[Gill20Participant]

Hi Gill

I am sorry you are having such a bad time. I was lucky as I have been monitored for myeloma for the last 17 years but this is the first time I have needed treatment. It was picked up as being active by my GP because I was feeling so tired. I have had pain in my back and head but I just put it down to wear and tear so never mentioned it. The survey showed that I have a leison in my head right where I get the pain but the doc said he hadn't looked at anything else yet so I am suspecting that I have them in my back too.

I was told I would start treatment in a couple of weeks but after the tests yesterday the doc said it wouldnt be wise to wait so I had the zometa yesterday and started chemo today, I am not sure how I feel yet though. So many tablets fortunately they gave me a chart with them all on and when I have to take them. I also have heperin injections which I have to myself daily, oh joy!!!

I hope they soon get your medication sorted out. I am on CDT1 and have two anti sickness drugs.

I hope you are feeling better soon, I will send you a private message as I have just found out that you can do that.

Gill x

[GillianParticipant]

Just thought I would give you all a little update.

I am coping with the chemotherapy, this is week 2. Tuesday I had a course of radiotherapy which was totally painless, but I then had dreadful sickness. Slept all of the day yesterday and am suffering a little with sickness today.
One thing that has happened is that I have lost control of my bowlels, quite upsetting and wonderd if it has happened to anyone else. My bladder is fine though???
I am starting week 6 in hospital now, so I think I m in for a long haul….

Gill hope you are ok and good luck to all the other newbies on the site.

Thanks to all.

Gill C

[tomParticipant]

Hi Gillian aka Gill C 😀

Good Luck with it all and you seem to be doing ok with it as for the sickness I was on antisickness tabs for months after my SCT, and the bowels am pleased its a distant memory 😎 yep Control never in your life I dare not go far from a loo after anything to eat or drink as it didn't stop long, Lord knows how I got some benafite from what I ate and kept in:-/ so Gill C am sure you and I are not alone with that one 😎 ((better if your in Good Company 😀 ) you can get Tabs to help with the bowels but they will need to do a sample to make sure its not an infection.

Good Luck with it all and not forgetting dont rush and try and do too much 🙂

Love
Tom "Onwards and Upwards" xx

[Gill20Participant]

Hi Gill

I am glad the radiotherapy went well hopefully you will start to get better soon. I am starting my second week of chemo tomorrow and so far I have been OK apart from the constipation one or two others have said they have had. I had a bad few days of pain with the Zometa and although it is better it has made my head worse, I find it difficult to stay awake and have waves of pain in my head which is hard as I am working full time. Hopefully it won't last too long. It is my 60th on Saturday and I have a family party to look forward too so I won't let it get me down.

It is good to have this site as it does make you feel as though you are not alone. Take care Gill I hope you get some good results soon

Gill

[eveParticipant]

Hi Gill20
May i just say everyone seems to suffer with bowel problems.You have to make sure you take a laxative on a daily bases otherwise you have a build up,even then you will find yourself needing a toilet very very quickly,after awhile it becomes the norm.part of the course with the medication.
Gill the one in hospital,my husband has been in your position,I was worried for him,such a proud man,but do not worry,they will sought you out.he has no problems now,except,when he needs a toilet,it has to be that second!!!!.
I think poo is one of the subjects thats aired a lot on this sight lol:-)it,s become the norm.
Hope you are out soon Eve

[GillianParticipant]

Thank you all once again for your support. Week 7 in hospital now, not that I'm counting!!!
Had Radiotherapy and a blood transfusion last week, all went well but I am just so tired. Today I am being allowed to go on a home visit for a couple hrs, this is to see how I will manage in the big world, I think they might be looking at discharge next week, so fingers crossed.

Otherwise things are just ticking along, the Chemotherapy is going well and I have a syringe driver in permanent position now, so have no nausea problems, Bowels we wont mention and I am looking forward to eventually sleeping in my bed!!!

[eveParticipant]

Hi Gillian
Good to see your getting there,take any equipment they offer you,as you will need most things for a short while,and you can send them back,when you do not need them.
Slim did 22 days in hospital and was so so so glad to come home,progress was slow but little by little he is much better,and it does take it,s toll on the carer,it becomes a 24 hr job,so take things slowly.It has taken a few months for us,there is also financial help out there,start the ball rolling early as I am still waiting on help with that,and truthfully I needed it months ago.It would have been nice ,to have some help in the house to give me a rest as it is a 24 hr job,
Do you have someone there for you??? love Eve

[GillianParticipant]

Hi Eve,

Thanks, yes I am very lucky, I am going to stay with my sisterbfor a week or two, to get me settled back into a normal way of life and then we have some big decisions to make. Just before my diagnossi my husband and I had bought a big old property to do up and were living in the garden in a large static caravan, but obviously this has now all changed, I can't live in the caravan and the house is not habitable, so we are thinking we will rent short term until we getbsome order into the new house!!! Not good timing I know, but it is giving me something else to think about

[brochoParticipant]

Hi Gillian its good to hear you are doing well and I hope you can get home next week, there really is no place like it Your new house sounds exciting , even if it is a big undertaking !!You will get some normality back , probably sooner than you can imagine right now ! The main thing is to rest when you need to , dont try and rush yourself to do wht you think you should , it will come in time but you just cant rush this recovery time Enjoy being looked after for a while , I am sure you have been the one doing the caring often enough!! Take care and keep on keeping on !! love Bridget

[clarabellParticipant]

Hi Gill C,

Hope you get out of hospital soon, my dad was diagnosed in January and had Radiotherapy which has helped with pain, he has a mass of myeloma at the bottom of his spine and hip. He is on CTD and other than tiredness is doing ok. We're all rooting for you on here and here to help!

Gill re:constipation, make sure you take all the laxitives they give you and if they dont have the desired effect let the hospital know and they will give you something stronger like MOVELAT (i think thats what its called? My dad was taking senokot and after a couple of weeks had to have an enema, the hospital advised he should nt have left it that long before telling them.

Best wishes to both of you

Clara xxx

[Gill20Participant]

Hi Gillian

Great news about getting out of hospital, its a pity about your plans for the future with the house. I think you just need to take it one day at a time as I am sure that like me every day is different at the moment, some days I feel fine and other days I feel really sick and lethargic other days I get a lot of pain. So sit back and let your sister pamper you. My family including brother and sisters have been wonderful and I am sure yours will be too.

I agree with Bridget keep on keeping on, I will keep on keeping on as long as I can although sometimes it can be difficult I wont let it beat me.

Clara, thanks for you the advice I was taking what they gave me and it didn't work so I e-mailed my myeloma nurse for advice but she didn't reply so I saw my GP. She has said that it is the painkillers causing it because they have codine in, she advised me to take a lower dose on a regular basis I was just taking them now and again and she gave me lactulose and I must say I think it has worked. I think I will try to do without the painkillers if I can and try some other pain relief method. Anyone any ideas.

Gill x

[GillianParticipant]

Hi,

HOME at last!! I have finally made it. I was discharged on Tuesday and am staying with my sister. Who is proving to be the best sister in the world!!!

It has been quite an emotional journey and the reality of this has suddenly hit home. I am so full of tears, they don't seem to want to stop, and the stupid thing is i don't know what I am crying for!!!

Anyway on a brighter note, my discharge has gone very well although I can't stop sleeping, yesterday I slept until I was woken for breakfast, then woken again for lunch and at 3pm my sister decided I couldn't possibly sleep any more, so woke me up and I then went downstairs for the evening, bed at 10pm and you guessed it slept like a baby until 8.30. So big question should I get up and try and me normal or do I jus sleep and sleep?
My McMillan nurse is calling to see me this morning, so no doubt she will have some advice.

So I'm on my own now now don't go back to the hospital for 3 weeks, so another strange feeling…..

What a life changing time and I know so many of you are also going through this, but as we say you just never expect it to happen to YOU.

Love to you all
Gill C

[eveParticipant]

Hi Gill
So glad your out of hospital,do not worry about the emotional side .
Just take things slowly and try to do a little bit more each day,if you feel tired give into it your body knows best in this case,you will get on your feet again,just takes sometime.:-)
Make sure your wonderful sister takes a break,she will find it takes a lot out of her as well,as a carer myself I know its hard work,as well as keeping house,shopping and feeling the need to be there just in case!!
Every one will tell you,something has to give,in my case it was cleaning,a friend came and helped me,to get it back on track.
Best Wishers Eve

[Gill20Participant]

Hi Gill,

That is fantastic news, I am sure all the tears are the built up emotions of the past few weeks and the news sinking in but things will get easier. We have to remember we are on the journey now to remission and it will have its ups and downs but we will get there judging by the postings on this site.

I think the tiredness is the worst part, I find some mornings very difficult to get going but I have a business to run and staff to consider so I have to make myself move, more often than not I come round around mid morning but am finding it hard going. I have had to reduce what I do as I cannot think straight sometimes when I get the pain in my head. I have just bought a tens machine I am going to have a play with it tonight I will let you know if it works.

Take good care of yourself

Gill x

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