficult on their own, but to deal with all at the same time is awful. Regarding the PIP, do you have union membership, as they have many additional professional services ?

Jacksc06 profile image
Jacksc06 in reply to Cheshire2016

Thank you, I cancelled my union membership as the rep was next to useless in the past.

very profile image
very

Hi Jack's, sorry to hear you have been having a difficult time. Fingers crossed there is better times to come.

Jenny uk

Jacksc06 profile image
Jacksc06 in reply to very

Thank you Jenny.

Michaeljohn50 profile image
Michaeljohn50

Hi Jack, you have epitomised "strength in the face of adversity" over the last few years. There is no doubt that you will soldier on etc. It's the high cost in terms of physical emotional and intellectual energy that is so debilitating and comes across so very clearly in your post. I hope that sharing your pain can reduce it just a little as the members of this community send their empathy , love and resolve to you.

I continue to wish you all the best and hope that your circumstances improve, as you most certainly deserve. In the short term best of luck with the PIP.

Michael

Jacksc06 profile image
Jacksc06 in reply to Michaeljohn50

Thanks Michael.

Psmithuk profile image
Psmithuk

hi Jack, I just occasionally pop on here to catch up, and was so sorry to see that you are having a bad time. You did the right thing to tell the group, as no one else can understand the extra invisible burden we all carry. To have the extra distress added to that is really heavy going, but I know you will win through given time and support.

I’d certainly second the suggestion that you contact the CAB as they have a website with lots of information to help with filling these forms in (I used it to claim AA, still waiting 🤞).

If you can, do speak to your gp about feeling so bad, you may need a bit of temporary pharmaceutical help to see you through what has been a really challenging time.

Sending you love and support

Chrisxx

Jacksc06 profile image
Jacksc06 in reply to Psmithuk

Thanks Chris.

Floxxy profile image
Floxxy

I'm so sorry that you've had so much to put up with. I hope that things get so much better for you. Xx

Jacksc06 profile image
Jacksc06 in reply to Floxxy

Thank you.

terryI_uk profile image
terryI_uk

Good to hear from you again jack's, good luck with your pip application. Hope you are soon able to get your stepfather's funeral sorted and you can start to recover from the tough time you're having, God bless, Terry

Jacksc06 profile image
Jacksc06 in reply to terryI_uk

Thanks Terry.

Miggins60 profile image
Miggins60

sorry to hear this. Keep strong! 🤗

Jacksc06 profile image
Jacksc06 in reply to Miggins60

Many thanks.

jabee profile image
jabee

Sorry to hear you are going through such difficult times. I hope things improve for you soon and good luck with your PIP application.

Jacksc06 profile image
Jacksc06 in reply to jabee

Thank you.

CaptRon1976 profile image
CaptRon1976

Very glad you posted Jack. I have been thinking for weeks of putting up a query to the forum to see if anyone had heard from you.

Glad to here that the abscess is under control, may it stay that way.

Your losses and emotional trauma are and have been significant this past year for sure. A therapist would likely help.

A Mediterranean style diet ( less protein from animal sources ) and a good walk every day could help your kidney function. Continue to drink plenty of water.

I hope you can find a govt. assistance program that would make it possible for you to work less.

Ron

Jacksc06 profile image
Jacksc06 in reply to CaptRon1976

Thanks Ron.

Vlaminck profile image
Vlaminck

Glad you were able to poke your head out from that dark place to see a bit of light. Hope there will be more light for you.

Jacksc06 profile image
Jacksc06 in reply to Vlaminck

Many thanks.

spi3 profile image
spi3

When my life and myself was at my lowest and I knew I couldn't fix it myself- I prayed and put it in God's inbasket. He's doing great - I'm praying for you too.

Jacksc06 profile image
Jacksc06 in reply to spi3

Thank you.

Name-1 profile image
Name-1

🖤😍👍

Jacksc06 profile image
Jacksc06 in reply to Name-1

Thank you Olga.

GMa27 profile image
GMa27

Glad u reached out. You have been thru so much. Sending a huge hug & special prayers. 🙏💕

Jacksc06 profile image
Jacksc06 in reply to GMa27

Many thanks.

BeckyLUSA profile image
BeckyLUSA

So sorry you have been going through so much. Life can be cruel at times. Praying you are at the end of this series of bad events. Glad you reached out as I have been missing your updates.

Jacksc06 profile image
Jacksc06 in reply to BeckyLUSA

Thank you Becky.

I'm sorry to hear that you are having such an awful time. I wish you joy and strength.

benefitsandwork.co.uk/

The above link may be of use to you. 🤞

Jacksc06 profile image
Jacksc06 in reply to MistyMountainHop

Thank you.

Ghounds profile image
Ghounds

Good to hear from you and sorry things are so bad for you. They are for me too unfortunately.

Macmillan have benefit specialists who will apply on your behalf and hopefully you would get a successful outcome with them on your side.

I hope your stepfather's funeral can go ahead without much more delay.

Sending my warmest best wishes as always.

Jacksc06 profile image
Jacksc06 in reply to Ghounds

Thank you.

DoriZett profile image
DoriZett

Life really "dishes it out" at times. You are handling everything the best you are able so please be gentle with yourself. You are not alone.

Jacksc06 profile image
Jacksc06 in reply to DoriZett

It does indeed. Many thanks.

WinJ3 profile image
WinJ3

Sorry to hear about the passing of your mother, stepfather and other misfortunes Jack. I hope and pray there will be many blessings for you in the future 🙏🏽

Win

Jacksc06 profile image
Jacksc06 in reply to WinJ3

Thank you.

G1llHa1n profile image
G1llHa1n

Good to have you back. Sorry you have been going through this low patch and it's a positive move that you are beginning to be able to reach out again. You know that we are always here for you whenever or why ever. Looking forward to hearing from you.

Jacksc06 profile image
Jacksc06 in reply to G1llHa1n

Thank you.

CoachVera55 profile image
CoachVera55

So sorry for your troubles, that is alot may GOD give you the strength & favor to settle things down soon🙏🏾🙏🏾🙏🏾

Jacksc06 profile image
Jacksc06 in reply to CoachVera55

Many thanks.

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