i WAS DIAGNOSED IN mARCH WITH gbm STAGE iIV. Had surgery to remove estimated 80%, radiation and chemo. I am on a course now of 5 DAYS PER MONTH OF A HEFTY DOSE OF THE ORAL CHEM DRUG TemADOR. i HAD TEMPORAL LOBE SEIZURES WELL CONTROLLED NOW WITH kEPPRA. i AM DOING OK. hAVE HAD TWO MORE BRAIN SCANS NOBODY BUT ME AND MY BOSS SEE ANY CONCERN WITH. i HAVE SOME MINOR ISSUES ALL ANNOYING NONE TOO AWFUL. i AM NAUSEATED EVERY MORNING, FATIGUE IS MAJOR. hEADACHE AND SOME MEMORY TYPE ISSUES. mY REASON FOR POSTING IS TO ASK YOU FOLKS WHO ARE RECEIVING TREATMENT FOR THIS AWFUL CANCER WHO IT IS THAT YOU RELY ON FOR PRIMARY MEDICAL CARE. I HAVE A NEURO ONCOLOGIST, i SORT OF THOUGHT HE WAS RIVING THE BUS BUT HE ISN'T. MONDAY I GO SEE A GENERAL SURGEON FOR GALL BLADDER ISSUES. Makes me wonder. There is a new specialty around here "extensivist." Makes really good sense. I think this is going to become an issue for me, having a trusted person to round out my care needs. I wondered how yall managed that. Thanks so much
i'VE RECENTLY BEEN TOLD OF A RELETIVELY NEW SUB SPECIALTY (OF INTERNAL MEDICINE) CALLED EXTENSIVIST. aNYONE FAMILIAR WITH THIS? iNTERESTING. tHIS SPECIALTY CONCERNS ITSELF WITH THE MEDICALLY COMPLEX OR FRAGILE PATIENT SNF COORDINATING CARE. i THINK THIS IS AN AREA OF OUR TRADITIONAL MODEL OF MEDICAL CARE THAT IS LACKING. i AM GOING TO CALL THE TWO i HAVE FOUND. i believe this field will be growing in the future.
Just be wary of any charges that they may want to look after you, perhaps in a private capacity.
Most GP surgeries have a designated person to liaise with for any concerns that you may have. They will be able to escalate these to your GP without having to book an appointment and visit.
I tend to deal with my partners 'calendar', which spans 3 to 4 different hospitals and many more physicians now! But if I weren't able to do this then I know Mike would really struggle.
Last year we were referred to the local hospice for advise and such rather than end of life care and we were assigned a lovely nurse specialist. Her role is to assist people out in the community with arranging hospital appointments, sharing results, chasing appointments etc should you need any support and advise. Perhaps you could discuss a referral with your GP to see if there is any support that could be offered to assist you with pulling it all together?
eMMA, THANKS SO MUCH FOR YOUR PERSPECTIVE. mY DAUGHTER PROVIDES A WHOLE LOT OF THIS STUFF. aT THIS POINT IT IS NOT COMPLICATED OR TIME CONSUMING, BUT WE KNOW THIS WILL CHANGE AND WE ARE TRYING TO EDUCATE AND PREPARE OURSELVES. i WORKED AS A CRITICAL CARE NURSE FOR YEARS BUT IT AMAZES ME WHAT i DO NOT KNOW ABOUT THINGS LIKE DISABILITY, SOCIAL SERVICES ETC. aNY ONE GOING THROUGH THIS SHOULD HAVE ACCESS TO HELP IN UNDERSTANDING STUFF. wERE MAKING SOME CALLS AND MY DAUGHTER IS LOOKING IN TO OPTIONS. i DON'T THINK PALLIATIVE CARE IS COVERED BY MY INSURANCE, BUT HOSPICE IS.......
So you have private health insurance? Then most insurance companies have a cancer help line (I know AXA does) which can help you and your daughter. If not there should be someone at the hospital where you are being treated who can advise.
Nearly all private policies exclude palliative care, I am surprised that it would include hospice care (which, by definition, is palliative) . The good news is that you can pester your consultant to get more attention than under the NHS, they are making good money out of you...
Regarding palliative care, you should be able to get this directly funded by the NHS and not involving local social services. It will normally be co-ordinated through the hospice.
With a GBM, your daughter should be able to get at least the care component of Disability Living Allowance , and quickly under "special circumstances" ( a euphemism for a terminal condition, even if you are one of the lucky long term survivors) . It is not means tested. The form is straightforward but awful, 40 pages of bureaucratic bumf. You can download it from the DWP website.
i HAVE BEEN APPROVED FOR sOCIAL sECURITY dISABILITY iNCOME WHICH STARTS THIS MONTH. i DON'T KNOW WHAT DISABILITY LIVING ALLOWANCE IS. AND WAS IS THE DWP WEBSITE.
I had an appt. with a new primary care doctor yesterday. I, so glad i made an appt to see her. i think it is going to be good for me and the family, even when my care needs get complicated. I also had a hospice volunteer visit today. I am noticing some changes and so I do wonder about this tumor. Next MRI is early October. My doctor's specialty is palliative care. Shes so cool! I have a feeling this next scan will demonstrate tumor growth. I don't feel good most of the time. Just nausea and headache. Nohing major. Balance is bad, Memory poor. Family wants to start some home care already.....I'm not sure.
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