Last year I had awful pains in my right leg (so bad I could barely walk), so my Gp sent me for an MRI on my back. The results came back and he said I had a bulging disc in my spine, I was referred for physio.
February this year I got a phone call out of the blue from a specialist in urology telling me that he’d seen my MRI results and he didn’t like the look of my kidneys, so could I go for a CT scan? I had the scan on Wednesday. The following Monday I was called in to see him and introduced to two care workers and I was given a folder with Macmillan written on the front, I was then told I had renal cancer…The specialist explained that I had a 9cm mass attached to my left kidney and that they would be operating in the next week to remove my kidney.
A week later I was admitted to Salford Royal hospital and had the surgery, I was told to come back in six weeks for a check up. The checkup came and I had no problems, a week later whilst driving with my partner I had a seizure and wrote my car off! My partner took me to hospital were they said I’d had an absence seizure, because of this I needed to inform DVLA, I did this and DVLA informed my that I had to hand my driving license in. I was told I wouldn’t get it back until I’d been seizure free for at least six months.
Fast forward to late June and I started to feel really unwell so yet again my partner took me to hospital, there they carried out various tests and then prescribed me anti biotics. A few weeks later my Gp rang me and said that the hospital had requested follow up blood tests, these were carried out. A few days later my Gp called me in to see him and explained that he didn’t like my blood test results and he wanted me to go back to hospital for them to repeat the blood tests. This was when things took yet another serious turn as the hospital conducted the blood tests and immediately told me I was being admitted.
A week went by and various tests were done ( I had seriously bad cough by now too), Dr’s came to see me and told me I may have pneumonia. A few days later a CT scan was carried out and then I was in bed when several specialists from urology came in and told me that I may have ‘some’ new growths, but they wouldn’t go into detail. I was told at this point that my care was being transferred to Christie’s in Manchester, I was then sent home.
A few days later I was sent a letter by a neurologist telling me I had epilepsy
the following week I was called in to Christie’s and told that my cancer had spread and that I now had stage 4 renal cancer. They said it was very aggressive and that if I didn’t respond to treatment I may have six months to live, if I did respond I had a year or so. Treatment was started and thankfully I seem to be responding to it.
It is now nearly December and I’ve not been able to work since February, treatment continues!
Written by
Tomcat
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Wow, you have been through a lot! I am unsure what to say other than you are in my prayers🙏❤️
If we were in a face to face conversation, I would give you a hug and talk about so many other things and try to shift the mood to living each day to the fullest!
Sorry to hear about all that's happened to you. I am glad you have your partner who is a great support to you. You are both in my husband and my thoughts and prayers.
Holy Mackerel!! I thought Wendy's story was bad but just reeling after your story. The Epilepsy can be controlled and the 6 months with no licence seems to last forever - but it doesn't! I've been seizure free for around 3 years and the Neuro has deemed me "cured" if I don't have any more on current meds. As for all the other stuff you have going on-must be messing badly with both head and body.
I can only wish you the best and hope you have great medical care to help cope with it. This disease has more twists and turns than a snakes and ladders game.
Ahh I’m so sorry. What a year of bouncing around hospitals and diagnosis’s…must feel like you’ve been on a pinball machine nightmare! I hope you have good support around you and if ever there was a time to know the true meaning of living a day at a time it’s now.
Words can not express at all in this situation so I nearly didn’t write anything because I felt ai had nothing to add or to help you but I couldn’t pass your post and not acknowledge your seriously bad time as you said.
One hell of a year is an understatement- your strength and resilience shows through, take all the support around you.You have made us all appreciate everyday more - we all want to be beside you, wishing you well.
Here I was feeling sorry for myself when I read your post. I’m so sorry that you are going through this horrendous time.
I certainly wouldn’t worry about not working. Claim all you are entitled to. Your consultant should complete a form for you ensuring you get top rate PIP. You should also get ESA and other benefits like help with rent, council tax, water rates, free prescriptions, ask at CAB
When u feel well enough go out and enjoy yourself.
I teach Reiki Healing and there is a statement that therapists are taught (should be taught) to use when treating those with or suspected of having cancer. It would be good if you can say that to yourself too. You ‘imagine’ you are talking to the cancer cells themselves.
‘I ask that all cells return to their natural and harmonious state of being - in order for this being (you) to survive, I give permission for you(the cancer cells) to die!’
The cancer cells are cells that have basically lost communication with the other cells around them. They are lonely and confused and so do not know what to do. Feeling alone and lost they revert to their initial programming to create a new being. They then start to multiply … a tumour forms. They are not ‘bad’ cells, they are lost and confused. They are doing their best and so by you demanding that all cells return to their natural and harmonious state of being and giving up their mission to create a new being (a new kidney in your case) they are free to give up and die.
It’s about having the right frame of mind. It may work but if not cure it may give you extra time.
Many therapists don’t learn this and so it’s something you need to check if you do have healing. Maybe even educate them - print this message and give them a copy it’s good to spread the word and help others!
Scientific experiments have been done that prove sending unconditional love to a patient - increases the growth of cancer as the love gives the cancer cells strength to multiply
Asking for Gods love to help has no affect because god loves each of his creations
Whereas using that clear and focused statement actually can inhibit the growth of the cancer cells.
You can research this yourself. If your interested I can talk more privately
I wish you well.
Meditation is good also. It’s non denominational and teaches your mind and body to relax. I’m happy to e-mail you one of mine that you can play. I’ll send you one in which, I talk you gently through each stage. No charge I just want to help.
I appreciate everyone has their own views and opinions on these things so I hope I’ve not offended you in any way. Just ignore the message if it doesn’t sit well with you.
All I can add is.. how sorry I am that you have gone down so many illness back alleys! I have no experience in Wendy's suggestion ( above) , but it sure looks intriguing. I hope you can give her meditative directions a try and I pray they will help! Stay strong! -- Love from West Virginia.
Had some more fun news today whilst speaking to my Dr, apparently most patients who undergo treatment for cancer end up being diabetic. I’m close to being diabetic right now 😞
Hi TomcatI'm remember reading when you said about seizures going back a while. Really admire your strength with what you're going through. Sounds like you are responding well to treatment. I'm wishing you the very best right now
Every one here has already said ( so beautifully) all the tings I was thinking and even more. I myself learned many things reading what you have said and what they have shared with you.
How can we help you? With APS , I can say that news meds may make your INR unstable, ( as if you did not already know that… sorry, just a gentle reminder in your current storm.)
Are your GP and oncologist good about getting you meds to help with any side effects? Be sure to ask for what you need. Any nausea meds, etc. Don’t be without anything you may need.
Have you found good on line support groups for the specific issues you have? You may find good tips and resources to help guide you .
I’m sorry this is happening. I really am. Like Ros, what ever persuasion guides you soul , I’m there for it! Prayers of perfect healing, or more universal “good vibes and universal love” - I’m all in! 😘
With a heart as big as Texas , I’m sharing mine with you.
I’ve been doing really well (all things considered) my INR has been all over the place but it’s being well managed. I’m being treated at Christie’s hospital in Manchester and they’ve been absolutely amazing, anything I need is provided straight away.. my main concern (apart from the cancer) is my epilepsy as I’ve been having a lot more seizures lately.
You've really gone through 'the mill' I hope it's also helped writing everything you 've gone through down , I'm sure all of us here understand what has been happening to you, you're a very strong and brave positive person to have had to deal with all the procedures. Back in March on Friday the 31st, I went to bed, planning do a running race on the Saturday 1st April, picking a friend up to run the same race, I never woke up until Sunday in hospital, and I don't know anything about it 🫢 , to cut a long story ( I was told what went on) on Monday a specialist told me I'd had a Nocturnal epileptic seizure, all connected to APS ( brain) and yes DVLA were informed and can't drive for a year, I walk or cycle or run everywhere. My husband would take me but independent me 😊 refuses more often than I should, friends are kind and many offers of picking up., dropping off etc I use my bus pass more aswell. My car has helped my grandson learn to drive and pass his test, so some good has come out of this 😊
Yes I'm on medication forever like I am with warfarin, the NHS have been wonderful and keep their eyes on me ( when they can find me 😅)
This isn't anything like what you've coped with, I just wanted you to know you are coming through all this as I am with our positive heads on x
Thank you, it sounds like you’ve also had a lot to cope with. Sadly I can’t walk very far at all as the cancer has made me extremely unsteady on my feet and I also have Bursitis in my feet. Thankfully my partner can drive so she takes me where I need to go and if she can’t then her Daughter or son in law do instead.
So nice of you to reply. I do hope people replying and listening to you helps, keep letting us know how you're doing, it's lovely you've got family to help you, and better still that you are getting out, it matters a lot, even if you can't get out on your own. X
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1 Year and Counting
Is Hughes Syndrome the same as having positive lupus anticoagulants?
Crazy turn of events...
I AM NOT SERONEGATIVE!
My nose bleeding blood transfusion and apixaban 
