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48 REPLIES 48
debsincornwall
Member

Re: help

Hi,
well, with luck by now Jill will be home and you should have moved home and you will be feeling a lot better.
This disease doesn't only take it out of the the sufferer it's effects bounce off all those involved.
Good luck in your new home.
Love Debsxxx

siggo
Member

Re: help

hi all
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

Weetricia1
Member

Re: help

Hi Lee,
I've just been reading this thread for the first time.I think you seem to be doing a great job.I too have a fabulous hubby who has looked after me for the last year.We have four sons(31,24,20 & 16)who have also been terrific.My mum has been more concerned about hubby as she was a carer for my dad for the 4 years he suffered from cancer and has been giving him moral support.
I've had two lots of surgery,chemo and rads and have managed to return to work,so all the hard work is worth it.The only thing no one does for me is the ironing,so Jill is a lucky lady! Just as well they can all cook and clean or I'd have to turf em out!
Take care
Tricia

siggo
Member

Re: help

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

dotchas
Member

Re: help

Hi Lee,

Sorry to see no-one has answered your post,some just seem to get lost on the new format.
Sorry to hear that Jill is in hospital,it must be very hard ,but you need to look after yourself too.I will cross my fingers that they get it all under control and your beloved Jill will be home with you.
The love you have for her shines through your posts.
Take care,
Dot
(((((((((hugs))))))))))

siggo
Member

Re: help

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

siggo
Member

Re: help

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
Lee xxx

eskimosailor
Member

Re: help

Hi Lee
Sorry I have only just seen all your posts. What a lovely caring bloke you seem to be. It's a long time now since my wife was diagnosed, and I have spoken to many other partners of sufferers since then. Some don't seem to care much at all.
Do your best to let her take control of what you do together. That may help her a lot if she feels she is in control of her life once more.
Have you asked BCC if you can talk to a Partner Volunteer, there are still a few of us around, and they will try to match you to someone who has had similar experiences to you? Just ring the helpline number and ask to be put in touch.
Many health professionals say quite odd things. My wife was told by her surgeon that he had never heard of adverse reactions to Tamoxifen, but we now know they do happen. Mostly I think they are trying to be reassuring, but do remember, they have not been there themselves, or very rarely.
All the very best to you both and lots of love.
Steve

horace
Member

Re: help

That last point is excellent!I actually expected to feel fine 3 weeks after chem or at least after rads but it was quite slow.If you can book a lovely weekend or short break for about 8 weeks after treatment has finished-nothing too strenuous!We went to Northumberland and pottered about and looked at the sea.Good Luck to both of you-nearly there now.Vx

vertangie
Member

Re: help

Heya Lee.

Well by the time you read this hopefully the last dose will be done and you'll both be feeling a bit more positive about the future (of course the present has to be endured first 😞

Have you ever noticed when you go for a long walk your feet ache just before you get back. I swear getting to the end of chemo does the same thing you just feel like you can't quite take those final steps, but you do somehow.

It sounds to me like you need a break together, a little away time out of the norm. I doubt either of you feel like it right now but it can be sometimes be as much fun to plan the trip as to do it. But I really think you need to be with each other not in the same room as the dam elephant with the huge sign saying "cancer" around it's neck. Talk to each other and evict the elephant.

Sorry feeling a little feisty today. me and my OH are getting married in 3 weeks and going up to Scotland and going to see whales and dolphins in the wild.

I hope the next 3 weeks are bearable for you and Jill and please tell her that she may not feel instantly better at the end of the 3 weeks but make a note at the end of each week of just how much she's improved at the end of the week because sometimes you don't realise how much progress you are making.

horace
Member

Re: help

Dear Lee my lovely husband carried my spirit up a metaphorical Everest when I was bald,wheelchair bound,breathless and bleeding from the nose after 20 weeks of FEC-T.I will always be grateful for all that devotion from my dear man[70 when I was dx].But at the time I was withdrawn and in a very dark place.He never faltered.One day when this is over you will be able to look back,both of you and know that you Lee were able to offer support and love when it was needed most.We hear a lot of those men who walk away well I want to salute those like you and my Tom who hang in and carry us through.Thank you Vx

debsincornwall
Member

Re: help

Hi Lee,
sorry you feel as you do but I promise none of us on here going through this sh.t disease blame you or fail to understand how you are feeling. The pressure on husband wife, partner, parent, sister, child or whoever else is having to deal with this illness is unbelievable and can be at times unbearable.
Some people are able to work through chemo others get through it without needing blood transfusions others die! What was the point that your oncologist was making? Maybe he just wanted to let you know that some oncs are top of their game while others have not a clue.
Last chemo tomorrow and moving to a new home, sounds like a little celebration is in order. It doesn't have to be expensive a takeaway and a dvd can be more than enough with a bunch of daffs and a bottle of fine wine!
Enjoy and good luck.
Love Debsxxx

siggo
Member

Re: help

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

siggo
Member

Re: help

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
Lee xxx

Jacksy
Member

Re: help

Hi Lee,
Glad you're sleeping a bit better and liver scan sounds all clear. I think some help in the house sounds good - as Gillian says, people really want to help and to give them something specific to do helps them to know how to help. Make sure someone else has the job of organising it too, or you'll spend loads of energy contacting people to talk days/times. Things people did for me which i found helpful (when going through chemo) was people bringing meals round, doing an hour of ironing, or taking all the sheets/bedding to wash, dry and iron and return all neatly folded. Also help with ferrying the kids to clubs etc once in a while (wouldn't want that all the time as kids needed us around). Not sure what age yours are?
Hang in there. You're doing a great job supporting Jill. Love to you both
Jacquie x

curtainqueen
Member

Re: help

HI Lee,
I have been looking through your thread and just thoiught I would say Hi.

Try not to worry (!!!) about all the tests? I have had every scan going one very part of my body as there were lots of "suspicious" bits, all came back clear.

Regards to recovery with the surgery, try not to be downhearted. I was getting very frustrated as it seemed to take so long to feel better, then one day it all kind of freed up and got moving again. I think the body has it's own way of telling you when it is ready to get going. I fought shy of doing as much as the physio told me I should as it just didn't feel ready. Little and often is the key I think.

Is there any way you can get some help at home? You all have enough to worry about right now. I decided to get a cleaner in for a few hours a week while I am going through treatment (had 2 x surgery now half way through chemo). Most friends really want to help but don't know how...maybe you could rally some mates round to do a bit of ironing/making soup/cleaning. Even if it's just to give you and Jill some time together to do nice things.

It is a horrible, stressfull time for you just now. Speaking personally I know that the love of my OH has helped me no end so far. The reassurance that the physical difference in my body doesn't matter has been the biggest help. Not sure if I could love my fat, bald and scarred body as much as he does!

So good luck to you both, stay strong and look forward to 6 months time, when treatement may be done and you can get on with sharing many many many happy years together when this will be a dim and distant memory for you?

Wishing you (and all who read this)... live long and prosper!
Gillian

mazaroo
Member

Re: help

Hi Lee ....just wanted to pop in see how you doing ??
Love to you all xxxx
Mazxx

siggo
Member

Re: help

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
Lee

Fletchjet
Member

Re: help

Hi
No post from you this morning - either you've got back in the sleeping habit, you've drowned under the sea of ironing or you are having some quality time with the family - hopefully my last guess in right.

Good to hear there is at least another man on here that cares for his OH - you are a growing band of men - good to hear your comments and hopefully we can provide help support and insight into some of the things your OHs are going through

Take Care
Helen

ForumMember
Member

Re: help

Its strange, the waiting, and must be very different for everyone, all the time i had an appointment to wait for, i felt like i had something to focus on and didnt get to down, chemo especially gave me a monthly routine that kept us focused, and not alot of time to think, as caring for my jo, was my main focus, thanks for the message lee. will try and keep in touch.

the nuclear scan is ok, here in chichester and portsmouth the teams are pretty nice, and the ladies there we great, I must say like you, my wifes strength made me feel not strong enough, but as she said, we all deal with things in different ways.

As my counceller said, if you focus on the negatives, then it can be a down ward spiral, I am not saying dont think about them, but the positive do far out weigh the negs. and we will just waste time if we get too down. easier said than done, but with practice and awareness, we can do it.

I dont mean to sound hippy dippy, but there is a book called "buddhism plain and Simple" its about being awake in the here and now, and appreciate today. for us all its easier said than done, but the book definatley served as a second counciler. anything is worth a shot.

For some reason, I woke very early today, feel ok, and a little confused as to why it happened but hey, thats the emotions of the issues i suppose. everyday is getting better, and we will all becom stronger for it.

As hard as it is, i would say, relax as much as you can until the 17th. and enjoy yourselves.

Thinking of all us, and as my dad says, "sending you strength and courage, be strong"

Peace

siggo
Member

Re: help

hi all
hope you all ok
think iron be bit heavy for jill at mo julia, but jill has read now so she taking in all your advice.
Brains been on overtime again. Keep thinking about further test and bit concered about the amount of jill,s node involvment. Dont know if it best to expect worse or just try not think about it. How fast does this stuff travel. Wondering in delay of treatment as original dx was DCIS only. Dont know if i want the answers. You know what i mean.
Whats all this bl**dy nuclear stuff with jills bone scan..gulp..We now have date for this test..17th. If i,m right in saying that our next wed. appointment with onc is to discuss jills treatment regarding cemo,. how do they know what to give her until they,ve seen results. Bit confused but nothing new there.
Anyway Love to you all and hi Mat if your out there. Thinking of you and your family xxx

carrieann
Member

Re: help

Hi: Have just read all the way thru this and you are obviously making progress and are a fabulous OH! No I'm not being patronising. It is hard for OH's - mines been brilliant but had a hard time early one when my stress levels were astronomic - I lost 10lbs in three weeks before op - unfortunately it has come back! I had lump removed and 24 lymph nodes, one cancerous, but my cancer was caught very early and was small although grade 3 - pretty aggressive.

I was DX in Feb, op in March, started chemo in May, will be finished 25 Nov - champers and fireworks that night! If you look on the chemo treatment section you will see me on there. But I have been exceptionally lucky with after effects of op (just some fluid retention that had to be drained) and side effects of chemo - apart from losing the hair but have two great wigs by Raquel Welch. I just keep praying that the last two lots of chemo will be OK but I never take it for granted. As I am a bit of a control freak, I was determined to carry on with life the way it had been and, apart from March when I had the opn, have worked all the way

Jill has had far more surgery than me and must be feeling awful but she will get better - it is the only way to go. Once you have a programme of treatment and she comes through the early scans, etc, I am sure you will see the light.

With regard to her aching arms and you doing the ironing, I was told by my BCN that ironing was very good exercise for the surgery arm!!

We all say that laughter helps - loved the trip to the dump! Keep your chin up, it will get better.

LOL

Julia

mazaroo
Member

Re: help

Lee ..cheers mate ......I will ignore the liverpool remark bet you like one of those southern girly sides like Arsenal or Chelsea???? I do so much on my own cos thats how its always been and in a strange way I prefer it xxxxxxxx love and hugs to everyone xxxxxx

siggo
Member

Re: help

hi girls.
Whats happened. Was still in bed at 6.30. Good sign i hope. Positive vibes from you all must be really paying off. I am in your debt. May be a beer down pub when we all pull through this.
I think i can understand about your pink friday October thing, but if it left to government to fund treatment i think things would be a lot worse. Enough about politics.
Jacquie my dear, whats this about worries and stress. You dont want to much of that. I,m sending you big hug. See if that helps x .
Maz, how do you do so much on your own. Dont do it alone. Let me know what your having done or where your going and i,ll be with you in this cyber thingy, if you know what i mean. Bless you....Liverpool...could be worse i suppose. Love to you all
Lee

mazaroo
Member

Re: help

Hi Lee have been popping in now and then to see where you are at ...I must say you are a wonderful supportive husband ...made me quite sad as mine is of the ostrich ..stiff upper lip dont do emotion variety ...wife had BC .... now she hasnt ! all in eleven months ....I have done everything alone hospital ,,treatments whatever as "I am such a strong and brave person and dont like a fuss"" I hear him say .I am sure that your wife Jill is fully aware of how lucky she is to have you ! we all come on here at the beginning of our long journey not knowing what we will have to face but all the ladies on here are always there to keep your spirits up ..I have made lots of dear friends on here and like to think that I have helped people as they have helped me as we will all help you .
We are all different stages of our horrible journey and learning to cope with all the c**p that this b****y disease chucks at us but we all do ,we all need a little help from time to time and I do realise that it is early days for you and yours but there is a light at the end of the tunnel ..just some peoples tunnels are longer than others
but we all know wht you are going through and it does help to "talk" on here .
Anyway getting back to Pink October .....we have a wear it pink day on Friday in work ...and I am sure that everyone will be looking and feeling sorry for that lopsided woman who has BC !!! I aint really lopsided...just joking ... had recon after my mastectomy and have a pair of little beauties lol 🙂 I will be there on Friday make up hair done ready for my public Ha ha ha !!!! it can be a bit in your face but it does raise a lot of dosh !! Anyway ..have dtoned too much ..will look forward to chatting to you again and hope that all goes well for you and Jill xxxxxxx
Just getting back to watching Liverpool .....Robbie keane has just scored his first goal yeeeeeeeeeeha
Lots of love
Maz xxx

Jacksy
Member

Re: help

Hi Lee,
I'm so glad it went okay at the hosp- sounds like they're happy with how Jill's getting on? Hope you'll sleep better tonight after the drag to the hospital - takes it out of you whether you have cancer or not! I'm doing the early waking thing at the moment too - a sign of stress and too much on your mind.
The october thing is breast cancer awareness month - everywhere you go there'll be pretty, useless little pink things for sale in aid of those brave ladies with breast cancer. Sorry, but I (and many on here) find it all a bit patronising and in-your-face, but I guess it raises a lot of money and awareness.
I found after diagnosis i couldn't get enough of cancer stories on TV etc - I think it was a way of exploring my own feelings and experiences, and helped me to come to terms with what was happening to me. But sometimes you just want to get away from it and escape into a good story without a tragic ending....
Send love and good vibes to Jill for me, and take care of yourself
love Jacquie

siggo
Member

Re: help

You definitely have a heart Angie
Today i,m very relieved to say went ok..few.
BC nurse is an angel and between her and consultant they have made me feel bit better. No bad results but i,m not gettin to excited as i know we have a hell of a road yet. Onc on 13th though i hope i,m right in thinking not to much to worry about there. I,m scared of letting my guard down and gettin to complacent and then wham have some more sh*t for your pipe. Sorry but you know what i mean.
I am now absolutely shattered and know i must sleep to night.
Hows things going with you. Whats this pink October month mag. Something i should avoid.
Catch u later
lee

vertangie
Member

Re: help

Heya Lee

So long as she keeps moving a little and trying she'll get there. the first month or2 are by far that hardest.

I know what you mean about TV. I'm a big scifi fan and love battelstar galactica. Sadly the female lead character has BC too and she was doing chemo in the script just before I started mine, nightmare... However the plot has the whole of mankind on the run so it's not like anyone else is having an easier time in it LOL.

Best not read any magazines this month... pink october has begun. gulp.

Lots of love and hopefully results will start having good news too. Just before chemo I had to have an echocardiogram and it turns out my heart beats and I do have a liver 🙂 It's not always bad news.

Angie

siggo
Member

Re: help

Morning my buddies,
its gettin earlier 4 am now? Jill wanted wee so helped her up and back but then me cogs start turning so here i am. Hospital to day and remembered jill had 2 test, blood and chest x ray last week so expect they have some crap to throw at us. Prob why cant sleep.
Had a few bottles beer yesterday afternoon. I know, its not answer but needed that little escape for while. Any way, listen to this, do you find this to:
Sat down about 4 or 5 with my princess, who was watching a film on sky, movies 24 i think. Nothing unusual there. Think tv is jill escape. Any way ,i says,"jill, this not one them bl***y films on someone dieing cancer is it? She laughed and checked on info. No, no that was ok , no mention. About two sisters journey and was getting into it as there was good bit humour in it. plus sisters where lookers, sorry forgot myself there. Anyway, you guessed it, bl***y sister was in 4 yr BC remission but bl***y died.
oh my god. You cant get away from it. Its every where. Bl***y on that ozie soap too that jill likes watch. Don,t bother jill but i struggle.
Oh well dont think i have much more to say. Whats that? Thank god.
That be my therapy for today. Might need some later when get home from hospital if your about.
Thanks angie, Rosemary is darn good idea to mix in. You one of them herbalists "man" lol.
Regarding exercises, i hear what your saying, but just moving them through day is as much as she at manage to do. I think we have seen some improvements though. Should have, its been 3 weeks over now since op. Will talk to nurse today. Take care all
Lee

vertangie
Member

Re: help

heya lee.

may sound odd but have you thought about herbs, smell lovely, can cook with them and rosemary has the prettiest little blue flowers in early spring but stays green all year round. Maybe put a little rosemary bush in with the flowers for a little warming fragrance in the winter months. Not really a flowery person so not sure what to suggest there I'm afraid.

As for the excercises if she doesn't do them often enough it will hurt more I'm afraid. The trick is just to stretch a little and when it starts to feel strained or hurt stop. just do a couple of each stretches and then stop and do that again later. Don't do loads at once and don't try and push it like you would say areobics, this isn't about getting fit it's about stopping things seizing up. She could go and see her breast care nurse and get her to show her how to do them and where to stop so that she doesn't end up in lots of pain but does find it gets easier.

siggo
Member

Re: help

thanks helen
invaluable is the word, certainly for me. Jill has a read forum sometimes and i talk about what ive written and what you,ve all said. This is helpful specialy when we laugh.
Sussex not to far from surrey so, no dont look like we,ll go garden centres today. Jill got up about 9 for her breakfast then went straight back bed. Real tired. Just got up about 1300 hrs. Prob wont go till friday now as have another hospital trip to the torture chamber but i think this just chat with chemical sam.
Have tried winter pansies before and they tend get a bit of a bashing as up on 1st floor. Bulbs good idea. Will put some in but want something thats nice now for instant effect and make jill feel bit brighter.
Got the one about dryer, nice one. Cheers me dear
Lee

Fletchjet
Member

Re: help

Hi Lee
If the weather where you are is anything like it is in Surrey you probably haven't got to the Garden Centre today - anyway a few suggestions Winter Pansies - available in a full range of really bright colours, also Primulas again good colour selection and if you want you can put some bulbs in to pop up in between in the spring. There are some lovely small daffs called tete a tete which work well in window boxes as do crocuses. I am sure you will find lots ot inspiration as you walk round.

hint with regard to the ironing - if you have to tumble dry due to the weather- if you hang it up straight away (tshirts, joggers jumpers sweatshirts etc not proper shirts and trousers) then you can normally get away with out having to iron them. During chemo we concentrated on the essential rather than the non essential. We applied this to the general housework too - we have caught up with ourselves a bit now but in the big scheme of things it was better to concentrate on the important stuff.

I think you will find and Jill too that you are now part of an exclusive club of strong people that are very good at being there for each other. As much as others often offer help its not the same if they haven't been through it too. It may only be cybersupport but it can be invaluable.
Take care and hope the scans go well

Regards
Helen

siggo
Member

Re: help

well girls
what can i say but thank you so very much for all your re assureing words and experiences. We all know what this cancer can sometimes be like, and of course i feel all you hear about is the horror stories.
I think im going to have to keep coming on here for a while as it feels like, this, and getting out,specialy with Jill, are my only things that help.
Well, another early rise 5am again. Fell asleep crying. Woke up crying. Cant just lay in that bed. Jill, some times, i think a bit better, but sort of made her do a few, and it was just a few, exercses last night and i dont think that was the right thing to do as arm was painful after. She wanted pillow support under them this morning too, so will have be careful.
I was unsure about talking to jilly last night about my concerns about scan but decided too. I am worried if i talk to her about certain things it will make her think, or set her mind reeling(like mine does). She says that she,s just going on the fact that its just in her armpit (lymph) and thats it. Typical jill, strong and possotive which makes me feel weak and of not much help to her. She tells me to talk,as i do her, so i did and i think she knows what i,m like anyway. How can we do this journey together if we hide things. Think i,ve just answered my uncertainties.
Took jill for a little plod around the houses last evening and she did say that felt better so thats a plus.
Today,well, what was i saying about weather. Dark and wet so thats prob it for sunshine. I was just gettin to like hanging out that washing. 3 loads yesterday, and 2 i got dry on the line. I know, carm down girls, i am good , aren,t i. Love it.
06.30 now so prob get the iron fired up. Hoping to drag jill to garden center today. We have a couple window boxes that i made couple years ago, that need filling, so prob get some hardy, pretty thingy,s to go in. Any green fingered experts out there with any ideas. Thanks again you girls for helping me. You're the ones with all the sh*t and there you are helping me. You are true soldiers. Look for ward to talk later. Bye for now
Lee

Jacksy
Member

Re: help

Hi Lee,
Just wanted to pop back in and say I'm still thinking of you both and sending cybersupportive vibes.
The trip to the dump made me laugh....! But as someone else said, it's the small things, and just getting out of the house and being together. We have even managed to make an outing of going to the hospital canteen for a hot chocolate!
I know what you mean about the tummy somersaults - a horrible dread feeling. I promise you it will start to feel better when the tests are over and you know exactly what you're dealing with and what the plan of action is.However unpleasant the news, knowing what you are facing and having a team around you with a plan gives you a boost of strength.
love jacquie x

jackiek55
Member

Re: help

Hi Lee

I was also called in for a liver scan just three weeks after my mx in Aug. I had had blood tests to see if all was well for me to start chemo and my liver function tests were not good enough. I had the scan and all was fine. My OH and I went away for a week to Cromer, did lots of walking and breathing in the fresh sea air and when I went for my next bloods all had righted itself. They thought that it could have been due to leftover anaesthetic from the op. I am now 8 days after my first chemo and so far so good.

I know it's difficult not to worry but keep your chin up. I'll be thinking of you both.

Jackie

Kindensurprise
Member

Re: help

Hi Lee

Jill is fortunate indeed to have such support from you. She will need you to keep on doing the household stuff which I'm sure you will. Some OH's (mine included) think if they do it once that is enough!

We have found the book 'Mummy's Lump' published by this website absolutely fabulous when explaining things to our children aged 4 and 2, so it might be worth getting a copy - it's free - for your 3 year old. It is written for toddlers. The older boys might use a website for children of people with cancer, it's aimed at teenagers.

For you, there is partner support available from breast cancer care, and do accept all offers of help cos if you keep saying no people stop offering, and it does make people feel better if they are allowed to help.

Good on you for coming on here and good luck.

Kinden
x

vertangie
Member

Re: help

Don't read too much into the scan Lee.

Almost all chemo is hard on the liver so they might just want to 100% sure that there's nothing there seeing as some nodes were involved. I'm sure it feel like it's all piling on top of you right now but it's good they're being so thorough.

My hospital doesn't do scans as routine and it upsets a lot of people (and I've questioned it myself) but quite a few hospitals have a policy of doing scans if there's any lymph involvement at all so really don't panic just yet. Sometimes a patient is diagnosed with secondaries at the same time as the primary cancer, ie they've got symptoms of spread right from the start and I've read that in these cases they don't tend to do surgery so I don't think it necessarily means what you fear it does.

You could call the helpline on this site, it's manned by people who've had BC and know the answers to an awful lot of questions.

Hugs

Angie

siggo
Member

Re: help

Thanks Angie for link you clever girl.
Had look but i dont know if it for us. Maybe later.
What was i saying about feeling better. Should kept my bl**dy mouth shut. Jill in bed sleeping and i,ve just had to take a call from hospital.They want scan her liver on sat. Oh hear we go again. Feel like my guts twisted up, down and tearful
Lee

vertangie
Member

Re: help

Morning Lee.

You're not sleeping properly are you hun. God those first few weeks are really hard... don't think about stuff like money right now, you're still waiting for results and to be honest you'll still both be in shock. It only really sunk in for Me and Tommy after a few months and we're both self employed and were worried about money etc but you do manage somehow and you'll be able to concentrate better in time. the hardest part is not knowing what's coming I think and yet whatever treatment you have to do you do manage but trying to imagine the whole lot up front is enough to wind you.

We have a border collie that Tommy walks every day and after my diagnosis I joined them, every day since Feb apart from 2 days when I just needed to sleep but it's our escape time when we get to see nature doing it's thing and getting some fresh air. I don't know how we make the time but we do and it really helps you sleep at night if you've been blasted with a good dose of fresh air... You should both take a drive to the sea or something, fill your lungs with good salty fresh air and sleep better.

Make the most of this time, I'm glad we did rather than just the interminable waiting for bl**dy results, we all here know what it's like and it's hell but you will move on... eventually.

Ironing.. what's that, we apparently have one somewhere. One of the benefits of working from home and only wearing clothes with at least 10% lycra 😉

Oh yeah the Haven DVD... I'll send you a link in a sec.

siggo
Member

Re: help

Bless you Angie
and morning girls and any other half's if your out there
hows it all going?
I think i feel bit better today, if i can force myself to block things out. Have been getting bit more sleep but am up this morning soon after 5. Blo***y ironing last night and i,m still not too the bottom of basket. Its just about level with top know, and stop laughing. It really does make you appreciate how good a job you girls do and how in-efficient i am. Mind you i dont wont get to good at it for obvious reasons ha ha.
Whats with all this weather. Its been beautiful here. Real medicine. Not looking forward to dark,wet windy days but hayho, maybe stronger by then.
I can just hear the roads getting busier know. All those suckers going to work ha ha. No but seriously, work is another issue as money not going to last many weeks, maybe few months. Mixed feelings. I,d like to get back to work as it will divert my mind and relieve financial worries, but i would miss and worry about jill. Plus i know how my concentration was affected on getting jills diagnoses. God we,ve still got go through more test and dreaded blo**y results and we have no good news yet. Tummy doing yet another summersault just thinking about it.
Any way this wont do. Sun coming up so must get the wash out on line and see if i can break the back of that bloomin ironing. Talk to you later
Lee

vertangie
Member

Re: help

Hi Lee.

This is a really difficult bit of the whole process that I remember well, so does my OH (other half).

I had a bilateral mastectomy back in Feb and for a few weeks (around 3 or 4) I couldn't bear the area being touched, it hurt for the first 2 weeks and then just felt too odd. Turns out it was the nerves joining back up that makes everything feel so strange. The exercises she's been given really do help but they aren't comfortable to do, they do pull on everything a little, if she does a little bit a couple of times a day she'll get strength back faster. I know some ladies took pain killers before doing them (not me I'd rather the pain personally).

I know my mum and OH found it really hard not being able to hug me properly but within a month they could and it did feel good (although in all honest not too hard for a couple of months).

The shock for the first few months hit us really hard and we coped by drinking far too much red wine and watching movies late at night. We've backed off on the wine (but not the movies). Gettting out for fresh air and seeing nature doing its thing really helped me, just innocent little things like ducklings in the river cheered me up no end.

We're still coming to terms with an uncertain future but we're living it to the full and that's all I think you can do really. It is getting easier with time.

I've just finished chemotherapy which wasn't fun (understatement) but it wasn't as bad as I thought and I now feel like I can start doing some really recovery and living now.. in time she'll get there, as will you.

Do talk to each other about stuff. To start with me and OH avoided certain things like what if I don't make it but it turned out we were both thinking it and needed to talk about it then we could move on a bit, you may be different but just keep talking to each other.

And don't forget that you'll all be in shock and as such your own health and the kids will have taken a bit of a battering... poor Tommy's exhausted after 8 months of treatment and I have to remind him that it's OK for him to join me in a little heap on the sofa and to take his vitamin supplement too. It's amazing how hard it hits you but a new kind of normality does come around... eventually.

Lots of love. and give her my love to as one bilateral mastectomy woman to another... it does get easier.

Angie

Fletchjet
Member

Re: help

Hi Lee
I can't talk from experience regarding the pain as ine was inperable - but i know from posts on here that many women have alot of difficultly with their arms after especially if alot of lymph nodes etc were removed. You may want to talk to your breast care nurse (BCN) or see a physio as I know its important and they are often given exercises to do post op etc. There are some leaflets etc on this site that may help.
Also if you want to be a help to Gill you have to look after YOU too so don't try and be superman - if somethings don't get done don't worry.
I though the trip to the dump was lovely - my partner is into aircraft so when i was going through chemo he would often take me out to watch the planes and we would grab sarnies and coffee etc and make a picnic of it - its just special time together it doesn't have to cost a fortune its the thought that counts!!!
Regards
Helen
PS post as often as you like that what people are here for

siggo
Member

Re: help

hello again
did write a letter last night or should i say in the early hours as i cant sleep again and oh these darn computers. I do often struggle with them.I dont know where it went.
I think again, i was just searching for some one to say, don,t worry, everything will be ok, but i know i am really finding it hard not to break down. My eyes seem constantly to well up the hole time. Mind is raceing,prob about all negative stuff. Heart beats fast and tummy churning all the time.
I will put it to Jill to see if she interested in chatting to you all, but must say i dont know if it will help her if she reads my letters.
Kept busy yesterday chasing boys and doing hosework. Then after jill had her sleep treated her...wait for it..to a trip in car, to the tip to get rid of our old washing machine that lays in garden. I know i can here you say"you know how to treat a lady ha ha". I will ad that we bought one of those bl***y take aways and sat in a beautiful park and ate which was nice.
Did get out earlier while jill slept and took youngest, Johnny to park with my other 13 yr old son, which was good therapy.
Oh well i suppose i better stop going on and get another load washing on. By way can anyone shed any light on why jill, still in big discomfort with both her arms. I am sure it is because lymph glands and so many have been removed but this is really slowing her down. You can not gently touch any where on her arms without her winsing in pain and it almost impossible for me to wash her arm pits so you i,m sure can appreciateit if not yet , will get her down. Love to you all. Thats all for know. Thank god i hear you say.
Lee

Jacksy
Member

Re: help

Hello Lee, I am so sorry to hear about your recent experiences. As others have said, you are still in a state of shock, and that makes things seem unreal and makes it difficult to think straight. I am so glad that you have shown your support for Jill by coming on this site. What she needs more than anything is someone to travel with her on the journey ahead, and someone to be completely honest with. It sounds like you are the sort of person who can handle that.
You can help by listening to her, giving her (and you) treats (just a night in with a DVD and chocolate can work wonders), by doing practical daily stuff around the house, and spending time with/supporting your children, as she may feel guilty that she doesn't have the emotional energy to be close to them at this time.
Everyone is different and thier relationships are different, but it seems to be generally thought that the more honest you can be with children, and allow them to ask any questions they like, the better.
Also, go to appointments with her and write things down! Take a list of questions and make sure they get asked, as it all goes in a blur often.
You can manage the treatment - you will get through it, and there are all sorts of sources of support and help.
Just keep on coming on here and ask anything you need to, and others will always help you out with info.
Would Jill like to come on and read some other people's stories? It really helps to know you are not alone.
Wishing you both all the very best
Jacquie x

Molennium
Member

Re: help

sounds as if you got a huge shock from pre cancer to double mastectomy and then invasive cancer in the space of a few weeks, when both of you feel healthy. It's a nightmare and no wonder you feel you can't cope. I've found support groups a help and reading about other people's experiences.

Let us know how you get on,

Mole

siggo
Member

Re: help

thank you helen.
kind and reassureing words. Can give her gentle cuddles but not big hugs. Time will hopefully heal.
Hope all going well with you. Suprising to read that many partners are not very supportive but i suppose many people handle things in there own way.
All the best
Lee

Fletchjet
Member

Re: help

Lee
I am sure you will do lots of living with Jill - the next few months may not be easy but life can be like that sometimes - whilst the results are not what you would have wanted there are treatments available to her so that is something really positive. Its difficult for partners - I know mine has been wonderful but many aren't but the fact that you are asking for help means that you want to be which is wonderful. If cuddling is difficult have you tried a snuggle from behind - my partner often holds me either sitting or standing from behind (doesn't crush the important areas that way) but you can still be close.
I hope all goes well - its a long journey but you will get through and you will both be stronger for it.

Take care
Helen

ForumMember
Member

Re: help

Hi Lee and welcome to the forums,

I have put below the link to BCC's publication 'In it Together' which is aimed at partners of those diagnosed with breast cancer. You can either download a copy or order a copy on line. Hope this helps:

http://www.breastcancercare.org.uk/content.php?page_id=3067

Best wishes
Lucy

siggo
Member

help

hi there
i,m struggling terribly to deal with my partners breast cancer. Earlier this year we got a lump checked out, which was just fatty tissue but they were concerned about calcium deposits in both breast. Anyway after the test which i,m sure your famiiar with the diagnois was DCIS and a double mastectomy was needed. This was a real shock but pre cancer sounded better to me than cancer? Poor Jill had the op and i was just a mess. Have to be strong i keep telling myself. Think possitive. Some times easier said than done. Jill is so strong and a real inspiration that makes me feel even more useless. After op jill very un-comfortable still after over 2 weeks. Can hardly move her arms, cant cuddle her and we are a very loving couple. I am careing for her the best i know but after todays results i am well i dont Know how to describe it. Results not what we wanted to hear. Histopathology reports are dificult to understand but invasive cancer, tumours and possitive lymph nodes(19 glands removed?) are some of the words mentioned. Now she looks like having cemo and/or radio. We,re only 40 and have a beautiful 3 year old son to gether as well as 4 older boys(12,12,15&17 years) i have so much living to do with jill but i am so low. Sorry this is not a cheerie letter but am hopping to help myself so i can help jill better.
Lee