Vasculitis UK
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Cerebral Vasculitis to start of with but then Testical Cancer, and now the start of Bladder and Bowell cancer

17 yrs. ago in 1999 when I 56 and healthy. After 3 seizures my Neurologist sent me off for MRI’s I was diagnosed with Cerebral Vasculitis. The actual disease is now under control but I still have the problems that I had at the beginning. That being Short Term memory and Concentration.

9 yrs. later in 2008 I was diagnosed with Metastatic testicular cancer which thankfully stopped at my lungs.

6 yrs. later in 2014 Cancer lymph nodes have been found in both my bladder and Bowell and thankfully their has only been a few lymph nodes been removed.

So I am a member of these other communities

10 Replies

Dear Phil

Sorry to hear of your health challenges

Somehow it seems when we have one disease we get another

Like climbing a hill then discovering there's an even bigger one to climb

I have been diabetic since 2002 and it slowly worsened until I needed insulin

Then in 2015 I had colon cancer but thankfully surgery and chemo stopped that

However once you have had cancer there is always that little niggle in the back of your mind

However the chemotherapy has left me with side effects like neuropathy palmar plantar hand syndrome and balance problems

There's a lot of things I can't do now I did before I had cancer

And recently I've had a temple artery biopsy because The Docs think I have GCA

In spite of everything I'm glad to be alive

I look well and if you did not know you would not know I've had all this to cope with

Friends and family have been good as has been the NHS but I find by being informed and managing your medication etc as well as possible plus eating well etc life is of a good quality and I try to enjoy every day I have left be it a long or a short time

Best Wishes


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Hi Phil,

I'm sorry you are having such a bad time of it recently, I wish there was something I could say that would whoosh it all away. Life's not like that though is it?

Iv been trying to take a more physiological bent to all this health stuff, difficult though. Latest info to come my way is about mindfulness. Look it up if you will at some point, as what Iv read and heard recently there seems to be quite a bit to it.

Have you looked at diet changes, as it appears some foods work for some people and not for others?



PLEASE can ask anyone who has cancer to really research the cannabis oil but one with an High THC content plus vitamin b17. I know many will shout me down and especially big pharma but the research is there. I know people who are clear after being stage 4.

My belief is that a cure is not an option for big pharma. Treatment is where the money is & it makes me apoplectic with rage We need treatment that helps and not treatment that may slow progress but cause side effects that are often worse than the disease

God bless and keep you all


Cure is difficult because these are complex, multi faceted diseases with genetic and environmental triggers. We still don't totally understand Vasculitis, until we do then no cure is on the horizon.

There is more research being done into Vasculitis now than ever before, I do think the " Big Pharma " conspiracy theories are naive in the extreme.

Can you quote the research proving that cannabis oil is a cure for cancer?


Not publicly but I can lead to a group and to real people. Naive is closing ones eyes to what can work and not belittling something not known of


Not belittling, just asking for the links to evidence ie double blinded placebo controlled clinical trials. 😄


Hidden I have been suffering for some 23 years now and the meds that the IBD specialist gave me made me much worse and there is no doubt of that but I was in the mindset that they were experts and I hadn't a clue. The meds were strong immunesuppressibe drugs and very similar to the drugs given for vasculitis. I was a good lad and took the pills and did as I was told.

Instead of betting better I had asbcsesses that were so big they needed General Anasthaetics to cut them about and two too over 40 cm of packing daily. I cried in agony having them cleaned. This was down to the drugs that I was made to take for crohns. I now also have osteopenia and spots in my scalp, chronic bone and muscle pain and the prednisone has ruined me. I am much worse that before I took these meds. I also noticed that the others were never on the same regimen and so I deduced that they are very much flying in the dark. One hand doesn't know what the other is doing. The one drug that not only helped to treat but also heal d existing ulcers was infliximad but I was told in no uncertain fashion that the national institute of clinical excellence would not allow this and only would if I was in danger of death and then only to induce remission while then using the immunosuppressive drugs again.

Now. With the suspected Wegeners. I've had test after test. I've been scoped in ever entrance and exit but I now am back to good old azathiprine and I know how badly I react but no one will listen. It is a recurring nightmare I had with the IBD but with many more I trusibe tests. They will not even consider talking to me about my alternative therapies and look at me as if I am a grade A lunatic.

Now, because of the sensitive nature of using cannabis oil, most habe to do their own research. It's a case of having to be careful or you could,d be gaoled. I can link you to someone who helps people by supplying the oil, it's not the non THC one but a high THc yield and we have the back up of people in stage 4 who are alive and with no sign of the tumours that was supposed to end their lives

This is not just cannabis but also taking an entirely look into a diet that will starve the tumours I don't feel comfortable discussing it here

As for the comment of big pharmaceutical companies naive then I hope many other do get this awful naivety

You mist understand that some of us do not trust the doctors because the medical reps give them big savings to use a certain product each to their own I say

I won't link you on a platform such as this as that would be foolhardy and I may have my foibles but I am not stupid

Do you really believe the common cold still can't be cured ? The common cold makes for a massive Profit on treating symptoms then that is naive my friend but if you wish to again say they have our best Intwrests at heart then I strongly disagree

The business of treatments is a multi billion ome

In closing, the research is there, should you wish to read with an open mind

I have not yet had the oil but have added the supplements DHEA & pregnenolone, Zinc at 30Mg pet day. Wild oil of oregano as antifungal and antuibiotiv, magnesium Malate for mood, Heart rhythm &'energy, Optimised B complex & 0ptomised folic acid, vitamin E 400iu, calcium with D3, chlorella and spirulina to clean and protect my kidneys Red krill oil as an anti inflammatory and energy source these all work on inflammation and had alread seen me off of azathiprine and prednisone pregnenolone usrd to be use in RA patients until science made corticosteroids, lastly I use a tablet with ginger, circumin & bromelain all anti inflammatory things

Seek and he shall find


I also use Schiff melatonin for sleep. It contains 3mg of meLatonia plus GABA. Theanine, valerian and chamomile. I take one 30 mins before I wish to sleep and go into deep rem sleep. The steroids used to have me not sleeping and then waspish and angry


The steroid I was taking prednisole, made me angry, too angry because I lost my job. But if I hadn't of taken them and other meds I guess was I wouldn't be here being able to wright this and see how other people are going.

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This is true and sometimes it's weighing up the worst of two evils. I hate the prednisolone because I not only get bad moods but I get huge spots and some turn into abscesses and I've had to have 3 surgically removed under general Anasthaetics. I now have 2 huge holes on my upper arm and back and another in my scalp. The smallest one took 40 cm of packing each day. I have ostopenia too. My eyes are developing cataracts way too early and I guess that is all part of this. What really bothers me is there are now better treatments that have less side effects but won't be used due to cost

Wishing you all the very best


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