Gragon

Hi Gooner. I hope you don't mind me commenting here, I am going to tag Gragonhere for you, so he gets a notification about the post. 

Take care 

Thank you.  As i said I am a complete novice to online posting of anything so that’s absolutely fine. Take care and stay safe xx

Hi Gooner,

An Arsenal fan I presume, I lived in Highbury for over a decade before I returned to Yorkshire in 1999.

I sort of presumed that because I coped with the pazopanib OK that I would be similar this time.  Unfortunately not the case.  I've had three main areas of pain, my right kidney, the tumour on my right abdominal wall and my tummy on the right hand side.  This has given me a band of pain going from my kidney to my tummy button  I think the pain is settling down a bit but as I have not been able to move much my right hip has seized up as well and I am now liberally applying voltarol.

I have also had nausea, diarrhoea, change of taste, loss of appetite, headaches.

When I was younger I actually enquired about emigrating to New Zealand but given that I have subsequently developed cancer I am pleased that I decided to stay in the UK.  It has saved me a fortune.

Having said that I am sure that the NHS could improve in lots of ways, not least in it's communication, both with patients and with other departments.

All  the best,

Gragon x

Yes Gragon. Spot on re being an Arsenal fan for nearly  70 years. Totally misunderstood where you lived. Thought you were in New Zealand and costing you a fortune. I totally agree that NHS communication is shocking. I only found out this morning that I was definitely coming in for angiogram then staying in overnight for op to remove huge mass in my shoulder. So bizarre as this is a secondary from kidney cancer from 2005. Have had a huge trauma last year which has unfortunately triggered it off.

 Good luck to you and all out there x

Hi Gooner,

I don't think that other countries have much similar to the Macmillan community so you come across overseas members fairly regularly.  When I first talked to Vulpes she was asking about alternative treatments because of the cost.  I find it one of the nicer aspects that you meet people from all over.  Even if the reasons you meet are not so positive.

I was initially seen at one hospital 20 miles away.  I got my ct scans there and could have my blood tests done there or at my local GP surgery.  Then to save money (theirs not mine) my care was transferred to a hospital 30 miles away.  I can drive but if I lose that facility it is a.minimum three hour journey each way.  The hospital and my GP are in different health authorities so at times they struggle to see my blood test results.  I argued to keep my CT scans in my local hospital which is good as they generally get reported quicker.

I have complained through PALS several times to ensure my treatment happens within time scales.  When the hospital was changed with no consultation with the patients I complained to my local MP and the MPs where the hospitals are based, I wrote to the Heath Trust directors and copied it to the heads of oncology services, my oncology team and my GP.

I very quickly realised that if you let them they would try to do what they wanted.  I'm afraid I have a bit more invested in this process than they do.

Now that it has been established that if I feel I am being treated badly I will push back hard so I feel I get listened to much more now.  I am not an oncologist but neither am I stupid and can understand a conversation if they reduce the jargon.

It really isn't good enough that you got soittle notification of your pending hospital visit.

I am grateful that I have a kindle, a smartphone and a laptop.  This gives me access to plenty of entertainment if I ever have to stay over.  My kindle and my phone (for audible books) go with me to every appointment.  I hope your hospital visit goes OK.

Let us know how you get on?

Love and hugs,

Gragon.

Hi Gragon. Just coming round properly from op on Tuesday. Feel like I’ve been hit by a hammer but consultant said it went well. Next step is home then high dose radiotherapy. I am going to push for help also. My husband has gone a year and 3 months without an epileptic fit so should have had his license back at beginning of January. Have involved our MP but still no sign. Will mean a 2 hour bus ride or half hour taxi each way which costs £80 round trip. Totally out of the question for us. Finance should not be a consideration here. Coming here on Friday for pre op on train cost us £70 but the surgery was too  complicated for our local hospital 

You sound like you will stick up for yourself too which is great. I wish you the very best for the future and everyone out there a speedy recovery xc