[keznmelParticipant]

Today I'm feeling suffocated! I'm frustrated and just feel like going upstairs packing a huge bag and running away so I can 'breathe'! My head is full off so much…'Has Melvin had his meds? How is his pain? What shall I cook for tea? Did I make the dentist appointment for Atlanta (our daughter)? How about the optitions for Dior (our son)? Has the dog been fed? What time shall I walk him? What is this new pain Melvin is explaining? Do I need to call the nurse? Are the boys clothes all washed for there few days holiday with Nan? Did I send that email for Atlanta's college? What day do we have to go to view? Have the bills been paid? Did I send all the relevant documents for the DLA claim?…………………………' I'm sick of it all and I don't have five minutes!

Life has changed so so much and it angers me! Why??? Why do I have to watch our 15 year old daughter Atlanta seem so sad at the moment? Isn't life hard enough at this age without having Cancer taking permanent residence in her life?? I feel guilty for not being able to protect our beautiful children from all of this! Life should be happy – having just the normal childhood worries – not thinking about Cancer and death! I know that it's an unjust guilt that I feel but I can't seem to stop feeling this way. I also feel guilty that I can't spend the time with them that they need and deserve as I'm consumed with running up and down the hospital, doing things for Melvin, having different people come in and out of our house, equipment being delivered all the time! How selfish do I sound?? I feel guilty for that too!

My Melvin is so strong (for those of you don't know Melvin is the one with MM) – I feel like a crumbling wreck! I am trying so very hard to keep our family strong – meeting all of their needs but who is looking after me??

Sorry – I just needed to let that out. xxx

[tomParticipant]

Hey Kerry That my Girl Is Normal, I am the one with MM so am being looked after by my lovely wife Elaine (the young bride) I was told in Jan 2009 that I had Myeloma, done the CTD then the SCT (all good now) BUT Prior to my MM Elaine (the young bride) was told in Jan 2008 (yep one year prior to mine to the day near as) that she had breast cancer 🙁 , Now that I have to tell you was and is worst than me having MM being the Carer is harder than being tha patiant is what am trying to say.

How do we cope??? well we do we have to, yes Elaine is now four years clear of Cancer and that makes me three 😎 its not a good road to go down but we had to and we are doing it as best we can, so I feel for you with what you are having to go through BUT Kerry look at it this way we Have Myeloma and yes its Terminal but our Dr's are treating us to help us live longer lifes I know people that have passed away before me and they didn't know they were Ill, we do so we are getting looked after yes its MM but its treatable, you say Melvin is strong and yes I beleive that as I am but when I was in your position (the carer) I was the same as you I worried about this and that till I decided I must work harder looking after Elaine, you have Melvin and the Kids make them and you the priority and the other bits and bobs will fall into place.

Honest a Rant is Good for you 😀 and no need for sorry's we are all here for you and your Family. Be Strong and keep on ranting and venting it is good for you.

Love and Hugs to you all in this hard road to remission.

Tom "Onwards and Upwards" xxxx

[VickiParticipant]

Hey Kerry,

You are just being honest, no worries with that. Colin Has mm and I have felt so helpless and frustrated, are the doctors doing all they can, this question, that question, food what sort, drink fluids, enough, not enough?, why us, why him, life's unfair etc…..and there is only the two of us at home. You have all the rest to worry about too! It can seem really overwhelming.

I hated hospitals before all this, medical stuff was not me, I had a job to even visit someone in hospital. Now I have no problem because I've had to and found something within myself because I wanted to be there for colin. Even to the point of considering changing career to something a bit more 'medical'. Who knows. What I a trying to say badly, is that all the feelings you are having are natural and you will find something strong in yourself, when you won't want to run, you will find a new routine and learning to get help from others to help you…..and getting some me time. That said all this takes time because your lives, you, Melvin, kids and even the dog, have all been turned upside down. It will get better.

Hope this makes sense and please rant as much as you want, this forum is a godsend 🙂

Vicki and Colin x

[eveParticipant]

Hi Kerry

I think Tom has summed it up,you are just feeling what we have all felt at one time or another,you will work your way through this,but find some space just for yourself,instead of being a task to walk the dog,make it a pleasure,your own space.
The only time you have to worry is when you are bawling at strangers,or crying in front of strangers,then you know you have hit the buffers,a little white pill helps to keep your emotions under control.works wonders.

If you look at your feelings logically you are mourning,and it is understandable,this illness has taken so much from you and your family,so you have to work you way through it,it will pass,you will find out who your friends are,you will survive this,and believe it or not come out of it a more understanding person and a stronger one.Love Eve

[keznmelParticipant]

Hiya Tom – thank you for your message. We have something else in common..In May 2007 I was diagnosed with Fibrosarcoma, cancer of the soft tissue and I finally went into remission in June 2010 ..as Melvin was diagnosed with MM in the December. I have to agree with you regarding the comparison of feelings – I felt more in control when I was the 'patient'. Now I feel totally out of control and It almost feels that someone has put a bomb in the middle of my future.

I am positive most of the time and will always remain positive – just sometimes it gets to me and I feel so sad and angry. Normal for us all I'm sure.

You take care Tom – keep smiling and thank you again x x x

[keznmelParticipant]

Hi Vicky – thank you so much for your message. reading what you wrote was like I was telling the story…just how I feel. I have also thought about using all of this in a positive way, maybe volunteering somewhere or studying maybe?! Who knows.

I hope that Colin is OK at the moment – how are you doing?

Take care xxx

[keznmelParticipant]

Hi Eve – thank you for your message. I agree with you – I am grieving and I think going through each stage slowly. Today and right now I feel angry…the denial has been with me since 2010 when Melvin was diagnosed.

I hope you are well – take care and thank you again. xxx

[andygParticipant]

Hi Kerry
I think everyone has those feelings as a carer. I'm the one with MM but in a way my wife is suffering more. She has to worry about me, about her job which includes a hours drive either way, cooking, walking the dog etc etc and most of all what the future holds. I have damage to my back so I hardly ever drive now so I require lifts to the hospital which fortunately I have a good friend who ferries me about but it seems well it actually happens every time my wife books a days holiday I suddenly need to go to hospital – sods law – she never gets a break! Now I've been referred on to a professor at another hospital which requires my wife to work from home so she can take me in – its nearly a hour a way but it's also right near where she work! More sods law. There just doesn't seem any relief for the carers and if you add children into the mix well I don't know how you cope. All carers have my utmost admiration. Please come on here and rant and rave, shout, scream if you want let it all out. You will find support and advice on here – WE UNDERSTAND – and we would like to help. I would also recommend you speak to the specialist nurse about seeing a counsellor – talking things through with a sympathetic stranger will help greatly.

Take care
All the best
Andy xx

[BADGERParticipant]

Kerry just let it out ot must be so hard for you to see Melvin suffer so much and the children must be suffering to not knowing what will happen to their belooved dad you sound a strong person so i am sure you will get through this
Love AND A (((HUG))
jO

[keznmelParticipant]

Thank you for your message Andy. It's very tough for all isn't it? Life completely changes when something like this sets up residence in your life and future. We have been referred to a Counselor individually and as a family, so our three children and myself and Melv can go. However..we haven't been yet as the Counselor cancelled the past two appointments and we are now booked in for the beginning of November. Fingers crossed that this doesn't end up the same way.

I hope that things are as good as they can be for you at the moment. Take care and hope to hear from you again.

Best wishes Kerry x

[keznmelParticipant]

Thank you for your message Jo. People always say that I am coping really well and sometimes I agree. It may be the false smiles and 'I'm fine thanks' that I often reply when asked how I am. The way I see it – I have to cope, I have no choice. Who else is going to look after everything..Melvin and the children? Just sometimes, like now – I just want to scream 'I don't want to!'. I have to say that talking to all you lovely people who don't judge me and who understands makes me feel better. Thank you.

I hope this finds you well Jo..take care.

Love Kerry x

[Anonymous]

Hello Kerry

My name is Sarah and my husband Henry was diagnosed in August 2011 with Myeloma. He had 6 cycles of CDT and a stem cell transplant in March this year. He was told last month that he is in remission.

I can 100% empathise with how you feel. From August to now I ran round like a headless chicken looking after henry, worrying, cooking, ironing, cleaning, sorting all his meds, paying all the bills, going to hospital with him for all his appointments and doing an hours driving everyday when he was in hospital for a month having his sct. Dealing with a few stays in hospital oh and yes he collapsed once and I thought he was dead. On top of all of that I still went to work, getting up at 5am!! I basically buried myself in looking after Henry and showing a brave front for our 4 children.I didnt want to see any of my friends and stopped going swimming which i always did. Only I could look after Henry and to a certain extent Henry now says that he couldnt of got through it without me. Even now he is well he is still on antibiotics as he seems to constantly have a chest infection but hopefuly that will get better. I did eventually have a meltdown (at the doctors) and I went for some counselling which really really helped, talking to someone who didnt know me and I could say anything. It was so good. Dont get me wrong I do still feel angry and have bad days when i just sit on the train to work and cry but I am now able to talk to people about Henry's illness without crying and getting upset. but I do still worry and the kids say I fuss too much but that is how it is. One thing i started doing when i got home from work was going out for walks/running – I put my ipod on and listen to music and walk/run and do that for about 40mins and feel so much better afterwards. So try and keep some time even just a little bit to yourself just to recharge your batteries. Try and give some of the chores to the kids – mine came round and helped and I got the food shopping delivered. So rant if you want to on here, we all understand. It is hard being a carer watching the love of your life become ill but stay strong, keep smiling and keep talking.
take care
love sarahx

[Author]

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