Tuesday, 26 October 2010

Tales of the Royal Marsden and the road to recovery part two

I have pinched this great picture from my good pal and fellow Geordie Clippy Mat. Check out her most recent post about emigrating to Canada many moons ago. It reminds me ( and lots of others) of our own story, and we were just moving 120 miles to the lake district. It is worth a look. Oh and by the way, for those of you not in the UK, a Geordie is a person who ( and there is much debate about this) was born in Newcastle or not far from the river Tyne. Look at google for the definitions. I was born less than a mile from the river Tyne ( North side) at North Shields ( near the Tyne mouth) and I constitute the real thing for sure. Pride Pride.
I confess I have been neglectful of my blog and I will do better in the next few days. I have a few mitigating circumstances. My blood level ( HB level) got so low I had to go to hospital overnight for a blood transfusion. Since then I have been a different woman. My energy is so much better. Before I felt like a dishrag- no motivation and asleep most of the day. Now I am buzzing and have a bit of colour ( rather than being as white as a ghost - white lips to match the skin tone).
Inspired and full of beans I got up on Sunday to do a long blog post but our internet had crashed. We had to wait for a powerpack which came yesterday. Wi- fi back on now and normal service is resumed again.
I try to do a few little jobs every day. This has involved all sorts of stuff such as thank you cards and replies to emails, cheery little texts in reply to all those I got in hospital, ordering bedding, starting on line Christmas shopping, sorting out teenager's incredibly busy diary, sorting out a new bathroom ( walk in shower etc), ordering a radar key for access to disabled toilets which are locked, getting a sweep organised ( pre -real fire season), getting a decorator to quote, ordering some grab rails for the front door ( I am no good with steps and won't be for a while). And the best bit-I am strong enough for visitors now and I am catching up with my wonderful friends. IT IS SO GOOD TO SEE THEM AND THEY ARE THE BEST MEDICINE. I am sure you love your friends folks and I am sure they are lovely, BUT MINE ARE THE BEST EVER!!!!!
I haven't watched much TV. I don't have a tv in my bedroom ( and have no desire to have one) and have enjoyed just sitting on the bed reading mags or facebooking. However, I have struggled through to the lounge for Downton Abbey ( fabulous), X factor, recorded cookery programmes watched with my mum ( we like the Barefoot Contessa), and the football ( of course). I sleep a lot too still but not nearly as much.
I have been out shopping at Marks and Spencer - it was wonderful. I have been out for two lunches too. We don't stay out for long but every minute is such a treat. Slowly but surely, I am gathering my strength.
And of course, I haven't forgotten about the 'no bladder' post!! Coming soon at a Lakeland Jo blog near you.............

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.

Wednesday, 13 October 2010

Life in the Royal Marsden

Thank you first of all for your kind comments in response to other half. It is so appreciated. And I know all the positivity and prayer on the day of the op were essential to it's success. I would like to do a lovely long post but because it's being done on the iphone, that makes it a bit tricky. Suffice to say the plan is for me to leave for home on Sunday. So next week expects some long sagas.
In brief, it's been a roller coaster and the week post off was the longest of my life. A real physical slog with lots to come to terms with. But above it all has been the feeling- I made it, and the operation was a success. Wonderful. Everyday my progress improves. I am sleeping again after last night, I am starting to eat again, and my stitches and staples are all gone. I haven't had time to be even remotely bored, and celebrated my 46th birthday in hospital yesterday with a glass of fizz.