boosmum's blog

No brain mets, just multiple mets everywhere else in only 9 weeks!!!!

2009-10-22T17:26:25Z

OK folks, not sure where I got to lasttime but we went to Guy's for the results today. It wasn't brain mets, but something caused the stroke, possibly at surgery, but he is already getting more movement back. On the less than positive note the CT scan showed mets that were too many to count in his abdomen. There are 3 main ones of 4cm, 2.5cm and .8cm and a shotgun style scattering of mets accross his whole abdo currently too small to measure. This seems incredibly fast growth to me as nothing was visible on 5th August when he was scanned before surgery and just seems to confirm the incredibly aggressive nature of sarcomatoid and rhabdoid kidney caner.

Bizarrely he is happy!!! He starts first round of sutent tomorrow and he is happy cos he is getting some treatment. We start the marathon 15 hour drive to france at 5am Saturday morning.

I feel like I have been hit in the face with a kipper. We had our 9 year old in with the onc the whole time and she took it all on the chin. At one point she said "well I just didn't get any of that. Please can you explain it properly".

This onc was absolutely great but husband doesn't get it at all. hey ho if the notes on the box are to be believed we are in a for a fun holiday!

More news soon from the rainy shores of Lac de Biscarosse

all the way to the birdy boiler...

2009-10-13T22:00:39Z

Sorry crap line from the Lion King that keeps creeping into life.

Did I mention that he probably has brain mets? that he has had a minor stroke? That the house is a tip, that I am trying so hard to hold it together and failing badly????

I was doing OK but am having a crap evenign (probably due to the near bottle of wine I have drunk)

Feeling shit, feeling scared and angry again. What is it with the anger? I could rip people's head off when they try to be kind and do the "I know" great aunty flo had such and such and made a miraculous recovery/died in a month etc.

Its not their fault but it makes my angry. Sad too but mostly angry. In the mos ttruly selfish way why do I care what happened to them, this is happening to me, us, him, now. On the more real level how does this relate to us? On the most with it moments... this person is trying to be nice and offer empathy sympathy and general care. Even when I need it so badly I feel I am rejecting it, closing in.

Sorry for the rant, one of those dark moments crept up and bit me on the behind.

I really do appreciate the care and love that surrounds us, but resent finding out how much he is loved by those who matter (ie those on here, friends and definaelty not his sons namely the stepshits) only when it it is so difficult. Maybe they only just realised how much they love him, rather like I have when it seems he will be whipped away.

He drives me mad and always has done, but that is one of the things I have always loved about him. Madness grows on you!!

Twists and turns

2009-10-12T17:43:54Z

Well originally I was going to write this every day, but life overtook me a bit.

Son's 18th went well but rather quietly. Blew money on a big LCD TV for him which I can't afford but what the ****.

Onc phoned on Saturday in a rather late response to the email I sent asking questions because we had been given no one to ask anything of.

The wonderful onc nurse at Frimley had already arranged for husband to be seen by an onc at St Lukes this Thursday morning so we now have a full week but at least the Frimley people can communicate.

Anyway, whilst Onc was trying to answer my questions and explain why no sutent or any thing for my husband I told him that he needed to be aware that husband had had a problem with movement of hand and foot etc and that GP had said it was muscular but would send him for a bone scan. I told him I knew enough biology and physiology to know it wasn't muscular. he agreed and asked husband to go up to Guy's first thing this morning. Husband argued and told me I was being melodramatic and everything but eventually went today (do you see a pattern forming here). Anyway after loads of tests they have concluded he has had a very minor stroke (scary enough in itself) and it is probably brain mets. He has gone to bed now as very tired after doing the train journey etc.

Medical appointments this week now total today at Guy's, Thursday am St Lukes to see other Onc, Thursday PM Guy's for CT and brain scan Friday Frimley for bone scan and King's to see surgeons.

All this plus an appointment a week to deal with daughters broken hand I feel like I should camp at a hospital, the tricky bit would be deciding which one!

Not sure how I actually feel at the moment. There are some very weird emotions, but on a postive note, if it is confirmed now that he has mets then he will get treatment. No mets means no treatment and giving this monstor 3 months at a time to go undetected and grow to lethal size.

I keep trying to think of something else to say when people ask how he is doing, crap? brilliant? or the complicated truth?

Even more weirdly no word yet from the stepsons, 40 minutes each with him whilst he was in hospital and obviously not going to die that week and then they don't contact him again. I keep waiting for a valuer to turn up at the house!

Hey ho enough whinging. I'm off to do dinner - a fiery curry for me and my daughter and a more gentle korma for husband. Then back to the computer to get on with earning a crust and finding some scraps of cash to pay the blood thirsty hounds at the door.

Evening all.

Today he went to the DR's!!! whooo hooo!!!

2009-10-02T17:17:51Z

Well he went to the dr's in the end. Not his GP but a locum. Says the pain/non movement of foot is probably muscular but has ordered a bone scan anyway. He also prescribed the painkillers my husband had a massive allergic reaction to in hospital!!!

Husband is grumpy and miserable, but I think it is just being in limbo that is doing it really.

His KC is a particulary rare type of RCC with sarcomatoid and rhabdoid features. They are still debating whether the clot on the lung is a clot or a tumour so we have no treatment yet.

On a more positive note it is our sons 18th on Sunday and he will be home from college for the weekend. Eventually after he stops off at several parties tonight anyway! I'm just glad that we are all here to see his 18th which back on the 29th June we weren't too sure about!

Sorry for being grumpy yesterday but I am really knackered!

Still off to the caravan in France for half term and can't wait!! Ok so it won't be the summer we missed, but it will be away, he will be with friends all the time and the kids can have a bit of fun.

Anyway have to sign off now and clean the car before hitting the ice rink tomorrow.

Love to all.

Boosmum's kidney cancer blog - God I could scream!!!

2009-10-01T17:50:47Z

OK first time blogging so I'm not sure what I am doing.

God I could scream just about sums it up. I am fed up with his cancer!

I am worried and scared.

Came home from work this evening and he calmly informs me that he can't move his left foot properly. He sat on the sofa and sort of pulled his toes towards him, the right ones moved a good couple of inches, but the left ones moved maybe a cm. He then informs me that his arm feels heavy and his left hand feels a bit funny. He has had some back/shoulder pain over recent days.

He refuses to let me call the dr and when I said it could be serious we had an argument. He knows it could be a minor stroke, and still won't call the dr even when we talked about brain mets. He says I am being melodramatic and that he won't tell me anything next time. He has now gone for a walk to the shop to buy cat food.

Am frustrated and angry. To top it all stand in GP won't write the referral for second opinion to Tim Eisen until we have spoken to current oncologist. As we have no way of contacting the oncologist for an actual conversation and no appointment until the end of October and emails have been ignored for a week it doesn't seem likely we will get anywhere. We have no macmillian nurse or anyone whatsoever to contact. Very very P O'd today!!!