Friday, 8 October 2010

2010 - 7th October - Panini Hospital Stickerbook - almost complete.

So, been in a "bit of a mood" lately.  After feeling positive about my decision to go ahead with chemo - told Dr Tom on Friday and then we all realised I can't start till I've seen the urologist regarding the radiation scarring stopping my waterworks.  Awesome.

The weekend was painful.  Physically only, thankfully.  Saturday I went to Beckie's as mum was there with some olives and oil fresh from her latest trip to Italy.  I was already uncomfortable - perhaps from sitting in the waiting area for an hour on Friday?  I'd gone back to a full patch having tried a 3/4 patch which made me less likely to vomit and feel like a zombie, but didn't quite cut it on the pain killing front.  I braved Boston market for some veg and essentials plus a skin test at the Boston branch of where I'd booked a hair colour at the training academy in Spalding.  The pain didn't improve any so I didn't do much in the afternoon, had a long sleep (3 hours) in the afternoon.

Sunday I was up and ready for 10 when Beckie picked me up for a much needed shopping trip to Peterborough.  Although I've cleared out a LOT of my wardrobe (over half) I keep putting things on and realising, no they are also too big, I need clothes that fit, for my own self confidence.  Who wants to look like a cancer patient? My scales have no batteries but I think my weight has stabilised at 10st 5lb (last week's weight).  I wasn't comfortable when I got up, nor sitting in the car on the way there and by the third shop I felt I had to buy something in case I just couldn't manage another (which would have pissed me right off, travelling all that way to have a girly shopping trip).  Thankfully I found a few things but had to sit on the floor outside H&M while Becky paid for her stuff.  Time for a coffee break.  Becky queued for drinks (had to return mine since the soya milk was warm and obviously off since it curdled) I ended up with a black Earl Grey.  I put my head down and had a quiet tear or hundred and looked up to catch an old man looking at me.  He gave me a sympathetic half smile - I felt like he knew.

I felt so utterly miserable about suddenly not having relief from the pain - having seen the MacMillan nurse a couple of days before and told her I was fine. How am I supposed to cope in Dublin with a bunch of other people who have "normal" levels of energy, fitness and no pain?  The whole question of what I'm going to eat, what to do about juicing etc is bad enough - but I'll need to be sleeping for a couple of hours every afternoon, unable to walk far.  The thought of having an increased dose of the Fentanyl - more nausea/vomiting and more zombiness on top of being unable to really leave the house to do anything.  Is that living?  Not to me it isn't.  Things have changed so quickly in the last two weeks.  I can't help but feel it's the cancer taking over physically and at the same time chipping away at any mental control I have.

Monday I arrived at the salon - only to be kept waiting 20 minutes before being asked to sit down.  The student and teacher seemed to think I was asking for the moon on a stick.  I had roots which needed colouring and I wanted some slices or streaks of red/reddish blonde colours putting in.  This is something I've had many times, varying colours on a base colour of dark chocolate brown.  Gary has never had an issue with this, I have always been happy with the results.  Not so in the training room.  They got my colour notes.  It seems the problem was - they don't use the same products.  What?  Why was I allowed to book in for the services if they were unable to provide them.  Still in pain, I asked exactly what they were able to do that day?  They "should have had some hair samples first".  Well someone "should have told me" at the time I booked in?  A root touch up was all they could offer.  I can do that for £5 at home thanks.  So I got up and left, nobody followed.  In tears by the time I got to reception I thought I'd let them know how unhappy I was. I turn 40 in a few weeks - I'm very likely to lose all my hair shortly afterwards and while I still have long hair I want to look nice for my birthday, have a bit of pampering.  It may be a minor thing to anyone else, and ridiculous to anyone who can't afford to eat, buy clothes etc, but I'm talking about ME in MY situation - i.e. never going to have long hair again unless somehow the tumours stop growing for 2-3 years after it's all fallen out.  The rest of my life will be chemo - scan, wait, chemo -scan, wait.  My hair is not going to grow much in the waiting months.  I drove home in tears, wishing I didn't feel so helpless and hopeless or I could have spent time with my daughter - but couldn't see her in that state.  The owner's daughter offered to fit me in for colour in the main salon in a couple of hours - but I'd be in too much pain by then.  There was nothing she could practically do to resolve the situation, not her specific fault.  But I told her I didn't think I could face going back for my cut the next week.

I finally managed to stop crying at home long enough to meditate - which calmed me down and got things into perspective.  I decided to ring the next day and see if my stylist could also fit a colour in with my cut and sod the cost.  It's my last hair do (possibly) and since my hair thinned so much last time, I'd at least have to have it cut quite short again which I don't like.  Luckily he had space.

Wednesday - PICC inserted.  Up to the ward to wait for The Lone Ranger - this time (third) he opted for my left arm.  An hour in x-ray to see if it was in place properly, then to the chemo suite to have the wire removed and a temporary dressing.  Minor aching this time - no inflammation, some bleeding as the day wore on but a much better experience than the second PICC (veins already affected by first lot of chemo I suspect).

Thursday - Urology appointment with the new Mr Mad (that really is part of his name...).  Mr Mad doesn't speak with a very good English accent at all.  It was so difficult to understand what he was saying - I told him so he assumed he'd got the wrong patient.  No love, it's your accent I can't understand not the content of what you're saying!  After a frustrating conversation of impressing upon him that I was NOT leaving the hospital until I had a definite date for another dilatation and a promise of follow up to stop it recurring I was given 18th October.  Not happy with that, but no choice.  That means the next available chemo start date is when I'm supposed to be in Dublin, the week of my birthday, when my best friend is over from France?  Thanks very f@cking much.

So I went to admissions for an hour or so, more blood, BP low again (100/64) and MRSA swabs.  Back in the chemo suite I discussed with the sister that surely I could start next week?  The week before the procedure - how will my immunity be affected in just a week?  Or the day after it, on the Tuesday?  Just NOW, start it NOW in the vain hope that it will get rid of the pain and shrink the other tumours that aren't even bothering me yet, but are in fact slowly killing me.  She agreed the sooner the better, but getting hold of Dr Tom is another matter.  I'm back in on Wednesday for my line to be flushed.  I will probably find out then that in fact it will start on 25th October.

Happy birthday.

The Rock isn't being my rock any more, right now I find it difficult to speak to him at all.  He was horribly unsympathetic and downright horrible when I tried to get some kind of reassurance that things will be OK and I'll get through this.  She's welcome to him.  It will take a very long time for me to think of him, or talk to him the way I did again, if ever.


Tony Songhurst said...

Hey Lisa,

Thanks for the update. Sometimes and more often nowadays I walk out after sh@te service as can't be doing with people being complacent about doing the right thing and what they are paid to do...that is the difference between a great company and an okay company...

How often do you go to the hospital to get your PICC line flushed...I was allowed home from hospital and BUPA were contracted by the NHS to give me a home care service (mainly because I had to have fluids for a couple of months). They trained me to flush my picc line and even change the dressing although they also trained Fran as it was sometimes difficult to do it one handed...

I am so sorry for the pain, I know meditation helps and I also know of a very good pain control method called EFT...have a look at my wife Fran's website and download a tapping sheet to start you off and when you are ready send her an email or call her and she will talk you through it with my compliments! It is great being married to a therapist as I and people I know get free stuff! :-), just tell her it is Linda and Tony sent me!

That thing with soya, we used to have that happen a lot with soya that was fresh from the carton...I don't think it reacts well with coffee and sometimes tea.

I will stop waffling on, hope you get the pain under control...give Fran a ring she will be expecting your call!

Much Love

T xx

Loopy said...

Tony I certainly see the hospital as a business now. Except for the nurses, the nurses are the ones (odd bad apples as in any situation) who get us all through and always seem prepared to go that much further. I see my health as my job and instead of getting upset at ads for retired people "woe is me, I'll never be old enough to retire" I consider myself retired early. If I ever go back to work that's just a bonus.

My PICC is flushed once a week inbetween chemo. Chemo is just the 2hr infusion/bolus etc then go home with the pump - back for disconnection 2 days later (well that's how it was last time).

Don't tell anyone, but as I live alone I quite like the flush visits - always had good banter! I know some people actually stay in hospital for 2 nights each cycle and don't have a PICC - which to me seems incredible! I'd quite fancy that option if I thought I'd get my juices and decent food.

My sis and I have used soya milk for years and have never had curdling with tea. If you don't let water for coffee cool (as long as it takes tea to brew) then sometimes that would curdle (let me know if that works for you?) but Costa tea wasn't boiling (definitely off in this case) as sis explained to the enviably healthy looking teen on duty.

Kris Carr uses EFT! (Don't tell Fran) I wasn't sure it was for me, but I'm experimenting with things - a friend might be able to get me some NLP but not sure if that's possible. Thank you, I'll take a look at the site.