cant sleep. Been a bad day for me. Jill temp been ok. They,ve changed there mind lots of times but latest is there going to keep line in even though there was an infection. 2 more days in hospital then home. God meant to be moving mon. Jill has cardio check on tues and over night stay on thurs to make sure the Herceptin dont finish her off. Any way i prob not going to cheer any of you up and i think this really should be my last post here. Wether it will or not i dont know but i,m not sure coming on here is helping me now and any body else who,s going through similar.
I was getting pretty down lately with jill being back in and my mind raceing away again. In desperasion i came on here this morning early looking for a lift or insperasion or any thing. I have a very dear friend to me who is and has gone through similar problems as my jill has. Younger than us, not that makes it any easier for a lot of people in there later years but it must be easier to accept maybe your 80 yr old grandad with prostrate cancer.
She was dx few months earlier than jill and has helped me no end with her kind and loving words. I dont know why but i thought i,d have a look through her and her friends threads to see how she is doing when i began to realise things for her are not getting any better and have taken a turn for the worse. Its my worst fear for jill but it seems its more of a case of "when" with serious secondaries rather than "if". I have cried my eyes out all day. Even when i raced out of the house with my little one with an excuse to get some loo roll, just so jills older sons didn,t notice my swollen red eyes.
Right...i,ve had enough now. Icant take any more. On phone to doctor sort out blotches over my body which she tells me is stress related. Figures as i,ve had them somewhen around dx. And give me some of them happy pills that i,m so against and have managed to stay of for many years. Only ever swollowed one when i was struggling with haveing to live without my sons from a previous. Towel chucked in now. No body can really help. There is only 1 cure and that i wont know. The above mentioned dear friend has told me to talk to jill and the doctor said exactly the same but...but i think if jill has a chance of beating this or surviving it for a long time (i,m not talking a few years, i,m talking decades) then her fantastic approach to this and her possitive outlook could do it. Now me keep booing my bloody eyes out and telling her its going to come back surely cant help. Anyway she knows i get upset and i did talk to her today. I,m not sure if it made me feel better but jill wasn,t put off. She knows it can kill but she focusing on possitives. She said that i have to talk to her. We are a couple and that what couples do. She said if i dont she will finish with me. Blimey. I love her. I think next i,m going to look for some stories...true of course about people who have had a bad primary cancer but live a long time after AND people who have secondaries and also live a long time. To mt DEAR friend, i hope you know who you are. Dont worry although i am very upset, dont think its you. I looked. My thoughts are with you and i am praying that you and Jill are going to be just fine.
Love you all Lee xx
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Hi Dot and thanks
it dont really matter if no one replies. It helps just to write a message. Bit like getting it off my chest if you know what i mean. I dont always want to come on her. It often like a reminder if that makes sense. Take care Dot x
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God will it ever end this pain and suffering. Will Jill ever be back to normal. Had to take her in Mon night. Infection and temp. Cant find what it is, they think it maybe jill groshon line. May have to take it out and put new one in. Great, all through that pain and discomfort again, delays in treatment...great. Doctors say "it be fine"...yeh right. I want my old days to be shared with jill...not just next few.
I,ve not left jill before but was torn last night on what to do for best. Do i try and stay with her the night again in that grotty filthy ward with no sleep again or leave her on her own in that grotty filthy ward , and go home, care for johnny and house and get some sleep.
Went tearfully home. Thought after sleep i would prob be more use full for Jill. It is a tough misserable existence at mo. Listen to me ...manic depressive or what. Better go. Take little johnny in to see jill today. Bless you all Lee
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morning to you all.
Thanks for kind and helpful words. I think your right about getting away. I,ll talk to jill about maybe going soon after radio. She been bit up and down the last couple weeks but i think that is our fault as we craftilly skipped gsf injections on last treatment as they always made jill so uncomfortable. So i think we have learned a lesson there. Congrateulations Angie and so nice to hear from you again. I want to marry jill. Hope to one day but you know what its like....excuses,excuses. Hi Debs nice to hear from you too. Hows it all going? Thank you Horace and Steve. I said im going to do this journey with Jill and i am.
Hopefully things will get better know. Cemo over. 5 weeks of rads..ok, but it cant be as bad as cemo. I,m hopeing to do a weekend job so we have some pennies to spend on new home which has been a good distraction for us both. Needs far bit doing but i am looking forward to it. Any way. Going to pop out for a run...blow cobwebs away. Thank you all again. Speak soon
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Its me again. How are you. Are you all still out there. I am wondering how you all are. Not really been on here much. Some sad subjects on here and i still struggling. Feel a bit issolated. Need a specialist on hand to keep reassureing me. It so far has been a long road especialy for Jill. Hospital admission and a blood transfussion but we are near to finish cemo, last one tomorrow.Then its radio???? Jill has really had enough now. It has been very tough for her, and when we went to see the onc, in the middle of her treatment, he said he was supprised it has hit her so hard and many people on this regime still work (FEC-T 18 WKS).I was gob smacked.
I my self am as mixed up as usual and often ashamed of myself. I am scared of the future and struggle to block thoughts out. I find sometimes,that i,m distanceing myself from Jill. I dont want to live without her. Cant face the thought of life without her, but i,m not happy at this time. Even the excitement of moving next week has gone.
I think she is doing as well as can be expected but who knows. Its just like a waiting game to see where it has spread that so often happens. I cant talk to Jill about my worries as i dont want to bring her down with me. I,m not saying that its right or wrong but i can understand why some husbands or o/h have done a runner when this kicks off because it is hard and misserable. Maybe i,m just bit tired. May feel better tomorow. Sorry to go on.
love and my thoughts to you all, Lee
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matt the tatt...i like it
well, nearly the end of this poxy year. I hope that this year is the worst i have to endure in my life,but in my mind i know things could get worse. I too have been making plans for when jill is better and not sure if that realy is the right thing to do. Planing these things is like an escape back to normality, but then something always pop,s in to bring you back to reality.
Jill is on FEC-T a tough regime by all accounts. She is just over the worst of round 2 so should be good for xmas. One more FEC on 2 jan. then she goes onto the T of the treatment for 3 more cycles then she will have radiotherapy for a number of weeks(5 we have heard but i hope we wrong) the menapause bought on, then a year of an injection or think drip, cant remember its name but i think it can be bit dodgey as they have to keep you in for obs. first go, just to make sure it dont kill you.Then maybe reconstruction surgery.
She is pretty good at mo. She has 2 nice wigs as all her hair now gone which was harder than i thought..seeing her with no hair. Surgery is recovering ok. Movement is better but prob never be the same. Mentaly she is amazing. Better than me. I,m still same. Good days(or should i say ok days) and bad. If only you could see into the future...but would i want to see? Only if its good. No work at mo and cant see me doing any for until treatments all finished. Months yet and thats if theres any out there.
Any one been watching Jade Goody on tv. Not sure what to make of that. 40% Chance of 3 years. Hope thats wrong. Publicity hype i hope.
Merry xmas all
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please feel free to join in. More the merryer. Hope things are not to hard on you both.
Hi Angie my young friend. Its real good to hear from you again. You helped me a lot with your kind and helpful advise. So glad your doing good now. You must kick hard. Jill has been doing well in regards to recovery from surgery. She is having physio that helps. She can now lay almost pain free on her sides and i can at last spoon with her and cuddle her. Cemo is tough and she went in couple week ends ago. Cemo No.2 tomorow booo. We sorting a couple of wigs so that be something to look forward to.
Hi Matt and joe. How you both doing. I,m thinking of you both
loads love to you all
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just wanted to pop back to see how you all doing and to say a very big thank you for your help to me. Often think of you all and hope things are going as well as can be. Love to you all and thanks again
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hi matt me ole mucker hi Deb how are you
mate sorry to hear about joes problem . It is a real arse this darn disease. It will be treatable though matt so try not to let the b..gers grind you both down. Sorry i neither have been on lately for a number reasons. Like you, as i,ve said before, it is a scary reminder sometimes and when you,ve sort of put it to back of your mind, not that i can ever forget it, its the last thing i think of when i go to bed and the first thing i think of when i wake up, but sometimes you just want to keep away from anything related.
How are you both feeling.
Jill started cemo on 20th. She ok now, the best she,s been since before op, but she had it bad. I think usual side effects, sickness and generally feeling bad but last weekend had to rush her in as she had temp. Sat in A&E then a room then 2 different beds in an assessment ward. God there was some sights and sounds there. 12 hrs later we got moved to this lovely room. It was as if we were in a private hospital. She was neutropenic sepsis or while her blood count was so low she had contracted a bug and it floored her. So although it started of as a complete nightmare it ended bearable as i was able to stay with her 24 hrs a day for the 4 days. The nurseing staff were fantastic..bless them. Still home now. Cemo No. 2 on thurs ....gulp. Fingers crossed. Her hair just starting to come out too..bummer. Is there anything that is good news with this cancer. It all seems to start off bad and then its down hill from there.
Any way got to go and finish putting xmas lights up out side.
Love to you all
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sounds like you doing good. Blimey how did you do that. Its as if you,ve flicked a switch. Good for you. I,m not feeling as bad as i have. Counseling isn,t available after all. We have a Mac nurse who has been round as is very nice, but she isn,t a counselor. I prob meddle through. Gettin bit tired in house. It is a chore and well don't know how to describe it. Think i just miss the normality of work. Jill much the same. Improvement is happening but it is slow. It is a big op i keep telling myself. Just hope all is normal. Kids all ok. Johnny just started playschool so thats been nice. Had no results from bone scan so presume no news is good news. Fingers crossed. Prob tempt fate now i,ve said that.
I think my 10k was similar time to yours but i is a bit older now lol.
Glad your check up was ok. You both keep your chin up and don,t let the b**gers grind you down.
Jill cemo starts week thurs.20th gulp. O well...bring it on. She,s a tough cookie.
Anyway better peel them spuds so catch you later
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glad you had good break. It good to hear you had some time with your mum, that must have been good medicine. Jilly had groshon line fitted yesterday so she suffering a bit today. We had visit from nurses today to dress wound and flush tubes through. It all not that pleasant but jill keeps on laughing and smiling. Makes me feel ashamed of myself.
The nurse asked us questions and offered us Macmillan councilor, which surprised me as after all the phone calls i have made the best i could find meant having to drive 20+ miles which causes its own problems with time, finances, baby sitter,etc. So looks like we may get someone to come round or i go local. Am bit nervous though. Macmillan all sounds a bit serious, if you know what i mean.
As with running and the like, it wasn,t many years ago that i was entering many races to include marathon distance running, duathlons and triathlons, but as i said time and energy levels seem to deplete quite quickly these days, but always up for a challenge and a laugh. Running used to sort me out mentally quite well although it doesn,t seem to work quite so well of late.
Got to shoot off to another hospital now, plastic surgeon now, so ta for now
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you join us when ever you want. Its ladies like you who are suffering who have helped me a lot to try and get through this. This website was and is a way of trying to help myself. I really struggle with seeing my OH suffering with this god forsackeing disease. I sometimes wish i could be harder but i must be one of those cry babies and i do struggle.
take care Lee xx
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good morning matt
dont keep apologiesing for long posts. It was good.
Its Saturday yipee. Not that it makes any difference to me apart from kids getting under me feet lol.
Sorry ive been AWOL. Thought it be a good idea to decorate living room. Dont much like decorating best of times but it cheer up jill a bit. All white, and it took bl**dy 6 coates. Still it done now apart from bit glossing, and it looks good. Hate having untidy living space. Reminds me of my cluttered mind.
Hows your end my friend. Hope you had good break. Did u get up to much?
Sounds like you and me have few things in common, when you say about being negative and dwelling. I often dont like the person i am. Negative or is it being realistic, i tell myself. Its not like we are fittted with a switch that you can just flick to positive is it? How can you just alter your mind. I,m hoping that that is where the counseler comes in. I am a funny bug**r and not funny ha,ha, (do have my moments). My filosophy is this. If i dont worry about things then im being complacent and have a dont care attitude that could will that thing to happen. On the other hand if i do worry and think about things its me trying to do my bit and stop it from happening. Its a no win situation that i have to change. The worry brings me down and one day it will make me ill. Its like i just need to float off in a care free environment with the fairys. I,ll add that im not into drugs. Doctors on monday to see if he can refer me to a counselor. I have seen one before about 5 -6 years ago when my marriage broke up and i inevitably i had to leave the family home. My love for my then 2 boys, was and still is, like a mothers love for her children and to say i struggled was an understatement. Had a number of visits to counslor that didn,t really help me that much. It is time, i think, that eased the pain then and it is only resent that i felt that life was returning to a bit of a norm. Plus i think my boys are getting older (13,16) and are starting to do there own things,especially the elder. Any way, i since met my Jilly and although not planed, 3 .2 years ago had little johnny...bless, he,s lovely. Things are looking better. Head sorting itself out. Jill has put up with a long time of me struggling with sorting my head out, and she is the woman that i want to spend the rest of my life with. So things were beginning to sort themselves out until...here we are today. I,m not religious, but i,m sure like many others, a bit of an in between. Have prayed in past and quite a bit lately, but, my GOD where are you when you need him. The hole life thing makes you feel often very bitter towards god if there is one. Still as i often force myself to thing, "there is always someone worse off" . Anyway, in defence of him upstairs, we did have a lump that alerted us to see the doctor, that happened to be non cancerous, so if it was not for that, how long would jill have gone on not knowing. Maybe there is someone looking over us?
And you thought you could go on. Beat this one ha ha. I wont apologies either.
New thread sounds good idea. Do you think we will have any thing to talk about by then.lol
Dont you worry to much about housework OUCH! did you just kick me Joe? Dont forget you are working fulltime. Save yourself for when Joe is convalescing. You,ll have to do it then. Dont worry its a doddle. Lord i do miss my work but as you said, i,d worry and want to be home if i was. Got wait till Jill bit better. She getting there slowly though.
Thank you for that Brighton shop. Am quite interested in alternatives.
Any way, about time im got on. I,m not saying SORRY for long post either. Catch you later.
KIDS: 3 sons, 2 stepsons. Yes you read right
OCCUPATION:20 yrs steel erector/welder. Now HGV driver 4 yrs
HOBBIES: Fitness(running when time and energy) Allotment
LISTENING: Anything i like sound of. New and old.
READING: "ultimate weapon" just finished that one of my boys loaned. Prob "Stop thinking, start living" , next
Take care all
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Good morning Matt
How are you both
Got your email
i,ll send you mine, we can use it when needed, but i think i owe it to every body to stay on forums as (your self included) so many have helped me and what we say may help others.
Bone scan yesterday went ok. Was quite a long day as scan 3hrs after injection, but we sussed out staff and patient canteen, well more of a restaurant really. Was really nice with views out to sea, so managed to kill bit time there. Just got to pray results are ok.
Getting bit worn out now. Not getting that deep sleep that we need. If i wasn,t getting up for jill last night i was for little johnny. If im not looking after jill, it,ll be johnny or doing chores. There's no escape, but i,m not really complaining. I dont have to get up and go to work, but that is what i would rather be doing if jill was well enough. Just feel a bit stir crazy amongst other emotions. Still this is were we are so just have to get on with it.
Hey mate, i,m pleased your mum and co are visiting. Sounds like you need that, and i hope it works. You have a close family by the sounds of things, just live not so close. I,m sure they will be always there for you both even if it is a phone call away.
any way Mr Ink, I,ll catch you later. I feel a sarnie coming on.
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hope you dont mind me popping back. I often log on and see how you all doin. Thought i,d let you know how my jilly's doing. Its been up and down for me, mainly down. We have recently had visit to the onc. First one for us and he,s chucking the works at jill. I know, i can here you say, thats a positive thing. I,d rather him say , your ok now jill. Go home. 18 Weeks of cemo, radiotherapy, hormone treatment, and that drug that was head line news not long ago. Cant remember prononciation.
She still struggling with recovery after surgery. Sneezing last night, as she also suffers with hay fever, must of upset something as every breath now hurts and i think she has some swelling at pain area. No help when you need it. Do you sometimes feel your kicked out the door, which is fine if theres no probs.
Anyway, Ang. me ole fruit, how are you. Whats this about beanies. What are they? We mentally preparing our selves for Jill inevitable hair lose. What do wigs cost and what they like
. Can you wash them.
Had liver and bone scan so hope there ok. Be nice if that's tests out way.
OK that's it from me. I,ll say good bye for now. My thoughts are with you all for a speedy recovery.
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hi matt me ole tree hugger
how you doin. Hows the roller coaster ride because as the song goes "life is a rollercoaster, just got a ride it". I find myself singing that song very regular.
I know exactly what you mean about up and down all the time, and i,m sure you to find that it is more of a down than up with this blasted cancer. We have to keep kicking ourselves up the arse.
I do like a beer, and find myself downing a few to many sometimes just to get that escape but i dont let this happen very often. I know its not the answer and its expensive as no money coming in now. Nice treat sometimes though. Can understand your experience after drinking few too many and breaking down. Have been there.
Not sure how to send private message but have no problem with that or exchanging email if we can sus it.
I think you will know of a campsite local to you that me and jill have many fond memories of that make me laugh now just thinking about it,ie. we set off one friday to southern leisure, Chichester, with jill on back of bike with a rucksack on her back ,that being only 5'' 1', was bigger than her. How she stayed on the back i dont know....blo**y laugh. I know Pagham a bit to.
Had to see the Oncologist for first time on Mon. What a lovely day...not. Left early as its a real nightmare to park at Brighton hospital. Nothing unusual to que for 1 hour plus. Anyway, we drive straight in car park and end up sitting in waiting room at 10.15 for a 11.30 appointment. Bear in mind that jill is still suffering from major surgery. Anyway we last on list and eventually get seen at 13.45. I know that theres not much you can do about it and it cant be helped but,my god, dont they b**ody think jill is and has suffered enough. I was blo**y fuming. Just not fair. Doc was ok and he didn,t really give me any suprises. There chucking the full works at Jill so that be something to look forward too. Doom and gloom. Jill calls me her "Eeyore" If you,ve watched Winnie poo you,ll know what i mean. Hence i must get myself sorted. Not want to bring Jill down with me.
Got bone scan tomorrow.YIPEE.
Bye for now
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Bless you all
there's so many kind and supportive people out there and you are really helping me. I hear what your saying about getting help but at the moment i am not working so i find it helps to try keep busy. Jill gets exhausted going out and it can really knock her off her feet so cant do to many outings just yet. Anxiously waiting for that recovery. Cemo,s a bit of unknown territory so may need help then. Anyway my friends, i think it about time i joined my princess in the old pit as gettin bit tired now. Bless her. She all propped up and supported here there and everywhere with pillows and the like. Life can be a real bitch sometimes but she still laughs and jokes.
Hears to healthy futures
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hi Matt and Becks and thanks
hope your better now becks
hows you Matt. Sorry not logged on for while. It sort of had that haunted feel about going back here as my head was all over place at time and it bought back memories if that makes any sense. Feel that i owe it to you and others as well so here i am. Think i am bit better. Jill straightens me out. She so strong and possitive and i know now thats how you have to be. I am sure i dont need to explain to you. Been sleeping better but still not what i,d call a good nights sleep but at least i dont have to get up and go to work. Tell you what though, its no holiday camp having to do all house work, feed and look after 3 kids as well as my princess.
Got go see Oncolgist on 13th gulp. I,m praying for no sh*t news. We know cemo on cards so thats bad enough.
I love bikes and tats and i,m only in East Sussex so might have take you up on tat,lol . Bless ya.
Hope you have cool night at the theatre, should be good. Let me know what it like and what you saw.
Think i,ll prob have conseling. How did you find it for you.
Any way peace to you ole tree hugger and keep your chin up
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Thanks Helen and hello all
Have managed to slip into a bit of a normal sleep pattern. Think its just sheer exhaustion. Havent gone to any mad parties or out on bike for a blast yet as poor jill still not to good.She so tired and really cant do to much. We lethargically dragged ourselves to hospital today for Liver scan. Dear god my heart was in my mouth. Asked the nice scan lady if she can tell any abnormalities rather than just taking pictures to doc. She said she can and would get results straight away. Heart beating real fast now and neck felt like it going to explode. Whats that black bit, whats that lump i was asking myself. Thank god she said every thing looked ok.
Think i made a mistake of looking again at the pathology reports. Want to understand what we dealing with, but it sure didn,t help. Am going to prob get counseling or talk to nurse. On a positive note am going to go for the cancer may be bad and extensive in jills breasts, but there gone now so thats that until someone tells us different,gulp.
Prob sign in tomorrow AM as struggling to concentrate as little one about.
Love to you all
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