Hi fellow supporters, carers seems not quite the correct term.
A few days before our awful day on Tuesday, Peter and I had some words or lack of them bringing about an 'atmosphere' It all came about because I could not find some pyjamas I wanted to wrap up for my grandchildrens xmas.
Because I could not find them due to shear frustration, and anger I was shouting at Peter believing he had tidied them away. ( He is the proverbial tidy man)
It was one of those moments when I forgot he has myeloma;(as well as forgetting that I had not yet bought thedamn pyjamas!)
Later while talking he said, you know Min you forget I am not well.
I have since thought a lot about this and wondered…..
As the person without the symptoms, the medication, the debilitating back ache, the breathlessnes the Dr,s appointments etc etc. I [b]can[/b] forget. Occasionaly. Whilst the patient, whoever they are in your life, sibling, partner, parent grandparent wife, husband. rarely gets the opportunity to forget.
Does that mean I am not allowed to get angry. I would welcome the views and reactions of others in my position. I am not at this moment in time his 'carer' as he is mobile and alert and very mch in control. I am his long suffering and caring wife. The dragon who tells him off for forgetting to tell me to give him an injection. Rant rant rant.
My dear Min,
Of course you are allowed to get angry. Its an emotion, just like fear,sadness, laughter and love. It means you are human. I have got angry too and have regretted each time that I did, so much. I have been caring (as best as I can) for the past four and a half years and, just like my long suffering but beautiful wife, I get my good and bad days. Dont feel too upset with yourself after throwing a tantrum, just have a short break, or go to the shops, then when you return you will feel a little better. The anger will pass and the situation will slowly return to normal. "Be cheerful. Strive to be happy".
Dear Min of course you should get angry when you need to thats normal life AS athe one with mm I can honestly say I like it when my partner forgets about mm and treats me as normal .I would go so far as to say it can really irritate me when I feel smothered by well meaning relations who see everything mm related as a big drama , then I feel guilty !! But most of life is ordinary , even hospital visits become normal along with pain and medication Perhaps ;iving with a daughter with a serious life -threatening illness all her life has prepared me for living with mm , as it has my husband Please dont feel guilty I am sure Peter is regretting saying what he did too Heres to normality whatever that may be love Bridget x
I too get angry with my mm husband. We fall out like any "normal" couple. Bridget's words are so telling mm patients either treat medication, hospital visits and all the c**p that goes with this illness as "normal" or roll over.
If Peter reminds you again that he is not well tell him off good and proper and make him sit on the naughty step. Anyone else got one of those?
Love from Gill xx
Everything you wrote is so true, i too loose my temper get frustrated, the worse thing at the moment is gordon will not take his calcium tablet!! hates it when i jabb him take his blood every other day i don,t blame him i would hate it but at least he is slowly responding to hus 2nd sct.
We have been living with this for nearly 9 years it does not get easier and i cannot get use to it or accept it!! but gordon is still alive and still runs the farm with our son. positive thoughts.
Never thought of a naughty step but know of a lovley cold icy one which would do the job beatifully!!
chin up all careres onwards and upwards as seems to be the lovley motto of this group.
Cold icy step sounds much more like cruel fun than our bottom step on the landing which is warm and cosy. It is where we used to make the kids sit if and when they were very, very naughty. 1 minute per age eg. 3 years old = 3 mins 4 = 4 mins. Obviously by 5 we were beating them sensless:-).
Cannot understand how they became such great adults now in their 30s and 40s
Yes we do carry on no matter what this rotten illness slings us. Good job being doen done by all of us xxxx Gill
It has all been said. Of course (we carers – hate that bl***y word) get angry. Frank and I have been living with this disease for over 4 years. We all handle it differently. I know you have been living with this longer than me. The Myeloma word is not mentioned in our house (unless Frank is feeling unwell) He lives from one appointment to another. Me – It is the first thing on my mind when I wake up and the last when I go to sleep. At the start I got so angry and I can admit it now I got angry with Frank for getting this awful disease. (does tha sound selfish?) We had real hum dinger rows and he would not speak to me for days. My help with this came from 2 under 50's patients on the forum. They savd my sanity and listened to my ranting. I can't say all is rosey in the garden as we still have rows but they are forgotten immediately. My release is I have a big board in the garage hat has been painted and when I get mad I go out a scrape the paint off like a mad women possessed.
Sorry for ranting bu I have just re-read this post and it is the first time that I have admitted that I was angry with Frank for getting this illness.
Go easy on yourself and the naughty step sounds a good idea – I have no chance of getting Frank on it.
Love Jean xx
Of course you get angry. We all get angry with our partners. When Michael was at home we still got angry with each other, one of my carers said stop shouting at him do you not realise he is ill with cancer. Yes was my answer but all through our marrage we have done this so why should this stop now??
I've been told now he manipulates me because he knows where it hurts, So I say to live normal we act normal we should not have to walk on egg shells
Wanted to reply to this post as saw as I read it as it struck a chord with me but have only just gotten round to it!
When Sam was first diagnosed we were treading on eggshells and it just wasn't normal for us and it really didn't feel right, in fact I think it made things worse. Until his mum, who nursed her husband through Myeloma said to me "treat him the same, be as normal as possible" so I did and things were much better.
I think secretly he likes being nagged! Ha ha!
You are so right. It is difficult at the beginning but life has to go on as normal (as much as possible) I have to say that before this horrible disease we would both huff but not now. (Boy were we huffers) We are enjoying evrythng as much as we can. I follow Franks lead, as he is going through this I just take my cues from him. ~When I feel like ranting and raveing – this is where I do it.
Hope the snow is not causing you too much trouble. Here in N Ireland it is wild. We have been house bound for 2 days but in a weird way we are enjoying it.
Lovet Jean xx
I am new to this site. My husband was diagnosed a year ago, we had thought for about seven months that he had MGUS, the MM was diagnosed finally in January this year. He has up until now had no symptoms and despite being referred to a haemo-oncologist who we see every six weeks, I think we are both in denial. However today he told me that he is incredibly tired all the time, he is a taxi driver and works very long hours. It is his first admission that something is wrong with him and quite frightening. So now I feel horrible that I am just the same nag i've always been, the dilemma of course is that if I stopped behaving like me, he'd cotton on immediately. After he was diagnosed I totally changed the way I treated him but after about a week he basically said he'd had enough of this c..p and could I go back to normal. Now I think I have to take my cue from how he feels, which may involve a lot of mind reading as he is very good at putting on a brave face. Most of the time I am able to be normal but sometimes I am terrified about what is to come which includes really really selfish things like money worries and me being able to nurse him and the absolute worse which I can hardly bear to think about. What a huge muddled rant, hope it is not too boring and thank you for the opportunity.
Dear Jayne – you are very welcome to this website and although I am a patient and not a carer, you will find invaluable advice from those who know all those feelings you described. I think one of the best things you can do initially is to contact Macmillan and find out about financial assistance (and other services they can offer) – it can be a real worry and there is help available.
How long are you from your next appointment? Can you ask to bring it forward due to the symptoms? I think we have all learnt on here to be as pro-active as possible rather than wait and see. Once you know what you are dealing with the better it is to cope. If you are both in denial you won't be the first or the last – we have probably all gone through that at some time or another.
I hope that other carers/family members on this site will be able to help you. We have a saying on here started by our Tom which says Onwards and Upwards. One that has always been helpful to me is One Step at a Time because that's how I can deal with living with myeloma.
Love Gaye x
Thank you so much for your speedy reply, I am at this moment hanging on the phone waiting for someone at Barts hospital to help as I do not want to wait until his next appointment which is not until the end of January. Hopefully someone will answer the phone before then!
I hope that by the time you read this you will have got through to the hospital and got an earlier appointment.
I know how you are feeling I went through all that you are going through (and I am sure that other carers did). At first I could not let Frank out of sight. For about 2 years I would not leave him to go out with friends (he still went out with his). I used to watch the soaps on TV in the other room but when he was diagnosed I lost interest in all of them and not watched one since. I even took up football (which I hated – now am avid Man U supporter). When I needed answers and needed to rant – I posted on the site and ALWAYS got help.
I agree that you have to take your cue from your hubby – I so wanted Frank to do what I thought was best for him – took me a long time to realise that this is his illness and he has to deal with it the way he needs to. Sometimes it is hard but I have to do what he wants.
Frank is not on treatment but he gets what he calls "Power failures" He would be talking to me – go quiet and when I look round he is sleeping!!
Sorry for going on but Jayne this is a brilliant site and there is always someone that can help. As I have said often this forum saved me from going loopy. I hope your get your earlier appointmen and it is ok to be scared but if you need to talk just post here.
My very best to you and your hubby.
Love Jean xx
Dear Jayne – I too am a patient at Barts and it's likely that we have been at the same clinics but not known it! They have a very good day unit which will certainly be open tomorrow morning as well as a myeloma nurse specialist who you can contact. Failing that go to your consultant's secretary and request an earlier appointment. I have had excellent treatment there and they are always very helpful. If you need any more info on Barts or just want to chat my address is firstname.lastname@example.org. Would be happy to help.
Love, Gaye x
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