Today started awkwardly.  What to feed my man when the morphine will bung him up given half a chance, but the radiation to the abdomen will almost certainly result in diaorrhea.  To do High Fibre or not to do High Fibre, that is the question?

We set off for the 30ml drive in plenty of time.  I felt so worried and overwhelmed by yet another fork in the cancer road and the implications if radiation doesn't work that I drove all the way feeling physically sick.  When Ian's cellphone went off at 9.45am to remind him to take the anti-nausea meds, I could have happily reached out for my share too

I had (belatedly) read the radiation brochure from cover to cover last night.  It mentioned that the carer can go to the treatment room on one occasion up until radiation is turned on.  I told Ian that I really needed to do that - to see the room and the machine.  It's how I operate - I don't operate well on ignorance and fear.  He agreed that would be a good idea.

But of course when the nurse came to get him and I said can I come too to see the room, she refused point blank and said there were extra tests to be done today and it was inappropriate for me to have access.  She said I could see another day. 

Turns out the tests were asking some of the same questions again as Monday (including where is the cancer situated!!!!) and a final confirmation that Ian was happy to have the treatment today - I guess the implication there is that I was somehow forcing him and he needed to be asked away from the dragon of a wife.

It's not like I'm a tourist - and I'm not doing a school project.  I just wanted some sense of what my husband was having done to him today.  I sat with him through the emergency blood transfusion 7 years ago, then waited with him in the pre-op room, acted as his "unofficial nurse *** handmaiden" for his five days in hospital, held him on the toilet while he got rid of foul black ****, coaxed him to eat and sleep, put up with his oncologist's diss-ing of me whenever I had the temerity to ask questions, sat in the waiting room for every CT scan for 7 years, sat beside Ian for every one of the 18 chemotherapy treatments over the years and the fourteen mouse antibody treatments.  I have done the hard yards.  I have fetched, carried, cleaned up messes, cooked, done Ian's chores - and continue to do so.

Did Ian stick up for me today?? Did he stick up for me when the oncologist used to belittle me for asking questions - and on one occasion asked our patient advocate in front of us "Can you do something with her?"

The answer no!!  Our social worker says I am Ian's strongest, most fierce advocate.  Unfortunately Ian is not mine - and I am bitterly disappointed and deeply hurt.  If he had said "Are you sure Lorraine can't just get a look in the door" and they had still said No, I would have felt that at least Ian was fighting my corner but no..............................

It sounds such a trivial thing when I read what I've typed - I know I am being pathetic and self-pitying.  But "they" don't mind when I do all the cleaning up of the messes they create and I soothe him when he's frightened and distressed - but let me see inside the door of a room - HEAVEN FORBID.

On the way home I told him I was angry and hurt and that tomorrow I will wait in the car - like the biddable little lady I am supposed to be.  I was still smouldering an hour after we got home so I grabbed an icecream out of the freezer and some bread and drove to the local park to feed the ducks and take some extremely rare ME time.  Wouldn't you know it Ian was asleep when I left and still asleep when I returned an hour later.  So he doesn't even know I was THAT angry or needed time away from him.

But as I am sure many of you will be thinking reading this - It Isn't About You Lorraine!!

I hope when I post next I have found my sense of humor again.

Dear Lorraine,

I don't think you could lose your sense of humour.  It's under the surface even in that last post.  But I know what you mean... I'm not as strong an advocate as you are, how could I be the same, we're a different couple!  But get this: if I go to appointments I ask most of the questions and make sure that everything on our list is ticked off.  I have to take care not to ask things we haven't agreed to ask in advance, I would always prefer to know more.  If I'm not able to go because of work commitments then the oncologist will ask my husband 'where's the boss?' and this really irritates my husband - but at the same time he gets annoyed with me if I can't be there.  And if I'm not there stuff is forgotten, e.g. yesterday was a chemo day, it had been postponed twice (long story) and it wasn't even a clinic day for the oncologist, he should have been elsewhere.  He whizzed in to the IV unit to review the blood tests and confirm the chemo could go ahead, but forgot to prescribe the magic anti-nausea medicine and my husband forgot to ask for it. That just doesn't happen if 'the boss' is there.

It sounds as if you really needed the time with your ice-cream and the ducks.  And Ian needed to sleep everything off for a while.  Keep taking care of yourselves and good luck with the next trip for radiotherapy - I hope this time you do see what the radiation suite looks like.

Best, Expat xx

Well, this one for sure wasn't thinking "it isn't about you Lorraine" - this one was nodding her head as she read along, thinking oh yes I hear you. I don't think it's selfish to also care about your own feelings - or at least, if it IS selfish, then that too is normal. I have regular moments of resentment and irritation for what feels like a lack of appreciation of what I do, and how I too have no choice in all of this. Like the fact that everytime I propose him helping out with the most minor/least strenuous of house/kids' activities to counteract husband's boredom at present, since he's feeling pretty well, I get back "no I don't fancy doing that/can't be bothered". Well often I don't fancy clearing up the mess the kids (and indeed my husband) create, or taking them to their swimming/violin/hockey/judo lessons etc, but someone has to do it and by him not fancying doing anything so tedious, it defaults to me. On the other hand I was talking to a good friend who has suffered from various chronic medical conditions all his life. He was saying to me just how overwhelming mentally all this can be, and how other 'stuff' just gets crowded out - it's not that they don't care about our feelings, it simply doesn't occur to them in the first place. And that to be honest is true to an extent of my husband's approach pre-illness too - a lot of things that would upset me and/or occur to me just wouldn't to him until I 'pointed them out' (now there's a euphemism ) Without wanting to over-generalise or patronise the wonderful guys out there, they tend to think differently to us girls and a lot of the things that hurt us simply don't cross their minds - and even when we now point them out, certainly in my husband's case he is not capable of the emotional analysis involved in taking it on board. Anyway, I find that I need time away from him too and I don't think that is wrong, as I needed time to myself even when he wasn't sick. Don't feel bad, Lorraine, you're doing an amazing job and it's not like it's a fun one - and lack of consideration of your feelings/appreciation by everyone including the most important person in your life and the person to whom you are dedicating everything you have, is bound to hurt and upset you. But certainly on Ian's side I'm sure if he really was able to understand how his actions are upsetting you then he would do it differently. As for the medical workers well I would not wish a walk in our shoes on them, but I do wish there was a way of sharing with them how it truly feels to be the patient/carer. It can't be easy for them either but compassion for those bearing the brunt of the patient's treatment and its longer term consequences is not something that seems to come very naturally to many.

I hope it all improves and that maybe you can make Ian understand how hurt you are - you don't want to have to harbour feelings like that on top of everything else (though I have tried and failed to get mine to understand that I find it unfair and sad that he refuses to help out even when physically he's fine to do so. He's just checked out mentally from the family routine already, sadly. Maybe you will have more luck and can then give me tips ). Sending you big hugs

Vikki

xx

Hi Lorr,

This is a difficult part of our journey that, because we love our spouses, we tend not to talk about. Yes indeed when we fess up to oncologists, surgeons, nurses, even porters we sometimes find that our spouses are saying "don't rock the boat" as if we had some agenda personal to us to pursue.

We go in to bat for them and they either directly or indirectly say "back off" and make us feel like we're being...selfish...pig-headed...difficult... whatever... for some motive that is nothing to do with our love for them.

Ok Ian and Jan are scared, and sometimes when they're scared they can't handle the people who are supposed to know about these things (medics)  being challenged by ordinary people who happen to be closest to them (us).

Even if we've discussed it beforehand Jan has sometimes said "If they say you can't come in you can't". The why, the what's best for you; go out of the window. Sometimes she would move from a waiting room to a chair in a corridor, wait an hour to be seen and then complain that I hadn't been more assertive about staying with her when it was she that had told me not to!

So we forgive and forget. After all you and I aren't going through cancer, (at least yet). And we know the emotional journey for our partners will be at least as bad as ours. We still feel angry with them sometimes, and we feel guilty about our anger.

It's ok to be angry with someone who has cancer. It's an awful disease but it doesn't mean that you have any moral right to trash everyone around you.

It's stupid not to forgive somebody who has cancer. It's an awful disease and it might incline you to behave in ways that damage people around you.

Just tell him Lorr, that's all, not accuse him, not attack him, not blame him, just tell him how it made you feel.

Also tell him that you love him and that if he makes it clear what he wants you'll go along with it. But don't go for a walk and expect him to be awake and notice your absence. Tell him what you're feeling, in words, not by slipping away quietly and hoping he'll notice you're gone.

So there's some advice, good or bad, from somebody who can't even open this discussion with Jan. There are things I'm furious about which I've never spoken to her about. I try to support her and, for good or ill, she ignores what I'm asking and goes with whatever the hospital is suggesting.

Damn her/bless her. That's the way it goes. Testing times for all of us eh?

Love to both of you.

Russ

Thank you Expat, Vikki, Mickied and Newbie for your posts. 

I am calmer now but still bitterly disappointed in Ian.  I will happily admit that I am the most selfish person on the planet.  So when Ian's cancer journey started, there were probably a few people who thought I wasn't up to throwing myself into his care.  For seven years now I have put Ian first in absolutely everything.  I put up with that **** from the oncologist on a regular basis because I knew Ian needed someone with him in that clinic office.  When the oncologist threw a wobbly because I asked for a written copy of a CT scan to pass to Ian's income protection insurance company, I wanted to walk out.  Our social worker said I should have - that it would have been a very powerful statement.  On that occasion Ian just sat submissively letting his wife take the flack.  I felt betrayed that day and threatened to never attend another clinic.  Clearly Ian has a short term memory problem or just thought he could rely on me to take whatever **** came my way. 

So yesterday marked a huge shift in our relationship.  It was such a tiny thing to get upset over but every strong person has a breaking point.  And as I said, if Ian had backed me up and asked "Couldn't she just walk me to the door" (because he says he was **** scared and would, I think, have appreciated the support) and the nurse had then refused, I wouldn't be feeling so betrayed after seven years of complete and utter (uncharacteristic) unselfishness.  For heavens sake one-quarter of Ian's life insurance proceeds are going to have to go to paying off a long term loan on his dream car that we bought on HP four months before he was diagnosed.  Everyone, especially the accountant, said get rid of it, but I said it was Ian's dream car and he deserved it.  I make that quarter the equivalent to seven years frugal living by me so getting a job after Ian dies will be a high priority.

Time to start being more selfish and looking after myself better.

Ian needed to know, Newbie, that I had gone away for Me Time because that spoke much, much louder than anything I could (or have) put into words.  He knows I have never, ever put myself ahead of him in the past seven years.   But I also explained to him verbally how betrayed and let down I felt that he wouldn't put up even a token word for me.

So today we set off for radiation and before we drove out I told him I would not be sitting like a biddable little wifey in the waiting room, just so he knew and we didn't have that discussion on arrival at the hospital.  I drove him to the door and said I would return in 3/4 hour and if he wanted to be picked up sooner, he could text.  He looked shocked and upset - clearly I was supposed to sit quietly in the car.  I went into town and had a coffee and a savoury and read a cafe magazine.

I returned a little late but he was even later, because he had to see a nurse about the vomitting side-effects he had last night.  Yes, people, he vomitted three times - the last time he had to tell me loudly how many times just to try to pull my "guilt strings" and I told him to take his health into his own hands for once and ring the hospice for advice.  So now the radiation nurse has suggested another drug regime.  He gets shirty when I dish out drugs, second-guessing everything I do, so I told him to write it on the kitchen whiteboard along with the rest of the drug regime and follow it.

Did I say I was calmer?? Not much actually.  I have lost my job (having been sacked by our business partners) and I have effectively lost all my friends (who are "giving us space," "have got a cold," "don't know what to say," or just plain haven't been in touch lately to even know that Ian's having radiation).

But worst I feel I have lost the respect and support of my very best friend, Ian.

Perhaps tomorrow I can post in a better frame of mind.

Good luck to all carers out there - we have a thankless task and it's made even harder when we let the enormity of what's happening to our loved ones into our consciousness.

Lorraine

Hi Lorr,  Angry at the medics, I can understand that, I wonder sometimes that they have no idea what the demands and stresses are on carers. After my hubbys 6 hour op I asked if he would be able to deal with stairs when he first returned home, and what he would  need   -        ' Oh he'll be fully independant, there's no need to fuss' came the reply.    -   Our lounge is upstairs and the loo is downstairs and we had been warned to expect incontinence for several weeks, so seemed a sensible question to me. I felt very surplus, especialy as my hubby said 'don't bother her, she's a very busy person'. (as if I was't) In retrospect I think he was just knacked and did'nt need to hear the hassle.   As it happened he came home with a bag for a fortnight. But after that we had to fight to get an assessment  as no an appt with the incontinence nurse   -   two month waiting list.

Not quite as far as you, but  25 miles from the hospt , who was driving him home from hospt, who was going to be dealing with the linen and washing, who was driving around hunting for stockist of pads?  Who needed to know if a comfy chair  needed to be hauling downstairs so on the same level as the loo, etc etc.    Silly woman had no idea.

While my daughter was having radiotherapy we had several appts when there was no nurse trained to give anti-sickness via a hickman line direct into the blood stream. This was when she was being very sick from chemo hence oral did not stay down, she needed her head bolted down so the radiotherapy could be lined up, such a brave 10 year old.  Me, I was furious and very scared she would choke.  We live on a knife edge watching and fearing for our loved ones, I think we can be forgiven when we go off on one if we think things could be done better.

We need the re-assurance as to what to expect, then we have something we can  deal with it and can be of use to our loved ones.  When we have no solid infomation it is so difficult, stressful and scarry.  You are in such a horrid place at the moment .  It's so sad to hear you are not your normal up-beat self,  but thank goodness we can come on here and be ourselves. 

You are such an inspiration to  all of us who are following your plite. Please don't allow the yesterdays, (or the tomorrows) to soil the todays.

I hope the treatment has eased Ian's discomfort, take care, both of you, gardenlady.

Gardenlady - what are you doing up at this hour in the UK?  I have the excuse that it is 5pm and a bright, sunny spring day in New Zealand - so what am I doing at the computer you ask??? Actually I was doing a bit in my garden as Me Time but I got so hot and flustered I sought the shade of my kitchen/computer desk!!

Thank you for your post.  It's lovely (but awful) to hear someone else with the same issues.  It shouldn't be necessary for us to have problems should it?  Ian was given a brochure at treatment yesterday entitled "Patients' Rights."  Needless to say there was no brochure with Carers' Rights!!!!!!!

That was all I wanted yesterday - the reassurance of seeing the room and being able to picture Ian and send my love to him through the walls.  I wasn't actually expecting to be the one with my finger on the trigger so to speak.

Thanks again for your understanding and compassion.

Lorraine

Hi Lorr,

Sorry there's a little bit of my former profession coming into play here. I know it's painful and guilt-inducing to feel angry about/against Ian but actually it's normal, neccessary and healthy.

At a very basic level the b*****d got cancer without telling you he was going to. I have tried to keep aware that, whatever I may think, (no blame, it could happen to anybody, poor Janet) at a deep level I'm feeling the b**ch got cancer which I didn't want any part of.

I know that's a "wrong" way to feel. I know she had no choice. I know she needs and deserves my support. BUT I didn't want to be supporting somebody through cancer and here I am doing it. Whom/what else do I blame?

So we set out to fight the injustice that someone we love has got cancer and we meet with..."We really can't tell"..."We need to take more tests"..."We'll try this treatment and see what happens"..."Sorry the results of that test were filed and nobody thought to act on them"...."Its a shame we didn't catch it sooner, the outcome might have been better"..."I don't think the delay is likely to have affected the outcome"....

We do manage to control our wrath. We say "Could you perhaps?... Is there any possibility that?...My partner is concerned about..."  whilst our poor shocked partners sit nodding and (totally innapropriately) smiling at whatever the medics say.

Then, when push comes to shove, we want to stay with our partners until the last possible second and they say "Go away, the nurses (THE NURSES!) don't want you here.
Jan actually went one better. She had a nurse on her ward who escorted her down to surgery. This nurse had phoned me at work because  Jan was crying and needed me there. We came to the scrub zone and, of course, I had to go. Jan's nurse from the ward (she had theatre experience) scrubbed up and followed Jan through to the operation theatre. The surgical nurses, according to Jan, physically evicted her ward nurse.

What is that about? Here's a fully trained theatre nurse who wants to bring her human relationship with a patient into the operation room and she's banned!

So sometimes the nurses don't even want other nurses to be present, let alone carers.

But what I'm waffling around is the basic thing that that you need to tell Ian, directly and simply, how that incident made you feel. You need to agree, in advance, how far he wants you to be involved in future procedures, and to both stick by those agreements.  Hospitals may point out that you could be exposed to levels of X-ray or other radiation that might damage your health, in which case you'd obviously change your expectation , but you need to have a game plan and both stick to it.

Please don't let Ian's perfectly understandable apathy(?) about his current treatments spoil your wonderful relationship in these last few years, months, weeks or days. He may not feel that bothered about whether you're there for the next consultation about the last attempts to prolong his life. He may be in a space where he actively doesn't want your optimism and zest for life to influence his decisions.

Obviously I don't know but the only way that you can find out is to ask him.

s***! I've apparently given some advice which I'm in no place to do. Sorry. Do what is right for you.

I really hope your love for Ian overcomes your anger at him. I kind of hope that you can agree a new way of dealing with his death professionals (as contrasted with health professionals) which gives you both ease,

My best wishes to both of you,

Russ 

Hi Lorraine

Just wondering how you are doing? As I sit here watching the rain fall and whacking up the heating (and gulping at the thought of our heating bill...!!) I'm hoping you've been having another spring day in the garden - it's good for the soul to be outside in the fresh air I always think. However it's a bit TOO fresh here - I spent the day yesterday outside FREEZING whilst watching my son's football practice and then at the other extreme watching my daughter's swimming (and in there it's like a sauna) and by the end of that my internal temperature gauge didn't know whether it was coming or going. Anyway just wondered how you are, and hoping you are OK (and personally hoping you are being a bit kinder to yourself... hope it doesn't sound condescending (not sure if that's the right word actually but you probably know what I mean! but I was reflecting as I was sweating/acquiring frostbite, about your comments eg being a very selfish person - I don't buy that at all and I do think you are very harsh on yourself... cut yourself some slack...)

Hugs,

Vikki