[AletheaParticipant]

Hi All,

I was diagnosed late December 2011 a few weeks after my mum was told she has lung cancer. The next few months were extremely tough in every sense. I have been hospitalised on 3 occasions, the 1st in January with chronic back pain. The 2nd in February with internal bleeding after being on warfarin for only 3 days and the last was in March when my blood sugar level reading had been 34 due the the CTD treatment I was on.

One of the hardest thing I have had to deal with in telling family & close friends but I had to because holding was getting me down and holding on is a negative and was really brings you down. The other thing I realised is that you are not able to do the simplest of task like picking up a small item that had fallen on the floor, walking, sitting or even reading at first I tried to tell myself that If I tried harder I would get stronger but that didn't work at all. I have stopped fighting myself and except the condition I have but realise that it isn't who I am 8-).

I am due for the stem cell treatment in the next few months, not looking forward but I know that it is part of the ongoing treatment. My consultant is happy with my progress so far and I'm only on clexane and thalidomide. I still have to check my blood sugar levels every morning hopefully not for much longer.

Every now and again a little depression sets in and it's not a place I want or like to be but you really can't control it as easy as that so I don't If must happen for a reason who knows.

Thank you in advance for welcoming me to this forum I hope it will lead to many more

[andygParticipant]

Welcome to the forum Alethea.
None of us want to be here but here we are. You will find us a friendly bunch – sometimes funny sometimes sad but always supportive. We are all at different stages of this dreadful disease and everyone's journey and treatment is different. It's a very individual disease.
I myself was diagnosed October 2011 after suffering at least 18 months of back pain! My treatment to date hasn't been too successful my paraprotein levels have remained stubbornly high – around the 40 mark. So SCT is still a distant objective for me at the moment. That's my rant over 😉
Please use the forum as a sounding board – rant, rave, scream, ask questions and hopefully laugh too. You'll always get a reply and some support and you'll help others who don't post but just read the forum.
You'll soon find we're not members of this forum but friends 🙂
I hope everything goes well for you and your mum.
Take care and fight on
Andy

[tomParticipant]

Hi Alethea

Sorry you had to join us but you will have found a great site with great folk (oh and me?)

I found it easy to tell people about it, I feel that the problem shared is a problem well halved 😀 the more you have to help you bounce back up when yopu are feeling low the better 😎

I also had that depression but a half hour under a Bloomin hot shower shifted my mood, just listen to your body we arn't the same as we once were but we are still nice, rest when your body tells you and keep infection as far away as you can.

The SCT is not as we say a walk in the park but loads of us have gone through it 🙁 and forgot what all the fuss was about8-) think some Lady's say its like "Childbirth" soon forgoten about??.

Good Luck in your road to remission.

Love Tom "Onwards and Upwards" xxx

[VickiParticipant]

Hi Alethea

Welcome 🙂 My partner Colin was diagnosed in October 2011. it was a complete bolt out of the blue. We have certainly been on a roller coaster….lots of hospital visits …..even today for a temperature and he has been off treatment for 4 wks now waiting SCT! The positive of what I'm saying is the medical teams are great at treatment, do a great job and will get you better. There are bouts of 'downtime', me and Colin for different reasons,that's natural. However the positives when they come, make it better.

Any questions, if I can help, will do

Vicki and Colin 🙂

[wendyduffieldParticipant]

Hi Alethea

sorry to hear what you have been through over the last 6 months, it sounds tough especially wih your Mum being ill as well. I found the physical limitations due to the treatment really hard to deal with but hopefully these will pass as the treatment wears off and after the transplant. I am now in remission 10 mths post transplant doing well and pain free so would say hang on in there. I also got very depressed and anxious and was able to have some counselling at a local cancer support centre and I dont mind admitting it, took the happy pills as well which definitely made a difference to my ability to cope with what was going on. Make sure you get the support you need and dont be afraid to ask for help.

Wendy

[HelenParticipant]

Hi Alethea
Welcome? Myeloma is a tough disease isn't it? It really messes with your head, but you do get there. It's all so intense at the beginning with the diagnosis and the treatment bombarded at you when you are still reeling with shock, especially mum as well.
Do get help, it is there and there are many here who will help if they can
Love Helen

[mhnevillParticipant]

Hi Aleathea

Welcome from me too. What a blow for you and your Mum both to be diagnosed with cancer. Life isn't fair, is it. No wonder you have had times of feeling depressed.

As you are on route to SCT I presume you are quite young! That's hard to cope with too, but at least, as others will confirm, you are hopefully on the way to a long remission, even if getting there is rough.

Hope to hear from you often on the Site.

All best wishes.

Mavis

[CarolBradley1Participant]

Welcome Alethea

So sorry that we have had to "meet" you like this and that you are having such a difficult time.
I do hope that things get a little bit easier for you soon. I think you will find this site very helpful and the people are very kind and understanding. Talking to other patients who understand the condition and the ups and downs that we all help has been a great comfort and support for me. Sometimes I don´t want to worry my husband with yet another symptom or pain etc. and it´s much easier for me to come on here and ask for advice from someone who might already have had that particular problem.

Hope things improve soon.
Best wishes
Love Carol xxxx

[AletheaParticipant]

Hi all once again I want to thank everyone for your kind words and support.

[AletheaParticipant]

Can anyone help me? I know that sugar is the enemy with this condition can anyone recommend a recipe or six for me to try bearing in mind that I have a sweet tooth so cakes and cookies are at the top of my list

[AletheaParticipant]

Hi all,

I need some information I'm due to look at a motability car and not sure what type of adaptation I would require is there anyone out there that can help or advise me?

:-S

[Author]

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