Still here

Hi Laura

that's great to hear you are feeling better. It makes such a difference to our daily fight on this roller coaster to be able to jump off for a while and feel okay. And yes, I agree when this happens it charges our batteries to increase our strength and positivity to fight.

best wishes

Caroline

Yes, it comes out of the blue and then nothing is the same after. I remember wishing that I could 'unknow' that information, but gradually we slide into whatever route we choose and it all goes on. Human beings are remarkable resilient I feel. We all do our best to cope with whatever life flings at us. It is bad enough for those who have it-but think it is worse for loved ones who have to watch helplessly.

Take Care

Best Wishes

Laura

Hello Laura

Lovely to hear from you and hear how you are getting on. It sounds like you are finding some options that work for you, which is the most important thing. Really pleased to hear you are feeling positive, partly I am sure because you are taking control of your own unplanned and unwanted experience of lung cancer.

Do keep us posted as to how you are doing. Depending whereabouts you are you might find a Maggie's Centre or the Bristol Cancer Centre of use.

Hope your daughter is being a useful support and coping better,

best wishes

Lorraine

on behalf of Information & Support team

Thanks Lorraine

Haven't had time to go to Cancer centre. It's Penny Brohn quite close to me. Have been too busy infiltrating the MS centre

That sounds like an interesting strategy, seems to be working for you.....

Afraid I was using old terminology for Penny Brohn, not sure if that suggests I am well grounded or just out of date!

If at some point you wanted to write a bit about your experience of managing your diagnosis and decisions around treatment that might be of interest to others. We would look at whether it was something we could feature on our website or publications. We are also developing a series of pod casts/ DVD features, if that was something you might feel not too much of a challenge/ invasion of privacy, just something to consider. Appreciate at present your energy levels may not be up for such activity.

best wishes

Lorraine

Hi Lorraine

Yes, would be pleased to do that if it might prove helpful to others. Would like to assess how I am at the end of this course of treatment though. Wouldn't want to encourage anybody down the garden path as there is a cost involved, which to me was worth making the leap of faith.

Best Wishes

Laura

Hi Laura, I've followed your posts. I enjoy your humor and attitude very much. Was wondering what the m.s. centre is. My husband is interested in alternative treatments. Not much in favour of chemo, despite a stage 4 diagnosis. People, staff, keep trying to scare him into taking it. He may, but wants to give his body a chance first. Are you getting vitamin infusions in Uk. Also, cannabis oil promising but you seem to need a lot to make any difference. It's also illegal here the UK I think but not sure , even as an oil. I hear some other countries feel differently. So not sure where he will go with all of that. Plus it's the cost. I'm glad to hear you are feeling better now, than at diagnosis. My husband does too. Are you going to get scans to monitor your progress etc? Will your hospital do that for you?

Take care and go well

Cath xx

Hi Cath

Multiple Sclerosis centre. They are a charity & have hyperbaric oxygen chambers. You can enrol & they let you use the chambers for a smallish fee. When I was first diagnosed I did quite a lot of research about various things. I'm not good with drugs & have always been suspicious of chemo. My simplistic attitude is that Cancer loves sugar & hates oxygen-so I determined to deprive it of one & flood it with the other. oxygen therapy does not have 'rubber stamp' from any of them's that know them's that know, but many of theMS patients swear by it and find it helps their condition enormously. I agree, the oncologist told me that chemo was only thing and it had to be done immediately or it would be too late. Despite the fact that all they were offering me was perhaps an extra year of life in which I'm sure my quality of live would have been badly compromised. End didn't justify the means for me. To be fair when I categorically refused chemo, nobody gave me a hard time. The oncologist said that he didn't blame me & my GP after some thought said that he would do the same thing. At the moment I am attending the Dove Clinic in Twyford and having Vit C efflusion & ozone therapy. They are really wonderful & seem to have a pretty big client base. I am having a course of 15 treatments on a daily basis. Julian Kenyon who is the clinical lead has been feeding me an assortment of supplements & an off piste medication 'Low dose Naltroxene' which is another drug not taken up by orthodox medicine. I believe it acts to restrict the blood supply to the tumours-I could be wrong.

The treatment is minimally invasive & not giving me too many problems, although I'm told having 5 a week is a quite a burden on the body. A lot of

people only manage two a week. It does cause a little pain & increases the cough as it causes tumour swelling before the Cancer cells committ Hairi Kairi(hopefully). I am having to stay away from home as they don't want you driving after the treatments & I live two hours away. I'm treating it as a holiday and have got myself the cutest little character cottage 2 mins walk from the clinic-so it's all good.

I did feel that when you refuse chemo you become personae non grata to a certain extent & have to say that I am dissapointed in NHS. As far as I can see it's a one trip poney as far as oncology goes. I'm also not sure that they really have a serious take on this Cancer business-mainly because they are determined to have a pharmaceutical 'cure' & I am sure there are more roads to Rome.

I did ask GP if primary care trust would fund my treatment, but answer was a very big fat no. So I am having to bear my own cost. Told my daughter that I'm spending her inheritance(very little anyway) and she laughed & said she was pleased that I was if it works.

There are all kinds of alternative treatments that people have verified that they have had success with. The Gerson Therapy is another one that I think has legs. Strict dietary regs-but that shas been around for years & saving lives.

The Internet is an amazing source of info & I have also seen a lot of interesting postings & information on the dreaded Face Book.

What I couldn't understand at point of diagnosis, after taking great pains to tell me that Cancer is a very personal illness & peculiar to each person, they then proceeded to offer the exact same treatments as blanket coverage. To me it didn't add up.

Don't ignore the spiritual aspect of the operation. I believe Cancer develops from mind, body & spirit & therefore needs attacking on all those levels.

I think your husband needs to investigate the options & go for whichever route that gels with him & of course is affordable.

I got a very good book from a company called Agora Health(Google) I think it is called, 'Tommorrow's Cancer Cures Today'. This in fact was where I found the Dove Clinic, after I decided that I wanted Vit C. Worth getting that book.

Sorry, this is one of my epic e mails. Hope your husband finds it of some interest. Sounds as if we have a similair diagnosis and I hope that he will find navigate the options & find the one for him.

Best Wishes

Laura

PS I don't think cannabis oil is illegal as long as it only contains CBD not HTC. HTC causes the tripping effect & you couldn't take the oil if it has it in-you would be comatose most of the time. There was a very good video on U tube. Lady with lung cancer, couldn't deal with chemo. Australia I think she came from. Her husband made some cannabis oil for her himself. He didn't manage to eradicate the THC & she was sleeping for 20 hrs a day. Then the rejigger & made it into suppositories which she was able to use. 9 months on she is Cancer free after being given two months to live. I am getting my cannabis oil from a shop in Glastonbury. His website is Freecannabis.org I think. With regard to the strength-I don't know. I just got what I could in the beginning & started taking it. Free(that's his name) is now stockings cannabis paste which is 8.75 percent& he was telling me that he is trying to get a stronger one at 15 percent. I have been paying £60 to £70 for a bottle of oil which lasted a month or so.

Best Wishes

Laura

Hi Laura, firstly apologies for any typos. I'm using my husband's pad thing and it auto corrects words. Sounds mad at times. If in doubt what I mean, guess.

Thank you so much for sending that mail, with all the information. We will look into the oxygen and a few other bits. Are the infusions expensive? Al, my husband has been looking into some stuff, on various supplements. Looked at the Gerson diet but the volume of organic veg he felt would be too expensive. He is considering a ketogenic diet, which has shown benefit with oxygen treatment and also helps for people taking traditional route. Thanks for the tip regarding the Free website. I'm going to phone around the m.s. centre's nearby to see who can offer it.

Yes, it is very lonely for him as he feels if he doesn't go on the conventional route it is quite scary to get no support via nhs. Even just 3 month monitoring. In their words 'what would be the point'. He is off to London for a second opinion. Really on treatment options and to see if a change of team will influence him at all. I'm sure his family think I should talk him into treatment but I feel I have to let him be himself in all of this. It's been so traumatic. I feel my fears are mine. I want to support him the best I can. I come from Buddhist background, so this gives me a different perspective maybe. But I'm totally committed to supporting him. Plus he can change his mind if he wants. If they had a cure he'd be grabbing it open arms. All things considered, he's looking at his options. I can't avoid pain by trying to control things I cannot control. I agree with you. Many roads lead to Rome. To love someone sometimes means to walk a difficult path. It's all part of it. Plus I realise I can't possibly say what I'd do if it was me; because it's not. I hope he finds his true path for him. Obviously I am shattered at times, driving along weeping. But that doesn't mean I should put that on him and influence him for my sake.

It's nice to hear from you, as I say it can be very lonely in a non traditional route. No One to bounce things off. Maybe I will pm you with anything useful supplement wide we have. Cancer active are a good site. They talk about a mixture of options, also alongside traditional pathways. Will figure out how to send you stuff personally if you like. I worry about posting things seem as inappropriate, or crank like on here. I don't want to put anyone off anything that is right for them. There doesn't seem to be much of an alternative site.

I'm glad you are feeling good now...

Take care and go well

Cath x

Hi Cath, my e mail is laurakeidan@aol.com. I know what you mean. I also feel that I might be offending other people & wouldn't want to do that. Feel free to e mail directly.

Laura

Hi Cath. Can you let me have you or your husbands e mail address.? I have a couple of e books that I would like to try to send on to your husband. I feel that he is on the same path as me, but a bit behind. If I can help him with some sign posts-I would be more than happy to do so.

Laura

xxx

hi Laura, sent you an email...sorry for delay. Been a bit mad here...

C x