Myeloma

hi ray,

im in the same boat as you only its my father who is having tests for myeloma. i spent last christmas visiting my dad in icu then took him under my wing when he was discharged. a month later his back is hurting, hes shrinking, just had transfusion and a specialist sent him for a scan.he guaranteed all tests would point to myeloma!! i was devastated. i live 5 hours away from him so couldnt run up the road.

how are you coping?

my dad is on a course of steroids, having biopsy in morning then pending on results could start chemo.

I wish all the best to you and your wife

Hi Kazzy,

Sorry to read about your father. If you need any help or advice please send me an e-mail to the following : raywass@hotmail.co.uk Does your dad live on his own? If i can help in anyway please dont be shy to ask. Liz has just finished her 4th lot of chemo and steriods etc and the next step is a stem cell transplant ( if she goes for it ). Look up the web site Myeloma UK, it is very helpful and they have a contact number open Mon to Fri 9 to 5pm and the nurses are will answer anything you want to know. Hope to hear from you

Regards Ray

Hope you and your wife are doing ok. Missed you in the chat room ;0)

Take care
Lesley x

Hi Les,
Nice to be missed lol. Liz has just finished her 4th chemo and still feels very tired and weak. She may start the stem cell transplant procedure in a couple of weeks. She is not sure about having it with regards to the isolation and side affects afterwards. Tomorrow we see her consultant and may get some answers to the many questions she has about the procedure. I will try to get into the chat room as i enjoyed the banter but now i must go to the shops as I have a ladder in my tights

Bbbbbbyyyyyyyyeeeeeeeeeeee - Ray

Yes, Ray, we missed your poetry in the Chat room! I hope the stem cell proceedure gets underway asap, and that Liz starts recovering from the fatigue - it seems to take a long while to lift, then suddenly .... Keep feeding her up, Ray! PS Don't forget with doctors giving percentages and averages, you can beat them: they tend to do worse case scenarios. Ladder in your tights - are you a window cleaner too? Tee hee... xxx Penny

Hi Penny,
thanks for the message and it was not a ladder in my tights it was a long hair on my leg with branches. Good job i can add up and do the sums at the bottom of the page lol. Any fool knows 1+1 is 3
Ray x

reading on here those that have cancer or related to someone, its reassuring to know my dad and i are not alone :)

he started his chemo yesterday and is going home from the hospital on friday. He spent so long in ICU over christmas that the last thing he wanted was to be back inside.. no offence to any nurses. they are like angels in hospital.

My brother and I could never understand how my father declined in health so much but it now makes sense. His outlook on it all is at least with the chemo he neednt worry about the barbers anymore hehe. He cant lift anything more than 10 Kg or his spine will shatter and has to wear a back brace. So you can imagine all the comments about a bloke - retired army officer - wearing a corset!!!

If anything the whole incident has bought me and my father closer. We fell out years ago and i hadnt been home in over 10 years. We are now the best of friends :)

My father is on his own as my mother left him a week before he was found on the floor by my brother semi conscious - 23rd December 2007!!

This hasnt deterred him from leading a full life. Knowing his condition now we are able to research what we can, and live everyday to its full. I did tell him not to go raiding any banks just yet though hehehe..

Hope you and your partner are doing well. Thankyou for your offer of support. Im now filling my head with treatments etc so i can help my father understand everything.

All the best from Karen x

Hi Karen,
Thanks for your reply. Good luck to you and your dad. If you need a shoulder the offer still stands.
Regards ray

Hi to all the fellow myeloma sufferers and their families.

I was diagnosed about 2 years ago and told I was quite young to have it, I was 54. I too have lost height, 5" in total so I'm only 5' now and look tiny against my 6ft 2" husband!

I with another patient Ann set up a myeloma support group. This has been a big help for many to reduce isolation. We get about 20 at each meeting. You can see what our group does if you look on our website www.myeloma-nmb.org.uk

I had a stem cell transplant a year ago , not a pleasant experience but I'm hoping it will give me extra time. Some of our members had theirs 4 or 6 years ago and lead active lives.

I manage to get our to go to the theatre a lot, do a little tutoring from home, see friends, go out for meals, etc. I love travelling but holidays are more difficult because of travel insurance but I had a cruise last summer and in June I am off to Switzerland so there is life after myeloma. I wanted to go to Canada but could not get trael insurance, so I'm sticking to Europe.

So there is still plenty of life after myeloma.
Joan

Hi Joan,
Many thanks for your message as it is nice to see more people with myeloma putting pen to paper so to speak. It can be hard for the patient and the carer but never give up hope, stand tall and fight it.
Had a look at your web site, very good. One thing I have noticed is that it can be hard to get support and what you have done is one way to solve the problem. Good luck to you and your group.
Regards Ray

Hello,

My dad has multiple myeloma and has been through a vast array of treatments. He's 46 and is on some sort of clinical trial. He was given large doses of Chemo last year, along with a stem cell transplant. Unfortunately the transplant didn't work but he's now on 8 courses of thalidomide and steroids and is preparing to have a donor stem cell transplant. He's also taken Velcade and other treatments too.

The prognosis isn't great but each case is different, so I'm told.

I wish you and your family everything you'd wish for yourselves.

Trixie

Sorry to hear about your Dad'd struggle with MM, Trixie. It really sounds tough, but at least they keep trying different approaches. I really hope that he pulls through, and is coping with that cocktail of drugs. xxx

Busman Ray: Hi, how's Liz? Really nice to hear from you - we miss your poems and teasing in the Chat Room. Best wishes to both of you, and hope you are both getting your lives back on track! Have a lovely (Factor 30) summer. xxx Penny

Hello everyone,

My mum has had Multiple Myeloma for 9 years now. She has done brilliantly over the years participating in lots of clinical trials however her body is now becoming drug resistant and her para protein levels are increasing. It's a worrying time as there is nothing new to offer her and she doesn't want chemo (understandbly) again.....

LOve and best wishes to everyone here xxxx

Been a while since I was last on here.

Hey Ray, my dad has an appointment for assessment for stem cell transplant!! He keeps telling people he has woodworm haha

We are all going on holiday to Blackpool this summer. The first time in our lives we are going on holiday. Funny how things like cancer bring a family together and put life into perspective.

He had a funny turn while watching footbal the other night, think it scared him a bit. Hes been invited to visit ICU where they treated him over Christmas, to talk about his experience. All he remembers is fighting the Taliban in his village and going to a Tandoori!!! Talk about hallucinations hahahaha. Hes going really to thank them for saving his life.

I think my dad was given a second chance at life but at a cost.

Some sad news, a neighbour of mine who had cancer of the oesophagus passed away in may. He was given a year but instead of enjoying what time he had he through his money at miracles that didnt work :(

The first person i turned to was my dad!! It made him realise how lucky he is to have myeloma not a fast acting cancer.

Does anyone know of a website that can give me info on his drug CTD, thalidimide and dexamethasone (sorry for bad spelling)?

Ray how is your wife?

Hello to all here also..

All the best
karen x

We are all in the same boat. my dad was diagnosed with Myeloma this year after spending christmas in ICU. He has had his dose of chemo increased but the amount of tablets he takes is less. Nicnak sorry to hear about your mum, it must be hard for you to put on a brave face and her too?

Trixie your dad is soo young, mine is 62 but acts like a 12 year old haha.

I do worry about the transplant he is being assessed for wont work and not sure what the next step will be.

For every day my dad wakes up he thanks who ever it is thats keeping him alive..

He has a dog thats been with him wherever he went with Army now Major wont let him carry anything heavy.If my dad attempts to carry something the dog scratches his leg until its dropped then Major picks it up in his mouth and carries whatever my dad needs! Talk about loyalty. I heard that when you have the transplant you have to be in hospital for 2 weeks??

Great to know we are not alone...

HI Kazzy & all,
my husband is planned to be having a stem cell transplant too, starting with the harvesting part (from his blood) at the end of August. The harvest comes first, then a little break and then the inpatient bit. He'll be in hospital 3-4 weeks apparently. The myeloma website has the most detailed and specific explanation of these transplants, (but cancer backup have good info too). The myeloma website is: www.myeloma.org.uk
- it's in the Patient Resources at the top of the welcome screen, and is a lot of pages so better read online unless you have loads of paper!
Hope all goes well for you all,

I had the CTD course of treatment followed by a stem cell transplant in June 07. It worked very well for me and am still in remission and intend to stay that way. Like Clarity said I found a lot of what I wanted to know from the Myeloma UK site and this one.
Best wishes to you and your Dad.

just spoke to my dad about the myeloma site and am now weeding through the information to send him in email. I just sent him a load of things he may wish to ask the specialist tomorrow. He phoned and asked if i was trying to scare him haha..

He already knows about GVHDs as he was in intensive care for months over christmas and came out with a diagnosis of myeloma. so he got a second chance at life but at a price..

I guess there is so much to learn and put into perspective when faced with cancer.. At least one thing has come out of this. we are closer than ever before..

Does anyone know where a donor can come from? immediate family ie brothers and sister is a problem as my father only had step sisters and step brothers? are myself and my brother eligible to be a donor?

thanks
kaz x

Hey Kaz,
I think the best chance of a donor is a sister or brother but there must be loads of people that don't have one of them! Anyway, matches can be found amongst other relatives, and there is also a world-wide bone marrow register. Many people who give blood are also potential bone marrow donors (like me!) you just have to sign a consent form to be on the register and then an extra sample of your blood is sent to the register. I've never been called which is a shame as I think my marrow would be good stuff (!) but a friend of mine was, though he didn't have to give in the end as a closer match was eventually found. They just sweep the stem cells out of your blood as it goes out of one arm and into another, through a fancy machine.
Another thing I've found out is that you don't have to be the same blood group as the donor to be a match for their stem cells.
I hope I'm a match for your Dad if he needs it - and ask your friends to give blood and be on the bone marrow register if they can. They might be needed by someone else.
Love your postings they help me a lot too, xxx

Ive never heard of donating cells. im definately going to my next blood drive in the town!!

My dad has got his dates now for the harvest festival hehe.. sorry to laugh but his macmillan nurse explained his treatment in gardening terms - chemo is the weedkiller and the rest of his treatment is the fertilizer!! Shes is absolutely wonderful.

He has to end the holiday early if there is a bed available for him on the 27th/28th for a hickman line insertion then comes the high dose chemo, in the first week of september he goes in for his stem cell harvest. The next part im dreading the transplant.

Ive bought him a laptop etc to keep him occupied while in hospital. Ive been told he needs clean items everyday to prevent infection as he wont have an immune system after the transplant. This scares me as you hear so much about MRSA in hospitals.

So far he is doing really well, just finished his last lot of chemo drugs today. His specialist said he was one of the successful patients.

Has anyone gone through this before or going through it now? Clarity Thankyou for your kind words and informing me about the donor part.

I had a tear or two when i read you hope you are a match for my dad. It brings a lot of hope to me knowing there are people out there willing to give life to others they do not know...

Anyway best get going.. got to make a fruitcake and lasagne for my dad!! Talk about eat for england hehe.

Take care all hope to speak again soon.. off to blackpool friday!!!!

Hi Kazzy, I didn't realise anybody else experienced the big appetite, most comments about chemo etc seem to say that people are less hungry! It's good though, gives the boys a few extra pounds to take them over any bad times.
My hubby and your dad seem to have the same timetable for their transplants - he'll be going on the 28th for chemo before the harvest, that's this Friday; he already has a Hickman line in. The actual transplant bit isn't till October in Newcastle. I'm scared too as I can't really imagine the waiting after, to see what happens.

Hope you had a brill time in Blackpool - did it rain (of course it did lol!) - we've just come back from the seaside too, it rained a lot but we still had fun.

Hello Kazzy & Clarity,
I am new to the site and have not checked it out fully as yet.
With regard to your concerns about the impending stem cell transplant on your father and husband. I thought that my experience may shed some light on the treatment and hopefully reduce your fears slightly.
I went on the CTD trial in 2005 and had my transplant in June 2006.
Although we read up on the procedure as far as possible, there is nothing like actually experiencing it.
I can only offer my thoughts on the experience, as I'm sure that for some people it can be vary considerably.
The stem cell harvest is fairly easy going. I was given the large dose of chemo to give the stem cells a boost. Then there were the small injections daily for 5 days to force the little blighters out into the bloodstream for harvesting. I didn't experience the feeling of the bones swelling that some other patients had felt, but on the day that I was due to go for the harvest, I awoke with a pounding headache. Being driven to London for the harvest was not pleasant with the headache and I was very concerned about the cause of the pain. On arrival at Kings College Hospital, I mentioned the splitting headache and was reassured by the technician that there is a marrow bone in the skull, which would be the cause. The techincian said "we will hook you up to the machine quickly and the headache will soon disappear".
He put a canular in each of my arms and connected me to the machine. It is a centrifuge, which spins the blood taken out of one arm like a quiet spin drier, to remove stem cells and plasma. Then the blood goes back into the other arm. The headache was completely gone in 10 minutes! I sat in the very comfortable and cozy, fully positional electric chair, watching the scenery and the 2 bags on the machine gradually filling. One with stem cells and the second with plasma.
I found it so relaxing, that I dozed off for a few hours. I remember the technician looking into the machine and saying excitedly, "this looks like good stuff"!!
All in all, quite an unexpectedly good experience.

I was booked in for the stem cell transplant several weeks later and arrived at Kings with considerable trepidation. My Para protien levels had almost disappeared, so why did I need to risk the stem cell transplant?? The specialists had told me that this would complete the treatment and normally gives a much longer remmission. They definately know best. I was close to dying when I arrived at Medway hospital the previous year and they were right then, so why doubt them now!
The isolation room was quite nice. With my own electrically adjusted bed, toilet and shower. All self contained like a small bedsit I suppose (but very much cleaner of course). Clean air was blown into the room continually and exhausted through a flap above the door. A friend had told me to take a freeview digibox, as they plug into the hospital aerial socket and give you about 24 channels to watch, instead of just the basics (a very good idea, as it turned out). There was a fridge and I also took my own small kettle for cups of tea whenever I wanted.
There were 14 other isolation rooms, all apparently occupied. But the only contact I had with the other patients, was sometimes seeing one on the weekly, masked trip by porter and wheelchair to x-ray, to check for chest infections.
The previous chemotherapy had not caused serious loss of hair, but this dose certainly did. A word of advise. Let the nurse cut it off, it saves the very unpleasant experience of waking with hair in your mouth, nose and eyes.
When the stem cells are put back in through the drip. There is a very strong smell of sweet corn. Apparently, it is caused by the solution that the stem cells are preserved in. Again, not unpleasant!
The effects of the chemo are not pleasant, but you get over it.
Each day consists of Antibiotics, Anti bacterial and anti fungal tablets. Just in case anything nasty was thinking about trying to take advantage of your defective immune system.
My very worried (but always trying not to show it) wife Diane visited me on most evenings. Sometimes accompanied by one of my grown up children. Numbers were kept to a minimum and gloves and aprons always worn. Sterilitity being so important.
Any sign of the slightest sniffle and they kept away.
The immune system gradually builds up. Each day I asked a nurse, or doctor if they could check the chart for me. Sometimes, they brought the printout to me to read for myself. Eventually, 3 weeks later, the readings were high enough for me to go home. What a great feeling.
The conditions of leaving the hospital, are that you must not go to places where people congregate in numbers. Parties, bus trips etc must be avoided until the immune system has fully recovered.
I had a sore throat and my temperature was slightly raised a few weeks later, so I was taken into Medway hospital for a couple of days, just to be on the safe side.

One year later, I had a Kyphoplasty to stabilise the several Myeloma damaged vertebrae in my back.

I now feel good. Apart from some tolerable lower back pain and being 3 inches shorter, my life is getting back to normal. Monthly trips to the hospital for Zometa to harden my bones and regular, although gradually extending visits to the specialists at Medway and Kings college hospital give me the reassurance that someone is keeping an eye on the myeloma. So I don't need to worry about it creeping up on me again!
Who am I kidding! I still think about it, everytime I get an odd pain, or strange feeling, as I'm sure we all do. Not as much as I did originally though.

My wife and family have been wonderful throughout. I am sure that I could not have survived without their undying support.

With regard to you comments about eating while undergoing treatment. It was the steroids that did it to me. When I was taking them, I could not stop thinking about food. I developed a photographic memory and visualised the contents of the fridge. My favourite, Cadbury's chocolate tasted bitter & awfull. Bacon tasted as though it was covered in a layer of salt, with metal filings added.
I had a strange craving for melon! It tasted wonderful.
Even when I had just eaten, I was looking for more food.

An overweight friend of mine once told me that he had an eating disorder. Apparently, his stomach did not tell his brain when it was full! He said that he only stopped eating when his arms got tired!

I hope that I have not just repeated everything that has already been submitted somewhere else on the site.
As mentioned previously, This was my experience of the stem cell transplant and I believe that it was definately worthwhile. I cannot say that your fathers and husbands experience will be the same, but there is always the possibility that theirs may be better than mine. I sincerely hope that it works out that way for you.

Please do not worry about MRSA. The isolation suites must be the cleanest and safest places in any hospital.

Best wishes,
Paul

PAUL PAUL PAUL!!!!!!!

thankyou soooooo much for your reply. ive sent it to my dad.

Also printed it out. If only you knew what relief this has bought to me. Im very grateful for this.

I have to agree that there should be no risk with MRSA in isolation or the hospital would be liable.

My dad has started his chemo through a central line, went home yesterday and this morning was in asda having his breakfast. he wanted to know if there is a device he can attach to his seatbelt to stop it squashing the line or is he exempt from having a belt over his shoulder?

Anyway, thanks for bringing much needed insight into this phase.

we can sleep better knowing experience may lie ahead.

Good health to u and your family

karen x

What a fabulous posting, thank you so much for taking the time to do it - I will get my man to read it straight away. Thanks again for visiting the site just to keep in touch, great to hear you're back at work again.

my dad has had the harvest but they needed 2 million he could only produce 1.3 mil.. bit disappointing for my dad. I spoke to his nurse who was wonderful and said that was due to his age.. he is trying a new drug plerixafor to get more stem cells from the bone marrow. As long as medical personnel dont give up then there is hope..

k x

Hello Kazzy,
I am very sorry to hear about the problem with the stem cell harvest. Hopefully the new drug will produce more than the required amount. Medical personnel do not give up easily, and without trying everything possible first. They do not like to be defeated. You should both try to stay positive. I realise that setbacks like this must make it very difficult, but I feel sure that having complete faith in the doctors and treatment really helps. (Sorry if I sound patronising).

Please remember that I am an engineer and NOT A DOCTOR, but I recall being told that there is no cure for Myeloma at this time. The stem cell transplant only helps to give a longer remission. If your dad responded well to the initial treatment and is now in remission, then perhaps his prognosis (should he not be able to have the transplant) would not be as worrying as you think.
After all, there are many Myeloma patients that cannot have the stem cell transplant due to their age or level of fitness. But there are some very effective drugs already in use to fight Myeloma, if or when it starts to build up again and new drugs being tested all the time. I was told that "we have plenty of weapons to fight Myeloma in our armoury". Another phrase was "Not cureable, but very treatable"
Hopefully they will have a cure before very long.

I am very tempted to delete the last paragraphs, as I am not a doctor and don't want to speak out of turn.
Perhaps it would be a good idea to ask the specialist!

Best wishes to you and your father.
Kind Regards,
Paul

Hey Paul,
you are a brilliant writer for an engineer! Hope that doesn't sound like an insult, but the compliment it is intended to be. I've started a topic on transplants for everyone, please do add to it as this topic is now extremely long!
Kazzy - keep going lady, you can do it.
C xx

There are some cool YouTube clips on Myeloma. One is a 34 year old who chronicled his Tcell. He tells it like it is, but maintains some youthful humor ("carpyeditor" is his handle). I found myself laughing a lot, despite the horridness of the disease and what my husband will be facing soon. He was diagnosed in June 2008 and is 49 years old and otherwise no health issues.

Anyway, go to YouTube and type in Multiple Myeloma and you will find him there.

Good luck.

Lori

Im still not ready to view vids on people with MM. Please do not be offended by this.

Lori your husband has his age on his side and if theres anything you need be it support, scream or cry just pop in here. Ive found the most amazing people both carers and Patients.

Time i got to bed.

Ill be back on soon to let you know how my dads doing.

Good luck to your husband Lori. my father was on Thalidomide, dexomathasone and cyclops(as he called it) worked a treat!!

kazz x

I totally understand on viewing the YouTube. But there are also some there on doctors in the UK talking about the new treatments, optimism and what about relapse and stuff. You might like to look at those. Not difficult. I understand on the others. My husband is not ready for them.

Thanks for your offers of support. Same here for you as well.

Finally,, My dad has given enough stem cells for his transplant.. He was given a new drug called plerixafor. originated from the US.

His cell count was low 1.3 million where he needed 2 million for 1 transplant.. after 1 dose of the plerixafor he harvested 5.4 million in total!!! now has enough for 2 transplants and some left over.

He is having a test today to check for viruses and his blood countand set a date for the transplant..

Fingers crossed he hasnt caught a cold.

when you get good news you feel like running to the stars..ive been waiting to run for so long i wont stop till ive thanked every lucky star!!

Lori thankyou for your support in emails. Clarity hope you are well and anyone else here..

take care until the next installment.

I knew there was a reason I felt compelled to look at the site right now!
The tests are hilarious I think; my husband has been tested 3 times for syphilis and everything else they could think of, and I said to them a fortnight ago - do you really think he's caught it in the last 2 months?! His brain function is always like that!!
Anyway...
Must be a lucky day, so good luck to your Dad (did you tell him he's famous!)

I too almost missed this entry Kazz! So glad I didn't! Awesome news! Please keep us posted. We continue to be interested and hopeful for all of you! Best, Lori

Hi, you sound very, very happy. That sounds like fantastic news and I wish your dad and you all the best. Do you know when he will be having the transplant? At what point was he given the drug and how? I am due to have my stem cells taken on the 10th nov at kings in London. I have to have a days of chemo and growth factor injections just before that. I know I am going to be filled with anxiety when I have to go in for the transplant!

Amanda

Hi Kazzy,

My mum has multiple myeloma, she is 78 year old and not the best of health. She was diagnosed about 4 years ago and has had
chemo for 6 months (Mephlan tablet form) steroids, and 18 months of Zometa . We were told she cannot have any more Zometa as it affects the jaw. She is now taking tablets everyday to build her bones( we think they are calciums tabs) also she has weekly injections to do something to her blood. Her paraprotein levels are now 26. They have been as high as 39 before the chemo.

A month ago my father was diagnosed with bladder cancer and has just undergone an operation to remove a tumour. He has gone through the mill a bit, as at the great age of 87 this is his first operation, not bad going for his age although he has suffered heart failure a few times. The angels are definately with him.

Hope your dad has the same angels as my dads. Keep in touch and take care,

Dittyb

HI guys, firstly ditty you and your family have certainly been through the ringer..my heart goes out to you..its a tough time when a close one is on the brink of the inevitable. In my dads case last year, death didnt come knocking, he sat next to my dads bed waiting..but being a stubborn man he kicked death where it hurt and well...he is sat in a top hospital in nottingham having a high dose of chemo. Its the final hurdle in his treatment until the cancer comes back

Angels appear as nurses in some hospitals. Without their support i would have gone to peices. The same is true about this site.

Amanda, my dad had several doses of chemo that seemed to work then he was put in for his stem cell harvesting. To start with as i have mentioned before he couldnt produce enough. This felt like a kick in the teeth but believe me all is not lost..

He was given a drug called plerixafor along side his GSF injections, some of these were self-administered at home. a week later he had the Plerixy jab, next morning he was put on the 'combined harvester' (sorry thats what i nicknamed it) and believe me, miracles do happen..he produced more than enough stem cells for 3 transplants = 5.7 million cells!! It truelly is a wonder drug.

Do not worry about the stage you are going through, it can be tough but with a little knowledge, its a lot less scary. Im becoming medically minded from all the informaion gathered and hope one day i can pass this on to others.

My dad is taking to the high dose chemo well so far, he has four hourly doses and a flush through his kidneys. The chemo is administered through his central line. He has been told it will make him feel extremely ill for around 10 days, he gets given anti-sickness pills, lst time i spoke to him he was sick of taking them hahahaha

I believe going into any situation blind is worse than the condition so read what you can - i went to www.myelomaUK.org and got tons of info also they do amazing xmas cards to raise funds. if you are in the UK try to stick to sites from the UK as some pages scared me no end.

PMA (positive mental attitude) is the best medicine you can have. Keep your chin up look to the future, one step at a time and before you know it you can lead as normal a life as you did before. Only you'll have a lot more friends that care for you.

karen x

Hi Ray,
I am the carer for my husband who in 2006 was diagnosed with Multiple Myeloma, He was not given a very good prognosis but had a Stem Cell Transplant in October 2007 ,so is now one year post - and doing very well. You can read more about his journey through transplant on http://www.susiehemingway.blogspot.com where if you scroll down - you can read my entries at this time. If I can be of any help please contact me, Wishing you lots of strength and lots of good wishes. Susie Hemingway Moursi.