Good morning. I'm new to this group and the Macmillan site so just wanted to say 'hello'.
I'm 49, was diagnosed with stage 4 clear cell carcinoma dated 03/04/22 after having a twinge in my back for a few days in march.
My diagnosis came as a massive shock given that it was already in my liver, both lungs, my lumber and thoracic spine (of which 5 were fractured) both my femours (the Rt needing a rod and pins inserting due to the risk of fracture), my Lt humerus, Rt shoulder joint, Rt shoulder blade (which has also fractured) and my right hilar.
Since diagnosis my consultant oncologist has told me I've had every complication associated with the disease: spinal chord compression, a fractured greater trochanter in the leg which had been rodded and pinned 2 days earlier, a DVT, acute kidney injury, hospital acquired pneumonia, a fall fracturing my sternum, a stroke, Lymphangitic Carcinomatosis, toxicity to 3 chemo treatments (I take chemo tablets daily to buy me time) and between May and October 2022 I spent 4 weeks then a further 5 weeks in the same hospital after my orthopaedic surgery, a month in a hospice when I was really poorly and my family prepared to lose me and then 7 weeks 3 days in Liverpool clatterbridge as my fractured spine had further fractured due to needin palliative radiotherapy on my compressed spinal chord and I needed a back brace fitting because I'm not suitable for further surgeries.
I have thankfully only had a 5 day hospital admission thus far in 2023 which is when I received the diagnosis of Lymphangitic Carcinomatosis.
Currently I'm back at home with my wheelchair and stair lift and my lovely little family (husband and 13 year old daughter - who are both amazing and up until joing this group - the only people I could talk to - which of course I didn't - which is why my first post here is so long and detailed (sorry 
).
At the moment we seem to be doing OK! We've had to adapt a lot - but it's working for us - and we're still learning to take things one day at a time and be flexible because best laid plans very often go awry!!!!
Daughter attending school, husband taken leave from work to care for me, and I had to retire on the grounds of I'll health this February after being a nurse for the NHS for 31 years!
So yes - it's been a pretty testing 14 months for sure!
I'm buying time is all. I'm currently on Lenvatinib and Everolimus tablets every day - but I became toxic to the recommended dose of 18mg Lenvatinib so I'm only taking 10mgs at the moment - but it's something - I'm fighting it with something at least!! 
Jen
Hello Jen. Welcome to our group.
WOW I think is an understatement having read all you’ve been through. You must certainly be made of tough genes.
Your first posting today is most timely for me.
I am stage 4 Papillary Renal Cell Carcinoma with mets in both lungs and thoracic lymph nodes. And like you have spinal issues but mine being through osteoporosis. I’ve had hip and rib fractures and 5 fractured vertebrae. I haven’t needed surgery for them other than a partial hip replacement to resolve the fractured neck of femur.
I’m currently taking cabozantonib to treat my cancer and awaiting appt for a new Dexa scan and commencement treatment for the osteoporosis.
The reason I describe your posting timely is because for the last couple of days I’ve been experiencing major fluid buildup down my left side along with numbness in my face and neck, headaches and my breathing had been even more difficult than normal (it’s pretty bad as a rule anyway). Yes I know it’s breaking all the rules but have been Googling and self diagnosing and fear the onset of a stroke. This along with some quite severe hand and foot syndrome side effects of the Cabo means **I’m feeling very down and ready to give in.**I’ was already scheduled to see both Oncologist and GP tomorrow and I’m sure they will either confirm my fears or offer alternative diagnosis.
You very casually mention you’ve had a stroke among the very long list of problems you’ve suffered . How did this go??
** reading your 14 month story (mine has been a 14 year journey so far) and the myriad of problems you’ve encountered and dealt with so stoically has made me feel guilty for feeling very down and ready to give in.** One day at a time as you say, adapt and deal with it. Your incentive being your husband and daughter likewise my husband for me. He also has become my carer and deserves no less than for me to keep going.
So thank you 
your first posting has incentivised me. I sincerely hope the Kidney group will be able to help you along the way.
Rojan xx
