General Chat

It is always adviseable to ask your specialist nurse/oncologist/haemotologist before trying any natural remedies. We even have to be careful about some day to day foods, when we are having chemo, or recovering from it. Silly sounding stuff, like pepper...... I am still reluctant to put it over my meal, but will now have it cooked in foods.

I reacted very very badly to lavender oil when I was recovering... I had particularly nasty *chemo burn* which was like a severe sunburn.... so I did a very very mild lavender in almond oil, one I have used many many times with no ill effect, to add to the Oilatum. The tiniest amount, just one drop of oil in the almond oil, and then shook up, and about a teaspoon of the mix added to the small container of Oilatum, that was all, and I was in agony within minutes, before I had even finished the shower. I had to pull the emergency pull thing, and then half a dozen nurses arrived to hose me down. I was put straight onto intravenous antihistamine... that was me zonked out for a couple of days.

So please make sure that you check before embarking on any herbal/alternative treatments. Rather be safe than sorry.

There have been some interesting developments with an oil... just an ordinary oil, but can't remember which one at the moment.... for treating Lymphomas and Leukaemias..... but it will be a little while before it is in use... I shall go and google it and see if it leaps out at me!

Love

Daff xxxxx

Lpc, that would do your dad and mum good if they get a break, may be able to switch off from appts etc. for a few days. That would be a help to if they get some travel allowance. It can be very costly being sick. I didnt know there were things to help ppl , thats very good ,hope they get the help they deserve.
I have heard about the make a wish appeal, my daughter did a abseil off the humber bridge to raise money for that
charity quite a few years ago.
love to you all sylvia

Hi Daff, good advice
You must have been in agony with the reaction to lavender oil. you seem to have been through so much, how are you now. You may have already said on here ,so forgive me for asking, my memory is terrible now ..sylvia

I am always struggling with tiredness and fatigue. Some days it is so bad that it is a struggle to keep my eyes open. Haven't been sleeping too good either which is a pain cos that just adds to the tiredness. Dr gave me sleeping pills, mild ones, but I stay away from them cos I don't like the taste they leave in my mouth all the next day, so bad I can't taste food. Yukky : )

Sylvia, my chemo was extremely intensive, one of them is used in other cancers, at between 60 and 100 mgs a go, and up to 3 weeks apart. I had 200 mgs per twice day for 10 days (plus others) then a 3 week break, then 8 days of the same, then a couple of weeks later (in my case a couple of months cos my bloods didn't come back up) 1000mgs a day for 5 days, plus 2 others.

However, I was lucky, as I didn't have radiotherapy, nor did I have surgery. Well, it was the bone marrow, so as more than 50% of my marrow was cancerous, it had to be zapped hard.
Hiya Sylvia. To be honest, it didn't feel as bad at the time, because of all the drugs you take for the side effects, They have a sedative effect, most of them. So I spent a great deal of the time dozing. Everything was made manageable. So although I went through the mill a bit.... I was mainly cushioned from it. Looking back over it is, I think, scarier than going through it, which is so difficult to explain unless others have done it as well. The hardest bit was the C Diff I contracted!

As Annie said, it is the tiredness that is difficult. It is hard to describe it, but it is totally overwhelming, as though lead has been poured into your veins. I still get bouts of it out of the blue, and if I try to do too much, but it is improving. My main problem now is impatience!!

Annie, my sleeping has begun to improve over the last couple of weeks. But I am a while down the line from treatment, and of course yours is constant. Have you spoken to your Haemo? Or your GP? As I don't work, it was fairly easy for me to take myself off to bed for an hour or so in the day to catch up. I found that I could only sleep in two or three hour snatches, maximum. And of course it is the middle of the night when all your fears tumble around your ears, which makes it even harder to doze back off. I hope you find an answer.... maybe there is a different sleeping tablet you can take?

Must go.... have a counselling session at 10.30.... it is in Cardiff, and is a bit of a pain parking in that area.

Brenda, I'll look out for that book, thank you.

Take care, and enjoy your day, everyone.

Love

Daff xxxxx

I think I slipped through the net with regard to any help, psychological or otherwise when I had treament with chemo 20 odd years ago. I was offered none. Ths hospital social worker cam to see me and I asked about allowances because my sick pay was used up, and i was told no, we would have to manage on OH's wage, which was so low we qualified for housing benefit. When I had my breast off 8yrs ago there was still no assistance. I think that they take one look at me and say, she is big enough to take care of herself, and on the whole thats true, but I have always talked about the fact that I survived.

Home from work today, have not been feeling quite right. Got up with OH this morning to have brekky with him and when he left I had a quick look on the internet and went back to bed, just getting up a short time ago.

Daff you are so right about the fatigue. Some days it hits me really hard and other days I am ok. Feeling ok at the moment, but can feel a headache coming.

Off to the dr's this morning to get a med cert for work. Am going to talk to him about some of the medications, see if theres anything else i can have.


One other thing I have noticed lately is anger. I get very very angry quite quickly. I have said some horrible things to OH and he to me. I don't know where all this anger is coming from. Doesn't seem to be anything in particular will set it off. I can feel myself getting angry but I can't stop it. Another reason why I want to see the doctor, maybe he can help.

Annie
xxxxxxxx

Daff, you must be so strong. All that chemo and so intensive. How long ago was that.
I had chemo just once a week , for 36 weeks , that was about 4 and a half years ago and I still get so tired, but also cannot sleep at night partly because of night sweats. I have had 3 further surgerys since then, but no chemo. only radio iodine treatment, so cannot understand why I get so tired. Maybe I am getting lazy lol. any idea if this is normal .sylvia

Sylvia, that is absolutely normal.... google Macmillan, and pop into the membership boards (you will be able to read, but not post unless you join) and then click on one of the groups that has your cancer... in that will be the experience of lots of others, who have been there, done that... or are asking the self same question right this minute!! But rest assured you are definitely not getting lazy... even paracetamol makes people tired, imagine what the toxic drugs are doing! Please remember that in order to heal you, your body is being bombarded with substances that are very toxic to it.... and it takes a toll. Also, because more and more people are surviving cancer, *they* are really only just beginning to understand the long term effects of all this chemo and blitzing and stuff. We are all guinea pigs, to a certain extent. And in some instances we just have to accept that there are no answers.

Oh, and my sweats are just beginning to ease now... haven't had one for about 5 weeks so fingers crossed.

Your cancer and it's effects, short term and long term, are as individual as you are as well.... so you will feel different things at different times to others, depending on your body's response... you may just find it more difficult to recover from coughs and colds for instance, so will need to love yourself and spoil yourself just a little bit more at those times. (((((hugs))))) Oh... and I finished my last chemo last February, but spent all until end of March in hospital attached to drips and things. I felt like a refugee from Casualty, lolol

With AML there is no time to pussy foot around, it really is kill or cure, especially with my brand, and very very quickly lol.... there are a couple of types which have cytogenics which mean the cancer can be specifically targetted, and they have a very high success rate... there are others where some can still be successfully treated, but it is more difficult to do so, and there are lots of new experimental treatments which are showing great promise, with this group, but are undergoing testing now.... I fall into the *normal* range, which sounds great, but actually means they don't know, so tend to throw the works at you. And the success rate is equally erratic! It is why I am being so closely monitored... and others like me, of course. So, my treatment didn't go on over a couple of years.... 6 months max... no tumour to be irradiated or cut out... it is the bone marrow itself which is cancerous, and 56% of mine was when I was diagnosed. But I had an excellent early remission, so that is in my favour.

Annie, your anger is a normal part of your coping. You may need to have some counselling to learn how to deal with it, or channel it appropriately. I am having that counselling myself. I am not angry at my illness, but at my old GP for ignoring me beforehand. I think I am going to have to get closure on that by insisting on an apology from her. You will need to find your way. Your Specialist nurse or GP will know of an organisation that will offer you that. I got mine through a local cancer charity called Tenovus (Jean, they are brilliant, and if ever you feel you need them, please just ring them up, although you would probably have to go to Cardiff for it, but they do telephone counselling as well...) but there is certain to be something in your area. Maybe not specific to CML but more generalised cancer. The difference with CML of course is that there isn't going to be full, everlasting remission, and you are having to deal with that, which is so very hard to come to terms with. I will try and google and see if there are any organisations in your part of the world, specific to CML/CLL etc.

((((((hugs))))))) for you, too.

Love

Daff xxxxx

Annie..... I have found these. Please please phone them... god I am getting sooooo bossy!!

The Leukaemia & Blood Foundation of New Zealand
Freecall: 0800 15 10 15
Email: [email protected]
Website: www.leukaemia.org.nz ; www.lifebloodlive.org.nz

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The Leukaemia & Blood Foundation of New Zealand provides education, information and support for patients and their families living with blood cancers and conditions. The Support Services Team can provide one on one emotional support, as well as practical assistance and an online support and information forum.



Note that they offer one to one support.... good luck!

Love

Daff xxxxx

Daff...
I think you are a marvellous support and inspiration to all those who are suffering.You are sooo genned up.
God bless you and keep you well.

Brenda x x

Thanks Daff, will look into that.

My doctor is also a trained counsellor so he is really good to talk to . I will be seeing him again at the end of next week to discuss in more detail.

(((((hugs to all)))))

Annie
xxxxx

Daff, thank you so much, you are good to talk to. I can tell everyone not that Daff says I am tired not lazy lol. I agree with Brenda you are a marvellous support to us all..........sylvia

I have been feeling a little better having all you guys to talk to. Helps to take away some of the stress.

Annie
xxxxx

really please you all feel you can add your feelings and support each other xxxx

Morning all..

Brenda and Sylvia, thank you, you are very kind... but at least I have a chance to edit when I write, lol... and I am just walking the same walk as everyone on this thread. I get really bad days, when the lead is in my veins, and the energy just isn't there. When I snap at those dearest to me, and when I don't suffer fools and idiots very well - by that, I mean bright people who should know better, not people with learning problems, or whatever - and snap at them, too. Some days I can be over- sensitive and see insult where none was intended, too. So I am really just the same as all of us. xxxx

I have become very interested in the long term effects of cancer.... the treatment is over, and so now we have to get on with it... *you are still alive aren't you? Then be grateful* sort of attitude is often one that we are faced with from family, friends and even professionals. So we begin to believe it... why do we still feel so rough? Why are we so worried every time we have a twinge... is that the cancer coming back? We then start to believe we are being silly, hypochondriacs, worrying over nothing, must pull ourselves together. And that is stressful in itself.

To be able to hear others say, *yes, I feel like that too, and I used to get that but it went* or whatever,, we realise that we are normal, whatever that is.

One thing I will say here and now, is that the word *normal* is different for us... cancer fighters, cancer survivors, and their loved ones. Plus others who have a sudden cataclysmic event that has changed their lives dramatically.

Our *normal* has done a massive shift, as big and chaotic as any earthquake. Our lives will never ever be the same. We feel different, our fears and worries and concerns are different, our pleasures are different... we tend not to take things for granted any more. It isn't all bad change, by a long shot.

There is an awful lot of really good, positive stuff in that monumental shift. Learning what is important in your life, and getting shot of everything that isn't.... in a manner of speaking. Taking each day as it comes and treating it for the beauty of that day, that moment. Finding the time to stop and smell the roses, lol.... and if you are not, then make that time... if you are not, then you are not treating yourself kindly and with the love and care you deserve from yourself.

I really am getting into being a bit of a bossy boots, aren't I? lol....

Take care everyone, and have a lovely day.... or a full night of peaceful and restful sleep, Annie, lol xxx

Love

Daff xxxxxx

I couldnt have put it better myself Daff. I am not very good at putting things into words, but you obviously are, and I thank you for saying it for me.
take care of yourself
sylvia xxxxx

You are welcome, Sylvia... night night xxxx

Love

Daff xxxx

Has anyone had problems with mood swings?? I find that one minute I am really happy and then the next am so low that I don't want to be here anymore. It is a constant struggle to try and find a "middle ground".

How do others cope?

annie from what ive seen its normal love, your mind can play terrible games when ever you feel like that you can pm me or chat on here, im generally a very happy placid person i have chronic bad health and some days the pain is about to push me over the edge hope your ok xxxx