[TinaPParticipant]

Hi,

I had my SCT Oct 2012. I am in a good remission so my consultant tells me.
So why do I cry so much on odd days, and have almost zero appetite.

I should be feeling really elated I have got so far.

I have see the psychologist on the haematology ward and she was lovely.

I am now still on MyelomaX1 and trialing Revlimid, I was allergic to the 10mg and came out in a rash, so the dose was reduced to 5mg and piriton
But the rash came back all over me this time and not just arms and legs.
I stopped taking the Rev – the rash has gone and I just hope I have done the right thing.

See my consultant 11th Sept.

Sorry to moan

Tina

[tomParticipant]

Hi Tina

Aww am Sorry you get a wee bit tear full some days, me I am same but I was long before SCT am just a weepy Guy, you tell me someone has had a new Baby, dog or Budgie for that matter and eyes fill up, and you don't want to see me when I have watched little house on the prairie.

But seriously its good to shed a few tears, Good heavens we have Myeloma that knocks us strong ones for six so as to shed a few tears, I still do but I do it 😀 its a release and a darned good one, Let it flow Tina but still go and get a iccle bit of counselling I did and it done me the power of good.

Keep well and stay strong Tina you are doing great.

Love and Hugs to you
Tom Onwards and Upwards xxx

Ps and it aint a moan Trust me xx

[DaiCroParticipant]

Hi Tina,

I am sure that the emotional side of dealing with such a dreadful disease such as MM comes out in differing ways dependent on the emotional make up of the person.:-)

I don't want to die… not like his… at the discretion of an unforgiving disease that lays us bare to infection or literally strips us inside out, from our plasma cells to the very bones of us. However well we respond to treatment and however long we get in remission from the various treatments available to us, there is still the impending end that goes along with the 'terminal' part of MM. Of course we are cheerful and cheery, for ourselves, our loved ones and friends and because we know, that however we meet our end, it is not going to be today, or tomorrow… it may in fact be years before we reach that stage where we have to start saying our farewells. Knowing that, it would seem pretty silly of us to go around shouting 'woe is me' and weeping and blowing our noses on our best friend's doilies.;-)

But there are times when our emotions, especially those that deal with fear, creep up on us and take us by surprise… and in response we weep… and sometimes even wail. It's OK… its allowed. While I've always been in touch with my feminine side, these days I don't need much excuse to blub at films, or weep with joy at a kitten being used as a floor-cloth by a dog on YouTube… and at those times when I get overwhelmed by my lot… my bad luck at getting the short-straw in the guise of MM.:-P

Its OK, its allowed, its alright.:-)

Tell a friend or a loved one… or us.8-)

Dai.

[eveParticipant]

Hi Tina

I am a great believer in a good cry,to me it,s just away of releasing all the tensions and fears,better to cry than get angry.

You have just had a very hard year,and you had something to fight for,your life,now you are in remission,you do not understand why you feel like this now,it's because you held it all back at the time,and now when every thing is calm,it's coming to the fore,I do think you need to see your doctor before depression takes a hold on you,the sooner the better,

As for coming off maintenance ,other people are doing the same,mainly because there health is being effected,at this stage your own health should be your priority,so you can enjoy years of remission . Good Luck Jean get the Motorhome out and enjoy a few holidays. Love Eve

[VickiParticipant]

Tina

Like my Colin you have been through something huge. I agre with the others , it has been a massive challenge to get this far. Dai, Tom and eve hit the nails on the head. I get sad, and angry sometimes for our lot and that's only me the supporter, so why not you. Crying is a great release to tension and emotion, I don't blame you and glad to hear you have seen the psychologist too :-). Tina you need time to,adjust, it has only been a short time and the hill to climb was steep. Try to find and enjoy some good times. Grab life with both hands and wring the best out of it you can. That's what we are trying to do with a few blips on the way. Sorry if this sounds preachy….not meant too just want to be encouraging 🙂 🙂

Vicki and Colin xx

[tonyfParticipant]

Hey Tina, you are allowed to cry, I do, on my own, and I'm a tough old boot!
Had my stem cell transplant in February 2013 . I am on the myeloma XI trial, but opted to go for no maintenance, but remain on the trial. So no drugs, no treatment, next appointment in 3 months time, what have I got to cry about, don't know but I do, quietly and would not let family see.
So I think you're allowed, just don't do it too often!
Come on girl, get out there and enjoy life.
Regards
Tony F

[janwParticipant]

Hi Tina

Living with an unpredictable and incurable cancer is emotionally tough and full of worry for all of us as well as our carers, family and friends. The diagnosis of cancer comes as such a tremendous shock, the treatment is intense and during any relapse period we have more time to think about the changes to our lives, possible future treatments, shorter life expectancy .. all of which are not exactly uplifting topics for anyone!

You constantly read in the media how cancer patients are brave, with advice to remain positive, which is all well meant but realistically there are going to be days when we are worried, upset and sad about the whole situation. It's just trying to manage any such anxiety as best as possible and for some of us a good cry tends to release the bottled up stressful emotions. Like Tony, I try to keep the weepy times to myself rather than upset the rest of the family.

Also I think with you living at home in uncertainty with unanswered questions about your current medication is certainly going to cause you worry and concern, especially as your next clinic appointment is not until the beginning of September. But at least next month you will have some current blood tests and the opportunity to talk to your consultant about the decision to come off maintenance treatment and discuss the best way forward for you.

I believe in counselling as an effective way of tackling our range of emotions which we experience when living with cancer – it's better than bottling up all of your emotions. Because you felt better after seeing the psychologist, I would ask at your next hospital appointment if you could arrange some further consultations – any such help is invaluable.

Take care.
Jan x

[mhnevillParticipant]

Hi Tina

It was good to catch up with your news. Sorry you have been feeling down inspite of a good remission.

As Jan says, you have been through a lot. Not just the treatment, but also the Trial. Maybe a period without treatment is just what you need so you can enjoy your remission and do some of the things that will give you pleasure.

How is your shoulder and your health generally? Will you be able to plan a holiday? I have now managed two with lots of planning and "aids"! Now planning my third.

The talking cure with a Counsellor often helps when you are down. I also found taking Jet's advice and making a list of things I want to do before I die has been very helpful!

Lots of love. Keep in touch.

Mavis x

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