My story

Looking forward

2010-01-21T19:46:41Z

Hi all,

feeling a bit naughty sneaky this is while hubby is in the shower but I feel that I shouldn't be sharing all my thoughts with the world even though many of those reading are in similiar or much much situations than ours.

Anyway, we got to day 7 of the Sutent before it took it's toll on DH and he has been unable to go work today. Getting up at 5am is hard enough (so I've been told) when you are healthy so I can only imagaine how it's been for him to get himself up while on the treatment. I left DH in bed and went to work, when I spoke to him later he said he wasn't sure if this was the tablets or flu because he just ached and felt shattered, it does seem a little early for the tablets but then he is on his third course so I guess you have a bit more in your system each time so the side effects will start earlier. His shoulder has really been hurting him as well and any change in position sitting down or lying really hurts him yet they said that the tumour hasn't changed?

On the plus side we have decided to go to Mexico as soon as the next round finishes and DH has been scanned. We are splashing out on a fab hotel and premium seats, I'm a munchkin so I don't need the extra leg room but the free drinks will go down nicely and it's something we've never splurged on before so as we are assuming this will be our last holiday abroad we are pushing the boat out.

I did email the Prof's secretary on Monday double checking that we are OK to go even though the other doctor said it was fine. I also asked about how to get a Macmillan nurse as I don't get to speak to anyone professional on my own and in the same way DH may have things he wants to say without me hearing as I always go with him to his appointments, anyway it's Wednesday night and I'm still waiting for a response!

Been convinced to watch some alien thing now. Big hugs to everyone and keep smiling. :-) xxx

OMG!

2010-01-14T17:54:05Z

Wow, can't believe that so many have actually read my ramblings and taken the time to comment. I thought I'd been such a mardy bint! Thank you soooo much!

We went to the hospital yesterday both quietly contemplating what was going to be said. Clinic was only 30 mins late (was over an hour last time). We didn't see the lovely Prof but one of his registrars which I think is always a good sign when they delegate. I don't know if all the doctors are the same but ours seem to get us to repeat everything first and really draw it out before giving you the actual results. Bit like on a previous visit for scan results when they started asking DH if he'd had any back pains and if his stomach hurt so straight away we're thinking that it's all gone horribly wrong and then while we were bracing ourselves for the bad news she breezes out with 'Your scan was absolutely fine, no change'. Why can't they just say that first and put you out of your misery, give us the good news first and then we'll make small talk? Yesterday was the same the doc who so ridiculously posh it was almost fake sounding and who quite bizarrely carried her handbag in and out of the room with her (maybe the Prof is not to be trusted?) Anyway she goes on for bit about Sutent side effects and then asked why we'd stopped for a longer break?!? HELLOO because you said there's no point until the liver thing was identified to which she says 'Yes that all fine, nothing to worry about' Again why don't they just say that first?

We were both quite shocked at the good news having thought the worst and planning an imminent Caribbean escape with our DS who is 5 but DH's plan is to have two more courses of Sutent, then go away to Mexico> We were booked to go last year but it got cancelled because of all the swine flu! Because of DH's cancer we went for the Dominican as an alternative on the same dates and the weather was rubbish. Still sunburn is never a good look.

We toddled off to the pharmacy much to their annoyance because it was five minutes before closing and the rather uppity young girl asks me if DH pays for his prescriptions, I was very tempted to give a snappy 'have you looked what the prescription is for?' but instead I politely showed his exemption card and shook my head when I sat down. Later that night I'm gathering the collection of pills for DH when I noticed that he's been given the wrong strength. Instead of 25mg he's been given 50mg which combined with the 12.5mg would have knocked his socks off, so much for the careful checking and double checking of the staff who'd signed the box. Bet it was the stroppy one from the start! DH went back this morning to change them and he's been promised a full investigation and that we'll hear from them. Bet we don't! I emailed the Prof though to make him aware because it's not exactly cheap stuff to have to chuck away if we had opened it and it really is bad, DH is as blind as a bat and would never have spotted it . 'No, there's nothing wrong with your liver but we'll just give you an overdose'

I told Sam that the tablets had worked and that 'Daddy is a little better' and is having some more. We are very open with him about hospital appointments and so on but he doesn't know how bad it is. My mum is so funny, she talks in cryptic code when Sam is there. We told him about our friend who died in the summer from a brain tumour and explained about him having something growing that stopped his body from working and he kind of accepted that but we have only said that DH has a poorly shoulder and leg. That's all we can really say at the minute because when everything works in sleeps the whole concept of time doesn't quite fit in with telling him that his Daddy isn't going to get better. He'll want to know how many sleeps are left and if it will be before Santa comes back!

Also feeling very sore after falling on the ice an impressive three times walking back from school yesterday morning, on the plus side I think I'm closer to my 10,000 steps because I'm taking tiny baby steps everywhere - does that count? Roll on spring!

Off to make a brew and assist my young Jedi on Lego star wars, he is truly addicted but it encourages him to get dressed very quickly so he can have a play before breakfast so thats a bonus. Very therapeutic this whole blogging thing, it's like being a teenager again with a secret diary!

Lots of love to everyone xxxx

Ooh!

2010-01-12T17:59:00Z

New to all this blogging stuff and hoping that getting stuff off my chest will help. Sure nobody will read this, ranting is never very entertaining.

Tomorrow we go to see the lovely (though never has any good news for us) Professor. Our last visit, 2 days before Christmas was to find out if my husband’s 3 months of hell on Sutent had done any good, we wanted a 'yes it's great' or a 'no it's not worked', no shady grey areas please. However, what we got was. 'Well two tumours are the same' (good), 'one tumour is slightly bigger but looks better in the middle so the tablets have worked' (very good) 'BUT we have found something on your liver but we don't know what it is' so maybe it's not worked after all (oh dear).

On the plus side they spotted some things on DH's liver a few years ago which sent us into a major panic and turned out (4 months later) to be just some random harmless spots. Obviously we are trying to tell ourselves that these are the same spots making a guest appearance after being rejuvenated by the Sutent.

At the time there was no secondary tumours, now there are three, can we be that lucky again to have another false alarm?

DH is really not well with shooting pains from his shoulder (where one tumour is) and being very bloated and uncomfortable in his tummy. I've of course tied this in with the shoulder pain that you can get with a poorly liver. Obviously I've not told him this, maybe he googles less than me.

A lovely but slightly sad Christmas and New year later and we go back tomorrow where all the old scans on file should have been compared to these new spots to confirm if they are the old ones (all good and the treatment is working) or it has in fact spread to the liver. I really hope they have a definite answer, we need to know, the uncertainty is killing me. You can deal with facts, you can make firm plans and get on with life. We are not in a position to waste 6 weeks waiting for the spots to either do something or be identified as harmless when time is not in great supply.

We have decided that if the news is bad we are asking the Prof if we can go far away for some sunshine while DH is well.

I'm feeling very teary and emotional, as I always do in the days leading up hospital visits. Wrong song on the radio and I'm in floods. New waterproof mascara is doing me proud though, LOL!

Will keep smiling and keeping it all in xx