General Chat

Florence, you lived through it with her... my opinion is quite controversial... and please remember that I am talking about MY cancer and treatment, which was extremely aggressive, it has to be.

I had loads of drugs to counteract the effects of the chemo, and other drugs to counter the side effects of the drugs for the side effects, lol... read the labels on all of them, and you will see that most of them state *may make you feel drowsy* Drowsy? I was in my own little happy fairy land some of the time... so the effects of the treatment were very much dulled, and seem almost dreamlike looking back.

What kept me going during the very very worst couple of days... believe me, dying was much easier than staying alive for a couple of days towards the end of my treatment... but what kept me going was waking up, to my husband, just quietly sitting there, reading a book or doing the crossword... he sat throughout the visiting times, every single day that I was in... he really kept me going just by being there, and not even saying a word, just stroking my hand or helping me to drink.... but it was very very hard on him, watching me and knowing how close things were.

So, Florence, this was your little girl, your baby... you have as much right to be on this thread as anyone. You were her reason for fighting, I am sure. (((((hugs)))))

Love

Daff xxx

Florence if you dont mind staying on the thread we would all love you too, also there will be others that you will relate with and visa versa, and this is intended for relatives too, ive not had cancer (just waiting to see doc for crusty mole) but close family have , as long as it dosnt upset you why not just pop on for a chat now and again keep us updated with your darling daughter too xxxxxxx

l am on Warfarin tablets and will be for the rest of my life. l have to have blood tests done every few weeks to test the amount l have to take.
I am not allowed Broccoli or Greens (dark greens )nor am I allowed grapefruits or cranburies or cauliflour because it is part of the Broccoli family.there is quiet a list of food and drinks l am not allowed because they will thicken my blood and that is what they do not need. l have to a carry a yellow card around with me telling medics l am on Warfarin because if I cut myself they would have a job stopping the bleeding. l have a Cat scan done every three months .to see if I need to start back on my treatment this involves giving myself injections three times a week these make me feel tired and l have sweats and shakes infact l feel quiet ill for a few hours. but it keeps me alive.

Rita

Not you, Daff:-)))

daff and puss thanks for you support. yes i will contribute to this thread and im not upset. i just didnt want people who had read my story before to think why was i repeating it again, but my mistake.i guess daff i am like your husband really, as i sat for 24/7 for 9 months soothing and doing whatever i could to take her pain away just as any mother for do for her sick child or partner for their loved one. your husband must be a tower of strength and a diamond of a man. there are many that have walked and during my stay in hospital, i witnessed at first hand the breakdown of some relationships,becaise they just couldnt cope with it all.

i am lucky in the sense i am very strongwilled and determined always have been. no challenge ever gets me down. i had a tough life growing up and it made me very independant from an early age. those in life who had it all from the day they were born and never had to stand on their own two feet, can often grow up weak and unable to cope in a crisis. those of us who had to do more for ourselves, i believe are made stronger and thats why we cope better.

of course there are exceptions to this and our personalities dictate who we areand how we are made i guess.

i would like to just say this about the person who came on recently to try and disrupt this thread. firstly i dont know who you are and although anyone is welcome on here to make coments or offer advice, what i dont expect is someone looking to deliberatley cause an argument. if you have nothing relevant to add here then please go and rant somewhere else. its not the place and some people will find your comments upsetting on what is a very sensitive subject.

Hi everyone,
Let us keep on supporting each other on this thread, it is so good to be able to talk to each other and share our thoughts and worries, knowing someone is always there to offer support and actually knows how we feel is a great comfort to me. thinking of you all x

Did any of you or do any of you have headaches/migraines as a side effect of your treatment? I get them quite a lot, am on glivec, and know that they are definitely a side effect of the treatment.

how you cope with the headaches?

Hello, Florence... yes.... you and my hubby are diamonds... and all the carers like you. Not the ones who breeze in for 10 minutes, and have to talk to you, and expect a response or complain that every time they visit you're asleep, but the ones who come in and sit quietly, or bring special treats to tempt you.... carefully choosing them so that they do not have to be thrown out, lol

Yes, Annie, I had severe headaches, to answer your question... it is the side effect of quite a few chemo's.... my sister and brother also had them, so we have taken it as read that this stems from the treatment.... sister came off all her drugs 18 months ago (Tamoxifen), brother after his stem cell transplant 2 1/2 years ago. We still get them, but only occasionally now. I get more of a *heavy head* a sort of fuzzed feeling, where nothing seems to sit straight with me.... on one site I belong to, they refer to it as *chemo brain* lol

What we have to remember, is that we have been fed/are being fed very toxic drugs... they need to be strong to kill or subdue the cancer. So we are almost bound to have the effects with us for a while... in your case, they will need to be managed with painrelief, until your body adjusts to the chemo... a couple of painkillers and a lie down in a dark room is how I cope, but mine are easing, your chemo is and will be ongoing. A friend from hospital days swears by chamomile tea, so that might be worth a try. Our anxiety doesn't help much, either, does it? But please mention it to your doctor or Haemo. Or even ring your nurse... they will be able to help you.

But... do you take painkillers now? Because headaches are also a side effect of those... I am not suggesting you stop, just mention it to your specialist or doctor next time you are there... they may be able to suggest another painkiller. Or a stronger one. Sad though it is, and it certainly takes adjusting to, but we have changed... our bodies react differently, and we have to readjust our perception of what is *normal* for us. That is where the grief comes in.... we are grieving for ourselves.... and that is a very strange place to be in, isn't it?

Sylvia, yes it really is important that there is somewhere folk feel comfortable to ask questions as well.... | know there were loads of questions I didn't ask... you forget when you go (Chemo brain again) or feel silly... it was ages before I mentioned that I had lost my sense of smell, as it felt so silly...... but of course, it wasn't and isn't silly, as it has hugely impacted on my life.

I also have a permanent nose bleed... ever so slight, but uncomfortable and sometimes embarrasing. It has made my nose very very sore.... anyone else get that? I had it before I had the tubes stuffed up my nose, lol, otherwise I'd have blamed that.

Well, have a wonderful day.... it is going to be bright and cheerful here. I can feel it in my bones.

Love

Daff xxxx

Here are two websites.... they are full of information.... the Macmillan site is excellent for good easy to understand basic information on most cancers..... it is a British site, so some treatments might differ slightly... but I am sure there will be a similar site in your own neck of the woods, lol

http://www.macmillan.org.uk/Home.aspx

Annie, this one is for you.... they are excellent, again, UK based.... but I am sure there will be something like it in NZ......

http://www.leukaemiacare.org.uk/1/home.html

Take care

LOve

Daff xxxxx

Carol, it depends on the cancer.... with leukaemia, I had no contact with the surgery for about 10 months, so everything was arranged through the Macmillan specialist nurse at the hospital.

So, I would suggest that your friend has a word with the GP, and also with the Macmillan or specialist nurse, plus his oncologist. Depending on his age, he will, or should also be referred to a specialist Social Worker.... they will then start the process of assessing his needs etc

It is a very sad fact of life, that your friend may well have to do a good bit of chivvying and chasing up.... keep on the case so to speak. The Haemotology unit at University hospital were superb... and the specialist nurse practitioners were on the case straight away arranging transport etc, but I am aware it is not all like that....

so... three pronged approach, GP, Oncologist and specialist nurse.

Also... I can't tell you how brilliant the Macmillan helpline is... and there is someone (qualified nurse) on the end of a telephone to advise, plus different forums (I know, bad grammmar) for different types of cancer.... so a whole wealth of practical advice available from those who have walked the walk.

Good luck to you friend, and I am so sorry that his dad has been diagnosed with this dreadful illness.

Love and ((((hugs)))))

Daff xxxx

FOR FRIENDS ON HERE BECAUSE THATS WHAT WE ARE THATS WHY THIS SITE WAS CHOSE FRIENDS AND SUPPORT IM A 100% BEHIND ANY HELP ORGANIZEATION BUT I CHOSE THIS TOO AS ITS FAMILIAR AND YOU KNOW WE WILL ALL BE NOTICED XXX

Hi Daff,

You are so right about these McMillan nurses,I think they are hand picked for caring for cancer sufferers .

The Oncology Dept will go out of their way to help.......so no one should ever feel that they are asking too much.

Daff you do give good advice.....you are such a kind and lovely lady. x

good luck for hbim carol xxxxxx

i spoke with dad yesterday , he has his medical notes at home well copies, it appears he had carcinoma of the penis in 1996 and there was a operation to remove it, no follow up checkups were made he was never told, he is lucky to have his life 2 tumors on , the reason he asked for his notes was he picked up on something that was said at hospital.
just speaking to mum it has hit the poor man now he is sore and has realised that he has lost his manhood and feels if they had checked on him they wouldnt of let him get this far with the cancer , im going to find some macmillin nurses and speak with them too mum says he has us to speak too but i think he needs councelling what do you think xx

Carol, is it Hodgkins or non hodgkins? Or a secondary cancer? The treatments are slightly different so his needs will alter a little... if so, then get him to look at the Leukaemia site.... and telephone them... I did a few weeks ago and they were superb.... their information and expertise is Leukaemia/Lymphoma specific... they are quite rare cancers, so for absolute advice on some of the specific treatments and what to expect, then that is a good place to start... it can be a bit scary... but search out the threads that have positives.... he will find them if he looks... I am on there, under AML, but have only posted a couple of times. I have pm'd more.

If he wants to pm me, please tell him that I am happy..... as long as he knows that I am only going to tell him, yes, that's normal, make sure you mention it etc.... it is for validation of feelings, fears, anxieties and grief.,.... that is what support is about... let the experts treat and blast the cancer, that is what they do best.

Thank you for your kind comments.... I know how people feel, because I feel them too.


http://www.leukaemiacare.org.uk/1/home.html

Love

Daff xxxx

LPC,

Oh what a shame ,your poor dad, you can see how disruptive this disease is.!

I'm sure getting the Macmillan contact is essential for both of them .

Never heard of carcinoma ,but I am going to look it up.

See how we are learning from this brilliant thread..!

Puss, I agree, but only he can make the decision.... mention it to him... but let him take the lead.... get in touch with the support group for penile cancer, if there is one, and find out what they offer, so that you can put it all in front of him *in case he needs it*... he will almost certainly feel better with a male counsellor, or a buddy... someone who has been through the same and survived...

I had a couple of telephone conversations a couple of weeks ago with a buddy, and it has helped me tremendously. I am having counselling now, (first session yesterday, lol, but as I taught stress management, I was ahead of the poor woman on the theary..... useless at the practical, lol) but it is almost 16 months since my last treatment...

love

Daff xxxx

thankyou daff , and thankyou for your time you are an angel please take it easy too miss and rest like your supposed to be doing , we all know who the genuine people are xxx

OKAY MY PENNYWORTH
YOU ASK FOR COMMENTS AS SOON AS ONE DONT FIT
YOU SAY ITS TURNED ,I SEE BOTH SIDES,
WHEN C STRIKES YOU HAVE TO BE SO STRONG AND BRAVE
ALSO BE AWARE,
MINE ISSNT CANCER BUT THEE IS A GUY NOT GR AND NOONE HERE KNOWS HIM,HE TRYED TO GET TO ME ON A EMOTIONAL SIDE,
OTHER FRIENDS KNOW I CONFIDED IN THEM,CUT A LONG STORY SHORT I HAD STU WITH ME WHEN I WAS MEETING HIM,HE WAS A BIG (ACCAUALY SHORT MAN) BUT A BIG CON MAN,WAS USING ME BECAUSE I WAS AT A BIG LOW SPOT,HES RUN LIKE HELL BUT IF I DIDNT HAVE FRIENDS WHO SAW HIM FOR WHAT HE WAS ,,,WHO KNOWS,,,
I WAS TO BE A FRONT FOR SOMETHING OR OTHER,
SORRY IF YOU DONT LIKE WHAT IM SAYING BUT ITS TRUE...

I HAVE BEEN HERE EVERY DAY EVERY EVENING