This topic contains 51 replies, has 17 voices, and was last updated by 
DaiCro 11 years, 11 months ago.
Hi
I'm a 48 yr old female , diagnosed in August this year with Myeloma , I've read lots of info & read lots of statements on this site I think you are all great & positive ,
My major problem is coming to terms with the diagnosis I am very depressed & can't think of anything else but the Myeloma at every waking moment !!! …. It has taken over my life ………
I am on a trial CTD cycle 5
Any advise on coming to terms & trying to be as normal as possible would be very grateful
Thanks
Kes
Hi Kes
I was diagnosed nearly two years ago and it certainly has its challenges!I did find that being able to stay at work (thanks to a very supportive manager)and trying to do 'normal' things really helped me.
I think everyone copes in different ways according to their personalities and what support they have. If you are assuming that everyone else is 'strong'and 'brave' (and all the other words people assume you are when you tell them you have cancer) then of course no one is all the time.:-/
It also does depend how you feel in yourself. The dex in CTD can give you terrible mood swings and make you depressed plus being tired from the thalidomide. Have you told your Dr how you feel?
Life will get better, just hold on and take each day as it comes. It is hard when you are on the medication and your social life seems to be all hospital appointments but when the medication has worked and you feel better you can plan a holiday!
I hope this rambling message helps a bit,
Alison
Hi Alison
Thanks for kind words , yes I've spoken to the Dr & he gave me some medication
I feel shaky & light headed most of the time
Did you have the SCT ??? .
Ps …. Ya not rambling 🙂
Karen
Hi Kes
I have just finished last week my 6 cycles of CTD
Yes there are side effects which increase as time goes on, steroids made me hyper & very weak
After each four days,over time my eyesight went very hazy, feet cold , dithery & head was away somewhere else
My senior nurse at the clinic said it would take some weeks for all the drugs to leave my system , but already eyesight is a bit better & I have reclaimed my brain
I have my first appointment tomorrow at Christies to set up my SCT , I hope in jan
Do you have the support of partner, family friends. Do you work , which apart from money is company
I am a firm believer in being very positive in all things, including MM , not easy for everyone
I am very lucky to have support from lovely wife, family & friends , also still very busy working part time
Talk to the ladies at UK MM or your doc , do not let depression take hold
Park the M M in a box somewhere else for as much time as you can, only let it disturb your life for as little as possible, agian not always easy, when possible keep busy !
This site is great for support & advice, learn all you can about MM
All the best
Peter
PS : male & well past bus pass & sell by date !
Dear Kes,
I found out I had myeloma four and a half years ago and at a similar age to yourself.
Before diagnosis I was out of breath, a bit tired and had some odd episodes of flu like illnesses which indicated my immune system was not working as well as it should, but in many ways I was brilliantly functional and working full time at a very demanding job. After diagnosis, by the time I came to the end of the third cycle of CTD, I was at a very low ebb. I was crushingly fatigued, my hands shook, my brain had slowed down and I even passed out a couple of times. I spent a number of hours in bed during the daytime to conserve my energy and I wondered whether I'd survive to when I'd have my transplant.
Looking back, I've realised that I couldn't tell the difference between succumbing to my illness and being on heavy treatment. I'd been given a cancer diagnosis and then I had felt very ill – so it made perfect sense to me to be preoccupied with my condition. Now I know a lot more about side effects and I can see that some of my difficulties were a response to the meds I was on. Of course, there's a parallel path of emotional re-adjustment, as you chew on how your life has changed. One thing that helped me when I was on CDT was to have some goals. I aimed to cook a
simple meal every day. Sometimes I couldn't do it. The bottom line was to read a story a day from a book of short stories and to discuss it with my husband. Somehow I got through.
I've continued to try and set myself goals at different stages of my illness. There was one time when I was having major symptoms of withdrawing from the pulses of steroid I was on. I felt so awful that walking to the loo was a challenge. I got my husband to buy me a pad of paper and some pastels. I set myself the task of drawing something. The hours went by and I felt better.
I've realised that the rock-bottom feeling can often be from the treatment, and that when it's over, there are periods of relief and relative normality. In the last four years I've travelled to some very interesting places, I've made new friends and developed myself as an artist and photographer. Because I understand the meds better, I try to be on a dose that suits me. When I relapsed after transplant,I wasn't on 40 or 20mg of dex a day- my oncologist and I found out that 8mg can work for me. I still have shaky days psychologically as I wait for test results or grieve for my old self. Today I decided to cook a meal for a bereaved neighbour, and I had to do it fast because he had a meeting to go to! I'm working on a series of graphic images. This weekend I will travel to Edinburgh on my own to meet a group of young women who are visiting from overseas and who are friends of someone I know. I'm on a low dose of Thalidomide at the moment and I am much more functional than I was when I had full CDT.
Perhaps I am more philosophical about my illness now: I will only die once, and in the meantime there are many things I can do, including new ones. If I survive for ten years, then I will have had myeloma for about a fifth of my life. Surely that's quite a phase and I wouldn't wish to spend all that time being paralysed by my illness.
Kes, I'll give you one more example of a difficult situation my husband and I faced. This wasn't linked to my illness, but it happened fairly recently. As part of my husband's work, he had to travel to a particular town in Scotland. I went with him and we arrived late at night at the B&B that had been booked for him. It was raining, the room was cold (central heating busted), the hot water tap didn't work, the room had such a low ceiling that my husband could barely stand up straight, it was too late to get any food anywhere. I did not feel sleepy and we didn't have an umbrella. The only thing we had with us apart from a few clothes was a camera. We decided to have a photographic competition- who could take the best photos within the boundaries of that room on that night. It ended up becoming very entertaining and we both did some interesting work. Before I knew it, it was two am. I'd had a wonderful time. Sometimes it helps to focus on a skill or passion you have whether it is already developed or maybe latent. The main thing is that can sometimes lose yourself in an activity and can try and live in the moment, that you are still developing and changing, and that you find positive ways of relating to the people who love you.
Best,
Eva
Thank you
For your reply , yes mm does take over my thoughts . I do have a husband but he but he doesn't really understand what's going on , he's not a big reader so hasn't read the literature !!! Only what I explain to him ,
I'm a very private person so not got many close friends (I sound a right saddo) , I spend a lot of time on my own !! , like I said I don't feel safe to drive as very shaky & my brain is like mush also I too have noticed my eyesight as changed .
What is your treatment now that you have finished your cycles ???
Regards
Karen
Dear Eva
Thank you so much for your long & informative reply it was very interesting to read …. You sound like your getting on with things now & that's great .
I will try set myself goals but its making myself do it that's the main problem !!!
Have a good weekend
Regards
Karen
Hi Kes,
Hopefully you will have MM for a long, long time (not something you would usually wish a cancer patient). 😉
Like Eva said, you could have MM for 10 years or more… a 5th of your life… it is with you now and it will never go away. There was Kes pre-MM and there is Kes post-MM… the old life has gone and you have to make a new life… based around but not governed by, MM. 😐
It doesn't matter what I say, what anybody says, even if you agree with what is said wholeheartedly… as you have already pointed out. 😐
[quote][b]I will try set myself goals but its making myself do it that's the main problem.[/b][/quote]
There's the rub… making yourself do something… however positive, however beneficial, however life changing… but only you can do it. Let's step back a little here.8-)
[quote]My major problem is coming to terms with the diagnosis I am very depressed & can't think of anything else but the Myeloma at every waking moment !!! …. It has taken over my life.[/quote]
Diagnosed in August… and since then you have been on a Merry-Go-Round of treatment (5 Cycles of CDT) blood tests, this test, that test, poke this, pull that and BTW come to terms that you have a terminal disease without the option. :-0
[i][b]For heaven's sake K[/i]es.[/b]
[quote]Any advice on coming to terms & trying to be as normal as possible would be very grateful. [/quote]
Yes… be gentle on yourself… be kind to yourself… you have just, only just, been diagnosed with a deadly disease. Learn about the vagaries of the disease from this site and ask as many questions as you like on this forum. The nature of MM in the medical world is changing rapidly. at the moment it is a terminal disease… but if enough patients last a total of 10 years or more then MM will be downgraded to a chronic disease… and as far as I can make out from the different boards in America (always a year or so ahead of us and where most of the new treatments are developed) the downgrade is very close indeed… within the next couple of years or so.:-D
If you were telling us that you had come to terms with MM… that you had developed a strategy for living with the disease as part of a new Kes… divorced from the old life and embracing the new… well.I'd say, after4 months, that you were in denial.:-(
But you are not in denial… you are frightened, devastated by the prognosis, dreading the future and wondering how the hell you are going to cope. Good… I am quite happy to declare you absolutely normal.:-D 😎 🙂
It is enough for now that you are Cycling through your frontline treatment. It is good that you have found this forum… with everyone ahead of you an expert in what comes next… a group of friends who will welcome you at anytime… to ask advice, chat about life and the lessons to learn about life with MM… including work, benefits and practical help… and especially the room, space and trust to be able to rant, scream and generally out your fears and frustrations.8-)
The time will come when you will tell us that you have come to terms with MM… that you have developed a strategy for living with the disease as part of a new Kes… divorced from the old life and embracing the new… but then again you won't have to tell us… we will see it for ourselves… and see it we most certainly will Kes… it's only a matter of time. 🙂
But more time than 4 months, that's for certain. You could easily reach that 10 year mark… hopefully much more and you will not be wanting to waste any of that time on negative feelings. 🙁
Welcome to the site Kes – I wish you were not here… but you are… and together we, the whole forum and all these new friends that you are bound to make, will deal with it. 😀
You are not the first to feel exactly like this and you won't be the last… and before you know it you will be welcoming new members to the forum and reassuring them that how they feel now will not be forever.8-)
Be gentle, be kind and take all the love you need to and for yourself. The rest will follow.:-)
Regards
Dai.
Hi Kes
Welcome from me too, and as others have said, we are all here to support you all we can.
Goodness, as you have got through to round five of CDT you are doing well. Those last weeks go very quiclky. I remeber counting the days off: nineteen, eighteen etc!!! Just be warned you could have a bit of a dip as the chemicals work their way through your system. I did, and am only just really getting back to something like normal two months later.
It is very natural to feel low, but as Dai says, things are so much better for us MM suffers now, even than since I was diagnosed 2 years ago.
Are you going on to a SCT? I didn't. If you are, because it is quite a gruelling procedure you may be as well to see if you could get some counselling support, seeing as you have been so low in spirits.
Is there a Support Group near to you or are you near enough to one of us to have a visit? There isn't a Support Group in Bradford and I would have found this an extremely lonely journey were it not for this Forum. (THANK YOU ALL SO MUCH!!!!!)
What are your main physical symptoms? Can any of us give you any advice about those?
Finding new things to occupy you is difficult. I am working on this. I am wondering about getting an Ipad so I can watch "TV catch-up" on it, read books and play games. I have also started a small Slimming Group in my home and am thinking what other Group would appeal to my retired neighbours.
Do keep coming back to the Forum for support.
All bast wishes and love.
Mavis x (aged 67yrs! Have you seen the Under 50s Section?))
Hi Karen
Treatment , I have a monthly infusion of Zometa , started last week
Also had my first appointment at Christies today re the SCT which I hoped to start in Jan
Had long chat with the clinical director , we both threw questions at each other
I have had a very good result from the CDT with little or no problems
Then he asked outright if I wanted an SCT, I said absolutely yes, apparently I am a good candidate for an SCT
Then he said we need to do it ASAP to stop the MM beast trying to make a comeback as I was now not on chemo, pp at 3
Next thing sent down for loads of tests to see if the old body can stand upto the chemo & hospital food !
Proposed start date week on Mon , which would mean I would be in over Christmas
Wife & self in shock !
It would be good for you to find your local MM group & go to the next meeting, take husband & get him up to speed
Also go the the next info group meeting near you , very good to meet others & pick up loads of info., also call MM UK & subscribe to the MM mag,
Stick with this site , beats the soaps !
You have a very wide cross section of good people in this club , free lifetime membership , lots of help & advice , a real moral booster
I told the hospital if I don't get to the queens telegram , I will sue the pants off the lot of them
Keep positive thoughts
Peter
70 & counting
Hi Peter
Really pleased all went well with the CTD , all my numbers appear to be going in the right direction , keep seeing this PP ???? I'm presuming its Paraprotien ?? I don't know anything about this !!!! ? That will be a question for my nurse .
When I was first diagnosed my Light Chains were 14,600 but at last check had reduced to 80.2 .
I've had 1 blood transfusion as I became quite anaemic .
I met Proff Russell at my local hospital Lincoln .. he works at (Nottingham General hospital) few weeks ago about SCT. & he wanted to get me in before Xmas which meant I too would be in at Xmas but the consultant said he wanted me to have 1 or 2 more cycles as I'd only had 4 … So don't know what's happening at the mo !!
Have you had your Hickman line fitted yet ??
Good luck with all & hope the SCT gets moving ASAP
Regards
Karen
Hi Dai
Thanks for your reply . I much appreciate all advice & info given .
I too wish I wasn't a member of this forum but I am & I'm glad I found it !! . It helps to know other people know what I'm talking about even though I wish they didn't xx
Regards
Karen
Hi Mavis
Thank you for welcoming me to the site forum , yes I am on trial X1 so will be having SCT if all goes to plan .. It will be carried out at Nottingham general hospital as our local hospital isn't equipped (LincolnCounty)
My main problems at the mo are aches and pains mainly in my ribs , & the tremors my whole body shakes , typing is a nightmare & holding a cup !!! the problems only appear to have become more so in the last couple of weeks .. Also my brain doesn't function proper , much less concentration & I can never remember anything !! . I feel weak & wobbly wobbly .. I'm presuming most of this is the Thalidomide ?? I'm currently on 150 mg each evening ..
Thank you again
Regards
Karen
Hi Karen,
It's good to see that you will be going through your SCT at the City Hospital, Nottingham. It is where I and several others here attend (I live 18 miles from the hospital one way and 12 miles from Grantham the other).
The City Hospital has a first class, purpose built Haematology Centre with a Day Case Unit (Where your stem cells will be harvested) a clinic (where your bloods are taken) and consultants rooms beyond and 2 floors above, Toghill Ward, dedicated to Haematology patients only… and the second floor, Spencer Ward, with 19 self contained rooms, dedicated to SCT patients. 😎
All the facilities are excellent and all the staff highly trained… you will be well looked after. 🙂
Where to you attend for general treatment and consultation?
Regards
Dai.
Hi Kes and welcome from me to. This is the best place for you to be. We are all a friendly lot and there is a mindful of I formation, advice and friendship here. It is hard coming to terms with Mm. My hubby was diagnosed 6 years ago with smouldering MM and started CDT in June and has just finished his last cycle and waiting for date for SCT. Frank suffered terribly with shakes, he was very wobbly and memory was non existent while he was taking medication. About the third month the consultant cut thalidomide by half. He stopped his last med on Thursday and he said already he is starting to feel human again 😀
Keep strong and this is also a good place for a good rant!!!! Take care
Love Jean x
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