Tuesday, 19 October 2010

Home. part one of my adventures at the Royal Marsden

Isn't this a great shot of Derwentwater? I love the lighting

I am finally home. Arrived back from hospital on Sunday night after one of those 'will I ever get out of here?' difficult mornings. I was in there for eighteen nights.It was a five hour journey and mercifully it went pretty well. I slept for most of it.

It sounds like a long time but it went pretty fast. I remember very little of the first week particularly, I was in ICU for most of that. All I can remember of that part really is hallucinations, and Pete visiting and having to wear a pale pink apron which caused some smiles amongst the family. ICU ( intensive care unit) is like Star Wars. Just a lot of screens and machines and wires. It is very alien and odd. The care is one to one 24 hours, and so specialised. Like being a new baby again.
One morning two teams of doctors came in at the same time. I was drifting in and out of the scenario, but i remember it well because there were so many of them, and all I could see were peering faces. I felt like 'exhibit a'. Two of the more senior doctors were having a disagreement about something. I forget what now. Lots of people were loading notes in laptops. Most of the doctors didn't look much older than teenager to me. All peering at my wounds and discussing them.
I was lucky regarding the aforementioned hallucinations. They were very weird but I wasn't frightened by them which I think can happen to some people. Caused by all the different medicines and drugs, they sure do alter the mind. I told my mum (who was with me during the ICU period bless her heart- just sitting patiently with me) that the nurses bay outside was a toy shop, a book shop and then a chocolate shop. I then decided it was a library. I could see a lot of space type figures wandering around (especially stormtroopers), and I also decided that we are all really IPODs and all we need to get better at things is to be upgraded regularly ( i.e. - if you want to be a tennis pro, get an upgrade. Learn Italian? Get an upgrade etc). It would be good if life was as easy eh?
It must have been hard for the family to make sense of me making sense of my world in there. Other than the strange visions, I also used to use the wrong words to describe what I wanted, and would regularly fall asleep mid sentence, totally denying that we were on the subject when I woke up again.
The operation I had was huge. I can't really say exactly what it was because the title is a paragraph long full of latin phrases. I did ask for a short version and was told the nearest is ' a total right side pelvic re-section'. I think that will do. It sounds general and large scale enough. Lots of people do ask about it and its good to have a simple short reply- not that it really explains a lot. Lots of slicing, strimming, removing, and painstaking work. Oh yes- and I now have no bladder. This will be a different post altogether ( I bet you just can't wait). The tumour has completely gone. That was the complex bit- so near the sciatic nerve and 'involved with' so many different parts of the area, it is a miracle they got it.
Those of you with a less medical disposition can avoid the 'no bladder' post but I want to be honest and open about it all in the hope it may help someone else in my position. Anything that supports someone else is worth writing about. If it raises awareness and helps us all know and appreciate what others are dealing with, or could be, then it's worth writing about it. As regards the bladder I wasn't sorry to see the back of it. I had done me great service but latterly it was causing me some really big problems. It had to go and I have accepted it. Now I have something caused a urostomy bag. Another post that one. I was told I may end up with a colostomy bag but didn't in the end: that was very fortunate. I was pleased when I woke up and found out.
So now I am waiting for the district nurse. The post surgery/ wound dressing circuit that I am sure a few of you maybe familiar with. This afternoon the stoma (urostomy support) nurse is coming to see other half and I. That will be good. We would like some help- it is a lot to take in and learn.
And I will relax like I did yesterday. Spend time with my beloved mum ( she is bringing me a latte in from Costas!), hang out with teenager who is on half term, read blogs and play on facebook. And most of all enjoy looking out of the window at the autumn colours, appreciating that I am alive and feeling better every day. Thanking God.

41 comments:

Hadriana's Treasures said...

Dear Lakeland Jo,

Thank God it went well and that you are feeling better. So pleased to hear that you are back at home after those gruelling times. You sound so full of life which is super to hear!

So happy for you and I'll read the medical post come hell or high water!

Take good care and happy recovery. Big hugs Hadriana xx xx

Sage said...

I knew from what you had said that the operation was a big one, but I perhaps didn't realise just how big... the long road to recovery starts here and I hope it is smooth and full of hope and happiness xxx

Trish @ Mum's Gone to... said...

I don't know you, Jo, but knowing you pulled through and are at home now has really made me overjoyed.

Gill - That British Woman said...

oh my goodness me what a lot has been happening to you.

The one thing I got from your post is your positive attitude and your sense of humour, I praise God that you have it, as lesser people would have cracked with what you have been through.

I agree that photo is just gorgeous and makes you glad to be alive.

Take care Jo, I will be praying for you to be back on your feet and as right as rain as soon as possible.

Gill in Canada

Maggie May said...

I am so pleased that you are back home and that everything has gone well.
it has been a long haul, hasn't it but so glad that they could do this op. I had never heard of a urostomy but I am sure you will cope with it.
Just take it easy now and don't try to do too much too soon.
Luv Maggie X

Nuts in May

Busy Bee Suz said...

Jo,
I am just thrilled to be reading your words. I was really worried about you and prayed for you daily. (still do)
Your hallucinations did make me laugh and I am hoping we can all one day upgrade and get some new 'apps' for ourselves. :)
Sorry you have had to go through so much, and you still will I am sure. Getting used to different things working different ways will be a challenge.
I LOVE your outlook...you appreciate every little thing and this is a lesson I am trying to learn as well.
xxoxoxo
Suz

Anonymous said...

Jo! I seem to have missed last week's post - although I did check in a few times, sorry! I have kept you in my prayers and my heart - and I am so delighted to hear you talking about the operation and the recovery in such positive terms. I admire your strength and your capacity to see the 'good sides' of some of the difficulties in recovery you are now facing. And life - what a gift in itself - your son must be thrilled, I hope you have plenty of chances to love on him this week.

Best,

Irene

l'optimiste said...

oo - how exciting!! first post after major palavers! well, I for one am delighted [well - understatement] that you are home, alive and getting well.

Can't WAIT for the bladder post [I think? heh heh] - who cares - they got the beastly tumour, against all the odds. It's fantastic. We can never really thank them enough for saving our lives can we? Impossible to describe.

The photo is gorgeous, and I imagine you sitting at your view with a lovely big latte, a nice warm banket and a great big grin.

I do think I will be emailing Costas and letting them know about all this free publicity you give them ;)

Way to go Jo - you did it. Now get well. xxx

karen gerstenberger said...

I'm so happy to read that you are HOME and recovering! And that the tumor is ALL GONE. Thanking God for this gift, and for you!
Writing it out may indeed help others, and you are kind to be willing to do that. It also may help you.
Rest, rest, rest. Sending love from the Seattle area. xoxo

Snowdrop said...

Good on you Jo. Its great to hear your spirits are high.

Is it raining in the lakes? It certainly is here.

cheshire wife said...

It sounds like an awfully big op. Look after yourself and take it easy.

Anonymous said...

"Anything that supports someone else is worth writing about." : YES. I will remember that when I'm working on writing something it feels like only one person might ever benefit from. "If I can help one fainting robin/ unto his nest again-- I shall not live in vain." (Dickinson)

Your voice is steady as ever from this side of the screen- so good to see. Hugs.

Ladybird World Mother said...

Hooray, hooray, you are home and blogging! what a time you have had. And I thank God that you are peaceful and joyful and enjoying home. How wonderful is that. Your mum sounds a treasure. Costa latte coffee at HOME!! My idea of bliss... take care Jo and look forward to the next post. xxx

Angie said...

Spoken like a real trooper (or do I mean 'trouper?). I'm glad you're on the mend and how hilarious the way you tell of your hallucinations. It can't have been very nice going through it though. Well done, and welcome home.

Pam said...

Welcome home! Having no training in medicine I'm not sure what you've had done but you're right - it does sound huge, so I'm glad you are starting to mend. And so so glad that they got the tumour. I'm sending warm cyber-wishes to Cumbria. X

Expat mum said...

I too am thanking him (gasp!). It really is a miracle on many levels - so much better than the projected results if I rememebr rightly. You are one brave lady and deserve every bit of it.
Can't wait to share more laughs on my next visit and I expect to see you doing handstands and the like.

xxx

Iota said...

Good to hear all went so well.

She Means Well... said...

This post stopped me in my tracks. I can only applaud you for your incredible courage and honesty about what must have been a harrowing experience.

It was just by chance - and direction from Toni at http://expatmum.blogspot.com - that I stumbled across your blog. But you can be sure that I'll be back to see how you're doing.

Wishing you all the best for your recovery. I bet good coffee never smelt and tasted so good as it does now!

And on another point, thanks for the beautiful shot of Derwentwater. It's the land of my ancestors - though I've only been there once.

Mandi xxx

London City Mum said...

Welcome home and glad you are on the mend.
Sending positive thoughts your way for a speedy recovery back to full health.

LCM x

Anonymous said...

Hi Jo,

I'd a colostomy for more than 10 years now. I've regarded it as part of me.

All the best,

Puyi

Millennium Housewife said...

Over from Expat mum's who wrote so touchingly of you, so glad it all went well, will be checking in to see how it all goes...

Clippy Mat said...

Jo:
Thanks for taking us all on this journey with you. Your progress has been uppermost in many hearts and minds for the last while. It's unbelievable what you have gone through and how you have shared it all with us; the good, the bad and the ugly. I admire your courage and your willingness to help others.
Looking forward to your next report.
Love the photo. You are in the right place with that scenery, it can only help speed your recovery.
:-)

Metropolitan Mum said...

Dear Jo,

I was sent over by Expat Mum. I hope you'll recover soon. You seem to be an amazing person.

Deborah x

Polergirl said...

Yippee (whoops for joy and jumps around livingroom!)

Oh Jo, I am DELIGHTED you are home again and can admire the beautiful views and breathe the fresh autumn air.

Yeeeeeeeeeeeeeeess!!!

Fantastic news!

Girl, you enjoy those lattes, get plenty of rest and be patient whilst your body mends.

Lots of love and hugs.

Polergirl & Mr Man x

Home Office Mum said...

I came over from ex-pat mums. I don't know your story but I am so happy for you. It sounds as though you're through whatever horror it was and are loving life. Well done you

Daffodilly said...

Great news. Take time to get better. Sending lots of love & good wishes.

Laura said...

Your post is so positive and incredible and you sound like an amazing person. I am happy to have happened on your blog.

Best Wishes for a speedy recovery,
Laura

Jean at The Delightful Repast said...

Hello Jo, I just discovered your beautiful blog by way of ... oh, where's my brain ... can't tell you just now. Anyway, you've certainly been through an ordeal and I'm sending you good wishes. Looking forward to visiting your blog as I have an attachment to the Lake District (my mother's family was there for centuries), though "our" lake is Ullswater.

Irritatingly Optimistic said...

Glad to hear you're home and in good spirits Jo. I can only guess at what you've been through.

I loved your hallucinations too. Maybe you have been a little obsessed with technology these days????

Hope the footie cheers you up this afternoon, although I wouldn't hold your breath!

Nicola said...

Dear Jo

I am so, so relieved. Wishing you an incredibly speedy recovery and years and years of raging good health.
xxxxx

Grumpy Old Ken said...

I hallucinated on morphine. Couldn't tell reality from 'dreamland'. Amazing, anyone who takes drugs for fun is crackers. Smashing to follow your positive thinking, well done again.

Snowdrop said...

In response to your comment on my blog - I am sure it will only be a matter of time before I can take you up on that offer - thanks.

Hope you are making a very speedy recovery.
x

Rosalind Adam said...

Sorry to hear about your recent problems. I've arrived here via Grumpy Old Ken's blog. I noticed your comment about appetite and, though you haven't mentioned it in the above blog, thought I'd share with you the experience of my OH. He's back in hospital with an infection following stem cell transplant and high dose chemo. His appetite is nil. He's on two Build Ups a day (he says they're like strawberry milkshakes) and also Callogen Extra which gives him all the nutrition he needs but it's not like enjoying a meal. He's on various anti-sickness pills and we've tried ginger and all the other alternatives for appetite but so far with no success so if you find anything that works...!
All the best with your recuperation.

Maggie said...

Jo, new to your blog, but we have much in common. I will keep you in my thoughts and prayers, send you good energy. Whew! What a surgery!. I have a colostemy (not so bad, really) and am looking at having my bladder removed sometime in the next year if the tumor in it doesn't respond to chemo. You can handle the urostemy bag - no problem. They are really quite easy to take care of and once you get the swing of it, the absence of all the problems it was causing will be a great relief. I will check in on you again! Please contact me re: questions about the bags! Hugs, Mag

Gill - That British Woman said...

try and stay warm Jo. I was saying to my mam about you guys having a long cold snowy winter but she hadn't heard that?

We are in for a warmer winter with a lot of snow? I wish I could wave my magic wand and make it a warm winter with just a bit of snow on Christmas Day and that's it!!

Take care,

Gill

Lyn M said...

I've been reading your blog for a while now and admire you enormously. Just want to give you a big hug and wish you a speedy recovery xxx

MsCatMinder said...

So glad you are back to your blog and your life in Windermere ! Well done you on all levels and wishing you the best recovery and enjoy all the lattes you can get your hands on!

Decadent Housewife said...

Have thought about and prayed for you over these past months. Thankful you are through all that and home with your family.

Trish

guineapigmum said...

I've been reading blogs for a while so didn't realise what you're going through. So glad the operation went well - I do hope your recovery is swift and good! My brother in law lives with a bag following bladder cancer some years ago and he seems to get on with life as though nothing much as ever happened. I can't imagine it's as easy as he makes it look but at least his life hasn't ground to a halt.

Good luck!

Christine said...

Jo, I tried to leave a comment yesterday but must be out of practice. Haven't been reading blogs much recently so I hadn't read about your illness. So glad to hear that the surgery seems to have gone well - I hope your recovery is swift and full!

My brother in law has lived with a bag for a number of years since bowel cancer. I'm sure it's not as easy as he makes it look, but he seems to carry with life just as normal and it really doesn't appear to have stopped him doing much. So i hope you find it not too difficult to deal with.

I'm sure there's a few of us who can celebrate that "Good to be alive" feeling with you!

Xenia said...

I hope your recovery is progressing well and that you continue to enjoy the rest of this most beautiful season.