I am just starting the road you all walk

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I am just starting the road you all walk

No. of entries: 11 | Posted on 05 Jan 2013 11:07

I am just starting the road you all walk

  • my husband has just been told he as pancreatic cancer and is now waiting for a date for an operation, we have been given all the facts and figures on the "whipple procedure"  I while we wanted the truth in was an awful lot to take in. life expectancy for him is now 5 years. I now face a future of caring for him, looking after the domestic side of living and holding a full time job. how have others in this position organised their lives, do I give up work, where can I get help from the questions are endless and I don't know where to start. I want the best for him, he as always put me first, looked after me to the point where I now don't know which way to go. I'm frightern, scared and most of all dreading the future without him.

    Barbara

  • hi barbars , Whoa, you are galloping along to 5 years in the future? no one can do that with any certainty, i understand your panic, etc etc, but..............

    my hubby was diagnosed 3 years ago next month [ 2010], stent done, attempted whipple in apr 2010, unsuccessful as tumour wrapped around Superior Mesenteric Vein, [ s.m.v. ] to difficult to attempt, this was at derriford in plymouth. uk

    Chemo, GemCap, started on a trial, in june 2010. tolerated well, had 2/3 shrinkages, had 19 months treatment  in total, we see oncology every 3 months have a scan and  consultation, we are still going on slowly day by day,  enjoying ourselves day by day, albeit differantly to before P.C.

    whipples is a huge and complicated operation, and obviously your hubby will need you or someone around ,for i would think about 6 weeks, give or take, other carers have gone back to  work, most of us have a home to run and other things going on in our life, we are retired which brings its own problems, health etc, especially for me.

    you will find a new way of life that suits you both, my hubby doesnt need "nursing" but does have another problem with his programming of information, sequencing, etc , remembering medication etc etc, , its called M.C.I [ mild cognitive impairment]  so i make sure things are ok, with lots of notes left if i go out !!!!!

    You will find others on here a great help, coming from differant direction to me no doubt, also your specialist cancer nurse should be a good source of information,, the specialist nurses on here are available for you to call free to talk to, hope this is a bit to be going on with?

    please please dont write your hubby off, he must be feeling awful too? you need to try and get a positive mental attitude, most of all have no regrets, do and say the things that you want to, as far as you are able, chin up, best foot forward, i will be interested to know how you feel a bit later on, go and give your kind considerate hubby a huge cuddle!  love kaitie xxxx

     

  • Hi Barbara, i'm glad you've found this forum but sorry to hear about your husband. As he has just been diagnosed you must still be in shock at the news and need time for it all to sink in. I am sure, given time, you will find the strength to cope. it is amazing how we can adapt to new situations , your husband needs you and you will be there for him like he has been there for you. My husband was diagnosed nearly 3 years ago now and my life has changed so much but some of that change has been positive and I am dealing with things that I never thought I would or could. Kaitie is so right in what she says, not least about trying to stay positive, it can help so much. I wouldn't necessarily make any big decisions now about your job etc. I'm sure your husband will need some post operation care but one step at a time. The only advice I can offer at this point if you have a question or are unsure about anything never be afraid to ask, the doctor, surgeon, oncologist, nurses, Macmillan help line, others on the forum - people will always try and give an answer. And never be worried about what you write here - no-one will judge you and the other carers will have an understanding of how you are feeling. And remember you are going to have to care for yourself as we'll as your husband - looking after yourself will help you look after him, Keep posting and let us know how you are both getting on, Hiloa xx
  • Hi Barbara so sorry to hear about your husband and that you have found yourself here. But please stay as it is a lovely site and there are lots of lovely, caring people here who will help you.

    My husband, Brian, was dx with stage IV lung cancer (never smoked) with mets in bones and liver, in April 2012. I was told 12 months with treatment, 6 months without. He had two lots of chemo, then developed pneumonia and a lung abscess in August, in hospital for 3 weeks; my son was told he had days rather than weeks.

    He is still here, thank God, has had two further lots of chemo and is now on a clinical trial with a 50% chance that he has the drug rather than the placebo. He, thankfully, has no pain, does what he can, when he can (although he is quite fatigued).

    So please don't look too much into the future, take each day as it comes and enjoy it together.

    Lots of love and hugs to you both.

    Sandra xx

  • Hi Barbara

     

    I'm Kathryn. my husband was given 6 months without treatment 3 yr ago. Some might think thats great but symptoms/side effects etc have left him with other troubles.

    I dont come on here often, partly because it upsets him, he doesn't like to see himself as that ill/disabled etc. I know how you are feeling and if you need  a chat contact me on kathryn@approachtrainingsafely.co.uk. Not only am I a carer for my husband, I am also a nurse with an interest in palliative care.... I really do have experience from both sides., which may make it easier for hubby for not always for me...... I have prescribed vodka for me this weekend   he is doing the man being alone..but he needs to take responsibility and that is harder than letting me do it..  Drink keeps me strong but I know it is not the best way.. xx

  • Hi Katie. thank you for your reply.like you say nobody can jump forward 5 years. I think I was just in a panic trying to sort everything out at once. unfortunatly I am a person who likes to know where I'm going, what time I'm going, how do I get there, in fact a true whittler. I have made a plan.

    1, get signed off this week to give myself time to adjust and sort myself out

    2.get bag ready for when they send for hubby (that way I know everthing is in it

    3 spend time together and talk about his feelings and mine.

    4 go back to work next week to bring back some normality in my life.

    we have a very good consultant who gave us the true facts about the operation, and after care and for that we are thankful. both of us have nursed cancer in the past and so know its not easy.

    I hope that by being on here I can learn what others do, it seems so different this time with it being someone so close to me. I appear to be rambling so I will stop here.

    Barbara

  • Hello Barbara, how sensible, making a plan.........but I will warn you, this b***dy disease knows nothing about plans, so you might find you need to re-consider plans as you go along! But you have taken that first huge step into trying to get your lives in a sort of order! Sending you a big hug, you have found this place and I'm sure it will help you xxx
  • Hi. yes plans often go astray but if I have a plan I feel better knowing that something was in place in the first place. I intend to take each step of the plan daily, try not to forward plan, like you say this b***dy disease knows nothing about plans. my hubby is a very positive man and he as every faith in me to help him through this and now I have found this group I feel more able to cope with what it throws at us. we are just waiting now for the date and hope that when we get to the hospital there is still a bed in ICU. it will be a couple of weeks as he was rushed in hospital on new years day with a stranglultsted hernia and was operated on, plus ulsers on both legs are now infected, so he needs time to build his self up for the major operation.

    Barbara

  • Hi Barbara

    Joining this one a couple of days late, I hope you don't mind.

    I was going to say, take a deep breath and let it go, now do it again. Then I read the later postings and can see that you have done that and are continuing to do that.  

    The first thing to remember is that as well as being scared, frightened and dreading the future, the shock of the diagnosis is off the scale and you do need time to recover.  

    Katies post is spot on.  You learn that you have to take things one step at a time, although I know from experience, that it is pretty impossible not to let your mind race ahead.  

    Having a plan is good too, especially if you can keep them simple and short term for now (as yours is) as long as you remember that things do not always go according to them.  There will be lots of short notice appointments, all in different places and inconvenient times, you will sometimes feel like you are meeting yourself coming back!  The best laid plans of mice and men and all that....

    I am glad that you are taking a few days out to get used to things and for you and your husband to talk about things.  It is not always easy to talk about how you are feeling, but be as honest as you can.

    My husband was diagnosed in August 2012 (throat cancer) and we did something similar.  My hubby wanted things to be as normal as possible for as long as possible and I did my best to make sure that what he wanted he got.  So we both went back to work in the run up to his surgery in september.  Hubby had radio and chemotherapy after his surgery and has obviously been off since then, I went back to work for a while, and then took a 3 month break from work at very short notice, to support him through the rt and chemo (they have been absolutely fantastic) due back on 1 February.  

    You will find what works best for the both of you.  Following his surgery, you will return to some kind of normality, it is just that your normal will have changed, but that doesn't mean that your lives will be worse, just different. We were also given the all clear just before christmas.  We know that doesn't necessarily mean for ever, but we can't think of what may be lying in wait a few years down the road and it means that we can focus on getting hubby back to full strength and resuming our normal, but very different lives.  And for that we are truly  thankful.

    Try not to focus too much on the 5 years.  Surgery and treatments are improving all the time.  My father in law had incurable cancer for more years than I can actually remember.  Some of the secondary cancers he developed were successfully treated (although when he was first diagnosed, that wouldnt have been possible).  Also, everybody is different and reacts different to the various treatments that are and will become available. But you will both come through it.  

    I hope your husband's surgery date comes through quickly and that it goes well.

    Keep posting here, we have all either been there, are going there, or are there right now.  And we are always here, whatever it is you want to say (we specialise in ranting and raving by the way) nobody is judging here xx

  • Barbara, Gazcata is spot on about advances in treatment, daughter would have succumbed if it weren't for three trials over the last six years, the final one kicking her into remission..........all cancers are being greatly helped by the latest move towards antibody plus a poison type of treatment, and even that is gradually being superseded by a move to establish the genetic blueprint of the cancer cells involved to aid spearhead treatments! It's amazing how fast research is going! Keep posting, keep loving, keep that chin up xxx
  • Dear BArbara,

     

    You certainly have your plate full, but I can tell you are both strong and realistic and very very positive, which is 9/10 of the battle.

    This site is awesome, and everyone as you have already read has either been here, is coming here or is here now....and while the locations in the body change, the Big Nasty C is the constant.

    You sound like your have a good plan, and you are preparing as best you can.  One day at a time, love every day even the rotten ones, and charge ahead.

     

    When you have the days you cannot explain and the tears that come from nowhere (*and are equally gone like a flash). we are all here for you.   

     

    Best of luck, hope the surgery goes well, hope you get some help if you need it...and big giant hugs to you both.......

     

    XOXOC