Its 6 pm friday evening and as i sit here listening to my husband sleeping and being greatful that he is still here i wandered about you guys and how you were all doing and thought i bet some if not all could do with a hug
I know everyone is going through some worry or sickness of some stage or even the loss of a loved one from this illness on here so i thought i would send you all my love and hugs to you all.
I know its not easy living with someone with such terrible illnesses
, I can imagine its hard trying to cope with transplants and recovery.
I cant begin to imagine how hard it is for someone to suffer such sickness.
I cant imagine what its like to loose a loved one through this.
But one thing i do know for sure is that every person on here needs a hug.
So heres lots of big cwtches( hugs in wales) from me to you all.
38 Replies
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I would love ❤ this to be sent to a very special lady I met on this forum amongst others CATFISH and what a lovely post you have put up. .....Maria x
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love catfish she is lovely :0 as are you also maria
That's so you lyn .. Thoughfull and caring as ever , I took send cwtches to you and hubby .. To everyone on this group who is in need of a hug , catfish is lovely and sherri44 , louisepeters , Chris , infact there's so many I don't remember all the names , Speakinjacqui , Anne and sue .. It's tough living with this illnes but eaqually the same for family and carers . Having a tough day today so thank you for this my lovely friend ❤️❤️.. X Linda X
ty millie.Yeah i agree there are so many on here that are amazing, too many to name thats why i said all,.
Yvw . Hope things inprove and thankyou also for your cwtches for us both.
Its lonely here most of the time, with hubby spending many many hours sleeping so i know i can come on here and talk to people,and it helps alot, i mean i would talk to myself but i usually get caught and the men in white jackets are on their way..lol sorry just my sense of humor.
Thank you Lyn . Yes I agree with you , many lovely people on here . Aww . I know hubby sleeps a lot Hun , but it's just one of them Things . It's the illness as you know . Buy you still have him there with you . Oh you want to see me talking to my cats lol .. Then I would be sectioned by the men in white coats that's for sure ! My only company I have living on my own . Thank god for sky tv ! If only I could sleep .. Might make me feel human again ☹️.. You chat away on here if it helps .. Linda X
Thank you jaqui .. Just can't work out what's wrong . But I do know I am not myself . Struggling to even move today . So drained , tired , very cold . Insomnia don't help either . Hope you and mum are ok .. (( hugs )) and love to you too ❤️❤️.. Linda X
Aw Linda if it makes you feel any better (not physically but knowing you're not alone) I'm feeling the same today...so drained, no energy, feel rotten 😒 Haven't moved off the sofa all day. Like you, struggling with sleep (I think a lot of the problem) hate the cold and it's just been a really stressful week, don't remember feeling this crap ever 😒
I've been between 2 houses all week and last night it just seemed to hit me, finally caught up. My mums second chemo today and she's doing good. Had her here all last night pampering her and it really changed her mood. Then today the good news, the blood tests show the injections have worked really well and she's been given 3 nights off them by oncology...so a) I must've got them in the right place and b) I get 3 nights off doing them...what a result, a bit of good news 😀
Let's hope we maybe sleep tonight, we can only hope.
Thank you jacqui , it's so unlike me . I have been tired in the past if I have been busy but I have not don't a thing apart from Chasing my doctor , buying Xmas gifts on line and my new kitten running round like a cat posssed 😼. Bless , it has been a stressful week for you both , I did that for over a year , I lost so much weight and my sleeping then changed at that point as I use to sit up with him till the early hours when he couldn't sleep
Omg ! That's wonderful news !! I'm so so pleased for you both .. Just brilliant ! 😊. You can both relax for a while now , I will say a little prayer for you both . Well I doubt it very much I will sleep , I Never do . That could well be the main reason I am feeling how I am ? But I'm still pushing for the tests to Be done . My doc actually contacted me today and has said he wants to see me... At last 🙁.. I hope you get a well deserved good nights sleep and Thank you sweet lady for caring ❤️❤️.., lv to you too .. Linda X
Oh Millie I'm glad your doctor has finally contacted you, I hope you can get things sorted now. There's nothing worse than waiting and worrying.
Oh the weight loss, tell me about it 😒 I've been having to go back and forth to my GP to get weighed for a couple of months now. I've gone from a healthy size 10 to a size 6 in 3 months. I know some of it is my meds because they make me feel sick and tired but since my mum was diagnosed omg I've lost loads more 😒 I went out and bought some new jeans, had to go down to an 8 and now they're too big so had to go down a size again. I have felt really stressed tho about my mum and that flares my condition up, have to take more meds and so the vicious cycle continues. Sometimes feels never ending doesn't it. Thinking of you and good luck when you see your GP. Love, Jacqui ❤️ xx
Hi jacqui , thank you , yes my appointment was confirmed this morning , Friday At 4.15 pm . Can't wait to get stuck in and tell him what needs to be done and my insomnia . Just not with it . Had another 3 hours last night maybe just over , I wake up as if I have a hangover?? Bloody awful . Lasts all day too Regarding your weight loss well it could be down to many things and I only know too well that I lost an awful lot of Weight caring for dad , even though I was still eating ok , many connected on how poorly I looked , I could notice it in my face , so drawn and very pale . My size 8 jeans were hanging off me , you will no doubt gain it all again , just glad that the doctor is keeping a close eye on you . I lost weight last year , due to wanting to be slimmer , not a good idea . I lost over a stone and a half . Down to 7st 4 and I'm 5ft 4 . Well since my home move 8 weeks ago I have actually gained weight . I am 7 stone 9 and look so much fuller in the face . I do have a low salt diet and I do eat a lot of gluten free out of choice . It's a catch 22 situation isn't it jacqui , I'm sure it will settle down again. Just as mine did . Hoping both you and mum are well today ❤️.. Best wishes .. Lv and (( hugs )) .. Linda X
Oh that's great news Linda, make sure you write all your concerns/symptoms down, if you're anything like me you leave and remember stuff you forgot to mention!
I know, my face looks so drawn, it's horrible isn't it...makes you look ill. I certainly don't look as healthy as I did in September and I'd already lost a lot then. I know a lot of it is stress and my body not coping so well with being out more, this neuro disorder plays havoc with stress, change in routine and the cold. I'll have to keep an eye on it..I don't use scales at home! It's my GP that goes on about it. Hoping you're feeling a little better today and relieved you've finally got your appointment.
Yes , it is Just annoying I have to wait until Friday , I will phone Monday to see if there are any cancellations , and will do everyday just incase . Good idea jacqui ! I have a long list , and he has still not answered my question regarding milk thistle 🙄. Well we don't really notice how much Weight we do actually lose untill. Others start noticing , then suddenly we do , it's a lot to do with the added stress , but even after dad passed away I never gained any weight then either , as my body was still in high anxiety alert , I had Become so anxious 24/7 with dad that my body did not know how to Cope with bringing down that pressure cooker I had built up, that's where the anxiety had stemmed from and still have it now . I understand that your health dies not help either , are you eating ok ? And I mean proper nutrient meals . I wasn't as I did not have the time , so it was a snack here and there , loads of coffee and I smoked like a trouper ( not any more now ) .. You could ask the dr to put you on fortisip and fortijuice . They are full of nutrients that the body needs when we are struggling . Just a thought , as they did help me . Just keep an eye on things . I was happy I had lost weight at first ! But did not like the skin that was left hanging , it's still never been the same since . Hope you get things sorted , I'm sure you will . Hope mum is ok ? .. Love and (( hugs )) 💕💕.. Linda X
Thanks Linda, I do eat really healthy food, all home made as I love cooking but this is the evening meal. Unfortunately, my medication affects my appetite, was ok until pain clinic changed to a stronger pain med and I think that is part of the problem, also the loss of my dad didn't help and now obv my mum. I'm going to see my GP next week as can't lose any more. GP told me to eat whatever I fancy, cake, choc, anything. So I'm on bananas and coffee & walnut cake! I've always had a small frame but I'm fed up of other people telling me I've lost weight..like I don't know! I have struggled with looking after my mum so it all takes its toll doesn't it. I try to write things down before I see my GP because I always forget something if I don't 😉 There's no harm in ringing to see if you can get an earlier appt, you never know, they do get cancellations. Not long now...just try to keep going as best you can and push for action when you do get there.
Hi jacqui , how are things with you and mum today , it's Sunday roast day 😊. I too eat healthy , but I do allow myself a curry on a Saturday with brown gluten free rice . So I sort of keep it as healthy as I can , my only downfall now is my terrible terrible sweet tooth 🙁. Chocolate .. I mean it is 60% less sugar but I do worry that this may be causing me more harm than good with the liver , as I'm not sure if daily sugar allowances are maybe on the list of do"s and donts . When I was sent home in 2008 after my diagnosis , I was just 6 stone if that . I had a nutritionist I had to see at the hospital along with my gastro consultant , they told me the same as you Hun , to eat anything at anytime that I wanted , they did with dad too as his eating completely changed , he ate things he never used to , craving sweets and ice cream bless him . Yes I bet the meds you are on are playing havoc with your eating , all you can do is carry on eating as much as you can , ooh njce ! Walnut cake . Not had that in ages , do like my fruit and bananas though , oh and I now drink decaf black coffe ☺️. Never used to untill I joined this site . I know how. Stressful things can be , you have and are going through a lot of emotions which in itself will up your anxiety then that Makes your appetite go and physical symptom can occur too . Yes I have started my list for the doctor and no , there is no harm in calling them at all , nothing to lose , but Friday will soon be here and I have oral surgery Saturday at hospital to remove wisdom teeth 😁. Not looking forward to that , anxiety is bad where dentist at concerned also the doc won't sedate me due to Cirrosis ... Oh I will make sure I get Everything I want ! Don't worry about that . Well have a lovely Sunday Hun , don't worry too much about the weight loss I have every faith it will be better soon (( hugs )) and love 💕💕
Thank you Millie, yep roast dinner day, ready in an hour 😀 I do love my Sunday roast, can't manage to eat as much as I used to but pack as much in as possible! Omg 6st....blimey I've never dropped that low, you must've been skin and bone 😒 I only managed 3 hours sleep due to pain, so was on the walnut cake at 6 this morning....oh well, I was told anything you fancy just eat it!
Blimey I have a chronic fear of the dentist as well, flipping hate it. My wisdom tooth came loose at the beginning of the year and I suffered it until April when I couldn't stand it any longer so had to go and have it out. I dislike the hygienist more tho, they're butchers 😂
Not long now and you'll be at the doctors hopefully with some answers. Fingers crossed.
My mums not feeling too great, the side effects from the chemo have started after her second cycle 😒 She did really well after round one but gone back to severe anxiety again yesterday, doesn't like being on her own, can't blame her for that, don't think I'd want to be alone after all those drugs being pumped into you. Anyway she's here for the afternoon and evening and if she wants me to stay with her tonight I will, or she can stay here. Tom's at uni so there's a spare room with a double bed. She doesn't have to ever be alone.
Hi jaqui , how was Sunday lunch . Good I hope . Oh I can eat till the cows come home lol , I have put on 3lb in a week , mind you I needed that bit extra . Oh trust me I have a major fear of dentist , that's why I have to go to hospital to have the work done but also because of the clotting of the blood . Ouch 😖. Hygienist is even worse ! I can feel it now as I message you . No not long now till Drs , never rang today as I had other things to catch up . Yesterday I was busy too . Aww . How's mum today ? Any better ? Yes the more chemo seasons they have then that's where the effects begin to hit them . I'm sure mum will be fine Hun . You have Both coped fantastic ! I always knew you would . 😊. I never left my dad at night . No way would I ever leave him . My mind would have never stopped worrying if I had done . Yes keep me posted Hun , and I will likewise .. Take care both .. Keep smiling . Love and (( hugs )) ❤️ Linda X
Sorry for the late reply Linda, had a bit of an off day today 😒 Just feeling a little tired and run down, I suppose all normal feelings really...you cope and show as much strength as possible when you have to but it takes its toll at some point. My mum enjoyed yesterday, brings her slippers, takes over the remote control and really enjoyed her meal. Bless her, the company makes a huge difference to her state of mind, I can see the anxiety literally disappear. It was back to injections tonight after being given 3 nights off them by oncology...I hate doing them because it makes it all so real. Thanks for believing in my ability to cope Hun when I doubted myself. I'm proud of my mum, she's doing really well considering it was such a shock and her treatment starting so quickly.
Glad you've put some weight on..my turn now! If only I could just get a few pounds back that'd be great!
Not long til the doctors now, I do hope you get a positive outcome and some much needed answers to put your mind at rest.
I feel for you with the wisdom teeth, hopefully you'll be ok, I have to say I was in so much pain with mine it was just a relief to get rid of the damn thing and the worry was worse than having it done! Isn't that always the bloody same tho!!
Sending love and big ((( cwtches ))) to you lovely lady. Hope hubby is at least peaceful.
Thinking of you xxxx
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Yes he is peaceful, he got up just now 11,05 pm to go to the bathroom, and climbed back into bed..Thats unusual for him because he usually stays up when its this late if he is awake.
Awe linda and jacqui,, So linda you talking to the cats? ha ha going to call you the crazy cat lady. Jacqui im so pleased to hear about your mum,, so lovely to hear good news..
I am already called the crazy cat lady by my family lol . Yes it's great news about jaquies mum , well maybe hubby will sleep then through the night so you get a good sleep too , as you can see wide awake and kitty is driving me mad , my poor sofa and curtains 😫. Gosh how I need sleep .
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Thanks Lyn you're a sweetheart, it did give my mum a boost, now just hoping not too many effects from her second chemo, can only hope.
So, you talk to yourself (white coat man coming) Millie is now the crazy cat lady along with sheri and Anne!!! And I've already got the label crazy dog lady...the worst behaved 3 little pooches going 😂 The white coat man has been and gone...decided there was no hope lol 😂 xxxx
we are labeled the crazy cat lady now. I don't mind 😂 it's true for me now we have the crazy dog lady ❤ xxxxx
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ha ha @no hope,love it,,,hows your mum doing jacqui?
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It's true Lyn...the bleeding little rascals chased him away. I have one that escapes through the trellis into next door then under their gate if I let him out for a DooDa! I get people knocking at my door bringing him back, takes himself off for a bloody walk ...so yeah mad dog lady of Caversham 😂 My mum had a really upset tummy yesterday after her second chemo cycle and just really fatigued. She's a very attractive lady, really classy, always looks lovely, takes great pride in her appearance (esp her hair, she always says its every woman's crowning glory) I'm blow drying it and dreading the day I wash it and it starts falling out which sadly is due anytime now according to oncology. I know that will really hit her hard and my heart is breaking for her esp as I've kept it looking so beautiful for 35 years. Dreading it 😢 The plus side from Friday was she got 3 nights off the injections I've been giving her as her platelet count was so good. So we start again tomorrow night. She was v positive on Friday after her blood results but the effects of the second cycle are kicking in now and I'm scared. I can't change it, I'd give anything to make her better but I'm powerless over this. Life's cruel sometimes isn't it? She's coming to me today so pamper session it will be..I still have all my stuff from the salon so I'll do her nails, I'll do anything that boosts her. Thank you for being so caring, you're a sweetheart 💞 an Earth Angel 😇 Hope you're doing ok? How's hubby been...you're always in my thoughts, wish I could do more for you. Love and cwtches to you 💞💖💞 xxx
Lyn66. Beautiful post. Thankyou. Sending you love n hugs back. Oh hubby as well. So many wonderful people on here. Beautiful inside n out. I slept so much before my transplant now it's the opposite 😕. Talking about talking to cats ( muddled myself then lol) I do it all the time. 3 cats n a dog to converse with seeing as the kids don't wanna. Anyway they will listen to me the kids don't !!! and they don't answer bk. Usually fall asleep on me so must be boring.
anyway Lynn66 you chat away. Nothing i like better ❤ xx
Aaah ! Catfish, Sheri44, Milli09, Lyn66,Reading-Jacqui, Maria - just to mention a few. Would like to give huge hug as well. Such brave and caring people. No selfishness. Those of you having a bad time at the moment - just try and think positive no matter how hard it is. Easy to say. I must admit I feel great at the moment, which is very seldom and even then I wonder WHY !?!? It has been years of feeling very bad on most days, but not wanting to moan as the gratefulness of still being alive makes me feel I must live with these bad days !!! But when it hits you it really hits you. I feel for you all ! Amazing how sites like this can change your way of thinking. Although here again - I have been a bit confused as to what it good und bad. Everyone reacts different to certain things. What helps one of us may mean poison for another. HAVE A GOOD WEEKEND EVERYONE. "Always look on the bright side of life " - this song my dear mum had played at her funeral. She passed away 4 months after my transplant, neglecting her own health and worrying about me. This shall give me a feeling of guilt for ever more.
You should never feel guilty about your mum passing away 4 months after your transplant, im sure it wasnt that that killed your mum, look how many people care and look after loved ones in the same situation and yet they are living healthy lives. The way things have been with hubby lately if it had been the case i should have died because he has put me under so much stress,tiredness through lack of sleep etc...
His new thing now is rejection, i wont go into details but i guess its obvious what i mean but i keep thinking about my vows for better or worse and i meant every word when i said my vows, so you shouldnt feel guilty..
Sending you loads of hugs...
Lyn.
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Oh Lyn, wish there was a magic wand to make things better. You are an angel 😇 xxx
Aw Louise what a beautiful, kind and caring messsge.
You're so right, we must always try to stay positive, even during the darkest days, however hard that is. Each and every day is a blessing that we must be grateful for.
I'm glad you're feeling good...don't question it, embrace it and enjoy. Your dear mum would want nothing more, I'm sure, than to know you are doing well. She'll always be with you in spirit and wouldn't want you blaming yourself or suffering guilt, a mums love is unconditional, she did what she did because that's what mums do.
Oh Reading-Jacqui and Lyn ! You too are both so caring. The tears are really running now. Must be this sentimental remembrance day. I just had to go to the shops and everything stopped for 2 mins. dead on 11 0'clock and we all stood still. Really moving. The shop had the radio on and there was just 2 mins of birds singing. So moving. Well with my mum, I do thank you for trying to console me. But she had skin cancer and when she heard about my liver cancer, she neglected all appointments and came out to Germany to be with me. I was living there at the time. I didn't realise how bad it was as she had already had to successful removals on leg and nose. I thought she just had to go for "post" check ups. That wasn't the fact - the cancer had spread to her whole body and I was not told. Being not able to travel for a year after the transplantation, I could not even come over to England for the funeral. But in August when her ashes were spread on the 1st anniversary of my DAD's death, I was determined to be there for her LAST journey. I came over without approval of the doctors and did actually collapse after the service when I saw the ashes being spread. I was in hospital for a week with suspected heart attack. Fortunately the doctors didn't "tell me off" so to say, that I decided to travel after all - they were really good to me. But you see, if I hadn't have been ill in the first place - she might still be alive. She was always active and lively and I thought she would live to over 100. Sorry this was such a story, but it is good to SHARE !!!! You are all such lovely people in this forum and I can only carry on by saying STAY STRONG, LIVE THE BEST YOU CAN and never go a day without laughing at least once - VERY HEALTHY.
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Hope things inprove and thankyou also for your cwtches for us both.
Up Date on husband.
You guys must be sick of hearin from me.hope not though.Its nice knowing i can share on hubbys process.
