[RobertaParticipant]

Dear All

I am going mad in my mind. I'm in remission at the moment and everything is looking good. I am back at work, next month I will be back to my normal hours. I am so glad to have my life back, I don't care how long that lasts, I am just savouring it for now.

I have posted before about people in my family, on my husband's side who have not really acknowledged that they are sorry I have multiple myeloma and during the chemo and stem cell transplant they never really expressed to me or my husband how really sorry they were.

I feel so let down and really angry at the same time. My husband is ill at the moment and I can't really mention it to him as he can't take it, before when I have mentioned it, it has started an argument. I know deep down he is disappointed.

It all feels like such a drag now with me having to pretend and sign birthday greetings cards to people I know who don't really care. I just feel how bad could it have got, multiple myeloma, what is worse.

I need to let off to people, perhaps I should write to my husband telling him how I feel, where do I go from now? Sorry this is too sad and such a rambling post.

lots of love

Roberta XX

[AMcGuireParticipant]

Hi Roberta

Awe bless you, I'm so sorry you are having such a rubbish time with your "outlaws". Please, please don't apologise for rambling .. good heavens thats what this site is all about, we support each other in whatever way we can … we don't always have the answers but a good set of eyes and ears and a bit of understanding too.

I can tell you that we are also experiencing similar with ours too. My John doesn't keep very well with his MM, infact I've just got him home after a few weeks in hospital during which time his brothers and sisters were literally popping in to see him for 2 or 3 minutes whilst on their way to visit their mum who was also in hospital. One of his brothers has never been in our house, the rest of his family have although its been a few years. I guess they are all caught up in their own little bubbles and time rumbles away.

Like you, it used to cut me in two that they showed no support or real caring. Now I find its better as I don't have to "answer" to them in a way. I send them all a global text message to let them know whats happening with John, they sometimes text back in acknowledgement, but they never instigate a text or come on the phone to ask how he is day to day.

John doesn't like to talk about it, when I do he gets angry and ofcourse a little argument begins – just like your situation. I know that John feels very let down by his family and embarassed about it too. My family are completely different – always there for us supporting physically, mentally and financially too. John is currently changing hospitals so he can be nearer our home rather than the homes of his family (they live next to his old hospital which has been a 40 minute drive for us to get to whereas the new hospital is just 10 minutes from our house)so now IF his family choose to visit they'll have to do the drive – his sister said "well don't expect us to come visit you", which ofcourse hurt John terribly.

I don't have the right answer for you, but I do share your frustrations. It used to eat me up, but now I let it wash over me. All that matters to me is looking after John and my 2 girls, my family help out in whatever way they can and I keep Johns family updated …. more for my peace of mind than theirs.

I'm sorry I can't help you Roberta, however I am thinking of you and wishing things would improve for everyones sakes.

Sent with healing thoughts and love
Angelina xx

[JetParticipant]

Hi Roberta

It's absolutely fine with me that you use this forum to rant about whatever's going on for you. I'm facing SCT imminently, so I'm pleased to hear your remission is giving you back your old life. I'm not sure I want my OLD life back, but feeling well and having choices again must be great after the initial diagnosis and treatment. I'm sure you celebrate that gift on a daily basis.

As for your family, I am so sorry. But my reaction was why on earth do you have to send them birthday cards????? Sorry if that sounds harsh, but they aren't there for you, so why would you continue to give them any energy? Save it for yourself and those around you who love and care for you and were there when you needed that support.

One of the things I have been through on this weird and (not always) wonderful journey has been a kind of spiritual/emotional/life spring clean… and one of the aspects of that was to dump anyone in my life who wasn't a positive influence, didn't give me energy or actually drained me. I didn't see it as a nasty thing, but part of my health regime in a way. I think this was one of the most important and beneficial 'healing' things I did – who needs any additional stress, eh? So I would encourage you to consider it… as a way to further take control back in your life, given how much control we give up to the cancer and its treatment. Anyway, I'll leave you with that suggestion. It's maybe not for everyone…

I am very lucky with my family, as we are quite tight – my mum, brother and his wife, aunt and uncle/aunt and the subsequent cousins and their spouses/children. They are all in regular contact, read my blog, email, skype, text and call me. They don't all visit as they are quite far flung around the world, but we are planning a big family gathering prior to my SCT, to celebrate my cousin's and my 50th birthdays in July. I think the worst thing I experienced, which wasn't so bad, just awkward, was my cousin's wife on the phone telling me how "terrible, terrible" it is… I know she means well.

My friends circle has shrunk since my spring clean, but while smaller, it's much more 'real' and supportive and now includes some surprising additions of people who somehow appeared out of nowhere to show themselves as good friends. For example, when I was really ill in January, prior to diagnosis, Helen came round, cleaned my house and did some ironing as I was too weak and the house was a tip. She did it in such a way that it was fun for both of us and I didn't even feel embarrassed. Before this, we were something like friendly acquaintances… Now I consider her a true friend – and she makes me laugh, which is definitely healing.

I am not a particularly mainstream person, so I approach myeloma like most other things in my life, in a less than conventional manner. If it's helpful to you, please use it. If not, I hope you find another way to manage your feelings, like go with Angelina's method of simply letting them go mentally and focus on the good things. Or you could just 'forget' to put a stamp on the envelope of the greetings card, so they have to go to the post office to collect it. 😛
But really… why on earth are you bothering with these people?

Hoping you find a way through and get to concentrate on more enjoyable stuff.

Jet

[AMcGuireParticipant]

Well said Jet!! I couldn't agree more.

I love your "spring clean" of friends. Its very true indeed that you find out who your "real" friends are when something bad happens in life. John lost many so-called friends along the way … but its no loss really, they were just "hangers-on" as my mum would say. The friends that have remained faithful have been very supportive.

Definitely not worth wasting time and energy over thoughtless family or friends. Get rid of anything or anyone negative, thats the spirit! Positivity all the way! It really does make you feel so much lighter and brighter afterwards. As for friends, well they make themselves known in many guises – how wonderful of your friend to come clean your house Jet, now that is a true friend indeed.

Laughter is definitely the right medicine, anyone casting a dark cloud over you should be cast aside.

Sending healing thoughts and love
Angelina xx

[eveParticipant]

Hi Roberta

I could echo all the things said here,But I think it all depends on the type of person you are.I feel the need to put everything right,it is sometimes impossible.

When there is a tragedy in your life,this is when you find who your friends are,and who needs fair weather friends. As to relatives its a different game,may be they do not realise how unsupportive they are,do you tell them how you are or do you leave your husband to pass the news on,they might think it to upsetting for you? and not know how to approach the subject.I have been on both sides of this loosing a much loved sister in law,and now my husband ill with mm.my family talk to me about it but do not mention the illness to Slim.Its not that they do not care,it is about not knowing what to say to him.

My husbands daughter has not been in touch with us,since January,and we rang her,She does not know here father is so ill,He will not allow me to tell her,he says she is not interested,so he has put down the shutters,I have tried to talk to him,and an argument results,he was taken into itu with septic pneumonia again I asked to let her know, his answer was no nurses said I have to respect his wish!!!!!.The only time we hear from her is when money is involved,and she thinks she is a good christen woman,and because I have no believe I am not!!!

I am angry just like you but it is something you have no control over just accept it for what it is.My husbands says if you cannot change it what is the point of worrying about it,

I hope this might be of some help to you.

My friend Ann took my dog home for 22 days when Slim was in hospital and another friend Jan,came and cleaned all my house up,and has offered to come in every week,so I do not have so much to do.This is friendship at its best,this is were the good things come out of bad things.

my best wishes to you eve

[MinParticipant]

Hi Roberta,
I fully agree with Jet, let them go and get on with your life.. If your husband questions it, tell him that this is the new you, having beaten the odds with your MM your not going to attempt to beat the odds with his family….
We did this about thirty years ago when my husbands parents neverreally acknowledged my children as there grandchildren, no birthday cards presents or otherwise. We simply learned to ignore there existence too after a while. Its hard but its easier than beating yourself up. If his family were friends that had behaved in this way, you would have not thought twice about dropping them.
You and your husband are what is important not them. Don't waste energy or even a thought on them. Its too negative for your future health.
Min

[BADGERParticipant]

Hello Roberta Eve and Angelina and Min
A good friend of mine once said to me change your KARMA let go of what you cannot contol and you will get back what is right in your life, in times of crisis true friends and family will be there for you and thats all that is important:-)
Love to you all Jo big ((((hugs))))

[RobertaParticipant]

Thanks to each and everyone of you. I've got to get this stuff out of my mind – quick. I will, I will work on all of the suggestions. I know deep down that it is useless to be and think the way I feel. I have a huge battle to fight and I'm doing quite well now so that I must concentrate on. Thanks once again. love roberta XXX

[brochoParticipant]

Hi Roberta lovely to hear you are feeling well and back at work. I can understand how those selfish family members have made you feel but I agree with the others let them go !You and your husband have earned the right to enjoy life now after having been through so much recently Put your energy into what you want to do not what you feel obliged to !! Never apologise for letting off steam on here we all do from time to time and we are all only to glad to be here for you love Bridget x

[tomParticipant]

Hey Roberta

Trust me girl you dont sound Crazy (well not as crazy as I) and if you need to vent what better place than here amongst friends and nearly Family 😎

Its a great thought if we all moved into an Estate (near a hospital ha ha) and then we would have neighbors that knew we get grouchy and tired after a hard days work. it could be the "MM Commune" ha h

Good Luck in throwing or showing them you can do it with those that can be arsed about it all.

Love and Hugs

Tom "Onwards and Upwards" xxxxxxxxx

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