[loislobbanParticipant]

Myeloma UK is writing a book on the hints and tips of living with myeloma for patients and carers, by patients and carers and we need your help.

Your feedback had told us that practical information, advice and experiences from others is very powerful but hard to come by.

The book aims to gather useful hints and practical tips from a group of patients and carers which will then be collated and published in a pocked-sized book.

We need your help

Myeloma UK is looking for patients and carers to contribute to the book. We want to hear your tips, quips and anecdotes on dealing with treatment, complications of myeloma, the emotional and physical impact as well as other practical tips about living well with myeloma as well as being a good patient or a good carer.

The book will be informal, accessible and fun and will include tips that you would not expect to get from your healthcare team.

You can send us a short paragraph (no more than 150 words), by replying to this thread, tweet us at @myelomauk #myelomatips or write on our Facebook page. If your quote is used, please let us know if you are happy to be named or if you would prefer to remain anonymous

If you have any questions or would like to find out more about this project, please email Lois.lobban@myeloma.org.uk

Thank you

[PhilipandfionaParticipant]

I’d love to have had a credit card sized information card to give to people who have asked about myeloma so I didn’t have to keep repeating myself.

[alpenatorParticipant]

Great idea; we do feel alone at times and people who do not use this forum must feel even worse.
Having completed (almost) the intial CTDa treatment I am in my 5th month of ‘remission.’
The worst thing for me is that I often feel very depressed that I have lost the ‘me’ that I knew and will never get him back.
I feel unwell for most of the time (and zonkd out on morphine) and to know that this is not going to go away is the worst part of MM at the moment.
I have always been a very positive person, but the MM has changed that part of me. I hate it for that.
I hate also how it has affected my wife who. like all our carers, suffers with me without having any symptoms. I can’t imagine how she feels and am so sad that I have inflicted this on her. She doesn’t deserve it.
If I can help with the booklet, let me know and you can certainly use my name.

[dickbParticipant]

Hints and tips. I think the following works for us.

Forget career and materialistic stuff, focus on the truly valuable, for me that’s family and friends.

Don’t let it rule your life, think of the dog wagging its tail, not tail wagging the dog.
Plan. What you want to do, what you need to do.

Accept you will need lots of rest, don’t fight it, as others say, listen to your body.

Don’t waste time and energy on things you can’t do anymore, concentrate on what you can do, there are still loads of things people can do.

Personally I don’t believe in Bucket lists – too negative, too time consuming,too selfish. spend the time being with people you want to be with and want to be with you.

Don’t waste time chasing people, let those who want to contact you, not the other way round. You will find out who your real friends are.

Hope that’s something to get on with.

By the way I prefer to remain anonymous because I wonder wether Insurance co’s trawel through sites like this looking for a way of not paying out.

[loislobbanParticipant]

Thank you all for your contributions they are very useful and just the type of thing we’re looking for.

If any one else would like to contribute to the book, please keep sending me your hints, tips and experiences. If you would prefer to email me directly please email me at lois.lobban@myeloma.org.uk

Many thanks

Lois

[Kazzam2Participant]

Hi LoisLobann and all. I have not been on for a while so I have only just noticed this. I totally identify with Alpenator’s words about realising this is it, never going to get the old me back. And of feeling guilty, I too feel very very guilty I have inflicted this on my husband, and daughters, they do not deserve it. I am also on a lot of morphine, but the pain has got bad in my back and ribs, and I have recently had yet another MRI (awaiting results). DickB I found your post very helpful, looking at this MM from another perspective. Thank you. These types of posts, this site in fact makes living with this dreadful, cruel illness a bit more bearable.

If I can be of any assistance to the book,please feel free to use my name.

Regards to all x Karen

[dickbParticipant]

Hi Karen,

Glad I could be of some help, even if it is in a small way. Like everything its about attitude I suppose. I also have a fantastic wife that helps me and like you I do feel guilty about things but I have learnt that doesn’t help.

Richard

[Kazzam2Participant]

Hi Richard, thanks for your reply. Another couple of tips in your reply about attitude and there being no point in feeling guilty. Your are right, but easier said than done sometimes eh?

Also rereading your earlier post, I must also make a point of remaining anonymous.

Regards
Karen

[Anonymous]

Allowing people to help you, and making the effort to help yourself, is critical when living with multiple myeloma. Telling your family and friends when you need them will bring you closer together.. Sometimes people try to protect each other by not saying how they really feel, but they’re missing an opportunity to build closeness, Just know that being real together will really help.

[tomParticipant]

Hi Lois

I have one or two

Hiccups My Cure when you get them ::: fill your mouth with water, place fingers in ears to block them, then swallow slowly till all water has gone, (works for me every time)

surround yourself with nice people.

be honest with Family and friends with how you feel, honest it helps you and them cope better

Listen to your body, if it tells you to rest,rest

do good things on good days.

Good Luck with the Book i think its a great Idea.

Tom Onwards and Upwards

[janwParticipant]

Hi Lois

I think it’s a great idea about providing a book with hints and tips on living with myeloma. I don’t know how you are going to organise so many different comments from all of us, but perhaps you might consider placing the suggestions under various headings such as coping with myeloma, first line treatment, stem cell transplants, remission, dealing with relapse, second and subsequent treatments and final stage.

My tips would be:
– Use a weekly pill box with sections for each day and times of the day. If you fill up the box each
week, you can then see at a glance whether you have forgotten to take any medication.
– You might change doctors or hospitals in the future, therefore it is worthwhile keeping a record of
any medication, side effects, infections, hospital admissions, etc which you experience throughout
your myeloma journey. You might need to refer to this information in the future.
– When you are starting treatment, you don’t know whether you will suffer from any side effects from
the drugs. But in case you start to feel unwell whilst on treatment, plan ahead and organise items
which you might need such as packing an overnight bag for hospital in case of emergency admission,
a fan for your bedroom if you suffer from hot flushes, getting your hair cut and/or organising a
wig via NHS if you are going to lose your hair with treatment, make sure you have sufficient night
wear if you are in bed for longer periods and pillows to prop yourself up with whilst sitting in
bed. If you start to suffer with nausea consider stocking up on some plain food in case of
nausea such as plain biscuits, soup, ice cream, custard and some ice lollies if you cannot keep
down liquids/water.
– If you lose your taste, try using chewing gum or mints to take away or mask the metallic or bitter
taste in your mouth.
– Stock up on some moisturiser/face cream for if your skin goes dry during chemotherapy.
– If you suffer with rib pain, then a bra can be very uncomfortable to wear. Try a non wired bra, or
built in support in T shirts. You might need to abandon wearing a bra until the bone pain
subsides.
– A plastic covered picnic jug for water is useful to have next to your bed to remind you to drink
water and saves you from going to the kitchen during the night if you need to take tablets or feel
thirsty.
– Consider purchasing a foldable walking stick, which you can use if you feel dizzy during the night
when going to the toilet or for use outside.
– If you suffer from nausea, remember your doctor has various drugs which might be suitable. If one
drug does not work, then keep asking your doctor if there is something else available.

Regards
Jan

[PerkymiteParticipant]

I was going to post ant then I read everybody’s efforts and thought they have covered it all.
However, my penny worth is:

Definitely buy the folding walking stick. Myeloma attacks the bone and failing over and breaking a shoulder bone is really not an option you want to live with.

Definitely drink the water, I was told 3 litres a day, and it does seem a lot, but you quickly get used to it. I buy 6 x 500 ml bottles and then fill them up from the tap. I also add Robinson Barley squash to help. They are left of the side where my wife/carerer can check I am drinking it. I had my check up last Friday and after nearly 5 years with this decease my liver and kidneys are clear, and I have to admit to being a heavy drinker in my time, so that is real good.

Definitely Listen to your body – do not be a hero, it will hurt you if you do. My son and Granddaughter came up to visit me yesterday but I felt tired towards the middle of the afternoon and went for a kip in my chair, if I tire I generally zonk out for an hour. I woke and we all carried on as if I had been there all the time.

Definitely tell everybody and talk openly about it. You are not at fault here. Be honest tell them you have got a cancer which is incurable at the present time, anybody could get it, do not feel guilty and DO NOT look for reasons why you have it. You will not find any answers. Do not blame yourself or your life style.

Definitely do not bother with Web site’s offering all sorts of magic cures for Myeloma on the internet. If eating two slices of cucumber and drinking half a glass of red wine a day could cure myeloma we would not be on Myeloma UK web site would we. There are several good sites such a Macmillan stick to them.

Definitely take the medicine, all of it, you are given, and take it how you are instructed to do so. Avoid taking advice from “quakes” who always know best and always want to give out advice with no real knowledge of what they are talking about.

Definitely Give yourself worth = plan your day. Do not allow yourself to sit in your favorite chair watching telly. I have a written list of jobs or things I am going to do, my wife adds to it if she want something done. I get up in the morning and I do at least one if not more, depending what they are and how strong I am that day. They could be anything; feed the camellias, build a raised flower bed, replace the bike shed roof etc…etc… I feel it adds meaning to my life and I get great pleasure crossing them through.

Definitely do fight becoming dependent. Myeloma affects us all differently so what you can do is down to you. But do not just allow yourself to become dependent fight it. I ask my wife/carer if there is any I can do for her I can make tea or coffee, Hoover the front room, I have just hung some washing out. I make my wife’s sandwiches for work (she only works two days a week).

Definitely plan your life. Do not accept that you are about to die and therefore nothing is worth planning. You have some life left could be as much as 10 years of even more, ensure you enjoy it. I appreciate you must act within your means but “you cannot take it with you”. My wife and I have a trip planned for London on the 19th to 22nd May. We are visiting the National Archives ( I am doing the Family Tree) Tuesday , we then move on to our hotel in London where on Wednesday we are going to go; up the Shard, visit the national Portrait gallery and finally end the day in Soho in a Sing-along Pub (roll out the barrel and all that), Thursday we are around the shops in London etc… finishing the day with dinner with my Sister. I might well be in a wheelchair but it does not matter. We already have on the drawing board another trip to Snowdonia Wales and West Scotland, whether finance or the old body allows it we will see but that does not stop us planning.

Here endeth the lesson!

Kindest regards – vasbyte

David

p.s. For Tom, coffin finished photos will be posted in “off Topic” shortly

[tomParticipant]

Hi David

Thats great  to hear ist finished but as I said when you started it ” No Rush to Use It” al keep checking and see

Take care David and stay well

Tom Onwards and upwards “Vasbyte” x

[Author]

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