Jo - I think it’s a great idea to get help in and am sure it will be beneficial all round. Nothing wrong in getting someone else to do the heavier/mundane jobs, even if you only do it temporarily. We have a girl who comes in once in a while to ‘blitz’ clean the place just for a couple of hours and I’m going to get her to come in asap to do things like clean our windows (live by the sea and they are filthy at the mo), pull furniture out and things like that. The rest of the time, I throw the hoover round and flick a duster through the air. There’s only 2 of us and we’re not too messy!!!
Think I spoke too soon about my spine after rads. Or it was the ironing I keenly did y’day…was very achy and stiff last night, through the night and again this morning and I couldn’t get comfy. I know it’s temporary and I’m being a bit of a wimp but when I went for zometa this afternoon, I asked nurse there and she said have some painkillers like co-codamol or something with codeine in. So I’ve just had some paracetamol with codeine tablets my OH found in a drawer and am sure that will do the trick. They were actually in date too !!
Have a good weekend all and hope the drier weather holds to let you all do nice things.
hiya all you lovley ladies
just too let you all know ,i spoke with our onc this morning about this and that ,anyway why he was on he mentioned the blood markers that dropped quite a bit, so at that point i thought i best come clean,and say what ive been doing with the sodium and he said good idea and you can do it no problem with the chemo, and he also then told me the same thing i read on the net cancer cant live in an alkaline body!! WHY DONT THEY TELL YOU THAT IN THE FIRST PLACE? YOU GOT TOO ASK YOURSELF WHY? anyway just thought id let you all know its safe, im also not going too mention none of my findings no more as i seem too got myself in a spot of trouble ooopppps perhaps theses people are more worried about there turn over than getting people better just dont ask me. best of luck too you all, love huggs and wishes too each and everyone
wayner eachday passed is one closer too a cure
Thanks for all your helpful comments. I’m enjoying my new help in the house, especially as I have a “landlord inspection” next week. My lovely carer has experience with people with Alzheimer’s so at least she will be able to tolerate my chemo brain. I found myself filling in a form in my maiden name today by mistake. I haven’t used this for 24 years! Hey ho.
Wayne don’t feel discouraged by the moderator’s post. I think both angles are valid. It is really important that we all feel free to share our discoveries, disappointments and enthusiasms, but I guess it is also important for the mod to chip in with the “party line” if they feel that someone may pick things up wrong.
You know, I think that it is healthy for people to feel in charge of what happens to them and that is one of the big lessons on this journey. It is good to learn when to say yes and when to say no, and we can only do that when we research things for ourselves and talk to others who have an adequate measure of compassion and wisdom to help us decide. (You would never believe this but I come from a long line of preachers… Get off your soap box Jo!)
I’ve only just noticed the mod’s post Wayne…I think it’s good of you to share your info and updates and after all we are not children. I’m sure we are all more than capable of investigating all avenues open to us including asking our Onc’s opinion about various treatments, conventional and otherwise. I agree with Jo’s thoughts, it’s always been really important to me to feel that I’m having some input, making my own decisions (as much as it’s possible) about my treatment.
I feel it should be known that I reported the posts and not that this is some kind of conspiracy. I come for an applied biology background with a husband who is a biochemist and a daughter training to be a doctor. I have bone mets.
There is no conspiracy, people are working 24/7 to try to find ways to beat cancer. there have been great strides in understanding this disease, even over the past 5 years, and believe me , when someone does make a big discovery it is shared with the rest of the oncology community.
my view was that some people using this forum are very vulnerable and some of the things that were being posted really need to be discussed with your oncologist, or with a second oncologist if you need a second opinion. The body will compensate when we try to adjust the pH - fact. If the compensation would not put your other vital organs at risk then that is fine, but for some of us the compensation may well kill us. that is why I highlighted this thread to the moderators.
I repeat - there is no conspiracy, just a concern for the welfare of a lot of people using this forum.
hi snowy owl
Thankyou for highlighting the PH thingy. Thanks also to Wayne for sharing his experiences with us. I agree with Belinda, we should make up our own minds. I wandered down a non dairy avenue early in my dx, and was told that my calcium levels were low… didn’t think deeply enough about other sources of calcium. Now, I try to eat reasonably healthily, and am trying to take regular exercise( this has been non exsistant recently and am trying ot put it right by walking more)
x sarah
Hello Snowy Owl and all, I have quite a bee in my bonnet about never wanting to become a passive patient. I’ve met many friends with mets since my own 2003 mets diagnosis. I wouldn’t have described any of them as vulnerable. They were, are, fiesty intelligent women who were living, with the emphasis on living with their cancer. Some took, alongside their conventional treatments, other alternatives that they had all meticulously researched and all to my knowledge asked their Onc’s opinions before then making their own decision. A particular friend tried all sorts of herbal remedies and also received, paid for, healing whilst still taking her Taxotere and Herceptin. I have, so far, put all my eggs into my hormonal and chemo basket. I too believe there is no conspiracy theory and I have always known my Onc and his excellent team are looking after my best interests. I have always been listened to and I’ve always been able to discuss treatments, have some input. But I also don’t believe this is universally the same for all. Some patients are never listened to and their questions are never answered. They are expected to accept their treatment passively. I would not have made the same choices as my friend but I do know she strongly believed she was having a vital input into her well being, her life, she was making her own choices, taking her own path. That’s surely empowering. She was such an intelligent, vibrant young woman looking at all avenues and ways of staying well, alive, for her young children. The BCC response in this thread was surely, however well meant, stating the obvious. We may have cancer but we are all grown ups now and we still retain all our marbles. It’s important, I believe, that we are treated as such. Eventually we all find our own unique way of living with cancer. Good Luck to us all.
Just my thoughts…(gets off soapbox and starts to tackle ironing mountain)
Best Wishes to you all.
A quick report back on the radio blast effects. Remember I said that I had less pain straight after? Well now it has zoomed up. Maybe my body has had a delayed reaction. It is manageable and I don’t really want to mask the pain as I won’t know when the radiotherapy starts to work in a week or so or whenever. Does this make sense? I’m used to “listening” to what my body is telling me, so I tend to make these sort of decisions. Liz how has your response been? Did your pain increase at first?
ok snowy i hear what your saying but as belinda says we are all different and have different responses too drugs good or bad, with mets like it or not all of our backs are against a wall and we ALL NEED TOO LOOK FOR A WAY OUT OF THIS S**T!!! as its no ones fault we find ourselfs where we are!!! again i must agree with belinda we are all grown ups and quite capable of making our own desisions, conspiracy or not , EVERYONE HERE ASK YOURSELF AND BE HONEST HAVE YOUR ONC EVER SAID CANCER CANT SURVIVE IN A ALKALINE BODY?? we have had no less than 3 onc and they all must know it cant but NONE of them thought or had the sense or balls too tell us IT CANT!! which makes me really angry, and when i pressed him on it yesterday he also said, and i quote( SODIUM BICARBONATE IS A STRONG ALKALINE AND THERES NO HARM IN USEING IT)weather any of you use it or not dont make a blind bit of difference too me but too give somebody a chance too use it who DID NOT KNOW NOTHING ABOUT IT FOR ONE REASON OR ANOTHER surely its there right !!!and why im my soap box you also got too ask yourself micheal douglas who is stage four have the all clear all of a sudden ,now i was always led too believe once stage 4 always stage four, but odviously not for him?? as i said before, they can send people too the moon and too the deepest parts of the sea and now planning on mars and they cant find a cure for this ? so im open minded about it all and nothing will supprise me, ive had a few of you lovley ladies ask me too carry on with results in this forum and if thats what they want i got too say the many out way the few, nothing against you snowey, and you should be aware when it comes too new drugs if it cant be patented so they can make looooooooads of money you got no chance of getting it, even if THEY DID KNOW IT WAS A COMPLETE CURE ,anyway love and huggs and wishes too you all,
wayner each day passed is one closer too a cure
Hi Wayne, yes I too would still be very interested in receiving any news, results, updates. Thanks.
Hi Jo…I think I was the same…I had my last rads a few years ago but I remember thinking oh what a doddle then the pain kicked in a few days later…but it was very short lived. Hope this soon passes.
Jo - yes my back is suffering the after-effects of the rads too and worse than on Thurs and Fri. I was warned about this happening and know from when I had rads to chest wall 3 yrs ago that the ‘cooking’ goes on for a while and bites you on the bum when you think you’ve got away with it!!! Having chatted to the nurse giving me my zometa on Fri, I started with the paracetamol/codeine tablets that night but during last night, even they weren’t hitting it, although after cleaning our kitchen windows today and having another pill dose, it’s eased a bit !!! I’m going to ring rads tomorrow if it’s the same cos the packet says only have for 3 days due to their addictive nature. Think I may have to get emergency GP appt for a prescription. I too don’t like taking painkillers as I want to know what pain level I’m at and not masking it and doing something to make it worse but needs must for a few days perhaps!!! Let me know how your pain levels etc go and we can compare notes.
Hadn’t intended to post about this as I felt like I was being a wimp so thanks for your post Jo, although I’m sorry about the pain you’re having.
Thanks Liz. I will go and clean my windows straight away. Or is it just cleaning your windows that works? I think you live rather far from me so maybe not!
Yes let’s compare notes as we go along and be wimps together!
Oh Liz you are never a wimp. I can see my kitchen windows from where I’m typing…it is really, really foggy today isn’t it?
Good Luck to all window cleaners…I promise to clean my windows soon…ish.
It may work on anyone’s windows but then again perhaps not!! I am a little concerned they put something extra in the rads as I have since done my ironing, hoovered round, swept and scrubbed the stair carpet and now cleaned the windows…worrying!!!
Think the pain is something to do with the fact that after the cooking, you get some swelling and the whole area zapped(and in my case a bit more above and below - don’t know about you??) is very tender and takes a while to settle down and become less ‘sensitive’. I feel like my muscles next to my spine are constantly tensed up and that doesn’t help I’m sure. Got the arnica gel out to help - I swear by it.
Just some info for Wayne, re Michael Douglas.Stage 1V breast cancer is always incurable/terminal-but the cancer he had can be “cured”, even at stage 1V, so the information may indeed be correct. Some cancers can be cured-and one day, even stage1V bc may come into this category. But as there are so many variations I suspect that a cure will be several generations away still. I’m quite sure there is no conspiracy-a cure would be worth more than all the treatments. We have to trust the professionals to do their best for us, whilst questioning and researching alternatives to the best of our ability-we can’t expect our oncologists to stay abreast (no pun intended), of all the research in all the fields.
I wish they had put something in mine!!! I certainly don’t think either of you are wimps. I had 5 sessions of rads to my lower spine, and 5 to my hip a couple of years ago (maybe 3 now) sadly none of it helped. I remember that time getting nausea too which they had warned me about. I had the choice to do the separate areas following on frome each other, or both at the same time. I went for the latter. 2 years after that things got worse again so I had more scans etc. which showed that actually it wasn’t my bones causing the problem but a tumour growing alongside the lower spine and involving the nerves that exit there. They thought I was fine for more rads which would have to cover the same area of spine, but more to one side of it to take in the tumour. As time has gone on the area covered has left what I can only describe as a bad burn mark. Again nothing has helped with the pain, though hopefully it has roasted the tumour! So I just have to keep taking the pills. I know what you mean Liz when you say about masking the pain in case you needed to know. But honestly it is better to make sure you take enough meds for the pain.
I hope you both have really good results from your rads.
I think there might have been some talking at cross purposes. I don’t think anyone is necessarily disagreeing that cancer can’t survive in an alkaline environment - I think the question is whether it is possible to make our tissue alkaline by eating an alkaline diet. I don’t know the answer to this - various doctors that I’ve asked(not necessarily oncs) have said that urine ph tests do not reflect the ph balance in tissue, as urine is a waste product, and that the body’s natural balance system makes it impossible to get a highly alkaline environment. I do remember reading some time ago about some very early research on this topic (using cesium I believe)that had some success but some very serious side effects and wasn’t followed-up - I’ll see if I can dig it out for you.
this is the last post I will make on this thread.
there are many people struggling to come to terms with their diagnosis of bone mets. they do not take an active part in these threads but they read them. they are vulnerable - whether you like the term or not - and as such should not have friends and family of other people with bone mets shouting at them through a post on this thread (by writing in capitals).
I hope that this thread will not lose its direction, but I do feel, and know that I am not alone, that friends and family should be posting on their own threads and not taking over threads that are supposed to be offering mutual support.
Yesterday my sister gave me a little make up mirror. On the back was the motto “Keep calm and carry on”. That is what I intend to do now and hope we can keep the positive vibes of the thread uppermost… I’m not being a Pollyanna and I understand the principles at stake. This is a great thread, and I have already made some lovely cyber friends here!
So back to rads and windows. I hadn’t thought of Arnica. And I still haven’t bought any Aloe Vera. Thanks Dawn for the advice and I will try and sort out my meds tomorrow. I need advice as I can’t take paracetamol at present with the chemo. I better start up my anti-inflamatories again until I see the onc next Thursday. I just don’t like what they do to my stomach, even though I take them after food.
Did anyone catch the article in g2 in the Guardian “How cancer transformed me and my poetry” about the poetess Jo Shapcott who won the Costa award? I thought the bit about euphoria was interesting… Perhaps it is “creatively euphoric” housework you are doing, Liz.
(Mind you I wasn’t keen on the poem alongside the article. Didn’t leave anything to the imagination. Give me TSE anytime. But then I am fussy)
I can see my kitchen windows from where I’m typing…it is really, really foggy today isn’t it? 