Mood change

[Headinthesand]

My husband diagnosed with PCV about 15 months ago and on aspirin and hydroxy which has recently been reduced to 3 x500mg a day. Over the last couple of months his personality has changed and he has become very obstinate and changes mood quickly. My children have noticed and commented on this. His office (family business) would prefer he doesn't come in on a Monday because he's so stroppy. He has been helping our builder at home and he too says he would prefer he went yo work sometimes. He works with his brother and I had a chat to him and he too has noticed a big shift in temprement. He sticks his head in the sand over the illness and it is I who does the research. Anyone else experience mood changes etc

[Loubprv Volunteer]

Hi! I've had PV for 6 years and tend to fly off the handle mo re quickly than before.

Doesn't always happen - I'm usually a really laid back person, but I put it down to the unknown and just go with it, as do my family.

You know, being diagnosed with something rare is fairly frightening and frustrating, not always feeling as well as you used to, feeling tired more than you used too is BLOODY frustrating.

We have to remember to take drugs we don't want to take, perhaps your husband is worried about the future - yours as well as his.

Please be understanding, he has been diagnosed with a rare blood cancer which alone is life changing believe me.

He probably looks fine for most of the time, but maybe feels far from fine for most of that time except if he's anything like me he won't feel it.

All I can say is, thank god I don't have to get up and go to work anymore to support a family or even myself.

Be patient, be understanding, and tell everyone else to be so as well.

Time for a heart to heart with the family perhaps?

Love

Louise

x

[spikesnana]

I have only been on hydrea for about a year but I do feel different. More crabby. I look fine but its a struggle every day. I feel tired and dizzy and nausea almost every day. I don't want to burden anyone but it is really hard. I also work and I'm struggling to go each day. I pray everyday for strength to make it thru. I feel like I've put my life on hold. Don't even know who I am anymore. Be patient with your husband.

[JediReject]

Hi Headintsand, so frustrating as I typed a response and windows updates shut me down seconds afore I posted it. Basically I agree with the above responses but would say the diagnosis has a major emotional impact above and beyond any meds one is prescribed. I am qualified to say that after 8plus years on the Hydrox tho I have found my move onto Ruxolitinib has affected me more emotionally than I expected. . Please be patient and supportive with your hubby as although it sounds a tad twee, in terms of coming to accept his 'new lifestyle' he, you and all of your family and friends are on a journey. Wishing you the very best. Love JR

[jane13]

hi, my husband says my brain goes to mush from time to time since i started taking hydroxy - have a look at "chemobrain" on macmillan or similar website. what your husband is experiencing could be caused by a chemical interaction with his hydroxy. I am struggling with this but have not found any solution, so do let me know if you do better! Jane

[Aime]

Hi Headinthesand, sorry your husband has been given this diagnosis. I was diagnosed in 2012 and found it a very scary experience and a reminder of my mortality!! All the tests, uncertainty, symptoms, etc cause anxiety which then results in short fuses, exhaustion, relationship difficulties, etc, etc. I feel my husband is unsympathetic a lot of the time as I will mention how I am feeling and he ignores it or makes a flippant comment that he's feeling like that too. In my case, I feel he is the one who has buried his head in the sand so maybe its a man thing? Good question for the guys in this forum!

I try not to say too much to my family so bottle up how I am feeling which makes it worse but I don't want to worry them - perhaps your husband is trying to do the same? As others have said the brain fog and fatigue are very frustrating and exhausting - I have these symptoms but not on meds so far.

This forum has been great for me, there are so many sympathetic and nice people on it who DO understand what you and your husband are going through. They have been a fantastic support for me. Please know you are not alone and will always find a friend on here. Best wishes Aime xxx

[Dubmatix in reply to Aime]

Aime

That is exactly how my wife handles my PV. She does not want to talk about it, has not read up on it and didn't want to attend the MPN conference with me. I think it is her way of coping with it but it doesn't help. So i soldier on, i have adjusted and now try and eat as well as possible, and walk every lunchtime at work though this does seem to take all of my energy up.

But there is always time for my 3 yr old and my VW Beetle rebuild. I need to do these things whilst i still can and have found a new energy for life enjoy the little things too. Agreed about this forum, it's great to see what others are experiencing and find out more about advances in the causes and meds.

John

[Aime in reply to Dubmatix]

Hi John, glad you have found the forum so great - I wouldn't like to do without it! I have a 20 month old grandson who keeps me moving which is great! I hope your rebuild of your Beetle goes well and keep in touch on this forum so we can all support one another. it must be difficult for our loved ones too! As Louise says many people have lived for a lot of years with PV so keep up the good work! Kind regards Aime

[Michael56]

Hi All

I had the same conversation with on Sunday, my wife of 40 years obviously knows me as well as I know myself and said in passing I'm not as tolerant as I used to be, seems I've turned into Victor Meldrew!

I'm fortunate to work from home most days so this allows me to step back from the work arena when I start to get stressed.

I'm PV and on Hydro and aspirin the same, I don't really think its because I've become grumpy with age (58), it's generally because the condition itself and effect of the treatment does effect the process of dealing with the day to day information the brain takes in and makes the reasoning process harder, throwing out cast away comments on trivial things that wouldn't have caused a blink from me at one times.

I find I'm worse just prior to my appointments, now every three months and then face a quick bout of fatigue and "emotional" flatlining straight after, then I pick up again. It's very hard to plan ahead when in the background we always have a little nagging doubt of just how long the current pre-cancer condition will last before it may or may not become full blown but in the meantime, we are where we are, grumpy or not, I do love life and the cast of friends and family that are part off it, just keep telling yourself that, I'm sure your hubby feels the same and loves you all, seems all partners to these afflictions are saints in their own right!

Mick

[Aime in reply to Michael56]

Hi Mick, I am lucky enough to do some work from home which does help and I know I can be a "Vicky Meldrew" sometimes. Yes I find it worse prior to appointments too - I know I pretend not to be worried but if I'm honest I am! As Louise has said many people live for a lot of years with PV but I know it is hard when you feel so fatigued, itchy, emotional, etc and getting lots of needles stuck in you, that something serious is not about to get worse.

I work in road safety and I reckon I am probably as likely to get killed or seriously injured on our roads than make a move from PV to something worse - or that is what I tell myself. Someone once gave a very good description of our blood cancers on the forum - aggressive cancers were in the first league of football, our PV (as it is at present) is probably away down at league 6. You can tell I don't know much about football but hopefully you can understand what I mean.

Take care, every best wish - kind regards Aime

[Loubprv Volunteer]

Oh eck, John!

That sounds a bit dismal! Whilst you still can!

Good lord, there are MPN patients who've had their cancer for up to 27 years... Don't be downhearted, new medication is being developed all the time. I feel fantastic, am I the only one, just plain fortunate, or is it because I follow a rigidly organic diet, don't drink alcohol, and really really look after myself?

You need to keep a good sense of humour, and please please try and take a firmly positive view on life, it makes such a difference believe me.

I'm 60 by the way.

Louise

x

[Michael56]

Hi Loubprv alias Louise

Seems between you and twinky you have the happy happy department all sown up between you, good on you for that, I follow your sentiment but do remember that the regime you are happy with may not work or be just as suitable for everyone. I for one couldn't handle your methods of organic and I still enjoy a drink as I think a lot of us do and I'm advised by the specialist that in moderation it has no bearing on the condition. I'm really pleased for you that all your efforts work for you but we all have our own way of dealing with our conditions, live and let live!

Mick

[Headinthesand]

Thank you all for your replies. Do you think counselling would help him? Has anyone else taken this route?

[Aime]

Hi, I am going to speak to a psychologist soon (not on nhs need I add) and although there are a few issues needing aired, my PV will be one of the main ones. Once I have been a few times, I am going to ask my husband to come along too to see if he will air his views. Best wishes, thinking of you Aime xx

[Dubmatix]

I'm alright really, i was just being pragmatic...i mean whether we have an MPN or not, "carpe diem", and you can't go too far wrong can you? I sometimes have a worry about the development of AML which can happen...but then i stop worrying about it as anything can and does happen to anyone. It's not worth the mental effort to think about! I'd much rather think about the lovely sunrise this morning or that nice cake or the nativity tomorrow. Now that will be fun!

I too have noticed that i get anxious about a week before my appointments and that makes me a bit snappy. It's the thought of it changing i guess that gets us worried. I always treat myself to a sausage cob (bap for those not of the E.Mids) from the hospital cafe if my bloods are good.

Life is all about the little things. Enjoy those and you have it made!

John

Beetle progress has slowed as we've been decorating....my list of house tasks was growing. And it's a bit nippy in the garage at the mo! September 2016 is my target date for getting her back on the road.