[StanstanParticipant]

Hi Does anyone know a billiant way of releasing the shock and stress of all this? Does anyone scream, shout or smash plates? If so does it help?
Any suggestions gratefully received.

Love Mary & Charlie :-S

[jmsmythParticipant]

Hi Mary

I have been screaming and ranting for 6 years. I have been to counselling twice and it really helped me. As Frank hopes to start STC soon I am feeling it all build up again (he's had a bad time with the CDT) I will be making an appointment to see one again. Don't know if you have been offered or even tried it but I felt it was a life saver. I think Min mentioned a few weeks ago about Reiki (think that's how it's spelled) I did research on it and it did mention relief of stress. Maybe I will ask for a session for a Christmas present.

Anyway scream and break as many plates as you want if it gives some relief. My best to you and Charlie
Love Jean x

[StanstanParticipant]

Thanks Jean

I think if I went to counselling, I would cry all the way through it at the moment. A friend of mine swims and she says that helps. Maybe a massage would be good. Hope Frank's SCT goes well. Will you be near and able to visit? I think I shall try Reiki or reflexology. Anything that helps.

Love Mary >:-(

[tomParticipant]

Na then Mary and Charlie

Yep we all get it more than we care to let on to be fair 🙁 yep I went to have a bit of counceling 😀 wouls i advise people to go ?? too true i would, I didnt think I (a big hairy ass docker) but yep it was just one of the things i needed and if I felt the need i would go again 😎

Now let me see Scream hell yes 😀 but i mad it into a sing along so no one knew i was doing it Ha ha.

Shout Hell Ye Even at the Dog Lol, make me feel better??? no cos it upset iccle Charlie (the yorkie) 🙁

Smash Plates?? HELL no woman we have to buy new ones ha ha, if you feel the need go out and buy the party ones (plastic) and they wont break ha ha. take no notice of Jean about smashing plates (unless your in Asda lol)

Stress is a bad way and to be honest all joking aside do what you feel you have to do to release it as its more harmfull all caged up 🙁 but the best way is to come on here and give your rant we dont mind we might be able to help, and its cheap as you dont use Ink 😎
Stay strong and please feel free to rant away.

Love and oads of Hugs to you both.
Tom " Onwards and Upwards" xxx

[jmsmythParticipant]

Mary I cried most of the way through the counselling. I couldn't (and still can't ) cry in front of Frank. He has enough to worry about without seeing me upset. So when I talked to the counsellor it all just came flooding out. It's great to talk to someone who is not affected with Franks illness who will not judge me about anything that I say. I used to get so angry when I talked to him and was able to vent my frustration and anger on him., He understood what was happening to me. Mary if you are thinking of going down that road, make sure you like the counsellor. The first one I went to was a woman and I just could not take to her. Then I got another one, Robin and he was great I could just talk and tell him everything that was in my head – things I would never have said to my family, as I did not want them to worry about me.

Hope you get something that suits you
Take care
Love Jean x

[StanstanParticipant]

Thanks Tom

The singing sounds cool. What is really hard are the steroids and the strange moods. You just want the normal person back. Hopefully when we are through this it may be nearly normal again.

Upwards & Onwards Singing.
Love Charlie & Mary 🙂

[StanstanParticipant]

Hi Jean

Maybe we shall try counselling as this is a hard thing to get through on your own. Or maybe singing like Tom does. I don't think my dogs would be too pleased if I screamed at them.

When you are on chemo, do you go out as usual amongst people and hope for the best, wear a mask or just stay indoors away from everyone? I have only seen one gentleman at the hospital wearing a mask so just wondered what everyone else does.

Love Mary & Charlie

[jmsmythParticipant]

Hi Mary

Frank takes the chemo every Monday. He feels off all day Monday but by late Tuesday he is feeling better. It is the Dex that he suffers from. The dose was cut in half but it still takes it out of him. When he's on the Dex he doesn't leave the house for about a week – the chemo – about 36 hours. As you know everyone rects differently. Hopefully frank has had the last of the Dex.

Best to you and Charlie
Love Jean x

[tomParticipant]

Hi Mary
Your more than welcome 😀 , its a hard place to be this MM malarky and all its treatments :-S but it will be worth it in the end am near 3 years post SCT and drug free 😎 it was an uphill struggle some times but the end result is Tom back to (near) Normal, but after us all going through MM we forget what normal is am afraid.

Stay strong and sing away.

Love Tom "Onwards and Upwards" xxx

[DaiCroParticipant]

Hi All.

I have had friends and acquaintances who have come along behind me since my diagnosis and they have died without ever having the chance to acclimatise to the fact that they had a life threatening illness . One particular friend found out that she had advanced cancer and died within three weeks… and another who had a heart attack and died in the ambulance on the way to hospital.:-(

MM is a strange and somewhat cruel form of cancer inasmuch as you are told that it is a terminal disease but that they can knock it back several times before it finally claims you. So, if you follow the pattern you will receive several forms of treatment, hopefully providing you with periods of disease-free remission where life feels fairly normal… until you relapse and move on to the next phase of treatment.:-|

That's the 'norm'… but there are always exceptions , as seen recently with our good friend Paul who developed an infection with low neutrofils and was not able to fight back… if the 'norm' doesn't get you then infections will.:-(

So yes, MM is a stressful disease to live with for the carers… and MM is a stressful disease to die with for the disease bearers… but the nature of the stress is two-fold. On the one hand it shows the possibility of years of life ahead of you from diagnosis (3 to 8 seems to be the median) on the other there is the possibility of infections and complications that can get you even when things seem to be going reasonably well. But we have a choice.8-)

We have the choice of making the best of the time we have before, during and after treatments… relapse is always a great shock and has the effect of being an awful reminder that ending of each stage brings the end nearer… but you pick yourself up and you move on. Of course this a stressful way to live… but we are living… and the next stage will afford some quality of life… more time with loved ones… and some kind of normality.:-)

If people need counselling then all well and good… go to counselling… personally I would rather concentrate on living… as best as I can, for as long as I can… and hopefully make peace with myself and my loved ones and family before I go.:-D

My daughter got married ten days ago… she brought the wedding forward a year to make sure that I could be there to give her away… the day went swimmingly and I was proud to be able to be there for her… but there was also a small bubble floating above my head that said [b][i](it's alright, you can die n[/b]ow)[/i]. A bit of gallows humour but also a small element of truth as well… not that Becky would ever allow such a thought to be considered but bringing the wedding forward was a definite intention to beat MM to the draw.8-) 😀

Perhaps Janet has these periods of stress where she just wants to scream and cry and let fly… I can't deny that our lives are sometimes uber-stressfull because of MM but it depends how you choose to deal with it. Her, our preference, is to get close, shut out the world for an hour, day, week and do normal things… watch a couple of films, read, be creative with crafts (Janet), be creative with music and words (me) and wait for the current small crisis to burst its bubble and then take heart and saunter on. If the crisis involves being hospitalised we assess the seriousness and act accordingly… putting family on alert (from mild to serious) and going with the flow… adopting the attitude of 'Whatever It Takes' and allowing the medics to do their jobs.:-) 😉

People must deal with the outcomes of MM in their own way… deal with stress as you see fit… but allowing it to become an enemy is, for me, not the way to go. MM is a horrible, cruel disease to have to bear with… but it also allows you time enough to make some sense of your lives and it gives you time with your loved ones that is denied to so many other cancer patients. Screaming and crying is fine… as long as the screaming and crying is not a form of denying… denying the fact that MM is terminal… denying the fact that one will have to go and one will have to stay… and it seems to me that the worst stress lies with those who have to stay… because they have to watch and wait for their loved one to die before having to bear the loss and grief and picking up the pieces.:-(

Janet will go through all that, I'm not a fool… but she has decided that she will bear that when it comes… and I am not to worry too much about that process. She wants me with her and as happy as we possibly can be until I go… and that will do very nicely for me.:-D 😎 🙂

Sorry for the ramble.;-)

Dai.

[eveParticipant]

Well put Dai

I think you do go through a time when you want to scream at the world,but you do get past that,and just think we will make the best of the time we have.

Mentally over the last 2 years I have mourned and buried Slim,looking back on it,I think it was just a way of preparing myself when he was very ill.We have talked about it and Slim tells me he prepared himself to die as well.So no denials between us.

We feel very lucky,and intend to enjoy every moment we have.Just in the process of booking New Zealand,will have to attend hospital every 2 months,for all checks Zometa and consultant,just told to go and enjoy are lives,but we are aware of the friends we leave behind,Love Eve

[DaiCroParticipant]

Hi Eve,

Thanks for replying… 🙂 I thought I had frightened people into submission… :-0 which was not my intent. 🙁

[i][b]I am writing this through you, not necessarily for you E[/i]ve.[/b]8-)

What I had noted was that the majority of the angry, stressed and disturbed contributors were nearly all in the early stages of the MM experience. I do understand the need to let fly and rant and rave at this stage… life is not fair and why should it happen to them? To admit an inordinate amount of stress and strain at this juncture is normal and the need to externalise the call for help is both understandable and valid.:-)

But… once the frontline and SCT stages have been breached there is the potential for a good length of time before the last steps that lead to end of life and grief and the life beyond. I'm glad that you mentioned mentally mourning and grieving Slim when he was very ill… I have had myself half buried or severely scorched at times and when slim was really bad I had him ready as well.:-P

But this level of stress cannot be kept up… there is a life worth living out there that will only be diluted and even shortened if a negative, worse case scenario is adopted and upheld. The way I look at it is this:

Frontline treatment >>> the first attack on MM… an attack that includes novel agents (Thalidomide & Dex for instance) along with a bone fide chemotherapy, Cyclophosphamide is bound to produce some nasties by the way of side-effects, mostly short lived with a return to normality within weeks of finishing the treatment. After that it is all about the preparation for the Stem Cell Harvest and the Stem Cell Transplant itself… a step into the scary unknown and extremely stressful indeed. But:

The SCT could realise a remission period of 3 to 5 years or more… followed by relapse and, if there are enough Stem Cells, the possibility of a course of Velcade followed by a second SCT… which, while usually shorter than the first, could still give 18 months to 2 years further remission. 😎

Currently this is followed by Revlimid and Dex, with a current (and expanding) median of 30 months. This is before the newly licensed Proateane Inhibitors (PI's) reach us from the USA… these Inhibitors (including 'Kyprolis' (formerly Carfilzomib which many of us have followed with interest) knock back the MM, allowing Revlimid and Dex to do their job more efficiently. 'Kyprolois' is just one of quite a few new novel agents becoming available through licensing from the USA and the European licensing should follow in the next 6 to 9 months… so there is hope for us all with the extension that these drugs afford to existing drug regimes.:-D 😎 🙂

So… as a possibility if not quite yet a probability:

SCT 1 – >>> 3 years
Velcade – >> 1 year
SCT 2 – >>> 1.5 years
Rev & Dex & PI – >>> 2 to 3 years
A.N. OTHER – >>> 1 year or more

Pure conjecture of course… but most of these are proven and the new ones (with more, bigger, better new ones following behind them) give an enormous amount of hope and takes the disease into the territory where the medics can call the shots for MM to be reduced from a terminal disease to a chronic disease (10 years survival rates to qualify). The medics think we are nearly there… and I am inclined to agree… even if I am unlikely to make the first draft. 😉

The above conjecture could easily be expanded by 2 or 3 years to get the MM patient comfortably into the 10 year survival rates… and that is a long time to hold onto stress. So be positive… allow the early stages of anger and stress and the need to externalise… but please then grab the initiative, stay positive,, be strong, enjoy life and squeeze every minute of love and joy and life that you can. 🙂 😎 😀 😎 🙂

That's my 2p worth. 😉

Dai.

[eveParticipant]

Hi Dai
With out taking over Stan and Mary,s thread I would slightly disagree with your figures,If they could only find why some people respond well and others do not,I can honestly say I do not know if Slim will get 6 months or 6 years,and i do not think the experts know either:-P

As for stress,mine was because I found people not doing the job they were paid for,I often looked at them and thought "you would not survive in the real world"I hated the fact that lack of care was the norm.,that was my anger,not why has this happened to us,I have never thought that,in our family a lot worse has happened and gone.The cards have been played.

I do except the emotional side at first is hard to cope with,this is the mourning side for life as it was,you pick up the pieces and think this is another learning curve,bring it on.I am sure I have other learning curves as we dice with Myeloma,and come to terms with what life has been dealt to me.
So Charlie and Mary,except this is a very emotional time,but you will get there,and as other things take there place,you will treat them like learning curves,or as Tom says onward and upward:-P Eve

[DaiCroParticipant]

Hi Eve,

In a previous lifetime, while doing my stint as a full-time union official for the NUM, I was put in touch with a TV producer who 'collected' people who could provide resources in the way of interesting human beings for TV programmes. I considered myself 'interesting' (especially when the daily rate plus expenses for travel and sustenance was the equivalent of a weeks wage) so while I provided people I always included myself which was not a problem for my producer friend. (about six programmes, plus a feature film, over a three year period.) 😎

One show was Sarah Kennedy's 'Today', on which I appeared four times in two years and one programme in particular was on the subject of stress. There was an audience of approx: 100 plus a few celebrities… on this show they included Ernie Wise, the actor Alfred Marx and Andre Previn. The idea was to determine what occupations raised the most stress and there was a bank of experts to explain the different kinds of stress, with the exposition of the top three 'stressed' jobs.:-|

According to the top expert…Third was deep sea divers, second was soldiers on active duty and first was coalminers. This stunned the A&E Doctors and Nurses, the surgeons, firemen, police and paramedics etc., who had argued their case volubly and clearly.:-0

The expert said that stress was only dangerous if you internalised it. That is, doctors, nurses etc., etc., reacted to stress by doing something about it… whereas the divers, soldiers and miners worked in conditions where they outwardly suppressed danger but internally their senses were ever sharpened by the elements around them over which they had no control.:-P

Carers of MM sufferers get extremely stressed and angry but they are not unlike the doctors and nurses in A&E inasmuch as their stress is an outward phenomenon… reacting to outward expressions of anger, confusion, helplessness etc., whereas the MM sufferers themselves have little or no control over their disease and the further they travel down the treatments route the more often they are exposed to surges of internalised stress. :-/

This is evident in the attendance at consultations, where every four weeks they have to wait to find out if their treatment has failed or not… relapse taking them one step nearer the end, success giving them four more weeks of progression. Of course the carers share this experience but they cannot truly share the internalised stress of the sufferer. While all MM sufferers are exposed to an enormous amount of stress it is those that actually reach the end of treatments with nothing else to try that get the full gamut of internalised stress. 😐

But I am convinced that stress, in whatever shape or form, can be managed. You recognise it, acknowledge it, address it and externalise it. Giving in to it or allowing it a credence and precedence it does not deserve only makes the whole process of living and dying with MM much, much harder… on yourself and those you love.:-(

Which is why I believe that there is a time and place for anger and external stress at the beginning of the whole MM experience… after that it is a self imposed misery. If you take away one set of behaviours (stress and anger) you leave room for other, far more healthier behaviours (self-determination and positive thinking). The first two are destructive, the second two are constructive… it takes work and self awareness but the sort of stress that we associate with MM can be replaced with better behaviours… and I am convinced that those that adopt such attitudes not only live longer but also cope much better with both the illness and the progressions… good and bad. (See exhibit 'A' Tom Lappin. 😎 )

Anyway… that's my (cheerful) rant… externalised and out there… and it is an excuse to have a mild rant and in no way aimed at you. 😉

Dai.

[eveParticipant]

Hi Dai
Do not worry I do not take everything to heart,lol!!:-P

You have managed without knowing it explained a few of the things that have been bothering me for some time.If I may explain.

1 Slim was a commando marine for 24 years.
2 Slim also been a diver for for well over thirty years,professionally for
about 6 years when he came out of marines.
3 Never been in the mines.!!!!

His attitude all the way through this Myeloma has been

1 Why worry about something you cannot change
2 Never expected to live this long anyway
3 Lets just get on with it,I can hack it attitude

So for me your explanation explains a lot.

As a carer,and a person who likes to be in control,I am the worrier in this partnership,Slim just gets on with it and relies on me,to keep him save.
I take the attitude,if I can keep one step ahead,I can help him.hence the worry,and the knowledge that one day,I will fail

I suppose we all deal with stress in different ways,and we all know stress kills people,I have dealt with stress in work situations and must say I enjoyed the adrenalin rush,but when it comes to my family illness,it is a very different ball game,one that leaves me struggling to cope, if It had been me with Myeloma,I do not think I would have coped as well as Slim.

So how does the person cope with stress,that,s Mary,s question,????????

Do you pop a pill,which does work
Do you do alternative treatment
Do you do counselling
Do you adjust your way of thinking (need lesson in this )

All food for thought.Thank you Dai. Love Eve
Hence the 4am job.

[Author]

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