Hi @Ells.
You’re probably get fed up of them checking in you 
but how sweet of them!
I only recently shared my story. I’m part of the Follicular Lymphoma Foundation and needed to help them in increasing awareness of blood cancer. They published my story on their page. It hasn’t felt right until this point - 4 years post diagnosis and I was really nervous. However, it had a purpose and the responses were amazing. Like yourself, I felt ready to be able to answer their questions. People were more surprised that they didn’t know. Lots of people said how brave I was. I found that quite difficult as I don’t feel brave most of the time! I’m glad I did it and I hope the responses you get from people are as positive as I got. Keep us updated X
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Hi @Nichola75 @Erica
Well most people have ignored what I’ve said but a few have said they didn’t realise what I’ve been going through and I’m now in touch with a couple of friends I’ve not spoken to for a while. One of which said I was brave like you I dont feel brave but she said she felt maybe it was a bit patronising my response was not at all most people tend to feel sorry for me which is something I don’t like at all which is why I don’t tell people…
Others who read the statue just liked it or sent their love… As it was mixed in with the back update they’ve focused on that rather than the blood cancer… However this morning I’ve found some pictures and put them on Facebook to raise awareness… I have already changed my profile picture same as I did last year nothing was said about that but this year I want to try to let people know…
I know there is alot of chance in my family and my family post cancer statuses and think that’s OK but my feelings on it are you need to do more than the bog standard ones that go around try raising money for the cause only 1 member did the rest just post which doesn’t do anything it frustrates me and this was all before I found out about me… I always said if I was able to I’d do something to raise funds and if I find something I will do… All I do atm is buy from the shop and donate money when I can afford to…
Sorry rant over
Happy Thursday oops Friday… Can I have Thursday again please 
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Hi @Ells you rant as much as you like as I related to it so much and those are the sort of responses I got when I told people of my diagnosis.
I was on watch and wait and one friend, who had just got some redundancy money, offered to pay for me to go privately and get treatment and be cured. How touching but I had to say Leukaemia doesn’t work like that !!!
Happy Friday and you find out who your real friends are.
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I agree with all that @Erica said! You know who the important ones are. Sometimes as well, people just go t know what to say.
I love a rant @Ells!
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Hey @Erica & @Nichola75
Thank you so much… I was just going to post.one of the groups.im a member of but didn’t know which.one the back pain,.arthritis or ET so I came on here instead you’re more understanding…
I’m not being very productive today all I’ve managed to do it day is get up and make coffee 
I.put.off my shower from last night to this morning and still haven’t found the energy to have it… I was thinking as its chucking it down maybe just taking the shower gel in the garden and giving the neighbours a laugh
Had a spooky moment last night I had to do my nails yesterday and was texting mum only to find out she’d done hers too… She sent me a photo we’d only done the same colour… Especially wierd as moments before I chose my colour I was looking at my pinks it settled on the dark red… She’s 200 miles away on holiday in Wales… It’s her turn to see the country and like me she loves it, it her first time going there… She’s gone with her friend…
You’re right people don’t know what to say and I’d rather they say that or do what some of my friends have done and just gone I’m here for you if you need anything… That’s good enough for me… No I feel sorry you I don’t need that,. No ignoring it, it’s not going away, no I hope you recover, that’s not happening despite people thinking everyone recovers or dies from it… I mean that was my thoughts until I got this it didn’t take long though for me to understand what’s going on… Ish maybe the way sometimes I explain it doesn’t help… It’s me trying to say don’t worry about me im fine as I’ve lived with it for years before the diagnosis so clearly I’m good and now I’m being looked after with meds and regular blood tests… And as I explained its most recently I can’t fart without it going through haemotolgy to see if I need to do it in hospital
Hope you’re all good happy Tuesday. 
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Great to hear from you @Ells.
If you think what you and your body have gone through emotionally, physically and practically I am not surprised that it is telling you I just need to recuperate and ‘not be very productive’.
Having been out for my daily walk today and getting literally soaked to the skin I think your shower idea is brilliant. I was tempted just to put myself in fully soaked clothed in the tumble dryer.
Wow, what a spooky moment with your mum and matching nails. I hope she is having a wonderful time in Wales.
Just off to the hospital for a dermatology appointment about the growths on my head, my head already looks like Friar Tuck due to previous skin cancer op and it won’t look good if I turn up looking like a soggy Worsel Gummidge as well.
Yes, Happy Tuesday and give yourself permission to do the bare minimum today, you deserve it.
Let us know how you are feeling and doing tomorrow on Happy Wednesday.
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Let us know how you get on @Erica X
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Hi @Nichola75 and @Ells, I have felt really tearful all day, this appointment has been cancelled so many times I didn’t dare think that it might really go ahead.
I should feel really pleased because I knew the growths were not cancerous, but scar tissue.
The options going forward are not radiotherapy as we are not dealing with cancer, this is again good news.
We have exhausted every cream in the book, they have not worked, freezing them doesn’t work, chopping them off doesn’t work.
The consultant was very against another major op and skin graft, this is the very last resort as I haven’t got much head/scalp left.
So the way forward is a day surgery op where he removes everything near the surface and digs out the big growths and he assures me all will be well and nothing will grow back.
Tonight I am exhausted, still tearful and feeling a bit flat, the fatigue has set in, but I will say it again it is good news !!!
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Hi @Erica. That’s sounds like a really exhausting day. Lots of good news there but still very stressful when it’s anything that needs intervention.
When will the day surgery take place?
You are always telling us to be kind to ourselves, especially after an appointment so I hope you’re taking you’re own advice today and are tucked up in bed?sending a huge amount of love your way X
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Hi @Nichola75 and @Ells I await an appointment.
Tucking myself in as we speak and await my 9.30 hot chocolate.
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Hello @Erica. Just checking in with you. How are you feeling today? Thinking of you. Warm wishes Willow. X
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Oh thanks @Willow I am still feeling fatigued but processed what was going on for me during my morning walk.
It does not matter what the condition is often my fears, thoughts and feelings are the same.
The outcome was positive yesterday and I am very lucky.
I had so many (in the scheme of things very insignificant) problems actually getting yesterdays appointment that awaiting actually getting the next appointment and being out of control is what I hate.
I am still awaiting a next day call back from EE about my phone and that was 2 weeks ago !!!
How are you?
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Hi everyone…
OK sorry I’ve not been on today @Erica how are you feeling first of all…
You’re right I keep forgetting its only been 3 weeks and I’ve got no further on my recovery in the week I can do no more than I was last week I’ve not been going for walks and I’m struggling with exercises…
The shower idea stayed just that bit it was so tempting it would of been much easier than climbing in and out of the bath to have the shower… It’s so exhausting… I’m not sleeping well atm I’ve not idea why but at least today I’ve had an afternoon nap after doing nothing all morning
It was a very spooky moment… She’s having a lovely time chilling but over doing it herself she goes away every year with her friend we get to look after her dog who is such a cutie I swear shes the dog version of my partners son…
I’m so sorry your appointment has been cancelled so many times.i can understand how you feel when I got diagnosed with anxiety my realisation I had a problem was when my doctors appointment got change to the nurse and I broke down after I’d had the call and then again when I got to mums as I had been driving at the time… Phone call was hands free BTW…I am so pleased you have options which can be overwhelming when you’ve been emotional all day. You need a clear head to think things through… I totally agree with @Nichola75 you need to have a day of rest and relaxation… You need to take care of yourself the same a I do too… As dave said to me this evening its OK to have an off day…
Oooh 9.30 hot chocolate sounds lush now was that just the plain hot chocolate or was it a totally spoil. Yourself hot chocolate with whipped cream and Marsh mallows?
I understand how you feel about everything I feel the same my partner doesn’t understand. My anxiety takes over and I can’t control it… I wish I could…
I don’t like not being in control of things either which makes my anxiety worse.
And these comapies who say they will call back next day or shortly are a joke… My son had a plumbing problem last week luckily dave went and shut off the tap his housing company said someone would be out in the morning baring in mind it was classed as an emergency saw him 3 days later they still hadn’t been out… Luckily. He can come to us for a shower or bath but he has no hot water tap in the bathroom… Total joke…
I hope everyone is good happy Wednesday what’s left of it xx
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Yes, @Ells as Dave says it is alright to have a day off to re-cooperate, you have been through so much.
Recovery takes a long time and perhaps if you are like me it will never be quick enough for you and perhaps you put a lot of pressure on yourself.
I find that I can have a nap in the afternoon, but if longer then I do not sleep as well.
I was lucky enough to go to a local government cancer exercise rehab, oh, it was tough, but it actually it helped me with my osteoporosis and curvature of the spine as well as my fitness.
My Osteopath had predicted that I was going to be wheelchair bound.
I was on crutches for ages and we had house underpinning at the time and when the builders left they brought me flowers and wine, I think they felt sorry for me !!
My hot chocolate is Sainsburys own and you just add boiling water and my husband says I have too much of the hot chocolate in it !!
Happy everyday to you.
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Hi @Erica & @Nichola75
I’ve had a better day in some respects I got more done even got dressed but suffering alot… I’m not recovering well but thry did tell.me it was going to take me along time having arthritis in my back wont help… Yes I think I do put too much pressure on myself as I want to be like I was before but I know that’s not going to happen. The pain in my back is still the same albeit I’m on less medication as I’m not allowed 1 of them. For 6 months. But the leg pain to some degree has improved… Trouble is now I think what I’m left with is a combination of arthritis and blood cancer pain plus remnants of the original problem… So I’m now stuffed
Being wheelchair bound is one thing I don’t want to be and I know for long walking trips I have to go in one atm same as before and maybe it’ll always be like that who knows…
Maybe I’ll never give up the crutches I think I’m ok with that I feel safer having 1 around the house as there are times when I’m unsteady for what apears no reason. My exercises are improving slowly I can now raise my backside off the bed which is a massive improvement for me since the first time I tried that exercise a few years ago I’ve not been able to do it so I’m proud of myself for achieving that one… And the others I’m starting to do more of them…
Sounds like your the same as me and coffee… Something I can’t give up something I’m told to go onto decaffeinated after a certain time which I argue against now as i would just be asleep if I did
Oh you should try it with a bit of squirty cream and some marsh mallows as a treat… When we go to Costa it’s what dave has as a treat…
I would have it too but milk makes me bloated so I try to avoid it…
I hate being out of control it is the worst feeling ever… Its the one thing I’ve had to learn to live with and part of the counselling I had when I stopped working. I guess it’s why I’m trying to get it back a little now… It’s not working so I should just work a bit slower and go with the flow a bit more
Happy Thursday
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Hi @Ells going with the flow and actually realising every small ‘step’ is progress.
Getting dressed today was progress.
Raising your backside off the bed is a really massive improvement which, yes, you really should be so proud of.
If the exercises were easy they would not be worth doing and would not be doing you any good.
I find pain is so debilitating, we are here to support you getting unstuffed, but it is going to take time.
Actually milk, cream, even the squirty cream, has never settled well with me.
Sprinkles are my weakness.
Keep posting and baby steps every day and yes, it might be 2 steps forward and one back, but that is progress.
It’s early days and you really are doing so, so well.
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You need to read your whole post back - it is telling you to slow down! I know it’s really frustrating for you - I would be the same but you have to take it slowly, promise? X
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Hi @Erica @Nichola75
Getting dressed was progress yesterday but not today its another pj day today… Q and only done a bowl of washing up so far today but mind you there no washing to do today so that’s a good thing for me… Oh yes the backside thing I am so proud of even if it was only a small amount it’s something I’ve not been able to do until now
It’s aweful feeling so debilitated my pain in my back doesn’t feel any better than it did before the op but it must be as I’m not taking naproxin for the time being but it is the medication that could be helping my arthritis which is frustrating as I have to wait 6.month before I can take it again 
Early days you are so right it just feels like forever since I had the op but its only just coming up for 4 weeks… No change in my progress with my chores… I need to work on bending with my knees not leaning forward.
I know i need to slow down I’m frustrating myself by sitting not getting things done but knowing I can’t do them even if I try to… It’s a case of a little then sit/lay on the bed for ages before I can attempt anything else… I did have an early night last night. Well I say early. It was early for me 11. 30 not sure what time I woke but I ended up napping on the loo for a bit which is something I’ve taken to doing it seems to be a hobby of mine docs won’t change my meds so I just drop off in places and the loo is a favorite one in the middle of the night…
Anyways this week I have been trying to look into ways of helping myself as mum says I need to plan things more plus I know I’m stuck with the blood cancer and the arthritis so I’m doing some proper research on both so I can find ways to help myself more and make my life easier. I’ve just purchased a book on arthritis which aparently tells me everything I need to know including the right foods to eat… I’ve also bought some more gadgets to help me this house is just going to be full of them by the time I’ve finished but my life will hopefully be easier and less painful or at least that’s the plan 
Happy Friday everyone 
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Did someone say gadgets???
Please share what you’ve got…
Glad to hear you sounding like you’re looking forward and planning and getting organised cleans the mind and sight.
I can imagine when you’ve spend time looking after and being responsible for others, you neglect and forget yourself, particular when you’re younger and it’s seem granted you didn’t need too as you had parents and elders etc doing that for you.
I find comfort in doing things that don’t involve everyday people… If that makes sense… I mean people that are physically involved with me… I like to do something that’s mine only with people I only know…
Explains why I keep popping up on here a lot… It’s escapism but still reality
I’m babbling…
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