Juggling time

I must apologise in first instance for this post, as you will see its stupid oclock in the morning again (i've been up 5 hrs already) I guess I'm kinda feeling unsure of how i'm going to cope in the weeks / months ahead.

Just before Ian's diagnosis (we had already been prepared that it could be cancer)  I had been offered a new job, same company , more hours & further  traveling distance. Ian & I discussed it as we do all changes in our home. Ian is 10 yrs older than me so he was looking at retiring in 3 years time so he said it was a good idea, then i could become the primary wage earner. We are in the fortunate position that we have paid our morgage off so thats a bonus.

How do you carers cope juggling work, hospital appointments, housework etc ..... I have had some time off work, 2 weeks holiday then the Dr gave me a sick note for 2 weeks as my stress level went through the roof. I am due to go back to work on friday and absolutely dreading it 

Sorry again for moaning but all helpful advice will be massively appreciated

Much Love & Best Wishes x Lesley x

  • Hi Lesley, 

    I'm sorry to hear about your husband's diagnosis and the situation it has put you in. Many of our members will understand how you are feeling and what you are going through at the moment having been in similar positions themselves and I'm sure they will be along soon to offer their advice and share their experiences with you.

    I hope your first day back at work goes ok tomorrow. I know you're not looking forward to it but see how you get on and if you feel you're not ready to be back at work do go to your GP and request more time off so you can destress. Try to look after yourself so you are strong enough to support your husband through this difficult time in your lives.

    Also, you don't need to apologise for moaning Lesley as that's what the forum is for. Come back and moan or vent as much as you like and remember that someone will always be here to help :)

    All the best, 

    Steph, Cancer Chat Moderator

  • Thanks Steph, as it happened I went into work last week to collect a rota and they had actually put me on rest days until tomorrow. I do feel ready to return now I need to 'find' Lesley again. 

    As calouse as this may sound I feel now sitting at home and all I seem to be thinking about, and also talking about is Ian's cancer. I understand we have a slog on our hands but I think work will be a distraction, as i do actually enjoy my job (I'm a supervisor within the retail  diy- tool industry) 

    Thanks again for the support , its brilliant to come on here and 'just talk' and not feel silly about voicing your thoughts, also knowing that there are others in the same situation as myself

    Much Love Lesley x

  • Well just a  update on one month on....Ian had his 1st chemo session last friday  and so far so good, he felt a bit sicky for the 1st couple of days, since he has just felt like he has a 'thick head' and is very tired, sleeping when he needs to. He is eating fine just in such not great quantities but drinking plenty of water which he feels helps.

    I have  back at work now for 4 weeks, our daughter comes while im at work to check up on dad and kidnap the dog for a couple of hours which is a great help.......however for me  things haven't exactly have gone to plans as I find from today I am back on the sick for the forseeable future.  All was great for about 3 weeks but this last week its completely gone to rat poop. I haven't been sleeping or eating enough and today was the clincher, I drove to work (most of journey motorway) and was totally unaware of the journey I had driven about 7 miles before I was aware of my surroundings, just 2 mile away from work. Its safe to say this scared me wittless. On arriving at work I put my lunch in the fridge and i found my lunch from yesterday there still intact, I was convinced I had eaten it. and cry bloomimg heck, I'm not usually a cryer but for 3 days now i've cried for england, and not just a little weep a full on 2 hour + uncontrolable sob. I'm trying so hard to hold it all together but just can't  I feel a complete and utter failure. I'm suposed to be caring for my husband  not acting like a complete *** and needing a good kick up the jacksie 

    I'm so sorry for pouring all this out but I don't know what to do, and feel totally unable to tell friends or family how i'm feeling. Please i'm not looking for sympathy, what I thinkI need is a good slap and some practical advice. 

    Thanks in advance lesley x

  • Hi Lesley, 

    I know exactly how you're feeling as your thoughts and emotions are a mirror of my own. My husband was diagnosed with bladder cancer back in June. Since then my whole world has become completely 'cancer' orientated. He initially had 3 cycles of chemo and was then going to have surgery. Unfortunately the chemo was ineffective and now he has developed secondaries and has just started a different chemo and there is not going to be any surgery.  Fortunately for us we run our own business, so time off work has'nt been an issue, although it has been really difficult when he's been unable to work, because I have to take over everything - on the one hand I feel guilty not being around to nurse him, but on the other it can be a relief just to be distracted with the business.  

    I thought I was coping really well until I went to see my GP and to my complete horror, totally broke down, sobbing uncontrollably.  I have since had many episodes of doing this and like you feel unable to tell my family or friends how I'm feeling, especially as my 80 year old mum lives with us and so I look after her as well as she has a heart condition.  My doctor told me that we all have a natural 'fight' or 'flight' response when we feel that we or our loved ones are threatened and he believed that I would be able to cope ok.  After that I gave myself a right royal kick up the ***. Keeping busy and keeping to normal routines wherever possible helps an awful lot, and it means a lot to my husband as it helps him to feel 'normal'. Take help wherever it's offered, I refused offers of help to begin with, but soon realised that our daughters and our close friends genuinely want to be involved and help wherever they can.  As we live in a small community, word soon got round and so I now use a polite, but firm phrase with people who want to talk to me about it, (which usually sends me to tears) "Thank you for your concern, but we're not mentioning the C word today".

    Don't be too hard on yourself, I've quickly learn't that dealing with this is an absolute emotional rollercoaster, you can feel perfectly fine one day to the point that you almost forget anything is wrong (particularly if your husband is looking and feeling relatively well like mine is), the next day the slightest minor thing sends you crashing. Try to take a little time each day, even if it's only 30 minutes to either exercise, lie quietly and deep breathe or just do something that you really enjoy.

    I'm finding this forum really reassuring, just knowing that there are so many people out there in the same, similar or worse situations than my own.

    Good luck, am here anytime you'd like to chat (or vent) x

  • Thank you so very much Tiggywinkle ( btw my absolute fav of all characters ever and my fav animal of all time )  for your reply, I think when you hit rock bottom you think you are alone and people just think you are being wimpish. 

    Well I bit the bullet and went to see the DR today, he was okay and chatted to me for a good half hour, he has given me some meds to assist sleep  Circadin (apparently its a chemical we produce naturaly ) and a right royal rollocking about me reglecting my other meds. Today I have had trouble staying awake and feel far more possitive about life. He has also given me 2 weeks off work to give me some resting space. 

    Ian is having a good day and has actually left the house twice today, 1st time in a week.  he had to see the dr as he has the start of a chest infection, he spoke to his  McMillan nurse today and she was a bit shocked that they had started his chemo as he had a 'productive' cough at the time. She said they shouldn't have started it, given him antibiotics and left  it for a week its all so bloody confusing.  His cancer is stage 4 , inoperable with his primary and secondary both in his right lung, they are still unsure about which was the 1st and which one followed.

    My interests include all sorts of craft work, I have a room for it but over the last yr we have had a major resturcture of our house so all extras have been dumped in there, tomorrow I'm going to bite the bullet and make a start of making it 'my space'  . As they say tomorrow is another day I'll see how that pans out then.

    Thank you again for your reply chick, it is such a comfort knowing I'm not alone. Much love to you and your's and hope you have a great weekend 

    Lesley x

  • Well here we are a month on, I am at last planning to return to work on tuesday had a couple of sessions with a CPN, which i found absolutely cathartic actually speaking my mind , fessing all if you like. I verbalized things I thought I never would and dared to say things Iv'e never been able to ..... the only way I can explain it in crude terms is like having a poo after a month of constipation !! ewwww not a nice thought.

    Ian has had his second session and this one has poleaxed him, as I'm new to this I'm not sure what to expect. I have spoken to others who say that their lives haven't changed much, they still manage to go out, if only a stroll round the supermarket. Ian refuses to leave the house point blank ! We have been married 26 yrs and for the majority I was a 'single parent' to our children  due to his work, it hasn't been easy. I know for a fact he isn't taking his sickness medication or his iron tablets (ive counted them) , he has also seemed to lose the ability to do anything, even putting a dirty cup in the dishwasher seems beyond his ability...... at the moment (please forgive me) I want to slap him stupid.  Perhaps I'm just not 'getting it' and being unreasonable

    I'm sorry if all this sounds heartless but I'm at my wits end. Any advice will be greatfully received, what should I be doing or expecting

    Much Love to all x Lesley x 

  • Hi Lesley

    Being a carer is not easy. You are doing nothing wrong just reacting to the new circumstances and family dynamics.I have been a teacher, mother and carer for most of our marriage as 5 years in my husband was diagnosed with MS. Not knowing anything about it we thought we'll cope with this! 38 years later we are still coping but when cancer also entered our lives it was a whole new ball game.

    I am now retired but know I have been lucky to have a career as my mum was brilliant helping with my son and husband.There have been times when I wanted to lash out but I learned to walk away from the situation, take some time for myself and then face the next challenge. We found it took time to adapt to new situations like being a full time wheelchair user, bladder problems but especially the fatigue. With cancer you don't have time and you are just thrown in at the deep end with the medication and side effects.Since my husband has been on pazopanib, now on his third cycle, life has been restricted further. Had to cancel holidays planned because he has too much fatigue and basically feels sick even with anti- sickness pills, food tastes like cardboard etc.

    There is no magic bullet that can help, you have done the right thing talking to someone and coming on this site. Can you put out his medication for him on a daily basis? Those pill boxes might help.Does your husband need to talk again to someone outside the family as he might not want to unburden onto you and stress you out more. Don't give up work, try to compartmentalise and forget about home when you are at work, as a teacher I had to do this as it was the only way I could cope.Also don't feel guilty about work and laughing and chatting with colleagues as you need this.

    I know it is all words but I hope it helps.

    Keep strong and best wishes

    Chrissie

  • Thanks Chrissie for yor reply, It is a strange kind of comfort (wrong way of explaining it but you know what I mean)  that im not alone in the not physical but mental struggle of it all. 

    Regarding the medication I have one of those sorty things as I too have a long term medical condition ( extreem low blood pressure , slow heart beat with Arrythmia ) 'it' has been with me since I was 40 I'm now 51 and without my sorty box I would be well and truly buggered to be fair.

     Ian however refuses and I constantly have to remind him, have you taken your steriods, big sick pills (the after chemo ones)  so I have decided  tough as it may seem, he is an adult if he doesn't want to take them then its up to him and it wont get mentioned again. 

    Ian talks to his primary care Nurse weekly sometimes more, however ( there is always an however) he is quite ..... whats the word.... hmmm evasive ? with the truth .. "Are you going out ? " Yes "Are you taking all your meds? " Yes  so he tends to call them while I'm out.  Yesterday he gave them a call while I was out shopping with a couple of our kids, to cut a long story short she said the Doctor needed to be consulted as he shouldn't be feeling the way he is, he has to go on Tuesday (the day I go back to work) I was quite blunt and said he would have to find someone else to take him as I was going to work. We have a few close friends ( mostly neighbours) who have offered to give us a hand, its all sorted now as our middle Daughter (Lucy) is going to take him. Ian has already decided he isn't having his next chemo session which was due Dec 9th as he wants a 'normal' christmas 

    As for work YES ! I am going back, I need to find Lesley again. I have arranged 'cover' for the 3 days I will be there (I am doing a staggered return 3 days building up to 5 days) and quite excited at the prospect of going back ... I work in retail, senior supervisor in a retail chain selling tools, building equiptment etc, I miss the banter the customers are brilliant .

    Right I'm off to paint my landing and stairs nothing like a bit of decorating to get the mind easy lol thanks again chick for your reply much love & best wishes to you and yours 

    Lesley x

  • Hi Lesley,

    I am new to all this as my husband has just been diagnosed with stomach cancer and we don't even know the extent of it yet. I am scared stiff about the future and finding myself falling into the role of nurse immediately. Constantly trying to give him nutricious, easy to digest food to keep his weight up and worrying about the pain he is getting whcih seems to be getting worse day by day while we wait to find out what treatment he is going to get and what the prognosis might be.

    I am sorry that I cannot give you any advice as I don't know the half of what you have been going through. I am trying to do the things I normally do but most mornings I just want to stay in bed.

    Take care of yourself,

    Cynthia x

  • Good (early) Morning Cynthia, Im the 1st instance I'm so sorry you have found yourself in this position,  this is a wonderful place though where you can get brilliant advice, voice your thoughts (without getting judged) and you will soon find you are here with what seems like 'family'. I have to admit in the wee small hours (like now)  it keeps me company while the rest of the world sleeps. I'ts a journey non of us planned, but unfortunatly a path widely travelled. 

    Where you are on your journey is I think the hardest part, the not knowing hopefully you will soon see your consultant and questions can be asked and answered. Emotions will run rampant and there will be days when you don't want to 'face' the world or anyone in it. 

    With time chick it will get easier to understand and accept. In the 1st instance your GP should be able to prescribe pain meds for your Husband to at least make him comfortable, and you can also get again from your GP food supliments on prescription , They are like milkshakes, you can also get juice and yoghurts, they come in a variety of flavours and are all part of the Fortisip range, my mum had them when she couldnt face food, they have all the needed vitamins and minerals your OH will need to at least fortify him when he isn't up to eating, some of them are actually quite lovely.

     Keep us updated love, I'm usually around at strange hours, waiting for the birds and world to wake up .... unlike my dog and 2 cats who are laying here snoring much to my disgust  and envy :D , and I hope your prognosis will be a one with a sucessful outcome. Stay strong Cynthia . Much love to you and yours x Lesley x