[LornaParticipant]

Hi all

Well I haven't really been on what is now not the new forum, although it still seems new to me. I digress. 😉

As a carer I thought I would ask others in a similar position whether it is just me or if the anger I still feel after more than two and a half years is normal?

When Mike was diagnosed in Feb 2010 the overriding feeling I had was one of "it's not fair" as we only met in July 2003 and I had always liked to think that we would celebrate our silver "wedding" anniversary, the myeloma seemed to steal that dream.

Don't get me wrong, I don't spend every day whinging about it, just occasionally when people talk about celebrating long marriages.

I need a good talking too! 🙂

Lorna

[stewasParticipant]

Lorna you have a right to be angry as you like me feel deprived of doing all the things at this time of life you should be doing. Having brought up 3 daughters we thought we would be taking trips abroad not constant trips to doctors & hospitals. My husband is in hospital at the moment having his 2nd SCT which is horrible having to watch him go through all this treatment again and praying it will last longer than the last time. Its not just us it effects my grandchildren just can't understand why there Papa is sick again and stopping him from doing things with them that he would like to.Remember you have to look after yourself as well and try and always have sometime for you.I don't participate on the site very often but read the messages most days and it helps me to know that I am not the only one going through this nightmare.

Sandra x

[LornaParticipant]

Hi Sandra

Thanks for getting back to me. I remember how tough a SCT can be for both parties so you have my sympathy.

Lorna x

[susan123Participant]

Hi Lorna,

Hope you and Mike are ok. Just to let you know you are not alone in feeling this way. Martin and me feel exactly the same as you and mike, cheated of our future together as we have only been married 8 years.
What we have to hang on to is the hope as a patient and carer that the future years will bring either a cure or longer remission, I know it's very difficult to continually keep your chin up and carry on with all this hanging over us, but things are moving very quickly now with all the new treatments. Angry – I am livid !! that I finally meet the man of my dreams (corny I know, but true ! ) and I get Myeloma as an unwelcome wedding present. Don't be too hard on yourself, it's a nightmare for patients and their carers, but as patients we don't like to show it, as it only worries our partners even more.

Love Sue xx

[DaiCroParticipant]

Hi Lorna,

I don't feel cheated, just immensely saddened that our time together has come to be a countdown through the various stages of a terminal disease, rather than a slow but happy decline through old age. But then again I know of so many people only a few years older than me (59 on Xmas Eve) who have suffered from heart disease or other forms of cancer, including brain tumours who have all died since my diagnosis of MM, while I continue through my stages.:-( I can count 6 who were either close friends or very happy acquaintances.

And then there are those, in the same age group (60 to70+) who have succumbed to alzheimers or age related dementia (one as young as 56). There are of course a few exceptions… I have friends in their 80's who are still actively together in their own homes, in reasonable to good health, enjoying life to the full… but they are exceptions… most of my elderly friends have a partner with health problems, a good percentage in care homes with age related dementia… they, for me, are the hardest to bear… it seems that only a year or two they were the life of every party… and every drop in visit somehow turned into a party.:-)

Before moving up to Nottingham for the quality of facilities and treatment we had a historic pub and restaurant in Fishguard, Pembrokeshire, West Wales… with a wonderful group of staff, nearly all still in touch through Facebook and although the mainstay of customers were visitors and tourists our local clientele were mainly 35 to 75 and enjoyed leisurely lunches and evening meals where we got to know them quite intimately.

I also ran a publishing enterprise 'Dragon Tales Wales' where I took the bones of Welsh folktales, rewrote them with characters and dialogue (from 400 words to 8,000) and then took them into the studio where I turned them into a series of short talking books. Once fully established we were going to give up the licensed business and concentrate full-time on 'Dragon Tales' based in Fishguard, adding to the portfolio mine own works and those of other local writers of great talent and the most wonderful set of local stories. I even had a well established local writers group, 'The Acorns Writers Group' (The pub was the 'Royal Oak') that still meet every Monday. 😎

I had a Irish music based Folk Session every Tuesday with their annual 'International Fishguard Folk Festival' now in its 12th year, that takes over the whole town, (every May Bank Holiday for 4 days) sea shores, the local theatre for the formal concerts (ticket based but every thing else is free) and almost every pub has a session going on, organised and spontaneously, mainly based at the "Royal Oak' complete with Marquee in the large beer garden looking out over lower Fishguard and the old quay, with the modern (1901) harbour over to distant left and the 'Old Fort' complete with 18th century cannons sitting on guard over the 'Lower Town'… the setting for the Richard Burton, Elizabeth Taylor and Peter O'Toole (as Captain Cat) in 'Under Milkwood' during the 70's. (Moby dick was also filmed here in 1952 – my father's claim to fame, he was then 23, was that he was an extra in quite a few scenes.8-) 😉

I also provided live music on Friday and Saturday nights (quite often myself and a friend or two during the quiet months of winter). We held a weekly pub quiz (League in the winter, local hospice charity during the summer) and often played hosts to the RNLI after their weekly training stints (Both Janet and I have had the honour of skippering the boat out at sea… a full 20 minutes a time.8-) Many of the crew used the oak as their local (I had won many awards for my 'Real Ales' so perhaps that was the main attraction).;-)

So I have much to miss… many friends, colleagues, the town woods, mountains and sea, especially the sea. My 'Dragon Tales' lies frozen… with lots of CD stock… although I have completed my first full novel 'Hexicum' (160,000 words) since moving here and I have started my second novel 'Birth Of a Wiseman' which I am determined to finish before Xmas.:-P 😉 I also have summaries for 4 other novels… how many get finished is out of my control, although I will be trying my hardest if I can scape another year, 🙂

I was brought up in Fishguard… left, due to my parents divorce and my Dad's determination to make a new start in Nottinghamshire, when I was 14 and finally returned when I was 40… and was forced away thanks to MM when I was 45.:-(

If I do feel in the slightest bit robbed it is in being forced away from that life to one which is 70% sedentary, based on songwriting and my novels… but being at the whim of infections and other side-effects (apart from relapses never actually MM) my doing plans are often shelved or put back for another day… such is life with MM.:-(

I hope your sense of being cheated does not impinge too much on the here and now… there is still time to talk and do so many things… talking about things that would normally be shelved as too intimate, too telling and doing things that please you both, being answerable to nothing and no one… simple things with little expense and people too see and places to go… even to that man about that dog. 😉

I wish you both well and freedom from anger… if you are not angry then there is time and space for other emotions… far more positive and far more healthy.8-)

With best and warmest regards.:-)

Dai.

[Anonymous]

Hi Laura

I fully understand how you feel. I met my husband 15 years ago after a failed marriage and bringing up two girls by myself I was sceptical of ever finding mr. Wright and then I met henry, the love of my life. We have 4 children between us who are all grown up and such a joy to be with. We started to plan our retiring years, where to live, places to visit etc. and then henry went to the doctor because he was feeling so tired all the time and after various blood tests myeloma was diagnosed. Our world just came crashing down. We all just concentrated on getting henry through the chemo and sct. A couple of weeks ago he was told he was in remission which is such good news. Today is his birthday and we have had a lovely day. I did feel incredibly angry and snapped at anyone and everyone who got in my way. I would cry on the train to work and hide from friends and work colleagues as I couldn't face talking to anyone about my lovely husband who was so ill. In the end I went to the doctors and put me forward for counselling and it was the best thing I did, it helped so much and whilst I do still have little patience for people who moan when they have a cold and when I'm asked at tescos checkout 'how are you today'. I do feel less angry and a lot calmer. We now have to enjoy our life now even though life is different as I can't seem to stop fussing and worrying and henry has changed because of all the treatment. But we have each other and our love is even stronger now and so is our bond with our children and family. It was Henry's birthday today and tomorrow the children have bought him 6 laps round a race track in a Ferrari :)! He couldn't have done that last year. So all in all things are calmer but as I said I do understand and deep down will always feel some anger and 'its not fair' But love and support a great source of comfort. Take care. Love sarah xxxx

[eveParticipant]

Hi Everyone
I do not think I ever felt angry with are situation,sorry we had put off doing many things,wish we had not put them off to a later date,but that,s life,you take your chances.

In fact I felt lucky,we do not have much money but we have not waited for retirement to do lots of things,I just looked at people,s lives around me.So anger has never come into it,I was angry with my doctor,because he did not do his job properly,but that,s another story.

I take the attitude there is always someone who is worst of than you.If I ever feel down,I consider all the people I know who have had far worse things in there life,it helps me.Eve

[LornaParticipant]

Again, thank you for all your kind replies. I will bear in mind the advice you have all given.

Lorna x

[eveParticipant]

Hi Lorna

Hope you are feeling more up than down,this illness brings you down to earth,big time,but saying that it does make you appreciate what you have,in your case how lucky you are to find the man you love.
Some one once said to me life is like a card game,you have been dealt your hand and it is how you play it that counts.
I feel down at times and have to give myself a kick up the backside,some times I wish I could be one of these people that went through life with no problems,the last 2 years have been bad,Slim with Myeloma nearly loosing him,my grandson dying,and now wondering what this year will bring.:-S although no one would choose to go through this,I do believe some good has to be found in the last 2 years.I am a non believer so it is not religion that gives me this strength,I suppose its looking for the good that comes out of bad things,this illness gives you time to appreciate what you have,and in many ways time is the good thing about it,Love Eve

[keznmelParticipant]

Hi Lorna..

My partner Melvin was diagnosed with a Solitary Plasmacytoma on 15th December 2010, so our journey started nearly two years ago. Reflecting back to those days, I felt scared and unsure of what it all meant, I remember that. It was almost like I went through some kind of grieving stage??! Things have really progressed for Melvin now and MM has certainly taken up residence in his body and our life is being effected each and every day. I now feel very angry. It comes and goes …. I consider myself 'a coper' so I get on with everything as best I can but I do get angry more frequently now. I feel angry that we ..us and our three children have to live this life. This wasn't what I had planned! Then comes guilt for me – guilty for feeling selfish maybe??

It sure is very hard isn't it?

How are things for you right now? How is Mike?

Take care of yourself Lorna…best wishes x x x

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