MPN Voice
2,999 members4,561 posts

Mad Eye and Moody

Mad Eye and Moody

Hi Folks, hope the New Year is getting off to a good start for you, though I appreciate for some particularly those who have got the Flu virus it won't have. Fortunately as of yet I have had only a heav lingeringy cold.

Just thought I'd update how my on-going battle with GVHD is going with emphasis on my eyes. In December my left eye became painful and my appt at Manc Eye hospital cancelled. Typical of my luck. When I went 11th Jan was told had ulcer on cornea but good news was I was at top of list for cataract surgery. Hooray. But until ulcer heals no surgery on either eye. Boo. They put a 'bandage' in my eye in form of a contact lens and gave me anti biotic drops. So its on the mend. But Christmas , New Year has been challenging pain wise.

Yesterday I went to a blood donation centre in Liverpool for 2nd time to blood let so they can make me some autologous eye drops from my blood serum which help moisturise my dry eyes. Weird science indeed.

My mobility is still not great and the transplant process has weakened me considerably but I'm thankful to be here to write this.

Cheers for now and may your God go with you.

Chris

57 Replies
oldestnewest

Great to hear from you Chris! Sounds like you’re not having a brilliant time of it - hope all gets sorted soon. Love the pic 😊

1 like
Reply

My straggly hair is a touchy subject as my lovely wife wants me to tidy it up . . I should really but it's too oo cold . And when you've had no hair you're reluctant to cut it off, that's my excuses anyway. Hope you're well.

1 like
Reply

I agree with your lovely wife on this one - sorry! Is it ever too cold to have a haircut? Mind you I would like to see photographic evidence 🤣

Reply

I know , I comb it to a parting but I do look a bit of a dork, I wear a hat a lot to hide it. I cut ir myself but my eyesight is so poor I may have to visit a barber for first time in about 30+ years !! . . I will post a trimmed me next time. .

1 like
Reply

Hahaha! Only joking Chris! L x

1 like
Reply

I think it looks quite fetching - the mad scientist look!

Sad to hear of your troubles and hope the ulcer clears soon so you can see the world in gloriously sharp technicolour again.

Gill x

1 like
Reply

Thanks Gill, I'm certainly mad bot no scientist I'm afraid. Rest assured it will be fantastic to be able to make out detail and watch TV etc. Even see the food properly on my plate, I left what I thought was a mushroom but it was actually a piece of sausage. . Doh , , the dog was happy. X

2 likes
Reply

You’re lucky I don’t cook for you - you’d probably opt to keep the cataracts!! Ever seen ‘Butterflies’? She is a gourmet compared to my reluctant offerings

Gill x

2 likes
Reply

Haha I'll take your word for that Gill but you could serve up slugs on toast and I wouldn't know . Fortunately my good lady is a decent cook though she doesn't think she is.. x

Reply

I do try but get rather distracted and forget my timings! I'm not a foodie and only eat because I have to -my husband reckons I would be happier grazing in the field with the horse...

Reply

If I said that to my wife I might be wearing my tea but I know what you mean we tend to eat to live rather than live to eat. Though I could of done with being heavier as the Transplant process and hospital food does shed the pounds x

Reply

It’s great to hear from you! I think of you so often. I’m getting ready for my own trip down that scary road we call a transplant. I’ve had most of my pre-testing done. My donor is my brother who is a 100% match! Who would have thought when was such a bratty little brother that he might one day save my life?! Now I wish I had been nicer to him. But he seems to have forgiven me and is even willing to share his precious, life saving stem cells. Seeing you back here gives me more hope. I’m so sorry you’ve had such a rough go of it! I can’t imagine I would be nearly as tough as you. Sending you and your lovely wife my love and admiration from the US. xoxoxo

~gail~

3 likes
Reply

Well don't forget we are all different and my experience with GVHD at stage 4 is an exception rather than a norm. It's good to have a male sibling as donor and you can never really thank them enough for their selfless act. In turn when things aren't maybe going well they can feel guilty and I know my sister does even though I've stressed how she saved my bacon.

We lived by a rail track as kids and I used to climb over fence and tell wee sister I was stuck on the rail , and when the steam train thundered past I'd pop up from behind fence laoghing. Gee that was mean.

As o say you know where I am should you need an opinion or moral support. X

2 likes
Reply

Hello my lovely!

So good to hear from you but not that you are suffering so much. I do hope you can get your eyes sorted soon, hopefully that will make you feel a whole lot better.

I’ve not posted much lately, had to visit the Dr for two separate issues, awaiting hospital appointments and due to have a front tooth out in 2 weeks. Not looking forward to that one! I’d rather have a baby than go to the dentist!

Love the hair Chris, Ken Dodd springs to mind. 😊

Very best wishes to you both,

Judy xx

2 likes
Reply

Hi Judy, hope your health issues are sorted out. I’m afraid I’m no better with the dentist. I’m the same but not sure about having another baby, rather have an op though!!xx😹😹 kindest regards and hugs Aime xx

1 like
Reply

Thanks aime,

I’m feeling a bit down in the dumps at the moment and it’s nothing to do with my PV. Unfortunately, it means I’m hitting the chocolate which is not good so soon after Christmas!

I hope you are keeping well.

Xx

Reply

Hi Judy, sorry to hear your feeling like that and hope the rest of your family are well. My PV seems stable, fingers crossed, but my old arthritic bones are being a real pain but compared with what Chris has gone through, it isn’t life threatening just sore.

I’m the same with chocolate just now. I honestly don’t think it does any harm if it makes us feel better. My grandchildren are keeping me moving which is good - so is the hydrotherapy pool.

Take care, keep in touch, E hugs coming your way Aime xx😺😺

1 like
Reply

Just jumping in here to wish you well Judy. Things often seem so much more depressing in January. Chocolate therapy is good....take it from an expert.

Xx

2 likes
Reply

Hi Chris, so good to hear from you. Sorry to hear of your struggles but you have come this far, I have no doubt you and your good wife will make it to the light at the end of the tunnel, where your health will have improved.

I agree with Judy, Ken Dodd springs to mind in respect of the hair. 😸😸 but I’m sure we can let you off with that until warmer days come. You take care and let us know how you are progressing.

Hugs and love to you both Aime xx

1 like
Reply

Thanks Aime, you're right having come this far were not rolling over any time soon and will do what it takes just to be able to have a full day out together which doesn't involve hospital. We have a wedding coming up in April down in Gloucestershire so I'm hoping my cataracts might be sorted by then.

Sending love and best wishes your way and Thanks for all the support you give to me and all others xx

1 like
Reply

Hi Chris, thank you for your kind words. This forum has supported me so much - it’s a godsend.xx. It’s good uve got the wedding to aim for and I’m sure getting your eyes sorted will make a big difference to how you feel.

Let us know how you get on - wedding pictures please!xx

Aime 😺😺😺😺🍾🍾🥂

1 like
Reply

Hi Judy , good to hear from you and sorry about your impending dental work. You're the 2nd person I've heard say they'd sooner give birth than attend the dentist.

As I said to Sand Dancer my hair is an issue with my wife and my Grand-daughter calls me Einstein , , , if only. If brains were chocolate I wouldn't muster enough to fill a Smartie.

I'm ok I get a tad grumpy but not with any nursing peops I usually smile through gritted teeth during most treatments and always thank them no matter how uncomfortable it may be. Of course you can't grit your teethtogether at the dentist so just try and take yourself off to some lovely memory you've got locked away. X

2 likes
Reply

Nice to hear from you Chris.

Sorry to hear of your ongoing battle though. Let’s hope the cataract operation improves things for you.

Good Luck

Mary

1 like
Reply

Aye I hope so it's been a frustrating year as they ave worsened but it's not totally dampened my spirit. You do find yourself thinking if only I could go back 3 months I'd settle for that. . I will still have GVHD in my eyes when cataracts removed but my blood serum drops should help.

Keep well as you can. . .

1 like
Reply

Is the gvhd systemic, or does it just affect your eyes? Excuse my ignorance!

Mary

Reply

They like you to get a bit in form of rash to show the newly grafted cells are taking over but that is mild GVHD say Stage 1 to 2. Mine was unfortunately severe reaction Stage 4 which affects your whole being as the new cells see you as a foreign body and attack your organs badly. But not everybody gets it so bad. My friend had a small rash on her hand and she recovered quickly. She leads a full life again.

I'll get most of my life back with limitations.

2 likes
Reply

Thanks for the explanation Chris.

Reply

It's so good to hear from you Chris. You are still being challenged after all this time it must be hard on you all. You can still remain positive which in itself is amazing. I soooooo hope they get to sort out your eyes asap. Best wishes.

Pat

1 like
Reply

Thanks Pat I will be cock a hoop (as I think Larry Grays on used to quip) when I can see some detail again. It might stop me breaking empty glasses which are invisible to me. . . . . Cheers

Reply

Hi Chis, great to hear from you, we all think about you often. So sorry about your eyes - I hope you can have your ops soon. Love the hair but can see your lovely wife’s point of view! I know what you mean about grinning and bearing it at hospital appointments, but I haven’t forgiven my haem yet for practically threatening to drag me to the stroke ward when I was talking about the side affects of hydroxy and I dared to mention quality of life! Still, where would we be without them, (and I still thanked him nicely).! Look after yourself my friend, and hope you enjoy the wedding. Karen x

1 like
Reply

Hello Karen my friend, your story there made me smile not least because it reminded me of how I would love to take some folk with me to the Haematology Day Unit or ward to see first hand how very poorly some patients are. Regards my hair I'm ready to have it cut but don't trust myself to shave it myself. Maybe I will let Mrs G loose on it 😲. Keep well x

1 like
Reply

Well Chris, despite your obvious difficulties it is SO good to see you back here. We know that your eyes have been troubling you and so you don't get on here often but there are many beside me I'm sure who worry about you but don't like to intrude on your privacy by messaging you

As you say, some weird science going on there to produce eye drops. You are coming up against cutting edge science far more often than you would like I'm sure

I have so far avoided the flu bug but my partner succumbed and was really poorly. I am off to London in February to have a ferriscan to find out what damage iron overload has done me from frequent transfusions. I also get to see Claire Harrison again so consider myself fortunate. I have two sons living in London and they have made plans to take care of me and take me to see a show. Aladdin looks the most likely at the moment. I'll let you know how it all goes but in the meantime take care and I hope your eyes get sorted soon. I've had a corneal ulcer and know just how you feel. Very,very best wishes Jan xx

2 likes
Reply

Hi Jan always a pleasure to hear from you and reassuring that you understand why I'm not using the Forum very often. Some days I can hardly fingers my tablet never mind try and type or read on it. But please feel free to message me anytime if I'm conspicuous by my absence as I would welcome any 'intrusion' of that sort.

I hope you enjoy seeing your son's and they spoil you rotten , a show sounds great but I'm a bit of a museum exhibit (an old fossil) so quite at home in the BM or V and A. Anyway I hope your appt goes well and the transfusions haven't left a scar. Chris xx

Reply

Hi Chris, lovely to hear from you, love the photo, hope all gets sorted out soon for you. Can't make any remarks about your hair, as people will say, 'I'm one to talk' with blue hair, so go with the flow(ing) locks my friend. Maz x

2 likes
Reply

Hi Maz, I learnt a long time ago just to be myself and not bow to pressure to conform to what others expected of me. Of course things are a lot more liberal both in and out of the workplace than they were. I like coloured hair and blue is certainly a bold choice so fair play to you.

Thanks for all the work you do on all our behaves, the Forum is helpful to so many not least me, myself and I. X

Reply

Hi Brave Jedi, glad you're still battling on. He who dares wins! Eye drops from blood - very scientific. Hope all goes well for you with the cataracts etc. The hair will wait for the warmer weather - I can recommend a good dog groomer for when you decide to shed your winter coat!

Best wishes from the right side of the Pennines

Lizzie x

2 likes
Reply

Hello Lizzziep I would be happy to let a qualified dog groomer loose on my glossy top coat as they are probably more experienced with a shaver than many barbers. I hope you are keeping well and I won't disagree with you regarding the right side of the Pennines. Chris x

1 like
Reply

Hello Chris ,Nice to see your picture, so sorry the catarracts have not been done as yet. Science and all the things they are trying to do amazes me , I do hope your eyes are a little more restful with this new treatment. As Always, take care.Love Gill

1 like
Reply

Hi Chris lovely to hear from you, love the hair, bit of the Nutty Professor going on what with the eye glass🧐 bit of a nuisance not being able to get your cataracts done due to the ulcer on your eye, very painful indeed, feel for you. Let’s hope once it’s healed you will get them done, transformed my husbands eyes now he can see me 🤪 not sure if that’s good or not.

Considering what you have been through you look really chipper and it is always great to hear your oh so witty words, you and your sister must of had so much fun growing up, even if you did pretend to get mowed down by a train just to scare her.

Let’s hope that 2018 brings you the operation on your eyes so that you can once again see life clearly again.

Love to both you and your lovely wife.

Jean xx

1 like
Reply

Thank You Jean, yes we had fun in our early years as we didn't have tv, computers and electronic games to keep us happy it was things like a soapbox cart, spirograph, etch a sketch, lego, etc but not anything near what our Grandkids have. We made a lot of our own fun and played out.

Many folk have told me what an enormous difference they found after their cataract ops. Some were still driving etc when they had them done which is a bit scary as there's no chance of me doing that as mine are large.

Jean Im not going to allow myself to get down about things because I've witnessed so many very poorly peops and a number of my peers either didn't have a successful BMT or their condition re-emerged shortly after. So I try hard to smile through it all. Chris xx

1 like
Reply

Hi Gill thanks for replying. Yes things have certainly progressed in the last 20 years in terms of cancer treatment and in many other ares I guess. Even in the past couple of years there have been new treatments in the field of BMT . They learn by experience in some cases and when patients like myself who are challenging to treat a bit more knowledge goes in the pot.

The blood serum drops do ease my eyes better than normal ones but the trouble is I continually rest my eyes and so nod off to sleep. . . Chris x

Reply

One word - Legend ! Xx

2 likes
Reply

You flatter me Helen, , , AND I LOVE IT 😁 X

1 like
Reply

Hi Chris, regarding your hair, one approach is the old saying, “if you have it, flaunt it!” In the US there was a tv series long ago called Ben Casey which had a main character of a brilliant (although slightly odd/quirky) doctor, named Dr Jaffe, who’s hair was a bit like yours. Fortunately the only similarity is the hair & brilliance!! But if you want to keep it you can grow it a little more & put it in a man bun. Do you have those over there? Quite the rage here, especially among young good looking guys. You’d fit right in😊. Good luck with your eyes, must be very tiring and upsetting at times. We all are thrilled when you’re able to post. Love, Katie

3 likes
Reply

Haha that made me laugh Katie I think a divorce would be on the cards if I had a 'man bun' , , I will leave that to the younger generation. I don't recall that tv programme so unsure if it came across the big pond. I will Google it.

I do keep a watch on the Forum but it's quite hard work as I need tablet brightness low which then makes things harder to read even with magnification. I get a tad frustrated and my tablet could become a frisbee. . . Take care -Chris xx

Reply

Just be sure your tablet-frisbee doesn’t hit anything important. Maybe you should get a nerf football you could throw when overcome with frustration.

Reply

Hey Chris, Katie again. I just realized that I can’t recall a post where you weren’t a little upbeat about one thing or another. Plz know that you, Chris, don’t have to always be cheerful on here. As you know, we all have rough patches where we need some emotional support and ask for it here. So please don’t hesitate to seek some comfort from all of us during hard days. Katie❤️

3 likes
Reply

Hi Katie again, point taken and like everyone else I do have down times for sure and this Forum helped me enormously through some dark times when my GVHD kicked in. But to be honest I've discovered I'm more of a glass half full type. But rest assured should I need to call on the lovely folk here to help I will do. It is very astute of you to notice. Love xx

2 likes
Reply

I love the hair. It is winter after all..... im glad your feeling better. It can only get better from here on.....

Take care x

Reply

Thanks for your kind words Wormwood , I feel awkward calling you that it's not very flattering. . . I like to think the worst is behind me and that I'm on the up. Take care yourself x

1 like
Reply

Hi Chris. I believe that you should go with whatever makes you happy. Sorry that you're still having a tough time, but so glad that you're well enough to post. I hope things improve very soon. I once had a herpees type virus in my eye and I couldn't close my eye for 5 days, god it hurt and I was so tired, so I really feel for you. Take care dear man. Love Mel xx

Reply

Cheers Mel always lovely to hear from you, . One tends to take ones eyes for granted when you've gone many decadet with them serving you well. It's a shock when your sight deteriorates to the point mine is at. But at least I have been told mine is restorable. The irony is I was looking forward to the time post transplant recovery that I could play my beloved snooker but it's me that's ended up snookered as I can't see the balls clearly enough. So I have to wait a tad longer to blow dust off my trusty cue. Love to you and yours - Chris xx

2 likes
Reply

I'm sure that the the cue and balls will wait for you. We had to sell my dad's 3/4 size table a couple of years ago, it broke my heart for sentimental reasons, I was absolutely rubbish, the only thing I was good at, was brushing the table when everyone had finished. Lol. Mel xx

1 like
Reply

Good to see you back on line Chris, we're both well into our 3rd post SCT year now which is quite a feat!

Jakavi was stopped for my liver GvHD which is a good sign - know for sure in a few weeks.

Take care

Crapaud

1 like
Reply

Yes Gary how time flies when you're enjoying yourself !. Good news about your Jakafi, I know my consultant doesn't see it as a long term drug for me but I think it's helped wean me off the dreaded steroids. Hope all continues in right direction for you my friend. Cheers

Reply

Hi Chris, really good to hear from you. I think about you often. So sorry you are still having such a tough time, I do hope things will improve for you this year. Keep on keeping on! Lovin the hair by the way 😁 xx

1 like
Reply

Hooray another thumbs up for the tattie head look, my good lady says I could be Wurzel Gumidges stunt double. . Jazzy I fully intend to keep on keeping on as you put it. Thanks x

1 like
Reply

You may also like...