jan2's blog

what has happened to this site

2009-05-16T11:50:07Z

I joined this site about a year ago when i was first diagnosed with breast cancer. It was a lifeline to be able to speak to so many wonderful people about the practical matters that so worried me. As a patron of alternative and complimentary therapies life long I was so scared having cancer I had no hesitation following the conventional chemo.surgery/radiation route as after all, now out the other side, it has saved my life. I was diagnosed with stage 3 that had spread into my lymph nodes. I had many friends who cried no dont have chemo as chinese medicines would be less harsh. Had I listened to all that was thrown at me I wouldnt be here writing this thats for sure. Since then I have abandoned all alternatives as they may be ok to ease the pain of chemo side effects they do not cure cancer and thats a fact. I had help on here during chemo when i asked questions such as, why do i ache is this normal after chemo, yes it was and many replied saying so - therefore i was much relieved and mind put at rest. I had never been into hospital before apart from having children, what do i wear, whats to expect anyone else had this operation, yes of course, lots of replies with fantastic advice and again with radiation this January. My lifeline was Seanty, whose practical no nonsence sound good advice made my life so much easier. I was just shocked at his being banned on here and ask Why? Yes i know admin came up with explanation but its not good enough. I want to know why this site has now become so alternative based and allowed to do so, why is only full of jokes (not that i am against having a laugh dont get me wrong we need it at this stage) but where is all the good sound practical advise gone? In just one year this site has so gone downhill, there were maybe just a couple of you that are so hooked on alternative/complimentary being "practitioners" of it yourselves that seem to be smugly saying "yes we got rid of him" - but why? Many of us, like myself, would not take sound medical advice from you and you are not qualified to dish it out. I was also shocked at one of you actually giving out prescriptions on here, I know you dont do it now but how could you? We all know that alterntives are used to treat holistically and what works for you may be fatal to someone else yet you got away with it. Sean gives trained practical advise on what not to take and backs it up with facts and truth and he gets banned? I strongly urge administrators to think again. Not being disrespectful but, you are only youngsters just out of university - we are mostly older people on here who are or have been through cancer, this is not just a cold but a serious illness and surely this site should be for what we want shouldnt it? There are many alternative sites for those who think thats for them but this is Macmillan and should be run for us that are scared and just want to know if anyone else has been though the side effects/symptons we are going though, we dont want someone telling us that vitamin D works or passion flower seeds work we dont care, we can go elsewhere for this information. This site is basically not up to standard anymore, my oncologist at Barts recommended this site to me last year, but I would not recommend it to anyone now and told him that too unless it goes back to how it was. So please Admin, think again, and allow normal knowledgeable people like Sean back onto the site who are highly qualified in giving out the facts, not namby pamby alternative users.

A MASSIVE THANK YOU

2009-01-23T17:30:56Z

I just wanted to pay tribute to you all - when i was dx last May and my oncologist suggested this site you all became a lifeline. Getting through 6 months of chemo was shared with everyone else going through this dreadful phase. When i was terrified of going into hospital last november for the surgery you all rallied round with reassurance that it wasnt so bad, it wasnt. The unknown last bit of radio therapy many said it was a doddle in comparison - it was. When i wanted to ask the most intimate questions about this illness everyone came back with answers. When i became upset over cranks on here being rude and abusive and pushing their latest cure all vitamin drugs and threw a hissy fit and said "enough" you all wrote and said dont! For all this i thank you all i couldnt have got through without your help. I have loved the reassurance, the support and the laughters and jokes and the true british spirit of getting on with it and we all help each other. I have even loved the arguments - oh those arguments - some did make me laugh although would have made some of you mad. Sean - thanks to you too, you have been a star. I have finished treatment now, apart from the pills for next five years I am all clear for the time being. My photography has taken off again and despite having to put the camera away last year it has been dusted off and i have a few jobs lined up plus a couple of craft fairs so far to do. I am terribly excited and totally grateful i have this second chance so will be signing off now to get out there and make the best of every day. I have learned so much through this illness and determined not to make the same mistakes again. Thanks Penny also for listening to my whinging about everything through PM you have been fantastic and gave really good advice, i will never forget that. Keep fighting girl and extend that 16 months to infinity. I want to wish you all good healing, laugh lots, eat well and lots of love and hugsxxxxxxxxxxxxxxxx Janxxxxxxxxxxxx

a breast cancer break through

2009-01-12T18:56:55Z

Isnt it amazing, now I am one of those annoying people who are always mouthing off about never having flu or colds and i dont. Just read today in the paper that a Gene has been found which fights flu but may also cause breast cancer. Which is what i have/had and it goes on to say the gene is vital to antibodies that combat such infections as the common cold, but it can turn deadly if set off by the hormone oestrogen! I am on arimidex now for the next 5 years. It was interesting and exciting to read as it proves all the walks we do for breast cancer eg, breakthrough/moonwalk etc and I did do these before i was diagnosed, the money we raise does help with research into this dreadful disease. It would be a miracle if a cure was found for all cancers in our lifetime i hope i live long enough to see that as headlines in the newspaper. Just wanted to share this bit of info to fellow BC ladies. Take care Janxxxxxxxxxx

one down 14 to go

2009-01-05T18:09:56Z

Well, thankfully that was easy. First rads done today for BC. Just a few moments under invisiable rays and off you go, see you tomorrow they cheerfully cry. Compared to chemo its a doddle. See what i say after three weeks lol. But, i am like red rum running down for the last furlong, and aiming for that finishing post to gain my prize, which is another go at life, hopefully i will get it right this time lol. With minus 10 out there its time to pamper myself and keep heating on tonight, keep warm everyone and big hug xxxxxx

and heres my two pence worth too

2008-12-25T09:20:26Z

just to add my little bit to say THANK YOU EVERYONE for all your help and support during this rotten year and yeayyyyy we are still here. WN becomes a second family and i am so thankful for all of you. Heres to all of us for a healthier new year as we carry on fighting the good fight to clear ourselves of this pointless disease. Lots of love to all of you xxxxxxxxxxxxxxxxxxxxxxxxxx

hairy legs

2008-12-23T07:34:30Z

Who would ever have thought that discovering you had hairy legs again 8 weeks after end of chemo could give you so much joy! Not just whispy mind you but they look like an italian footballers legs lol. The hair there was the last to go after chemo (head being first) and first to sprout back with avengence and dark dark brown to boot. Now i can enjoy the girlie things again like shaving them and feeling normal. The hair on the unmentionables is coming back too also dark dark and growing well beyond the bikini line. (sorry for men reading this) but answer me this! Why is the hair on my head growing back white and brillo pad colour - i look like father christmas its covering well at the back of the head and around the ears but this morning I have been examining with mirror to see back and top and the bald bit on the top has gone a dark dirty grey colour which means, hpopefully it will grow again soon as there are folicules under the skin but dingy grey. Well i know we cant have everything and i am SO EXCITED to be growing hair again after 9 months being bald whatever colour it is. Now i am late for work as i have spent a very vain hour finding every wonderful growing hair there is sprouting through and i am not shaving the legs until new year lol. What inane drivel I write, thanks for reading lol. Have a good day everyone xxxxxxxxxxxxxxxxxxxxxxxxxxxxx

OH MY GOSH

2008-12-22T17:53:44Z

oh my gosh i dont know what to say - which is a first for me as i always find something - i opened my googlemail and found messages from Jools, Seanty et al to read my replies - so many of you - i am totally bowled over THANK YOU i have never felt so wanted and now feel like some attention seeking brat lol. I really wasnt and i did get upset over the posting by judyb which i see has now been deleted. What upset me most is that people fall for it, we all know healthy eating is sensible along with the occasional "a little of what you fancy" method but it worried me people would stop conventional treatment in favor of this. I read Senaty's piece regarding caron keating. I didnt know she had just stage l breast cancer and died due to seeking alternative medicines when, as Sean stated, she could be around today had she combined it with chemo/surgery etc. I think the after shock of knowing i am pretty much nasty free for a bit made me think that if i had adopted the alternative route i may not have been still here. Then i think of Penny's courage and everyone else on this site and feel guilty that i am. I seem to be all over the place at the moment it must be the arimidex seeping into my blood stream. I looked at a dogs cute face today and felt tears i am just so rubbish. lol. You are all lovely lovely people and i really do honestly feel honoured at the fact that you took the time to reply and comment on my blog. THANK YOU - I LOVE YOU ALL and wish you a peaceful holiday season, and wish you all good healing - thanks folks. Ok I am back then lol and will take the advice of not getting too involved in the crack-pots.xxxxxxxxxxxxxxxxxxxxxxxxxxx merry christmas and healthy new year xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

time to sign out i think

2008-12-21T18:15:41Z

a massive THANK YOU to everyone on here who have helped me so much since my diagnoses in March 08, on the help through chemo and surgery. Only rads to go now on 5th Jan and of course the arimidex i am taking for next 5 years. You are all stars, are strong and wonderful people. However, i find myself getting so angry with people who post on here who claim organic and vitamins are proved to have cured their cancers. I know i should ignore them but we are all desperate and will try anything to help our cancers but most of us are intelligent enough to know that some "alternatives" may supposedly cure one may kill another, i feel really upset about this. The latest a post from judyb claiming its been proved her cancer was cured by vitamins and diet etc. I think these kinds of postings are dangerous and i must stop reading them and move on with life. So before i get myself into trouble i am now signing out of this site but thank everyone genuine here who has been such a help to me. Merry christmas and lots of love and good healing to you all xxxxxxxxxxxxxxxxxxxx byeeeeeeeee xxxxxxxxxxxxx

cuts and bruises

2008-12-10T14:11:56Z

after being in hospital for 8 days i came out to find i couldnt log into the site again (janisrw) so here under another guise, i requested the password but nothing came baxk, i think it must be a problem with my computer. anyway all went well, 26 lymph nodes removed and partial masec. just to say thank you to all of you who answered my blog before i went in regarding what to expect. It wasnt so bad at all and Barts is an excellent hospital. In fact i actually had a laugh as there were some lovely ladies in there and the nurses were excellent. This all helps in the healing. Post op appointment revealed all the cancer cells had been zapped with chemo and surgery so now its only radiotherapy for 3 weeks. Despite being warned of cuts etc to your at risk arm i managed to nearly slice the top of my finger off on that arm how stupid am i. I drenched it with disinfectant and managed to stop the bleeding after a while and bind it up. Good job i had bought myself a first aid kit i never have a plaster in the house usually. So beware all of you who are about to have surgery for lymph node clearance and breast - buy ready chopped veggies its safer. Now i am worried about lymphodema and reeling in the disbelief of my own stupidity doh!!!!. Thanks for listening to my rants. xxxx