Hello from Mali (Dana, Dot, Goofy Dad how are you all?)

[Mali]

Hi everyone

I've not been able to put aside the time to write lately although I read your posts every day.

My latest is that my little boy went to the doctor. He is not at all worried about him and said he had never heard of a child of 9 having polyps in all his years of experience. He was also confident that my son had indeed pressed to hard while wiping himself with toilet roll, and my son had said this. Lately he has seen no further blood but I shall check from time to time, although now he is too old and independant to let me into the bathroom while he's in there.

Mum is still suffering. The good news is that she has been told the MRSA has cleared, and this being due to the fact that they have taken out the catheter which was stuck into the middle of her abdomen just under her chest. However, she has been quite weak (despite the fact she is anyway generally) and a few nurses think the liquid that was being led away from her body by way of the 'pig tail' catheter is now starting to build up in her abdomen. (It apparently should just be reabsorbed into the body.) She may well have to have another scan to see if there is a build up and they've told her she may have to have another 'pig tail' inserted. As she had suffered so much with this before she said she would not have another one, in fact her words are 'I'll die first before they put another one of those things inside me.)

She is so weak that I now have my serious doubts that she will withstand any chemo coming her way. She is waiting for the appointment with the oncologist. A nurse I know said that the chemo is likely to be paliative, (to help ease any pain.) Surely chemo is more than that, surely it will be there to attack the cancer cells. I was walking on air when the consultant had given some hope that she may benefit from chemo, but now that this nurse has told me it is likely to be just palliative I feel so down again.

Dana, I've been reading your posts avidly. I am so sorry for your loss and was sad to hear that your father is so upset. Thank you for all your information through these posts. This website is invaluable. I have learned so much through it as I know many more have.

My Mum is likely to be given Oxilaplatin with 5FU. Please God, they decide to give it to her because they believe it'll prolong her life.

You're very brave Dana, going to get yourself checked out. I hope the colonoscopy is ok. You must send us an update.

I will try to be in touch again soon, but if you don't hear for a while, I will still be reading your posts, just that I need to put time aside to write. I will eventually be in touch again with another update.

Peace and power to you all in your fight against this disease
Mali

[Dana]

Mi Mali,
pleased to hear from you again. And very pleased about your son.
I'm freaking out and check my children after they've been to the bathroom. i've been to their paediatrician to ask when do they have to start screening as now their family history needs updating. My husband had thyroid cancer when our first child was born so I was already worried about that. Anyway our paediatrician is always nice and patient so she just smiled and updated her data.
My daughter wrote a page in her diary saying that her mum is sad and she needs to help me smile again because she misses the old me, so now I'm trying to put my act together and be stronger.
It's just that I managed throughout mum's illness and now I'm really tired and feel and look like a wreck inside and outside.

It's spring and my tulips are nearly blossoming.....

I can imagine how you are feeling about your mother. I pretended I didn't know what the word palliative meant when docs mentioned it. For some reason I convinced myself it meant miracle cure or similar. Anyway now I'm in that "if only..." phase in which I wonder if we did right in pleading doctors to start chemo and if we could have done more to give her time. My mum was well when taking Xeloda and was full of hope. She had a good xmas eating my "not so good as hers lasagne". That pill was her hope and we must do all we can to give our loved ones hope. Palliative? The meaning is clear to me now.....

Be strong Mali, I think about you a lot. Really.
I really hope your mother starts Oxaliplatin, it's done miracles for so many people who were losing hope.

I love this site it's full of hope and positivity. And that's what you need now. Stay strong for your family and yourself.
Go out and treat yourself to something nice from time to time, it's important.
Lot's of love
Tantissimo affetto
Dana

[Mali]

Ti ringrazio Dana per la tua risposta. Thanks for your message back to me. I have 3 minutes in which to write as then I am back to work.

So what did your paediatrician say when you asked when your children should begin screening? You do need a nice a patient doctor to talk to. Unfortunately not all doctors are like that. Ours, well, at least one of the multi-disciplinary team is very good.

Dana, I can only imagine how you feel inside now that your Mum is gone. It hurts me to just try to imagine. I hope that with time you will find comfort. It is clear through what you write that you were close. Keep her close Dana and that will I hope ease your pain with time. In the meantime, you have your children to think about and I'm sure they will make each day pass on a practical level, but more importantly, with such love that we hold for our children.

I hope we are doing the right things too, for Mum. I hope the chemo will help her. I cannot bear the thought of losing her. It seems surreal. We've all booked a short break and we're going to Devon for the Easter period. I wonder if Mum will weather the travelling okay?

I have to get back to work.
Al lavoro, sfortunatamente.

Con tanto affetto
Mali.

[Dot]

Hi Mali:

Glad to hear you son is OK. Sorry to hear your Mom is so weak. Maybe now that the MRSA is under control she will get some strength back. I know that word "Palliative". I personally hate it! When we went to the Dana Fabar center for our 2nd consult they said that Bob's treatment would be "palliative". I would have given up if it were not for this site. It was here that I found out about all the people that were Stage IV and have beat this horrible disease. The Dana Fabar docs said "palliative", and Bob's oncologist said his treatment goals were to become "cured". So, that is the plan we chose.

Update on Bob: He has has round 9 of chemo; had his 2nd CT scan since starting treatment, (but this is the first CT scan since starting the Avastin) and the results were that the largest tumor on the lobe of his liver has decreased in size from 5 cm down to 2.1 cm!!!! And that is all they can see now. It looks like the smaller tumor is gone!! The plan is to still have 12 rounds of chemo (every other week he gets his chemo) then see the surgeon for the liver resection.

Dana, so sorry about your loss. I can imagine how your heart ached when you read what your daughter had written. As mothers we try to be and do so much for our family and we cannot do it all. When my husband was at his worst over the Christmas holiday our son said to me one night that he did not want any Christmas gifts, that we should take the money and spend it on Dad. That made me realize how helpless he felt and the only thing he could control was giving up on gifts for his Dad.

Mali, did you ever get any info on the Trovax vaccine? Could your Mom be enrolled in the Phase III trial? I think they have completed Phase II of the trials.

Keep us posted, and stay strong.

Dot

[Dana]

Ciao,

Mali,
It's a great idea to take your mum away for Easter. It will really help her and you too will benefit from a few days in lovely Devon. I'm okay today, feeling much better (hairdresser did the trick, not much change though). I miss mum so much and you're right we were close, very close. A cat and dog deeply in love with one another. I'm glad we expressed our love so many times so there are no regrets and while she was slipping away she gave sign that she knew I was besides her....
She was an extraordinary lady and her funeral was something I now look back on and smile. We saw so many people crying and they meant it... She wasn't italian but managed to enter so many hearts and this is a lesson I want to pass on to my children. Like my mum used to say "we're only passing and an extra smile won't hurt". She never stopped smiling....
Basta con la tristezza!!! No sadness.

Mali how are you feeling now? Don't worry if you can't juggle everything. When mum was here I couldn't stay all day with her but had my chores to do and my job, now sometimes I find myself thinking that maybe I should have done more and left the ironing to sit next to her. But that's how it is, we can't do everything but must just do our best. Don't forget your son, though. I've got so much to catch up on....

The doctor said thet my children will have blood tests done as soon as I can convince them and she will start from there, My daughter is ten so doc reckons she can have a complete check up before school starts in september. I must explain that she was a very premature baby (27 weeks- weighing 730 grams) so she has always being closely checked up to the age of ten.
My son worries me though as he seems to have IBS symptoms.

Dot,
I'm so happy that your husband is much better. I always read your posts so avidly and they gave me so much encouragement. You're right: a positive attitude helps enormously. When my husband had cancer (thyroid) he stayed calm and positive, and went through radiotherapy without ever saying "why me" and all was over much sooner than docs expected. Cancer can be beaten. It's not a sentence. Some can't make it but only because it was a late for them. Prevention.

Today is saturday so I'll be taking my kids to the beach and collect shells. It will do good to us all.

By the way I've got one piece of good news: one of my brothers has had his colonoscopy and the results came back clear.

A huge hug to all.
Baci e abbracci
Dana

[Mali]

Dot

I was so pleased to hear you again. I'm afraid I don't quite have the hang of using the personal message facility so for the moment will stick with this, although that's not to say I won't be trying the personal message facility again.

It amazes me that everyone seems to know what stage their cancer is at. My Mum's never even mentioned a stage. I just know she has aggressive colorectal liver mets and breast cancer. Do different stages mean different prognoses? I must ask my Mum if she knows what stage she is, seems odd there's never been a mention of it.

Dot, how can Chemo be either curative or palliative. I don't get it. Surely chemo is chemo. Does it mean that if it is palliative it is less effective?

It sounds like Bob is responding well to the chemo. Keep letting us have updates. What is the expectation for a resection after chemo? You know, before Mum had her resection she was offered two choices. Firstly, the one she took, resection and hope that there is no recurrence and possibility of chemo.

Secondly, to have a needle inserted to analyse the kind of tumour it was, (it was suggested this was highly dangerous as the insertion of needle could scatter any cancer cells around the body very quickly), once the type of tumour was known it would then have been followed by chemo, with the idea of shrinking the tumour and then having the resection afterwards. Is this similar to the choices your Bob was given?

If so, the second one is obviously working for him presently. Mum is still waiting for her appointment to come through from the oncologist. I don't know what they're waiting for. It is over 2 weeks ago now that the consultant said she may benefit. I have an awful feeling that perhaps it is only palliative chemo (whatever the difference is) and therefore they are not approaching this in any hurry. I know that Mum is dreading chemo and I suspect she may even decide not to go for it, although on second thoughts she may give it a go.

Re. Trovax. I got a very odd reply from a professor involved in the trials saying that I should keep pushing for my mother but without saying that he would take her on for Trovax.

However, the consultant my Mum saw 2 weeks ago convinced us rather quickly that until we have tried all methods that we know work, then there is no reason to go for a trial, which was are not guaranteed will work. So he strongly recommends we try for chemo first and follow the process, once known methods don't work, then we go for the trials. Does this make sense?

Take care Dot, I am thinking of you and Bob and hope that he will continue to benefit. Remember to update us.

Dana

How are you? How are you managing? Are you finding comfort from the everyday care of your children? I imagine that the pain will never go, but will hopefully ease with the passing of time, or if not that, then you will become used to knowing how to live without your Mum. I know that one day this will come to us all.

How about your Dad? What about him? I often think it must be very difficult for somebody who is older who has lost a partner. I can't remember if you have brothers of sisters. If you do does this help?

Spring is coming here too, and daffodils are coming out. It's still very cold but the sun is trying hard to come out. I try to view everything as positively as possible although it's difficult. It's very easy to feel so lonely and alone and I worry terribly for my little boy and what his future holds. If only we had a bigger family.

Dot and Dana, it's great talking to you as always, I feel I have kindred spirits to connect with.

Keep strong and thinking of you all, that's Dot, Dana, Bob, your children, Dana's Dad and all the rest of us.

Bye for now
Mali

[Dana]

Ciao,

Have been busy lately with lots of work but I have been thinking about you all a lot.
I'm doing well even if I'm dreading the fact that Easter is coming and I'm going down south to my dad's. It will be the first holiday without mum and she always made it special for us in every possible way.. Her fantastic italian- english-irish cooking is unrepeatable. Well we must go on.
Mali, you ask about my Dad. He's in an awful state. They were soul mates, had met each other in the sixties far away from their homes and have always been very much in love. My dad connected to the world through my mum. She was his connection to us. My dad is very italian (maybe you know what I mean) while my mum was always able to make everyone feel loved and important. And now it's difficult for us children (2 younger brothers and myself) to connect with him. It's as if the core of our family has been taken away and we must find new communication channels.
I am missing her more more each day.....
I know we all must go through this at one point of our lives, it's just that I feel it has happened too soon. Last year she was healthy and not even in our worst dreams we could have imagined that a year later she was gone.

About cancer stages. No doctor ever mentioned what stage my mum was. I did research and figured it out for myself (mets to other organs= stage 4) then asked a doctor who confirmed.
Palliative means it's too late to turn back so the chemo will only relieve suffering. But I can assure you that docs don't always get it right as I know many stage 4 survivors with no trace of cancer left to whom palliative cancer had been given. So stay positive.

I know how you feel about your son and not having a big family. I live far away from my family but am close to my in-laws whom I love dearly but it's not the same sometimes I do feel lonely.

Ciao to all. Hope to hear from you soon. I feel a bond with you and you're always in my thoughts. A huge hug to Dot and her husband and everyone reading.
Ciao Mali un abbraccio

[Mali]

Dana, voglio provare di mandarti un messaggio personale ma non sono convinta che funziona bene.

Provaro di mandarti qualcosa ma non addesso perche devo lavorare.

Thanks so much for your messages.

I will try to send you a personal message, but not now as I have to work.

Mali

[Dana]

Ciao Mali,
ok ti aspetto
Dana