Hello everyone, just been reading through the posts on the last 3 pages - such a variety of issues being faced by us all; so much we need to share and know about for the future. This forum is helping me to come to terms with my diagnosis but I do struggle a lot some days, especially when i just don’t feel like eating (deffo not me at all!)but then I read what others are coping with and I realise I am not doing too bad at all, I can control daily pain, get out and about, drive a bit (normal car still) and travel, so yes putting myself first with the support of my family and friends. I’m retired but the thing is I still want to be/feel useful but don’t know what that useful can be? On bad days, I’m afraid of committing to anything ‘just in case’, on others I could stand for PM!! and sort out the NHS!! Thanks for reading/responding, it does help. Any food/diet tips would be gratefully received!
Welcome Maydowell, It does take a while to get your head round it all and understand the technical terms, treatments and the fact that the cancer has spread. When I first knew there were no forums to seek help and assurance and I felt so alone as I didn’t know a soul who had bone mets. But that was 13 years ago now and I found this site only a few years ago when I was searching for some information.
We are a friendly lot and are here to support each other and to look for help if we need it,. So please keep on posting so that we can get to know you.
I don’t have a great appetite either right now. I am taking chemo tablets and I find “little and often” is much better than trying to eat a large plate of food. The upside of this is that I have dropped a dress size without actually dieting ( I have never done dieting in the past). How about a milk shake with ice-cream, milk and banana, or banana on toast. There are special drinks to help boost you it you cannot eat but I cannot say I liked any of them!
How about volunteering in a charity shop. I helped out at Shelter and more recently at Cancer Research shop. If you don’t have much stamina they may even make an exception and agree that you can pop in for a few hours on your good days. Or offer to go in for a half day a week if that suits you better. The charity shops even have specialist shops which only sell books or records and if you have an interest in any they may be worth looking out for.
The Blood Transfusion Service often have people to help out at teas to give donors juice, tea and biscuits after they have donated. But I am sure there are lots of different places who could use your help. Why not look on-line? I agree with you about sorting out the NHS. Did you work for them in the past? I too am retired. I had to retire early on health grounds but it is the best decision I made and I never missed my job. I did miss the lovely ladies I worked with though. All the banter and gossip!
Sorry to rabbit on so much. My OH is hoovering the carpets and I am keeping well out of the way! Love to all bone mets ladies. Val
Dear Scottishlass and Thumbie,
Many thanks for your encouraging words. Really kind of you. May we all live well into our nineties in Jesus name(amen). I currently use oxycodone and ibuprofen for pain relief, sometimes isn’t all 100% efficient. Might need to increase dosage and speak to Dr at next meeting.
What do you guys think of the essaic tea and cottage cheese/flax seed oil? Ever heard of the benefits of usage during chemo? Any advise or thoughts will be appreciated.
Itiswell.
Don’t know anything about them sorry. But I do think we should eat a variety of good food. I don’t believe any of the special diets that are around. Suggestions one week that this is good for you and next week it is not. I don’t buy ready meals myself and have home cooked food most days. I make my own soup but now and again I fancy a bowl of heinz Tomato Soup so I have it. But not every day if you see what I mean. Sometimes we eat out, Chinese or Curry or fish and chips but not often. I like fresh fruit and fresh veg and occasionally make my own bread or scones and cakes. Would do it more if I had more energy. I do think you can eat and drink most things in moderation. I don’t believe in diets (unless someone is really obese and needs to diet/give up drinking for their own health. But perhaps someone with a different view will come along with a different opinion. We are all different. Good luck in your search about the tea and the cottage cheese. Val
Hi Itiswell,
I don’t know about cottage cheese and flax seed oil. Tea in general has antioxidants and I believe it is felt to be a healthy drink. I don’t know about the tea you mention. I drink roobois tea because I can take it without milk. In fact I much prefer it now. Sometimes I have green tea. I have heard health claims for both but agree with Val that lots of different and contradictory things are recommended so it is really hard to know how valid all the claims are. I tend to think that a balanced diet is best with plenty of fresh fruit and veg and sometimes a treat! I did give up dairy products for some time when first diagnosed after reading Jane Green’s book which seems quite convincing re the comparative rare incidence of BC in countries where they don’t traditionally eat them. But then, for us bone mets folk it is probably important to make sure we get calcium, and after the menopause there is osteoporosis to consider too. So I went back to dairy but in moderation (anyway, I love cheese!).
Best wishes
Ruth (Thumbie)
PS I have just reread your post and realised you mentioned specifically using the diet during chemo. I really know nothing about that, but it’s possible that bland foods are more easily tolerated.
hi Itiswell
I did try essiac tea when first dx but hated the taste of it.The problem with foods during chemo is that the taste buds change so you tend to stick with things you can tolerate.My chemo diet consisted of ginger tea (helped with the nausea)ginger biscuits and ice lollies to help with sore mouth,also found chunks of frozen fresh pineapple really good for the sore,dry mouth.I added chilli or curry to soups to try to get some taste into them but a lot of people cannot stand spicy food.Not sure but I think cottage cheese could be on the banned list for chemo along with brie and live yogurt.
Good luck with your treatment.
L xx
I did not suffer at all with food taste changes during chemo, but lately there has been more and more talks about fasting the day before chemo. I have been sent a couple of podcasts on the subject which I haven’t had time to listen to and as chemo is now behind, I have less urge to find out what I should have been doing.
Hi itiswell
If you look up ‘Budwig protocol’ you will get lots of info about the flaxseed oil/cottage cheese diet. I think they are both fine during chemo as long as the cottage cheese is pasteurised. If you find that your chemo gives you an upset tum I think you may well find that the Budwig protocol makes it worse so you might want to try it out with caution :-S
I was sent some essiac tea by a friend in Canada. When I made it up as per instructions I found it tasted horrid and has a slight gelatinous texture - yuk! I have been taking something called ‘flor-essence’ since which I find much easier to swallow. Don’t know if it does any good though.
Flor-essence and essiac are supposed to be quite similar. This link explains how they differ/ are similar
cancer.gov/cancertopics/pdq/cam/essiac/patient/Page2#Section_23
Hope this helps
Cheers
Mx
Big thanks ladies, really grateful for your insights and opinions. They will definitely come in handy. A little all over the place now in my head and wonder what you guys will do in my shoes.
Got laid off a few months before my dx, I am about to go for the final stage interview for a role I’ve always wanted. Worried I’ll have to explain about my dx to them as I take chemo once a week and some other treatments that may come up to. Do you think a new employer will take me on board with all the baggage? Don’t want to mess up my chances and I feel some sort of work will help take my mind off things & give me some sense of normalcy.
Don’t know what to do!
Itiswell.
Hi Itiswell - you know you are covered by disability discrimination act - have a look at that and see what rights you have. My employer has been amazing - wishing you lots of luck with your interviews crossing everything for you. X
Hello all,
I haven’t posted for a bit. I have my operation tomorrow, background is I had PET/CT scan in December which showed something up in my last remaining ovary. Was told it was probably BC spread although since a dermoid cyst has been mentioned in passing. Lymph nodes up in my groin also. They are going to take everything away, a full hysterectomy so I’m a bit scared tonight. I feel everything femine is being removed, I’ll just be left with one breast but I suppose it is all for the best.
Claire x
Big hug Claire, will thinking of you tomorrow.
Claire sending you lots of love and hoping all goes well with your operation. No wonder you are feeling as you do. I have not had a hysterectomy but when I was 39 I had a chemo regime that stopped any hope of having any more kids. I thought I would feel less feminine too. But you know what I don’t. I feel good and my OH says he doesn’t care what I look like he loves me the way I am. I still fancy him and he has got a big belly now! So do not lose sleep over this. You will get through it and we will be there for you to help you through any hiccups you may have after your op. We are there right beside you. Much love and all the best for tomorrow and hope you make a speedy recovery. Love Val
Claire
sending you a hug and wishing you all the best for tomorrow.We will all be holding your hand.
L xx
Hi Claire
I don’t usually log on in the evening but I have tonight and just read your post. Sending you big hugs and, as Val says so well, we are here to help you get through.
Good luck with your op and a speedy recovery.
Nicky xx
Claire will be thinking of you tomorrow. Hope it all goes well.
Itiswell, I would like to think your situation won’t influence their decision. My understanding is that stage 4 peeps are technically disabled, and therefore covered by the Disability Discrimination Act. Also, employers are a bit more enlightened these days, so my guess they will be evaluating you purely on the basis of your skills/experience. Good luck.
Just a quick one to wish you luck tomorrow Claire, hope the op goes well and your recovery is speedy. It is difficult when we lose our womanly bits but as you say it is for the best.I haven’t had a hysterectomy but I did have overies and phallopian (sp?) tubes removed,don’t feel any less female so hopefully it won’t be too psychologically difficult for you.
We will be thinking of you and here for you if you need us, love Julie x
Just to wish Claire good luck for today, I haven’t hystorectomy but did have ovarian ablation last October aged 34 so i know where you’re coming from but like Val said I actually feel no different and my thinking is if it helps then so be it.
Joanne
Oh Claire lots of love and luck xx I’m a bit late saying this as you will have had or be having your op today. I can’t imagine what you feel like, but being in a menopause young doesn’t make that much difference to me. I had a fat bum before and now I still have a fat bum! Hope you recover nice and quickly xxxx
Hi to everyone else, hope your week is going well. Xx katy
Hi everyone, Got great news. My daughter got her results today from the needle biopsy. It was just normal tissue so no treatment needed. She is still being referred to the Genetics Clinic for a chat. So pleased that she was sensible enough to get it checked out and delighted that her results were what we had wished for.
Raining on and off all day here. Have been diddling about al day as my OH was out walking with his best pal. So birds all happy as fat balls and nyger seeds and feeders all filled. No need to fill water as rain doing that for me. Leg and back sore today but think I just overdid it yesterday. Now going to have a lie down just to rest my back and get back to my good book. It is called “Jessie’s Journey” by Jess Smith and is about travelling family who moved about Scotland looking for work and 8 daughters on tow and travelling in an old bus. More of a memoir but her wee stories are great. Any of you with a Kindle may be able to access it ( not that I have one myself).First printed in 2002.
Thinking of Claire and hoping she is in recovery and will be back with is soon. Lpove to all, Val