My husband was diagnosed in March with esophageal cancer also in vertebrae and gastric nodes been waiting 3 was for one of radiotherapy for pain in back, was told could claim higher rate of pip which he has also told could have a blue badge which arrived Friday, been referred to local hospice, where I know all staff and Dr's in the inpatient unit as I work in local pharmacy and we supply all medication, but no one has given us a prognosis for long term out look, my husband is well has food swallowing issues and was told after the radiotherapy would start chemo, he is furloghed on full pay at the moment, it's pain and numbers in his back arm and hand that's getting to him most, but I'm doing my own head in not knowing what our long term out look is like, when you look in to the higher pip and fast tracking it refers to terminal, and when you look in to that on gov.uk it refers ton6 months or less, I'm going crazy and trying not to show it, not sleeping don't know where to turn.
Sorry for all your troubles .Bill had oesphageal as his primary followed by brain mets .If you click on my user name it will give you the whole story Prognosis is something that haunts us all but is impossible to call .There have been many times in the past when Bill seems to have been at the end and has managed to rally .Its only a rough guide even the docters can only predict .The main thing to focus on for you both is to get his pain under control and as much support as you can get in these strange times .The hospice will help you and your husband and you will find a way to cope .Something just kicks in with us carers and we muddle through .Take care keep posting and look after yourself as best you can .Lots of hugs x
Granny Sue
Hi Sal1, I'm sorry to hear how stressed you are. Long term prognosis is something they often steer clear of simply because it's so difficult to be accurate, but it sounds like you need his team to be much more aware of your needs. I'd call the Carers Trust tomorrow as they are marvellous at helping with such things as forms and guiding people through the process of claims. They will probably be able to talk you through what to do. If you need any further support, a call to your husband's specialist nurse should sort it out. Then sleep; even if you just have a nap, get yourself a few zzzs to refuel. I find watching a certain tv series always makes me nod off and a 10 minute nap can recharge the batteries.
Love and hugs,
LoobyLou
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Hi granny sue, thanks for your reply, we had a good day today, went and sat at his fishing lake about 10mins from home, totally alone just us 2, he fished I cross stitch felt abit normal, what ever normal is these days, hoping he gets his radiotherapy appointment in the next day or two but has a video appointment on Wednesday and I'm finishing work early to be home for it, I think part of the problem is that I've not been around for the last appointments, and wonder if he is trying to protect me, love the bones of this man, we've been together 16yrs married 12 years, second marriage for us both, just took me a long time to find him.
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