Wednesday, 28 December 2011

2011 29th Dec - More Cancer Faux Pas

A twitter bowel cancer fellow patient put me onto this link. Alison. I think unanimously we all said "hell yes that's how I feel" when reading. The author follows up with an article on what you should say. I tried to articulate my feelings a year ago but only received abuse because I was "obviously talking about how wrong x,y and z got it". Family fell out with me, yes the dying one (the people who saw themselves chose not to put things right quietly and think "thanks for telling me without face to face hurting my feelings")

I'm putting this out there because people keep getting diagnosed, 5 years of this crap and I've got used to a lot. Newbies into this adventure will be very raw and should be treated with more kindness. Comments in brackets and at the end are my own and accordingly more acerbic

You've lost so much weight. You look fantastic!
Thanks for noticing! My doctor says I'm malnourished.

You're strong and I know you can beat this.
Are you going to be disappointed in me if I die?
(also people will insist in fighting with me but how? It's in my body and I endure everything)

I read that kelp/almonds/asparagus have magical anti-cancer properties.
You should definitely eat some, then.

I know what you're going through.
Your grandfather's colostomy bag does not make you an expert on my medical situation.
(a classic - the number of people who know what I've been through because someone else had a totally different cancer even - I only know what I'm going through, my experience is unique to me, my family situation, my prognosis, my cancer)

That reminds me of when my dog/cat/gerbil had a tumor on her leg.
I'm sure that was heartbreaking for you.

God doesn't give us more than we can handle.
Define "handle."

(god is a non entity to me, I find it offensive you think he would hate me and my children this much should he exist)

OMG, I have/had cancer too! Let's be best friends.
Please stop weeping on my neck.

I know you don't want to talk about it, but I really need to.
Get a therapist.
(selfish, much?)

Cancer rates go up the less you exercise.
You're right. It's my fault I got cancer.

I am so impressed by how fearless you are.
Actually, I'm scared shitless, but I've gotten really good at hiding it.

(sneak round at 10am, 2pm, 10pm, 4am and hear me sobbing in bed/on sofa/in bathroom because I think no one can hear me. Who do you think I'm hiding it from and who am I protecting by taking this in my stride?)

I'm praying for you.
That kind of grosses me out.
(3people are, it does nothing for me and as I don't believe just let them get on with it. I know it's a waste -my attitude and strength got me this far)

I feel awful, too! I have such bad allergies this time of year.
You win.

Everything happens for a reason.
I'm beginning to doubt your intelligence.
(yes I've been a terrible person I need to die so the world can be relieved of my poison)

I had a friend who died from that same kind of cancer!
Wow, what a coincidence. Fuck you.

So do I, 2 friends Bec and Peter who were wonderful, beautiful people and I knew my path would follow their's that I am next from our group of Bum Bandits as we called ourselves half a decade a go. We met on MacMillan forums where I sought information from others. I diagnosed and staged myself from my endoscopy the day I actually was confirmed to have cancer and before lab results from hours on google images.

The others remain clear (and will remain so please) , if a little pleuritic (take more time off you loon and rack up more photo albums) and prone to hangovers in random European cities. Taking Caribbean holidays. They are really living, working, playing hard. Raising money obsessively - Peruvian treks, Killimanjaro, putting on cabaret events, the things I'd love to have done yet never got fit enough to do 3 peaks! Working stupid hours because they can. Trying to make sense of the fallout now 5 year sign off is here for them.

I'll be included in the 5 year survival rates (if I make it to June) weird isn't it, surviving can be pretty hard work.

They didn't have rectal, it was bowel cancer further up which gave them much better odds. I want them to go on living properly, working less in some cases. Relationships and babies when you've had cancer and chemo are possibly the hardest things to deal with and the deep hurt that never goes away with the potential consequences is something I'll not know.

I am thankful daily for the decisions I made - marrying and having kids so young. My life may be cut in half but I crammed it all in and can leave my fledgling adults behind knowing they can take care of themselves. More importantly I know I have the exact sort of loving, caring relationships with my children that I never had with any parent. All my sacrifices paid off, all my hard work, scrimping, working 2 jobs, never doing any housework when the kids were with me so it was all our time together. My only pain is that I'll not meet any potential grandchild and I adore babies. I have so much I'd like to teach them but then I read up on that too and had my plans for routines in place before I got to hold my first live baby. Both were happy babies and toddlers, slept 8 hours from 4 weeks, 12 hour nights from 3 months. I asked my mum during my last breakdown and depression if I'd ever been happy as a child. She replied, after a few moments too long "well I have got that photo of you smiling with a toy watering can". Says everything.

Virginia C. McGuire received her first cancer diagnosis when she was ten years old. She has heard everything on this list at least once.

Saturday, 24 December 2011

2011 24th Dec - Poor You, Stuck in a Hospice for Christmas

I've had a lot going on lately since my last post so I'll start with a diary list to catch up.
9th Dec - results of scan, Maurice rightly persuaded me that he should take the day off to accompany me given the time since my last scan, I may need a shoulder.
Having suffered increasing hip, back and leg pain plus 6 days of crippling head pains in the back I knew I had to mention them.
Scans obviously showed marked growth, my liver now looks half taken over, but most interestingly and almost a relief was the final reason for my 18 months of increasing pain ruining my life - close to my initial prediction a tumour on my spine, though higher than I'd imagined.  I mentioned the head pains, headache doesn't cover it.  Unprecedentedly I was sent for an immediate scan and back to clinic with results whilst sending Maurice off to get my new script for a steroid more suitable.
Back with Dr Tom, quick glance at the scan showed a single deposit where the pain stems.  He made a note of my new nice Mac nurse's name and said he'd call to let her know the lastest as she was already trying to get me into hospice for pain management.
I googled later and "thankfully" it's not the bit that changes moods or personality, just stability and movement.  So radiation to both new tumours asap and obviously this makes my prospects worse but the pain relief can be directed properly at last, from the first radation I know how fast it shrinks and reduces pain so it is a positive thing.
This is the reason I have never wanted a full scan, I knew it would go to my brain, like Peter and Bec, take away my freedom driving Izzy.  Losing my car is the biggest loss with this news, how glad am I that Peter buying his "end of life Porsche" prompted me to think "shit if it comes back I'll follow that path, bring on the convertible quick lets live while I can.
It was a terribly upsetting, long afternoon, lots of walking and waiting. I wouldn't have managed alone at all and it was lovely to have my friend there.  We got back and had a drive through to take back and then Maurice fetched me a few ready meals, then picked Karys up from the bus which she was very pleased about.  Neither of us had thought it would be such an emotional day
I told Karys, we were teary and she asked what they can do about it - radiation - so then we got on with watching the awful Black Swan.  We were really disappointed, expecting something really dark or chilling.  Maybe being hardened goth types we need a little more (or more suggestion than obvious in your face gore).
10th Dec - Time to have a chat with my son.  He's been so great, like Karys but he doesn't have the teary moments, even when the Dr told us this could be my last Christmas he just held my hand while I cried but stayed calm and strong.  He says he's fine, doesn't think it's anyone's business to talk to them but that he will talk to his sister if he needs to.  I'm so scared that he'll crumble when I'm gone or a while after that I'm trying to put in place some kind of net for him that he doesn't fall through and go wild, off the rails, angry at the world.  I have no reason to think this might happen, but how will I know?  Karys has her long term boyfriend, Phoenix is a boy with an unemotional father.  I'd hate my early death to ruin either of theire lives. 
When I told him how amazed and pleased I am the way they are handling things, being with me, carrying on just being so positive and supportive, his response was "that's because you raised us".
I cannot tell you after over a decade of abuse about abandoning my kids (shared care, I got weekends and 2 evenings), being no kind of a mother etc, to hear those words in that context finally wiped away all the tears caused by the haters, the ones who didn't understand that me working, while their unemployed dad cared for them was actually better than two unemployed parents on benefits spiralling down into worse depression was the right move for THEM.  Every decision, most of which hurt me more than anyone, has been for their sake to make sure they had the most stable, consistent upbringing.  I do not believe in fathers having crumbs of alternate weekends.  We made those children on purpose, we both love them, they need us both.  But still, recognition that my influence has rubbed off on them and helped them cope with all of this is a gift for him to see it that way, let alone tell me.
12th Dec - Monday Melanie Mac nurse visit.  Aware of my news, we had a short chat about that, a few tears - again about my final loss of independence and being more alone than ever.
Then the news that there is a space in the Lincoln St Barnabas hospice tomorrow.  Before she could finish the "I'd grab it if I were you regardless of it being so close to Christmas..." I was mentally packing. At this point I thought I'd be sorted and back for the big day.
13th Dec - Having ignored Lil the nurse at Beating Bowel Cancer about asking for Marie
Curie to stay to help pack bag etc I was feeling shit in the morning.  I crawled in pain, slid bags down stairs, myself downstairs, puffing and panting.  Idiot.  The transport (man with a car) arrived and after reclining the passenger seat all the way we set off.  I tried to sip a Fresubin to make up for lack of energy on the way.
The second I was in a wheelchair I was in agony, by the time I was crying in pain on the bed I felt sick and with nurses and a Dr trying to get me comfortable I threw up a few times before finally getting to my usual "best".
The next few days were spent titrating my new drug, methodone.  Gone are the crappy patches and breakthrough crack lollies, which no longer worked anyway.  I went to the hospital to have another radiation tattoo on my belly and my face mask made for the brain attack (whole brain).  Consensus finally is that the dose is quite low so I may actually keep my hair. I asked Phoenix to bring my clippers in just in case.
Saturday morning I started hurling again every couple of hours, made more miserable knowing my friend Katie was trekking from Manchester via my house to pick up Karys.  I wanted to be looking better, able to enjoy my visit, instead I just slept in the dark until they arrived.  I still improved while they were here so they could see I'm still in the right place, pain management just takes time.
18th Dec - Sunday Katie swung by on her way home and Maurice and Sue came too.  By this time I'd had a methadone syringe driver fitted so I was feeling and looking much better.
Radiation started and ended this week, Monday to Friday.  First 2 days a wheelchair and taxi were booked - first taxi I couldn't get in without tilting my head!  I tell ya, I'd treat you to some comical insights but I was in so much pain in the chair (later changed to stretcher ASAP) I couldn't draw on my own humour.  We ordered a Fiat for home.
Having been sick in the morning I was also sick after dinner, but I'd felt queasy in the taxi.
I don't like random sickness :o(
Ambulancemen got me there and back in 45 minutes - Monday was 2 hours, Tuesday 1.5 hours.  In a chair, in pain - better Tuesday because I had injected morphine before going - again the importance of being in a hospice, that doesn't happen that fast in a hospital, things take days and they pussyfoot about.
Maurice has been a couple of times this week breaking it up.  The radiation tiredness oddly kicked in from day 2, increasing of course. Insides definitely upset but apart from that feeling better already.
The hospice food is awesome ( 3 courses), nurses as you would expect, special.  Also they have upstairs accommodation where the children can stay.  They are coming on the train today (I hope) so we'll have our Christmas in a lounge (not my room) which has a tv, fireplace, table.  It will be as close to home as they can make it with the incredible advantage of on hand pain relief I wouldn't have at home, instant help should I have any problems.  The children don't need to do anything for me or worry about me.  It's ideal.  No washing up.
Maurice has offered himself as chauffeur, knowing I have nobody else to ask, by the fact that I'm not in contact with anyone else regularly so feel unable to call in a favour after months of silence.  As such on Boxing Day he's driving up from Watford where he's visiting to come to Lincoln to take my babies home.
"Stuck in here for Christmas?" Yeah, right.......

Monday, 5 December 2011

2011 5th Dec - Till You Go Walking In My Shoes

Can you put yourself in my shoes for five minutes?

Five days a week I spend 24 hours alone, in pain every time I get up to get a drink.

I lie on my sofa, I cannot sit, the pain is worse sitting up and lying on my left or flat.  I watch TV, because what the hell else can you do confined to bed/sofa?  I play some games too but for company, the TV is on.  Yes I watch shit I would hate to admit to a couple of years ago, don't criticise me for it, it's my way of coping with the quiet.

I have no appetite so force a yoghurt, piece of toast and maybe a ready meal down, sometimes not even that much a day, it's too painful to get up.

So I lie on the sofa, then go to bed, woken a few times by pain if I roll from my right side. No visitors - other than district nurse monthly.

Just sit and imagine how that would be for you, alone for five whole days in a row nearly every week for months on end, how isolated and lonely and miserable might you feel with nobody to help, get you a drink or make you a meal, make you comfortable when you're rolling about in agony unable to get comfortable. How would that feel, would you feel happy?

My right shoulder hurts from never being in a different position. Thats my life. My existence.

Yet most days I somehow manage to put all of this away and still be happy.  I get odd texts from the BBs, emails from my daughter in the evenings.

Luckily my one friend (BBs and long distance excluded) calls sometimes daily to chat about anything and everything. If I'm feeling shit I might mention it, or I might not to distract myself for that half hour of escapism and contact with a human being. Sometimes I fall asleep around the time he calls but he still calls. It's just enough to manage, if I had lots of people ringing daily I'd go mad but nobody did until he started.

Oh apart from my mother with this list of questions/interrogations making me think once more about how crap my life is:

How are you eating (same as last two years, I have NO appetite)
How is the pain (I was trying to block it out but now you ask, fucking shit)
How are you sleeping (in my bed/on sofa, woken by pain same as EVER)
How is your mood (since I knew you'd ask all these questions I'm pretty angry/distressed now)
Have you seen the children (yes every sodding weekend like I keep saying)

I finally told her to stop, she said she thought I'd prefer to talk about myself than hear anything she had to say? WHAT? I'm so sick of myself and my weekday existence if it weren't for the weekends I'd give up now. What I suspect she means is she needs to update her online "friends" so she sounds like she is a proper involved mother. Unlucky. After her husband wrote a very personal, detailed, incorrect article about me without permission saying I MUST have chemo asap after surgery I won't give her personal updates any more for fear of what else he will twist. Nobody tells me to have chemo, nobody. The chemo does NOT make my tumours disappear only to reappear again, it never has, it slowed growth in my lungs and shrunk a bit of the liver tumours, all of which have increased again, possibly a lot. His article was a load of rubbish and after taking it down he wrote a carefully worded apology which didn't really feel like one.

After finally confessing I cannot cope with their forced week long visits every few months (every afternoon they sit here talking about nothing, I feel old in their presence, if I want to do anything I can't for a whole week because they insist on coming every day) my mother has refused to visit without her husband so I shan't see her again, this is where we were 3 years ago when I was having chemo. She chose him over her sick daughter, she's done it again. No visits unless he comes, attached to her like a limpet. That's love for you.

When my kids are here at the weekends I won't cry like I do at night or during the day when I am so lonely and miserable. This weekend Karys got upset and it breaks my heart that I'm hurting her and can't stop it.  We had cross words about a misunderstanding and she was mostly upset that she got cross with me because we have so little time left.  We had a cuddle on the aptly named cuddle sofa and I told her I'm just trying to give her all the advice I need to before I go to help her cope with life without me there. I told her we can still disagree on things, that I can still be wrong.

I'm going to have to talk to my son soon to see what he's keeping inside.

The Mac nurse (new one) has increased one drug by a third, it's no where near enough. Now I've had my scan I hope she can get me a hospice bed to sort this out. My quality of life is the reason I stopped chemo but still it's eluding me.

I'm trying to prepare for the end of my life, sorting my mortgage, my will, letters to people, my funeral, what to do with my belongings, making sure my paperwork is filed and easy to find, making memory boxes for my children. Oh and I'm still trying to survive day to day in all this pain.

Please don't ask me to tell you how to deal with my illness, how to communicate with me, what to say and when.  Your day goes on as normal, perhaps tinged with sadness some days or the odd tears, fears for yourself or your children.  You can still work, play, go out, have friends who don't abandon you because your illness is "too much" for them to cope with.  You may have your own troubles with money, work, relationships or health but unless you've walked in my shoes you don't know how hard this is, alone.