Hi Debi

No problem if you are going to Sutton!!!! We travelled every week by car,massive car park pay anyway even disabled!!!! If you use a wheelchair all the time tiger is a little bit of parking before barrier,after barrier there are four lanes of disabled parking,but as I said you pay,most it has cost me is £14 !!!??

I use to find it easier…[Read more]

Ho Carol

You make me laugh!!! Thought that plane to ozz was this month????
Phi Judy2 sorry cannot help you,out of touch with new trials,try going into new trials on here,might be some help!!!!!

I can say this journey is like a roller coaster so many highs and lows,you learn to ride with the flow,you will get lots of help on here and also from…[Read more]

HiDavid

I can remember a few years ago,you getting everything ready just in case,the garden,with crocuses,and easier boarders,plus the old coffin job!!!! And look what you have done since,family tree,holidays!!!!

Just enjoy this month without treatment!! Make the most of the summer,the lump as you know can be anything!!! As for the…[Read more]

Hi Andy

They say opposites attract !!!!!! I took a instant dislike to Slims views in 1981 !!!!!
Still together all these years,he makes me laugh!!! That’s my excuse.
Slim is a very determined character,in a very quiet way,when he says something like do not let them put DNR on my files,he means it,and expects me to honour his wishers no matter…[Read more]

Hello Sarah

My heart goes out to you,yet I will find myself in the same position soon although by a different route.

I have not been on this site very much,mainly some one said this site is about hope and it is,but there’s no hope left for you and me,I have a daughter older than Mark,but I could not imagine what it would be like to loose…[Read more]

Hi Maureen

You did a good thing by getting a second opinion ,life’s to short to waste time with stroppy consultants!!!

If Andy can get 22 cycles plus some people get a lot more then it’s a good thing,cyclophosphamide knocks the cells but at a price???? Dex seems to enhance the other drugs like Revilimid

Good luck on your journey. Love Eve

Hi Fiona

Two years is a long time in the Myeloma Bubble,time for new drugs to come on and advancement on ideas,never forget everything is just an opinion!!!!

The say you have to put your trust in someone,put your trust in each other Philip to make the most of what every lies ahead,and never never give in,and you Fiona to make sure every day is…[Read more]

Hello Stuart

Just popped in on Fiona,s post to say hello! We met at the Marsden by the car parking machine that eats money !!! Lol

Slim is now on Palliative care,the Velcade worked again,but blocked arteries were the on going problem,which resulted in other issues.

Sorry for taking over your post Fiona,hope is a wonderful thing just keep…[Read more]

Hi Maureen

You are right to get a second opinion ,you do not need a stroppy doctor,Slim has always had the cyclophosphamide and Dex combination,you need a hospital that is able to tweek the treatment to suit the person.
Better to get a second opinion in the early days,I would look up to find out more about the hospital and consultant,you do need…[Read more]

Hi Helen

Good to know you are doing fairly ok,may be pomilidomyde will be the one for you!!!
Slim did well using Velcade second time round,knocked to 10 percent on 3 cycles,the platelets and artery blockages were the problems.

Once he realised what was going on,had an impact,but just wanted to get home,did not want it to be this way,but the…[Read more]

Fiona

You have had one of the best experts in Prof Morgan,Slim had Faith Davies,but sadly both going to America in July!!

Just sent an E Mail to Sharon thanking the unit for all there support.

Andy was on Revilimid for 22 cycles ,Slim only got 4 cycles as it knocks bloods to nothing,but Andy is the better one to consult.

I think the…[Read more]

Hi Fiona

Children never say much,and I personally think we do not give them enough credit as often they know what is going on,but do not want to upset mum and dad.

Matty,my grandchild died two years ago and his sister is still going through therapy,it’s not an unmentionable subject,but both siblings have problems on a day to. Day basis.

Looking…[Read more]

Hi Fiona

It does sound if Philip is high risk,they use this term when treatment works well,but starts up again as soon as treatment is finished,which does not give you much time free of treatment,

We all hope for remission,and not to be on pills all the time,all of this is a gamble at choosing the right drugs,as you know in Slims case it did not…[Read more]

Hi All, not been on for a while and have only just stumbled on this. Very interesting! I live in Oakham, 9 miles (ish) from Melton Mowbray. We live a 2 minute walk from a plastic engineering factory. Twenty years ago I worked for 5 years (North West of England) for Nuclear Electric, catering for workers, labs etc. So I could take my pick from a…[Read more]

Hi Helen

I sent an E mail to you!,So my question is are you alright????,or just making the most of this beautiful weather.

Slim has had another spell in hospital,he comes home today!!!at peace with myself,would have liked ,the hospital to forget about ticking so many boxes and consider the patient and carer before they feel the need to send in…[Read more]

Hi

Myeloma has a major effect on carers,it is wise to know what to expect as the years pass and learn to come to terms with it,as the years go by you do learn to accept and come to terms with your husbands illness,so try not to look to far ahead as nature will take it’s course and as time goes by acceptance and a form of peace follows.
On a more…[Read more]

Hi Marge

well I have been on the Velcad for 5 months now, it stopped working on month three so i have had Cyclophosamide to the mix side effects ?? am tired and weary more so as the other one was added,apart from that Not much else as yet, to be fair its ben kind to me 🙂

Good Luck with it

Tom Onwards and Upwards xx

Hi Deborah

I had mine in 2009, got four years out of it and that was great, yes I was bloomin cold in the room should have taken my throw in 🙂

Mouth wash now I used bottles of it every time i went to the loo, walked past it thought about the loo I mouth washed (they will give you more lol) , cant emphasise enough to use moth wash as often as…[Read more]