Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Unbelievable

Kym66
Posted by

Last few weeks have been sh**y  but very excited about going 2 c my manager about returning to work I knew I had to reduce my hours for a while was looking forward to getting back to a bit of normal life 

How stupid was I 

Manager informs me I have 2 have a occupational therapist assessment and  have to move departments I was horrified  she did say not 100% but due to having lost of top left arm movement she thing it will not b safe to work in the pfs (petrol station) .I couldn't believe what I was hearing  I've spent the last year battling cancer with the thought of going back to work and now I find myself fighting 4 my job 

Kym xx

Kym xx 

daloni
Posted by

Jeez . You couldn’t make it up. I am so sorry you have this new battle on your hands. Please call the Macmillan helpline and ask to speak to one of their financial experts. 
xx

tvman
Posted by

Aw Kym

Sounds totally ridiculous. I'm sure MacMillan must have someone qualified to give you info on the legal aspects of what a company is or isn't allowed to do. Also if the company is large enough like the size of one of the major players in that field then there should be a shop steward able to help you. 

Don't let the assessment worry you. If you think it's going to be too much for you, ask for someone to take up the fight on your behalf. You must feel like life is so unfair when you are looking forward to getting back to work and then something else is lobbed into the mix.

I hope you have a good result and keep us informed so we can support you.

Here's me thinking that I would come to my daughter's and get a break from the pain but no chance!  It's 3 in the morning and I'm going to get back to sleep now, maybe the next time I wake up it'll be because an excited 3 year old grandson is bouncing on top of me, grinning from ear to ear , shouting "Get up and come downstairs and play with me" even though it's just turned 6am!

Good luck Kym

Tvman x

My philosophy is simple, love life and family.
AP7
Posted by

That's awful, Kym. I hope Macmillan can offer you some help.

Kym66
Posted by

Hi tvman 

Thank u 

Best part of having grandchild  is when they do that  first thing in the morning then u grab that  quite nap in the chair x 

Sorry u in pain hope most of this is due 2 the journey n settle down today 

Even though it's a sad time your visit to your daughters try n enjoy it as much as possible 

Kym xx 

Kym xx 

Kym66
Posted by

Hi AP7

I hope someone can help 

Kym 

Kym xx 

Kym66
Posted by

Hi Daloni 

Thank u I will give them a call today I hope they can help I dont think I have any more fight in me 

Was thinking of the meeting last night n just started winding myself up with it all the best part was my manager said u have kept me informed all the way n sent in letters u received (scan appointments oncologist appointment anything I received I send in ) she ask me dose she have anything saying its terminal  yes I said try my sicknote from gp it says it on their oh she says n u also have it on the hospice letter inviting me there to do end of life care plan  just unbelievable 

Hope u r ok Danni with all u have goin on xxx

Kym

Kym xx 

daloni
Posted by

Hi 

There really should be a special place in hell reserved for managers like this. Or minigers as I prefer to call them. What an unbelievably unpleasant piece of work she is. I am so sorry you have to deal with her and so sorry she’s taking up so much head space. It’s easy to say “try not to dwell on it’ but totally impossible I know.

Yes I’m doing ok, thanks for asking. I was at hospital yesterday with my daughter for her appointment with the allergy clinic. She’s been in hospital five times since May with anaphylaxis. It turns out she does not have an allergy but a wildly overactive immune system with the mast cells randomly secreting large amounts of histamine, resulting in hives and itchiness.

She’s being referred to the severe urticaria service to see what level of treatment might help. It was a tricky meeting as she was hoping they’d do allergy tests, tell her what she’s allergic to and she could go on her merry way avoiding said allergen. But it’s not so clear cut as that. She’s most likely to get better spontaneously, maybe within a year but it could be several years. It’s going to take time for her to process all this. 

Today I am at the hospital on my own behalf - blood tests and check up ahead of treatment tomorrow. The irony is that my daughter is struggling with an immune system that is producing too many IgE antibodies. Meanwhile the hospital is injecting me with IgE antibodies to fight the cancer.

Lots of love xxx

Kym66
Posted by

Hi Daloni 

That's crazy about IgE antibiotics  x I  just got call from oncologist  she wants me to have a round of radiotherapy starting monday for 4weeks 

Also got a appointment  with the orthopaedic clinic tomorrow  find out if they r going to do surgery on my shoulder  

Best of luck  with treatment tomorrow 

Kym xx

Kym xx 

fighting girl
Posted by

Hi daloni , you just couldn’t make this up re IgE antibodies ,hope you are both sorted asap . our immune systems have a lot to answer for !!!

kym 66   Hope you get some positive help to deal with your manager

positive thoughts everyone ,quit e hard at times i know

janet

xxx

daloni
Posted by

Hi

I hope having a plan will help you feel more settled. Have you had radiotherapy? My best advice is plan in plenty of rest 

good luck! 
xx

Kym66
Posted by

Hi Daloni 

I had radiotherapy b4 when I had breast  cancer 15 years ago  I found side affects were worse than chemotherapy  with the radiotherapy it knocked me 4 six even my breast care nurse was a bit shocked by it she said my reaction to it was a bit extreme  

I'm not looking forward to it due to last time everything is getting 2 me today  think I'm going to chill rest of the day 

Kym xx

Kym xx 

anndanv
Posted by

Hi Kym, No wonder things are getting to you, it's a lot to cope with, especially the manager at work as that part could have been avoided! I'm pleased you are calling McM, I hope they can give you some practical advice on how to deal with all this! These managers only think about how things affect themselves, giving others o thought at all! Good luck with RT. I'm sure lots have changed in 15 years since you last had it so I hope it will be a much better experience this time round! Please keep us posted!

Daloni, you definitely couldn't make it up! Your daughter has the excess that you are missing! Unbelievable indeed. Hope it all settles down soon!

Love Annette x

anndanv
Posted by

Hi Tvman, Isn't it strange that we think because we are on holiday, the pain should be too! I've found out the hard way that pain doesn't take holidays! However, your grandson weakening you up to play with him sounds like the ideal way to start the day, enjoy every minute of your visit! I'm sure that special hug has helped your daughter cope better with all this!

Love Annette x

Alive
Posted by

Hi Kym66,

When I had my first course of radiotherapy in 2003 I struggled with total exhaustion. If I sat down anywhere I just slept. It was annoying and embarrassing. When I had it again in 2014 I was so much better. I think it has just improved over the years a lot. I am hoping you will find the same this time around. 
love and hugs

Maggie xx