[eveParticipant]

Hi Everyone

Over the last few months,I feel that Slim and I have joined another roller coaster!:-P it's one that now has more lows than highs,we have left behind any hopes of having any form of normality in are life's ,we have both recognised it but not spoken to each other about it,fear of upsetting one another.

It's taken me sometime to post this on here,although a few of you know,from private communication,it's a strange place to be and to talk about it,and only people like us,who are taking steps on the downward path,will understand what I am talking about,yet you never see any post until people are near the very end of there life's,

I have to ask why?????
Is it because we do not want to admit it ourselves????
Or is it we do not want to be the bearers of bad news????

This time more than ever we need support,we need practical advice,
We do not need commiserations ,that said in the nicest possible way,sad but true,no offence ment!!:-S

So I am asking all of you who are starting this downward path,how did or how are you coping,with the mental part of accepting,that all hope is going and the feeling of going through the motions,it does not mean a little bit of us,giving up,it's just realising its a bit futile ,and the quality of life is wearing thin.
I suppose I have lifted my head out of the sand,and by saying it,making it real.

I am posting this in this section,because,it's not end of life grief,and as I am not the patient,but the person who looks after my husband,I hope to see what other people who do the same job,think,,???

Would be pleased to hear how other people feel,as I think it is sadly lacking on this forum.Love Eve

[susannahParticipant]

Hi Eve I think with myself and Michael. we both knew things were getting worse, but as there was always another trial or some form of treatment for him we just carried on,im not saying we buried our heads in the sand but we didn't face up to the fact Michael was getting worse. But looking back now im pleased we didn't. Once we new he only had 3 months left it destroyed us both, so given the choice again I would go on believing there is always hope.

Big Hugs to you both
Suex

[eveParticipant]

Hi. Sue

Thank you for your reply.
I know you both had a very hard time towards the end,specially you coping with the isolation this brings,friends and neighbours not acknowledging your position,because they did not know what to say???

Well I am trying to learn from all this as David said he got the elephant out of the room,and talks about his future death,well I thought I had too!!!! Until this weekend, and a small incident made me realise,that I am slowly watching Slim decline,
He was on the phone to Sky,I have been trying to cancel to no avail,they rang and threatened him with Debt Collects,his reply was : it does not matter as I am dying anyway. It just opened a flood gate within me.

I can laugh now as Andy put it into perspective for me,he uses that one on cold callers.and BT.

It has made me realise I am not handling this very well,and you only have on shot at this,on the practical side,I have a working knowledge,of people dying,plus as you know lost my grandson,but it does not equate.

Being a practical person,I found some small thing like that comment could effect me hard.Love Eve

[strictlymyelomaParticipant]

Hello Eve,
I don't write on here very often but can really relate to your position.
Like Susannah, I lost my husband, Norman, in February.
He would not accept that he was dying, well not to me anyway, and so I continued to fight his battles for him. In fact 8 days before he passed away he told the staff at Royal Marsden "holiday" – he couldn't speak well at that point but wanted to book another holiday. That had always helped him.
Looking back I think the top of my head knew he was going to go soon, but the rest of my head and heart couldn't truly accept it. In fact, I didn't know what I was supposed to accept – I didnt know what death was. I had lost grandparents but no-one closer and had no experience of losing a loved one.
All I can suggest is that even if you do not say anything to eachother you have plenty of hugs. The physical contact will mean a thousand words anyway. It is this I miss the most after the finality and reality of death.
Just make the most of every minute.
Jackie x

[andygParticipant]

Hi Eve
You know why I don't post so often any more because we've talked recently about it.
As you know it's because my journey so far hasn't been a successful one. I've got a bl***y stubborn form of MM the the drugs won't shift and I'll never get to SCT. Slim similarly has not had a good journey.
I feel at the moment there maybe too many people joining the MM journey and only seeing the upside of treatment and not being realistic about it. Thats my personal opinion.
MM at the moment is an incurable disease that hopefully will soon become a chronic disease but unfortunately that will still mean a lot of people will still die because of MM.
I don't want to post and spoil the optimism people have about the treatment because I do believe attitude is a big help. They need support, help and encouragement. So death is rarely talked about even though it is a reality of MM. It's as you say generally only rarely talked about and usually by the ones who have been on treatment longer.
Look at Tom sailed through treatment still in remission and long may it continue. What an inspiration to all about to embark on the MM journey but he's not afraid to talk about death he knows or he thinks he knows MM will get him in the end – I'd like to think he could be cured! The first of many and why not.
Hmmm I think I'm on a Dex ramble again.
I've been on this forum less than 2 years and sadly seen many good people go before their time so I know what's in store for me. How long do I have? I don't know and I don't think the medics know but my options are running low as are sadly others on this forum.
I'm not afraid to talk about death and I think the more I talk about it the easier that it becomes to accept. That is from a patients perspective. I do think its very different for carers I can't imagine the pain and anguish that carers go through. Worrying at every mood swing, temp rise, infection, hospital visit, blood test results etc etc that their loved one goes through. The thought of losing their loved must be devastating. Putting on a brave face whilst been eaten with worry inside.
Carers get the s****y end of the stick and I have nothing but admiration and love for them all because they are the true heroes of any MM journey.
Sorry Eve I'm on my steroid fuelled hobbyhorse.
I'll sign off now Eve you know where to find me if you need a chat or a rant.

Every day is a gift
Use it the best you can

Lots of love Andy xx

[eveParticipant]

Hi Jackie and Andy

Jackie thank you for replying,it's a sad ending,but if you had no regrets,about your build up to that time,surely you must feel no regrets,this is what I want,no regrets,and Slim and I have the time left to work on that, I need advice on how to make this time important.We are not giving up,just trying to except that time is not on our side any more.Love Eve

Hi Andy
You can make me laugh and cry at the same time,it's a gift use it more often:-) ,
I am with you all the way,attitude will help people through this,Slim has always been a fighter,this is what makes him such a bad patient,stubborn as hell,he has had a bad journey with lots of high,s and lows,when he was in Intensive care,we got married,I have never looked at the pictures,and Slim only looked at them awhile ago,he has no memory at all ,and was amazed,for some reason he thought he was standing up,when we married,he tells me I took advantage of the situation,lol.

I think only a very few people in our position post ,yet this is one of the times you need support,they must look!!! As the figures show.Thank you for being honest and a cyber friend.Love Eve

[DaiCroParticipant]

Hi Eve & Andy too.

Eve,

Thank you for posting this thread is is as important as passing on informations about treatments, processes and procedure and SCT Prep, SCT experiences and Post SCT care.8-)

[quote]it's a sad ending, but if you had no regrets about your build up to that time, surely you must feel no regrets, this is what I want, no regrets, and Slim and I have the time left to work on that, I need advice on how to make this time important.[/quote]

[quote]I think only a very few people in our position post, yet this is one of the times you need support, they must look!!! As the figures show. [/quote]

I imagine that quite a few people will look in at this thread… but like 'End of Life & Grief' they will take note while be a tad frightened of the situations as well as being not ready to face the realities quite yet. Which is why I will jump on my bandwagon and call once again for a 'Section' which stores such posts, that describes certain stages, processes and procedures for use in and as an on forum archive.8-) 🙂 😎

Thanks again.

Andy,

[quote]I do think its very different for carers I can't imagine the pain and anguish that carers go through. Worrying at every mood swing, temp rise, infection, hospital visit, blood test results etc etc that their loved one goes through. The thought of losing their loved must be devastating. Putting on a brave face whilst been eaten with worry inside.

Carers get the s****y end of the stick and I have nothing but admiration and love for them all because they are the true heroes and heroines of any MM journey.[/quote]

Perfect… simply perfect.8-) 😀 😀

Much love to you all.

Dai.

[eveParticipant]

Hi Dai

Thank you very much understanding without the commiserations .

I would like to think over the last two years I have helped and been helped on this roller coaster,as you said not long ago it's time for other people to step up and help the new people coming in this site,and I agree,but the temptation,to impart Slims experience and my little medical knowledge gets the better of me!!:-P and I would like to think over time I have made some people laugh,I do have a black humour.

I would like to say to any one reading this when I said I do not want people's. commiserations,it's because I am unable to cope with them at this time,there tears are like a tap at the moment,and if I am crying I cannot read the comments.

My daughter who lost her child is in a very private invited group with people in the same situation,she has suggested I start one on face book,so that's a thought for the future!! Like the under 50 on here.
I am speaking to Sara for the survey tomorrow,after that I do not know we're my future belongs on Myeloma uk.

I will let you know when I make a decision,my love to you and Janet. Eve

[bandityogaParticipant]

Hi Eve

Sorry you are going through a tough time at the moment. Ian is getting stronger and hopefully will be out of hospital soon. I tend to forget about the myeloma and focus on Ian getting better and walking again. I am an optomist and hope we have many more years together.

I find the site very helpfull as I knew nothing about myeloma and now have a little medical knowledge of what to ask consultants etc.

You will both be in my prayers.

Love Maureen x

[eveParticipant]

Hi Maureen

I do not think I would have survived with out this site,so I do understand ,I know some times I come across as someone who is blunt,but anyone and everyone has to soak up all this knowledge about Myeloma,it's a voice and it can alter the way NHS treat Myeloma patients,that is why we do have to support each other.

I do understand your position,as you had a raw deal,and I hope you are taking part in Sara,s questioner about being diagnosed,in the case of Ian it was deplorable and needs to be aired,but in your position you must have a lot on your plate at the moment.

I hold to no religion ,so it would be wasted on me,you make your own luck,and like in every day matters you should be practical and prepare for the future. Love to you both Eve

[628872Participant]

Hi Eve, first time i have been on here for a couple of weeks as Dave is having SCT at this time. Just been catching up with people on here and their stories and posts and just want to say that you are in my thoughts and i am sending you hugs, hope and energy Kim xxxxxxxxxx

[janwParticipant]

Hi Eve

For some unknown reason, I don't usually read the postings under the heading of carer. But I have just read through your comments and feel there are many of us on this forum who want to help and advice you, however finding the right words or tone is very difficult to achieve around the sensitive subject of preparing for the end of life.

In today's Mail, there is a young man who has recently lost his wife due to cancer and he is blogging his experiences and positive advice to others facing this situation – see clearlypositive.co.uk He does make some good comments about finding time for yourself as carer, doing activities together however little and openly discussing your past lives together including the good and bad times so that you have some of Slim's recent memories and views to help you through the process of recovery when you lose Slim.

Many years ago, I purchased special albums for all of our parents to complete with their memories about their families, school life, teenage life, their first job, when they met their partner, etc. Unfortunately none of them ever got around to filling in the information. With three of them dying over the last three years, I would have loved to have their personal written memoires, which could have been passed onto their grandchildren. I have photo albums, but I can't remember who is who and again wished the photos had some description against the pictures. I know some people find it helpful to write their children/grandchildren letters to open on their special days such as weddings, birth of children.

On a practical side, I wished I had been more prepared with helping my mom with her last few days. She was so hot in hospital even with their air extracting fans and they would not allow bedside fans, but patients could bring in little hand held fans. She had a viral/fungal infection so she could not breath very well and her temperature was very high. Her nightwear was too warm and she needed thin cotton tops/cropped cotton trousers (very difficult to quickly find when shops only had winter clothes in stock). A baby feeding beaker was required because she couldn't drink through a straw and her hands were shaking so much when using a glass. The hospital had run out of crushed ice to sooth her dry mouth and we also needed a few ice packs for around her body because of her ever increasing temperature as well as some ice pops to suck. Ear plugs were required so she could get some rest during the night.

On an emotional level, I certainly miss the hugs and kisses from my mom and her ability to talk and help me through my bad myeloma days. I tend to put on a brave face in front of my husband and family because I have seen their stress and concern when I went through my initial treatment following diagnosis. With both sons their exam results have suffered and my hubby had to take time off with the stress of having to care for me, the kids, look after the house and do his job. It is so difficult to openly and calmly discuss death and dying with a loved one. As the patient, I do not welcome the thought of how I am going to die, but it's our loved ones have to pick up the pieces afterwards.

I hope you continue to stay on this forum and give your wealth of experience and advice to others needing support.

Love Jan W x

[eveParticipant]

Hi Jan

Thank you for replying,I did read the story in the Daily Mail,but not his blog,so it's on my list,thank you.

I must admit it never crossed my mind in terms of photo,s specially my parents and family photo,s,and yes you are right,we have no children together although we have been together for 33 years,my own children 3 girls look on Slim as there Dad,but unfortunately his own daughter,although in sparing contact,has no interest in the whole thing,although Slim is her last living blood relative,and has no family of her own.it,s something I cannot put right,and I have tried,and seem to make things worse,so have stepped back,and hope they can solve the differences before its to late.

On the practical side a lot of that is for the future,and I do have a working knowledge ,but thank you for your thoughts,even though Slim was in hospital for 22 days at one stage,I nursed him from 8 to 8 ,the standered in ITU was excellent one to one,but I still did his personal care,but when he moved to a ward it was horrendous .
I have stocked up on pillows as his bones are painful and rub without being cushioned,he gets out in a wheelchair,but he is reluctant to have a buggy,I do understand,but I am no spring chicken with my own health problems,for pushing wheelchairs.

Jan I think you have hit the jackpot in your last paragraph!!:-)
Slims memory is in pieces,so all this time I am thinking,he does not realise how ill he is,and he does,we have been so busy trying to protect each other from acknowledgement pain and stress,and both of us realising time is no longer on are side,he now reads what I write on this forum,first he did not want to know,but now although he has lost the skill to use a I pad mainly because of his memory,he reads the posting,but alas he cannot concentrate for any length of time.

I will say one thing Jan,because of all the distress at the beginning ,,it's hard to talk about it for fear of upset,any good nurse will tell you,it's the patient who has to ask the question,or open the conversation,although I am upset,it's been bottled up inside me for so long,it's a relieve to have it out,my children know how we feel,so they are on board to help with are situation.
So to me that is all good.

As for the forum,my post does not fit into any of the titles ,and if I am honest I do not think my future post will,the consultant is all hunky dory,but common sense tells me 6 months remission chemo s not working,Slim is going through the motions,but like anyone he wants to live,and he is a fighter ,and stubborn as old boots,he is a terrible patient,they throw him out of hospital as quickly as they can,also I do not want to come across as someone who is always moaning and complaining,and this is what I feel recently ,I also think there are a lot of people who feel exactly the same as me,who give up posting on here,for the same reason,Andy explains it far nicer than I can,I am far to blunt,or as Dai says I do not suffer fools gladly .i need things to be more factual,but do not have the grammar to flower power the writing.

Jan you should write more on this forum,you have lots of common sense,and have the experience of dealing with a young families needs..I wish you well. Love Eve

[eveParticipant]

Hi Kim

Thank you,I hope you do not mind me keeping it short,I wish you well to.Eve

[bandityogaParticipant]

Hi Eve

I have just emailed Sara and said I would take part in the myeloma diagnosis programme.

In reply to my complaint, the gp's wrote that after Ian saw the specialist, Dr Watson should have put a care plan in action and not waited on specialists results. He deeply regrets this and it has been a learning curb for all gp's.

The reply from specialist was that as blood tests were normal, there was nothing to suggest it was anything other than mechanic as Ian had a desk juob. I sent out a leaflet to all of them on how to diagnose myeloma. Hope she can sleep at night.

Love Maureen x

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