Latest Pose, How it Goes, Wheelchair Woes - MPN Voice

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Latest Pose, How it Goes, Wheelchair Woes

JediReject profile image
ā€¢61 Replies

Good Morning everyone. . Hope this post finds you all in good or reasonable fettle. Just thought I'd post an update and have a bit of whinge about my recent wheelchair experience. Now the use of a wheelchair is something I never thought I'd need and to be honest like many peops I didn't understand or consider the needs of users. But gee whizz how my outlook on that has quickly changed. As a user my good lady wife and I have experienced the good, bad and downright ugly from our fellow human (?) beings.

Twice recently saddo guys have shouted obscenities at us / me from vehicles not having any idea of what I've endured and why I need the chair. Many folk are reluctant to move aside to let you pass especially if chatting in shop aisles and having waited and said excuse me please they sigh or tut. The pavements are so uneven you feel every raised flag and grid. Drop kerbs are a hit and miss, one on this side but no corresponding one across the road. On the plus side some folk can't do enough to ease your path and I salute them.

Was back at Manc Royal twice this week for my ECP treatment where my white cells spin off and go through UV light. Still on steroids as you can see from my bit of a moon face going on. Still waiting for an eye appt as my vision is impaired. Doc upped my water tablets to try shift excess fluid in legs and tum. My insulin was reduced a tad and once off steroids I ought not need it. My weight is improved though true weight is masked by fluid retention. And I bent down and hurt my back so need pain killers until it heals. Apart from that I'm doing ok and fairly chipper.

Anyway that's the latest. Once again I'd like to acknowledge just how much reading all your kind, supportive and concerned comments over these past months have helped to spur me on. Your contributions cannot be under estimated. THANK YOU ALL.

Cheers for now Chris

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bruddery profile image
bruddery

it is SO VERY old to hear from you. Glad you're managing to get around. I know exactly what you mean about peoples ignorance over wheelchair users. I have a mother who has been in a wheelchair for many years and they don't have a clue. I remember one time some woman parking so close to my car mother couldn't get out. I had to get out of the space get her out and then drive back in. Moron st its best. But I had the last laugh. She returned to the car same time as myself. I again reversed out if the space. Blocked her in and REALLY took my time getting mum comfortable in the car and putting chair in boot. Did she look peed off. Yep. But on a more serious note glad you are getting in with things. Hope you managed to see the grandkids especially the newbie. (Eli?). Good luck with everything Chris you are a mountain of strength to so many others. To tell us about your experiences is of so much benefit especially to those contemplating transplants. And for that I salute you. God Bless. And best wishes to good lady wife and family. Janice

bruddery profile image
brudderyā€¢ in reply tobruddery

sorry. Couple of mistakes smart phone wouldn't pick up cursed to change. Should be glad to hear plus a couple of others. But I'm sure you will get the gist. Janice

Paul42 profile image
Paul42ā€¢ in reply tobruddery

You have to laugh at auto correct sometimes....the site Damn You Autocorrect has some funny stuff on there.

I did raise a smile at the its SO VERY 'old' to hear from you :)

JediReject profile image
JediRejectā€¢ in reply tobruddery

Thanks Janice. . Yes it must of been sweet to make her wait. Karma at work. I did get to see my Grandson Eli thanks, he is beautiful but even though just 6 weeks I couldn't hold him too long. . Regarding my transplant it's important to remember not everyone has as severe reaction as myself and it varies greatly from person to person and is dependent upon many factors from the type of condition you have, to the type of stem cell transplant you have.

I wouldnt like to think my experiences wold deter anybody from going ahead wih a potentially life saving procedure. Yer pays yer money and takes yer chances !!

MFBMT2011 profile image
MFBMT2011ā€¢ in reply toJediReject

Agree, other Chris. We are all different and the process can do different things to us but it is better than laying down and contemplating a pine overcoat. A couple of buddies had a prolonged battle but won in the end. Keep fighting and next time I am on Manchester I will hunt you down. The other other Chris

JediReject profile image
JediRejectā€¢ in reply toMFBMT2011

Thanks buddy. We will meet one day soon and I look forward to it. Cheers my friend.

jeanr profile image
jeanrā€¢ in reply toMFBMT2011

I read this conversation with great respect to both the Chris'. Just from reading and being a sideline supporter, I can see a SCT is a huge process and really a battle to regain health. You have to keep fighting. I was very taken by the sentence about the pine overcoat- very true.

Paul42 profile image
Paul42

There really are some awful people about, the example of the supermarket aisle annoys me and I am not in a wheelchair, so i cant imagine what its like for you. Its almost like they have a sense of entitlement to that space regardless of if they are in somebodies way or not.

The guys in the vehicle are words i cannot put on this forum, I cannot even think what goes through their mind, i saw something a few weeks ago and was just shocked why anyone would do it - i was following a car and suddenly one of the passengers leaned out and threw a balloon full of water at a couple walking past which proceeded to burst and wet them through, i wish i hadnt been that shocked and that i had thought to note their number plate.

The state of the pavements anywhere is appauling at times, it seems maintenance of these has stopped following budget cuts.

Hope the chair can be discarded soon and you are back on your feet soon.

All the best

JediReject profile image
JediRejectā€¢ in reply toPaul42

Thanks Paul. . I hope to be more mobile soon as I love a walk. On a happy note I bumped into a mate from the social club I used to go in who lost his wife some time ago and he kindly lent me her mobility scooter and even dropped it off. Acts such as that go a long way to restore ones faith. . . . . šŸ˜Š

Paul42 profile image
Paul42ā€¢ in reply toJediReject

Indeed they do :)

Inca profile image
Inca

Great to have cheerful news of you Chris,great too that you keep in such good spirit in spite of such adversity.Experienced the wheel chair horrors with a great aunt of mine when we took her out to various places she wanted to see.People now ,are so rude and ignorant.That mobility scooter from your kind friend sounds just the ticket! Imagine the fun you could get on one of those!! I am going up to Paris T G V with hubby and daughter,one night ,to the Bruce Springsteen concert,trying to work out how far I can walk etc,then get thru rock 'n'rolling night without needing to call the Pompiers!!Last time we saw him,I had to be held up by hubby.....well you 've got to join in it all n'est ce pas????Very very best wishes to you and family,you are admirable and give us all a boost with your courage to beat this awful maladie we have.Great hat by the way !Courage mon Amis from a baking hot S France,Sally.

JediReject profile image
JediReject

Thanks Sally. . Your weather sounds fab, it's a grey miserable day here in Blackpool. I would like to see Springsteen live I bet it's an awesome time. Hope you manage to rock out there without the need for medical intervention. My advice is don't do any crowd surfing. I'm getting back into my music as when I was really down I couldn't be bothered with it. It's good to play some tunes. Take care and let me know how concert goes. Ta.

fannetastic profile image
fannetastic

What a joy to see that lovely smiley face again Chris and it aint a moon face by the way, it looks way more like the old Chris. Oops that didn't mean you had a moon face before. ( Am I just digging that hole deeper) lol. Seriously great to see you posting again. Re: the wheelchair morons, that's exactly what they are. A generation that have no manners and no compassion. Yes, its tough being in one but you are still here to be able to do so. BIG plus. A mobility scooter is the way to go by the way. I have one for when I go to my daughter in USA as she lives in the middle of nowhere and I wont drive on them roads. Uh Uh no way. It gives you a bit of freedom back. You will I know get back on your feet as soon as is possible and we are all willing you on.

Had a wee smile at all the Autocorrect stuff.

God bless you, you Blackpool Rock and all your family Chris. X

Anne

JediReject profile image
JediRejectā€¢ in reply tofannetastic

Many thanks Anne. An old friend has just lent me a small mobility scooter which I can get to the local shops on, if anyone is in my way now I can pip the horn. . I imagine you will need a twin battery one if you have distance to cover. Thanks too for the laugh about my 'moon' face it goes with my teeth which are like the stars. . . .They come out at night. šŸ˜‚ Chris

piggie50 profile image
piggie50

Hi Chris, so good to hear from you, I haven't posted for a while but always read the posts. It must be nearly 12 months now since your SCT. You must be very strong to get over and cope with everything that has been put in your way. I have great admiration for you.. Once again you made me smile as you reminded me of my late husband. When we were shopping if people were stood chatting in the aisle, he used to say very loudly " why don't you turn sideways and block the whole aisle" . I used to be mortified and scuttle off with my trolley! It does make me laugh now when I think of it.

Keep being strong and treat those horrible people with the contempt they deserve.

Much love to you and your good lady.

Judy xx

JediReject profile image
JediRejectā€¢ in reply topiggie50

Hi Judy always a pleasure to hear from you. My SCT was Sept 4th so not long til my anniversary. Was good to share your memory and made me chuckle, it put me in mind of myself many years ago in M and S with a knotted hanky on my head singing "Oh I do like to be beside the seaside" . Like you my ex wife left me to it and scuttled away. . .

Hope you are keeping well xx

jazzyb profile image
jazzyb

Great to hear from you Chris. I really hope your health is now starting to improve. You've got this far, keep on keeping on! X

JediReject profile image
JediRejectā€¢ in reply tojazzyb

Hi Jazzyb , I'm improving by degrees but I don't expect too much too soon from where I've been. Best thing is my appetite which is very good and my portion sizes are almost back to normal. As you say I will keep on keeping on best I can. Chris x

Helen1952 profile image
Helen1952

Always good and bad when someone is in a wheelchair or needs a seat on a bus because they look ok .

Hope you are soon back on your feet with a better back and great eyesight .

You may have lost a few things for a while but never your sense of humour .

X

Phelpsy profile image
Phelpsy

Wey hi Chris it's lovely to hear from you so pleased your in good spirits ,

your sure a inspiration to us all ,

I sure hope your treatment is soon coming to the end ,

I've just seen your in Blackpool I visited the winter gardens Illumination's this week was amazing , I love the place ,šŸ˜ŽSorry must get going I'm doing the

5k Race for life tomorrow so must get my dusty running shoes out

& broom stick a clean , hahaha

You take care & keep doing what your doing your looking smashing Lad X

Love Pam x

JediReject profile image
JediRejectā€¢ in reply toPhelpsy

Cheers Pam. Yes the indoor illumination is excellent. Very best of luck for tomorrow, I hope you have a Nimbus 2000 stick as I believe they are the best on the market. Take care x

JediReject profile image
JediReject

Thanks Helen. . Funniest thing going on is the fact that my sister is vegetarian and I've eaten more veg in past 2 months than in twenty years. Also I've replaced half the kitchen, crocks, cups, cutlery, even flippin tea towels. But to top it all I'm taking Kate for coffee in Dunelm Mill.

They do say you can develop the traits of your donor and it looks like there might be more than a grain of truth in it. .

Thanks for being there x

Helen1952 profile image
Helen1952ā€¢ in reply toJediReject

Going to Dunelm is taking it too far lol xx

chrissie1959 profile image
chrissie1959

Hi , glad to see you back and you are on the mend , some public are quick to judge if indout run them over take care and zoom x

glad to see you keeping smiling Chris. I know this is not a forum for political statements but I think the actions of governments in blaming all unfortunates and branding them benefits cheats etc has gone a long way to being responsible for the behaviour of some of the more ignorant members of society. Those who look at genuinely ill and challenged members of society suspiciously and with disdain. In all my live I have never before known such obnoxious behaviour. That last sentence should read "life" not "live"! Anyway Chris just keep on fighting. You are doing great. If there is such a phenomenon as karma those excuses for human being will get their come uppance in due course. There but for the grace of God go I.

best wishes.

JediReject profile image
JediRejectā€¢ in reply to

How very true. I happen to agree with you as I feel a real stigma claiming disability. . The constant policy to drive down the benefit bill for the disabled doesnt help to integrate us into society. Just my view and as you say we don't want to get too political, there's enough of that going on. . Cheers

jane13 profile image
jane13

u r marvellous! thanks for keeping in touch

jane

JediReject profile image
JediRejectā€¢ in reply tojane13

Thanks Jane . . One does ones best to keep fighting and remain positive.. . Doc told me it's a 1 in 3 shot beating stage 4 Graft Versus Host Disease and a guy at hospital said to me "you are still here for a reason, you have work to do yet" . Well I dunno about that but I found it quite profound and drew strength from it. . .

eire profile image
eire

Fantastic post Chris sounds so very positive even after all you've been through. Still a way to go but hopefully the worst is behind you. They do say there's nowt as queer as folk - or something like that!!!!!! The kindness of some far outdo the ignorance of others. Anyone can be ignorant takes class to have manners!!!!!!! Imagining you racing through Blackpool on your scooter don't get too many speeding tickets I do wish you all the very very best you're a real trooper.

JediReject profile image
JediRejectā€¢ in reply toeire

Yes Eire I've always tried to be polite and we'll mannered and brought my brilliant son up the same. I detest I'll mannered folk but some of it is likely borne out of the stress of modern living, others have no excuse. . There are many good decent folk like the guy who pushed our trolley into the supermarket as my wife was juggling my chair up a wee slope (why do they put slopes outside supermarkets) and trying to pull a truck along.

It's only a 4 mph scooter so I won't break any records. . Cheers

ourlife profile image
ourlife

Hi Chris,

The ignorance of others is some thing I can relate too, we are fostering twins with brain damage due to foetal alcohol spectrum disorder, people think they are naughty and we are bad parents !! Could go on all day about comments etc. Your positivity is admirable and I think of you and others when I start to wobble and am being more possitve myself, it's amazing how comments on this site helps, and I feel you have helped me more than I have helped you. I now officially have PV and was offered the magic trial with Ruxolitinib but drew a blank and got the next best !! Interferon,which is working well for platelets but seems to have no control over red cells or Hb.

Wishing you well.

Ourlife

JediReject profile image
JediRejectā€¢ in reply toourlife

Hi Our life, admire your caring for the twins, challenging I guess but rewarding. Many folk live in a bubble and are ignorant of many aspects of life particularly when it comes to disability whether it be physical or mental illness. Glad the interferon is keeping platelets in check. . Keep caring.

lizzziep profile image
lizzziep

Great to hear from you. You are certainly looking better!! I'm sure there are more kind people in the world than awful ones, they just don't make as much noise! Let's hope Karma gets the ignorant morons.To keep yourself amused you can make a nuisance of yourself on the scooter, roll up behind people then blast a horn loudly.

Anyway all the best for the future, your journey back to health is on a winding road, but you'll get there.

By the way, if you're getting more like your sister I have some dress patterns if you decide to make your own frocks from curtain fabric you purchased in Dunelm Mill. šŸ˜„šŸ˜„

Best wishes

Lizzie

JediReject profile image
JediRejectā€¢ in reply tolizzziep

I'll get me Grans Singer out of its case, oiled and fired up. Honestly it's no joke really, I picked some shoes for my wife in TK Maxx last week. . At least I didn't want to wear them so I guess it's not as serious as it could be. . , YET ??. St cell wise I'm 100% my sister but don't know if this can change or fluctuate. Thanks Lizzie

jillydabrat profile image
jillydabrat

Good morning Chris, well I say good morning but it is looking very bleak outside. My hubby is getting his new shed delivered Tuesday so he needs to get the base down in between the rain spurts. Love him to bits but it's going to be heaven to tell him to bugger off to his shed when I need some peace lol. I had to comment on the wheelchair story as my mother-in-law is wheelchair bound and, while shopping in Tesco, was told "People like you should only be allowed to shop at night"šŸ˜ž. Why people are so vulgar is beyond me. We couldn't get my late father-in-law in a mobility scooter or chair because of that so he suffered the pain of worn out hips and knees because of the fear of abuse. On the funny side, I hired a scooter for my hubby when he had a metal rod put into his foot. He was not allowed to weight bear on it for weeks. I must admit I walked away pretending not to know him when he did a 3-point turn in the freezer aisle of Tesco. Not only did he reverse into the freezer and get his rear bumper stuck, but he also ripped the whole vented cover off the bottom of the freezer when he finally got free. He definitely didn't belong to me that day lol.

As everyone has said, it's great to see you back in fine fittle. Hope you continue to recover in leaps and bounds.

Jill

Xx

JediReject profile image
JediRejectā€¢ in reply tojillydabrat

Haha thanks for the laugh Jill , my scooter is a modest size and turns easily so I doubt I will cause any damage. . Weather same here in Blackpool , a mixed bag. Hope hubby gets his base done ready for the Mancave. You might not have to send him but retrieve him.

The gaul of some folk is totally beyond me they should be thankful it's not them and have some compassion. Thanks for your response. Chris x

beetle profile image
beetle

Hi Chris. It's so good to hear from you and see that you are still being so positive in spite of the rough time you have had. I did a Masters degree in Inclusive Environments which was based on building and improving envirionments that are usable by all disabled people and able bodied. It was a real eye opener and I find myself going round now seeing faults everywhere! I understand that the Disability Dicrimination Act has now been superseded by the Equality Act but I don't see an awful lot of evidence in compliance! As you rightly point out, human nature comes into play here too. it has become evident since the referendum that there are some folk who are just plain nasty! My field of work was actually with visually impaired and although it had its funny moments I also came across people who thought it was funny to put dog mess on a blind person's path and a blind friend who was mugged - I guess they thought he wouldn't be able to identify them! It's a sad world at times but I still hope that most of us are kind and considerate.

At least we can rely on kindness and support on here - unlike some of the American sites where a certain individual in particular feels that it is OK to launch personal attacks! I am glad that our messages of support have helped. I can tell you that many of us were thinking of you and sending positive vibes even more than recorded here - still are actually

Take care and keep battling on, my friend

Jan xx

JediReject profile image
JediReject

Dear Jan, what an eye opener that must have been for you in your research and as you point up compliance isn't perhaps taken as seriously as it should be, recently I haven't been able to access a few shops or go upstairs because the lift is broken down. One of the worst for that is Manc Royal as Haematology is on the top floor. Fortunately there are other lifts.

Years ago I worked with the blind for a while and since my vision has become impaired I realise how hard life must be without so called jokers abusing them.

You're right about this site it's great and long may it continue. The caring helpful attitudes of everyone shines through. . Lovely to hear from you my friend xx

Nickthedevil profile image
Nickthedevil

Hi Chris it's really good to hear from you. You look really well -the 'moon' face suits you!! So sorry to hear about your problems using a wheelchair. It's unbelievable that people can be so obnoxious. Glad to hear you are still in fighting spirit and hope you continue to improve. Enjoy the freedom your scooter gives you.

Karen xx

JediReject profile image
JediRejectā€¢ in reply toNickthedevil

Thanks Karen, , yes my moon face look is better than the gaunt look I was sporting not long ago. I was quite scary and avoided mirrors, shop windows etc . . Popping out on the scooter soon. . Take care x

light profile image
light

Hi Chris, so good to hear from you and that you are doing better even though this may not be who you feel about yourself...... I had similar experience with using two crutches and not being able to move easy around. Also use of public transport that was quite difficult for me. I was only able to use buses and even that was difficult as to have to take more then one bus. It was nightmare. I was not able to use any trains as they don't have lifts in most stations, since I was not able to use stairs or escalators. And people would walk and bump into me as if they don't see me...... I am with you on this one.

Well things will get better for you and wheelchair will go away, it is just a tool for you to get through this period.

Wishing you well

Lana

JediReject profile image
JediRejectā€¢ in reply tolight

Hi Lana, crutches is hard work and as you say quite limiting in terms of getting about safely. Hazards abound. I'm hoping that once off the dreaded steroids my mobility will improve and I wont need my chair all the time only on days where I'm tired or maybe in the supermarket. Thanks for your best wishes. . Chris

jeanr profile image
jeanr

Hi Chris--- Really good to hear from you - I always wonder how you are doing - so it was a red letter day to read your post. I sympathise with the wheelchair woes. My pet peeve on a bike path I use is people wearing headphones walking their large dogs who can't hear or won't hear my bike bell and don't believe in sharing the path as they are supposed to.

I shall watch our for wheelchairs when I'm out and about and try and be helpful.

Great to see your face-- can I be cheeky and ask if your new grandson has inherited your good looks?

I do wish your news was better, I'm glad you've got a scooter, what a great friend. I'm glad too that you seem to have such a great health team and a supportive family. Lets hope you are in the home stretch and will be able to be on your own feet soon for a walk.

Wimbledon this morning and who should I root for- as a Brit - Andy Murray, or as a Canadian too --Milos R? I think I'm going to have to cheer on Milos who hasn't one a wimbledon final yet- nor for that matter has any Canadian.

Its a nice sunny morning here in Winnipeg. I got home last night to a cheery little 4 year old voice on my phone -he'd left a message "whatcha up to!" ---there's nothing like that little voice to cheer me up.

All good wishes---you've come a long way-- it will get better. Jean

JediReject profile image
JediReject

Jean, thanks for your lovely response. You flatter me as I always think I had a hard paper round bur yes Eli is a beautiful baby however I am bias. Maybe you should fit an air horn to your cycle that will do the trick.

Reckon you must go with your guy and his 140mph service. Your Grandson sounds sweet I'm not surprised he cheers you up. We had our 8yr old Grand daughter stay Friday night and Saturday , it's always good to see her and provides a bit of normality between hospital appointments. . Take care. Chris

Superwoman profile image
Superwoman

Chris you are one brave man šŸ˜€ You are an inspiration to us all, those people are ignorant, I wonder how they would feel if they were in your boots two fingers to them I say, sorry to be a bit rude but it makes me so angry when people react like this to people in wheelchairs they do comprehend.

Your courage is wonderful.

Thinking of you and you wife.

Jean X

JediReject profile image
JediReject

Yes Jean the incidents do raise my blood pressure a tad as like you say they have no comprehension how much effort it takes to get by some days, or the hours I'm hooked up to the blood cleansing machine or when I need red cells or platelets. The list goes on!!. . I did say to my wife "I hope his next poop is a hedgehog" but really I feel sorry for them as one day them or their loved ones will be touched by some form of cancer. They are too stupid to realise it. Chris x

Helpatlast profile image
Helpatlast

Ah kid good to see your latest post and photo - always encouraging to read your expressions and a smile on your face to boot despite all you have endured - well done on the progress. Hard experiences teach much compassion and empathy and you show that a lot whenever you post. And yes there are some unpleasant tough cookies out there - my old dad had Parkinson's Disease and i experienced some sad things seeing him first with sticks and then in a wheelchair and how vile some characters would be to him - as you say it's a real eye opener to what wheelchair users face. We live in a tough world a selfish generation with little humanity. They are the ones with the problem for sure, imagine going through living your life in such a foul way, such ones reap what they sow I think. Fortunately there is the other side of the coin too and you will experience kindness also, often from ones who have also faced something tough in life and learned the empathy - a site like this is a good source of that eh. Keep going you have come so so far and achieved so much and there will be better days ahead. All the best to you and your wife. Jill

JediReject profile image
JediRejectā€¢ in reply toHelpatlast

Hello Jill thanks for your reply. . . Parkinsonism isn't pleasant and being a visual condition gives some folk a chance to point and stare as they don't understand it. A friends wife had it bad and they got folk gawping all the time as she refused to stay home to become a prisoner. Good for her I say.

As you say this site oozes empathy as we all want the best for each other knowing how challenging our conditions can be.

Thanks for your best wishes. Chris

Mandy74 profile image
Mandy74

Hello Chris

There are too many people out therethat don't have the respect or patients for others anymore.

I just wanted to ask you if you don't mind how did you become in need of a wheelchair I really do hopeI don't sound rude. It's just I've been on interferon pegasys for about 6 years and I now have osteoarthritis and rheumatoid I on steroids and plenty of painkillers and my mobility is a bit restricted. They are trying to determine weather it's the interferon done it or just another condition I've developed

Thank you

Mandy x

JediReject profile image
JediReject

Hi Mandy, , I certainly don't mind you or anyone else asking me anything at all about my Myelofibrosis, Transplant or the after effects. . Back in February / March I was on steroids for my increased liver counts and started to lose weight. I also developed something called the BK Virus which can affect transplant patients. My weight plummeted below 6 stone and my muscles completely wasted leaving me virtually immobilised. I was admitted back into Manc Royal. It has taken a while to get back on my feet. I can manage in the house but need my chair when I go out.

Hopefully once off the steroids which are now causing fluid to build up in my legs and as my weight increases I will gradually get my mobility back. . That's the plan.

It sounds like you're actually coping well with the cocktail you are on but I don't envy your osteoarthritis / rheumatic issues. Hope the experts can sort you out. Good luck.

Chris

sksar profile image
sksar

I`m just emerging from 3days with the grandkids, so only just catching up with posts, but what did strike me Chris, was how many people had responded to your lovely pic and post. It just shows what influence you have had, with your funny comments and helpful replies, including to myself. Hopefully I am a long way from needing a bone marrow transplant, but what your posts have made me realise that it would not be something I would want to go through. I know everyone is different but at almost 70 years of age (next month) I would listen to the pros and cons but remembering your experience, I feel sure I would let my ET,or whatever it turns into, take its course. You have endured an awful lot Chris and been very courageous. Great to see you looking so well now though so keep up that fighting spirit. Good Luck - Sue

JediReject profile image
JediReject

Well Sue Im almost lost for words, ok so I'm not really. Firstly I would say to everyone don't let my experience deter you from going down the BMT route as i have been unlucky in having a severe case of GVHD. But lucky as my transplant has worked. You need to listen to the advice of your consultant and weigh up your choices given your prognosis, age, whether other drug options are available or in development, and the risks of transplant which are fully explained before you sign the consents.

You must be worn out after 3 days with Grand Children !! Happy times. Thank You for your kind comments regarding my contributions. I will keep battling until I'm as near back to my old self if that is achievable because I think this process has changed me though I'm unsure just how. . . Chris

buddin11 profile image
buddin11

JR you are such an inspiration. I'm so sorry to hear of other people mistreating you! Every one of us on this site would be glad to strike them down in a flash with our trusty light sabers! (By the way, your skin looks fabulous)...gail

JediReject profile image
JediRejectā€¢ in reply tobuddin11

Thanks Gail. . Yes I actually have a very realistic Yoda lightsaber, a real boys toy, so maybe I will take it with me. . . Funnily enough I was looking back at selfies I took at Christmas in Manc Royal when my GVHD was rampant and my skin was red, angry and peeling everywhere. It was like being in a snow globe when they changed my bed. I've come a long way since then and I'm sure my UV light blood treatment helps. I'm still putting an Aqueous cream on my arms and torso but only to moisturise.

Chris

babbittybumble profile image
babbittybumble

Hello Chris .Really good to hear from you and so sorry you have had to put up with this abuse from people. I hope all your problems will get easier for you soon. Bye,

Gill

JediReject profile image
JediRejectā€¢ in reply tobabbittybumble

Thank You Gill so do I , but I'm improving by degrees week on week. I'm sorry I was absent from the forum for a good time but I was in a dark place mentally and strong as i think i am i struggled to deal with any form of interaction. I suppose it illustrates how far i had fallen. Hopefully I'm well past that as I enjoy contributing.

All my best to you. Chris

lawhill profile image
lawhill

Hi Chris, I've been offline for a while now (won't go into details but all ok) but signed in today and was interested to read your latest post. First up, it was great to see your cheeky moosh on the screen šŸ˜‰ But not so good to hear about your experience with some of the dimwits that are allowed to walk the streets. I'm not usually rude, but that type of thing really irks me, and I'm sorry to hear you've had to endure such insensitivity. Only recently, my sister in law rang from Scotland to discuss a potential trip with my brother - her husband - to Norfolk island (where we live in the south Pacific) but I had to tell her that it wouldn't be a good idea. My brother has polio, and there's no way he'd be able to get about on the streets here on the island. They're just not good for those with crutches or a wheelchair. A problem world wide, it would seem. Reading that you're on steroids reminded me when I was on them for a while. Do you find that you have an insatiable appetite? I sure did! You have been through so much, and you still have a smile on your face, despite the raft of issues you've had. Your wife and family are wonderful supports, I'm sure. There are many things I wish for you, but the main one is to get out of that wheelchair, and go for a walk in a beautiful landscape with clean, fresh air. Best wishes to you and your loved ones. Keep on truckin' on! šŸ˜‡ Jeanette xx

JediReject profile image
JediRejectā€¢ in reply tolawhill

Hi Jeanette, haven't heard the name Jeanette for a long time but it puts me in mind of one of my first girlfriends , it didn't last long as we were only 13 or 14 back in early 70s and she 'developed' and grew up much quicker than I did and I think she was embarrassed going out with a young boy. Ah well no regrets.

Glad you liked my best cheeky moosh pic , I had a few cheeky choices but you can only post one. I don't know much about your beautiful Norfolk Island except that I had postage stamps from Kellogs cornflake packets again back in the early 70s from places like Papua New Guinea, Tristan da Cunah and Norfolk Island. For many of these islands the stamps were their biggest export. I'm sorry it isn't suitable for your brother to visit.

My appetite was improving but since the steroids it's raging. Trouble is I have to balance it with the diabetes from the steroids and I shoot 60 units insulin daily to control my sugars. Pity as I need all the sweet treats I can get but have to limit them.

Thanks for your best wishes. I hope life is now treating you well. Chris xx

harleydavidson profile image
harleydavidson

So glad you are having a good moan, you must be feeling better. The new baby is adorable. I hope you keep getting better. Mel x

JediReject profile image
JediRejectā€¢ in reply toharleydavidson

Haha Mel yes that's just what my wife tells me when I'm whining , so true. And as for my sons boy young Eli along with my 2yr old Grand-daughter (and our 8yr Grand-daughter on wife's side) I'm like a dog with 2 tails over my Grandkids as it crosses ones mind whether you'll be lucky enough to have any, and whether you will be here to see them growing up. I'm blessed as in my view there's nothing more valuable in life than family.,

Chris

harleydavidson profile image
harleydavidsonā€¢ in reply toJediReject

I agree with you entirely, I had my 20 month old grandson for the weekend and even at 6.20 am on Sunday, I felt blessed.

Mel x

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