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.

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

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.

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 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

Funny you should say "Cut yourself some slack" Vikki.  Our social worker has said the very same thing to me several times in the past.  P'raps it's time I started listening to other people's advice eh??? 

I would love to be talking about all the last few days have brought us to our social worker - but wouldn't you know it, our ravving about the gorgeousness of cruise travel hit its mark and she and her husband and little girl are cruising in the Pacific Ocean as I type.  It's so crazy that every time Ian and I have huge issues, Andrea is somewhere exotic - does she have radar for tough times ahead hahahaha!!  Last year when the Cancer Support Nurse on the chemo dayward told Ian "he was dying and he might like to cease chemo and enjoy his last days in relative good health" we needed Andrea badly to put that advice in perspective - and she was in Nigeria at a friends wedding   Now, she's floating about the Pacific, sipping cocktails and playing deck quiots   I don't know - staff!!!! Hahahaha.

I am up and dressed and ready to drive Ian 30 miles to radiation.  But I am adamant I will not go to the waiting room with him.  From arrival to departure is only 15 minutes anyway and I have better things to occupy me than obey the nurses instructions last week to Ian "to leave your valuables with your wife." Do I look like a rotweiller?? No - don't answer that!!!!

By complete spooky synchronicity, just as I had given up finding a home in the suburb of my choice, facing the North for maximum sunshine and outdoor privacy, built in brick - not plaster (one of Ian's pet hates with NZ's problems with "leaky" plaster homes), without interior guttering (another of Ian's bugbears), with enough lawn and deck to keep the cats occupied, a bit of raised veg garden to keep me off the streets, within walking distance of a little shopping centre, on a bus route, I found THE HOUSE.  When I did my "hissy fit" on Saturday and went to the duck pond I bought a newspaper and was flicking through the real estate pages.  KAPOW!! There it was - the house I can picture myself living in for years to come, in "my" suburb, close to (but not suffocated by) the city with cinemas, cafes, big library, amateur theatre and maybe the better chance of a part-time job than our tiny little town with so many people who turn their back on me knowing Ian is dying.

So I will drop Ian at the hospital and drive to the real estate agent - praying to the Angel of Real Estate that the house hasn't sold.  I will get an information pack and make a tentative booking for a viewing tomorrow after radiation.  If all went well, we can divide our time between both houses.  When Ian gets really sick we would be just minutes from the hospice in the "new" house which would be so much better than being 40 minutes away.  And best of all, we would have some history together in my new home.

Could something be going right for a change......................?

Lorraine

Hi Elkay,  So pleased you've managed to talk and things are looking up,   sounds very strange looking for a house facing North, but then we had hail and ice outside the back door last Saturday and your coming in to cool down.....   Really hope the house works out it will  give Ian some re-assurance knowing your sorting things again!  In your own way of-course.  Going off on one give us time to re-focus, thank goodness for ducks.

How much do they pay social workers down in your neck of the woods, must be better than here.

take care, gardenlady.

Hi Lorraine,

Hope the house hunting is going well and more than that that the radiotherapy is becoming more or less routine.  Moving in the middle of all the rest that's going on seems both crazy and a good idea so all the best with that!

Expat x

Hahaha Expat

Took my eye off the ball real-estate-wise!!  The gorgeous house that was so "very me and Ian" was listed two weeks ago and some expat Kiwis coming home from Australia with lots of valuable Ozzie dollars recognised a great buy when they saw one.  They had a contract on the place when I enquired on Monday and went unconditional yesterday booohoooo.  The agent I spoke to took us to a lovely home yesterday on a back section, so claustrophobic with houses out every window and I swear I'd have topped myself within a month of living there on my own   She saw our reactions to it and swears she won't waste our time again - we need "big sky" if not actual long distance views after having views 15 miles to the east and 5 miles to the west.  She's got two houses coming onto the market in the next ten days or so but they will have to be gorgeouser than "the house we lost to tempt us to pack and move."

Yes, radiation is the New Normal and quite routine now.  Today was the first time I waited in the waiting room for Ian - I usually go for a coffee or something - but a friend drove us over today to save me doing so and it would have looked odd if I'd not accompanied Ian in.  The obnoxious nurse wasn't at radiation so I didn't run into her. 

After we had "reconciled" Ian offered to request a viewing of the radiation suite for me.  I pointed out I didn't need to see it now.  Going with him to the door and getting a picture in my head of where he would be was just part of my coping mechanism on that first day - especially as no-one had told us it wouldn't be painful.  Seems silly now, but we were both too scared to ask if it would hurt.  It was only as the nurse walked into her protected area that she said "This won't hurt."  You can imagine the flood of relief for Ian - and me when he told me 10 minutes later....

Today was No5 - half way through - and it seems to be helping as Ian doesn't limp any more and he can raise his left leg up high without pain.  He's still on morphine - two long acting tablets twice a day now rather than elixor - but he's cut out the paracetemol without any return of pain.  The word "discomfort" is no longer in our vocabulary - he can see how it put everyone off the scent and they all thought he was happily pain-free!!!!!!!

How's things for yourselves - did that postponed chemo get underway????

Lorraine

Hi Lorraine,

It seems things are sort of trundling along for you two.  I know nothing about radiotherapy really except that it can cause fatigue but I hope that it achieves what the team are looking for.  And let's hope that estate agent really has understood what you're looking for.  We were lucky with our current house in the UK - we were renting where we needed to buy and I saw a 'For Sale' sign in front of a lovely house when we'd been there a couple of weeks and had just about started looking.  The sign had just gone up; we were the first to view, it was the ONLY house we viewed, and we managed to buy it!  Hope you have such luck with these new properties.

The postponed chemo eventually went ahead last Wednesday rather than Tuesday; I gave all the Neupogen injections, but on the Tuesday the nausea/throwing up was too much to get to the hospital.  Wednesday was unfortunately a bit chaotic - the Oncology unit was organising a conference over the weekend and was going to be closed on Thursday, so there were patients everywhere, my husband's oncologist doesn't have a clinic that day but was on the wards... blood tests went ahead and were good, the chemo went ahead, but between them Doctor and husband both FORGOT about any prescription medications.  So that is still to sort out. And must be done today as tomorrow is a public holiday and then it's the weekend again. Meanwhile Avastin nosebleeds have started with a vengeance so I need to make sure I keep the red and other dark shirts in circulation, and the red pillowcases on his side of the bed.  Less alarming to look at when you wake up in the morning... you get my drift.

I booked tickets to England for Christmas but I can't work out whether it's a terrific idea (the cold! the risk of infection! the jet-lag!) but husband wants to go.  This is the man who these days feels he can't leave the flat for much, not even an evening out with friends, because of the diarrhoea and (increasingly) nosebleeds as well as fatigue.

So that's how we are.  You did ask...

Take care, have some fun and some hugs,

Expat

Hi Expat,

I was just checking-in and clocked your post.

I'm sorry to hear that you're both now coping with so many obvious symptoms as well as the underlying illness and it's treatments.

If your husband wants to visit the UK in December, there's little, short of a full psychiatric assessment to have him declared mentally incompetent, that you can do!

I guess none of us ever know what it's sensible to wish for each other. Obviously "hope he gets better" is crass and stupid. "Hope you cope" puts a burden on you. I'll just settle for wishing you the best possible.

Russ

Hi Russ,

Thanks for your wishes.  We lurch along - I go to work and to choir and keep things going on the domestic front and my husband spends most of his time at home.  The last lot of chemo (should have been last Thursday) was postponed because of poor blood count and this time they tried a blood transfusion; we will see whether the effects last until Thursday this week. The flight booking is still 'live' though... and at this stage if we changed our plans it wouldn't be easy to get our 3 children to come here instead.  We shall see.

I hope Jan is doing well. And your alotment still lookes like an alotment rather than resembing a swamp.  And Lorraine, I hope Ian is doing well too. Good luck with your house plans!

Expat