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.

The Operation...

Its finished!

At 9:45pm the surgeons called and told me that the operation was finsihed. The surgeons were happy that they had been successful and believe that they have been able to remove all the tumour. Plenty of tissue samples have been taken and sent for analysis to confirm everything has been taken out. This is a result beyond our wildest dreams. Jo did extremely well during the op, I'm sure proud of her!

In all the operation took about 13 hours and Jo will be recovering for a long time. Knowing Jo as I do I urge you all to keep an eye out for new posts from Jo by Saturday or Sunday.

Finally, as a person who is known to you all as 'other half' can I express my sincerest thanks to all of you for the constant support you have given Jo. As a community you are all important to Jo and I know Jo draws a huge amount of strength from you all. Jo and I talk a lot about all of you and the connection Jo has with you is hugely significant to her. You are her 'public' and extremely important to her and therefore important to me - please keep the connection and the support going.

Other Half

The Operation

An update on Jo's operation.

As of 5:45pm this evening the operation going very well with no complications. The surgeons have removed lots of tissue and lymph nodes for anlysis and all samples have come back negative, indicating no spread of the disease. A good result!

Jo is stable and her condition is good.

The team of surgeons have been working slowly and steadily in the pelvic wall area remving the tumour millimetre by millimetre. This is the area with the greatest risk, lots of blood vessels and nerves. So far so good.

The surgeon I spoke to said they expect to be working for atleast another 5 hours, so expect to see another post later.

Can I ask everyone to maintain their strong positive focus for Jo throughout the night. Your thoughts and prayers will all be received by Jo and your strength and energy will be used by Jo in her quest to overcome this.

Teenager, mum and other half are doing well, just having a quite day.

I will post again later with more news.

Jo's Other Half

Where to start?

Where to start? Last time I posted I was under the weather with an infection. A lot of rapidly moving water has been under the bridge since. My lovely friend Bobbie turned up for a visit ( from the US) but after one day of her arrival it was clear that I was skating on thin ice as regards a possible hospital admission. Since I was due in hospital in London for more tests and scans the following week my GP suggested that a local hospital admission would 'put a spanner in the works'. Too stressful to contemplate. So I left my friend holding the fort with mum and teen,and other half and I came to London. This meant if I needed admission I could go straight to the Royal Marsden. Luckily I avoided admission and the tests and consultations proceeded as planned.
Bobbie, abandoned by me in the North, had a lovely time with teenager (her Godson) and my mum. Luckily she has since followed me down to London so I get to see her after all!
On Thursday I finally got the decision about the operation. It would take an age to explain why but the answer was No. Total devastation. I have never felt so wretched and low. However, remarkably and through the power of prayer and patience, on Friday the decision was reversed. Joy.Sheer joy.
On Wednesday the operation will go ahead. It will take 12-14 hours. It is very risky. They may not get all the cancer out. I will have quite a bit removed partially or totally. I will be in hospital a long time. Recovery will be slow. There are absolutely no promises. But I have been given a chance. That is all I have ever wanted. A chance. To see my boy get to eighteen. That is what I am focussed on. If I don't make it at least we gave it a go. Took the bull by the horns. I gave it my best shot. I have looked the cancer in the eye without fear. I will take my chances. I am at peace knowing I have done everything I can. Now I trust in God and what will be, will be.
Pray for me on Wednesday.

The good news and the bad news

Take one look at the picture. It gives it all away. On Saturday I came down with an infection. It could be one of many things but I have spent the week so far either shaking with cold, fainting with heat, fast asleep or taking some tablet or another. It is now official I rattle when I walk. Mum as ever has been completely steadfast. Sitting with me, bringing me coffees from Costas ( my passion is going out for a coffee often with mum, so she has collecting one for us instead), trying to improve my increasingly grizzly mood. Other half has been insisting that I eat ( it is not a good sign when I don't fancy eating- I am such a bon viveur), bringing me a continuous supply of ribena ( which I crave) and generally calming me down.
I need to make progress. I need to get better for London next week. I get my decision a week on Thursday. Will they or won't they operate? I will find out on that Thursday. So it is tough at the moment- no point dressing it up.
But I am so blessed to have a lovely family to support me, and friends who shower me with cakes and flowers and cheery texts.
And the good news- my pride and joy passed his Duke of Edinburgh Bronze award, and continues to be my inspiration and strength.

It's been a while.............

A year ago teenager did his practise Duke of Edinburgh bronze award. A year later it is finally the real thing. And much has happened since then.

Thanks for all the good wishes while I was in hospital recently. It has been a whirlwind. I ended up in hospital for two weeks including a transfer my ambulance from Barrow to London. 300 miles, and actually it wasn't as bad as I thought. I was looked after very well by two lovely ambulancemen: Trevor and Alan.

I had two operations under general anaesthetic within a week. One to find out the source of the bleeding, and one which was a scheduled exploratory at the Royal Marsden as part of the ongoing tests to see if I can have what I now call ' the big op'.

While in London I also had a PET scan which is the final piece of the jigsaw. I haven't had the results yet. I get these on 23rd September, the day I find out whether the hospital is in a position to do the 'big op'. It is stressful waiting but it seems to be the way it is... forever waiting for some test or result. The life of a cancer patient.

When I got out of hospital in London, and waited for the scan., I stayed with my lovely friend L who has been my dearest pal since we were at school. We met when we were eleven- quite a few years ago............ As comfortable as a pair of slippers our relationship. As soon as enter her home I feel relaxed and comfortable, and she is a lovely hostess. Perfect for relaxation and recuperation. Aren't I so blessed to have such a dear friend in London so near the hospital? It is such a relief.

And now I am home. Three weeks later I am back. It is lovely to be home with my boys and my mum, and in such a lovely inspirational place. I plan to rest and build my strength for the next part of the adventure.

The long stay

I am posting from my iPhone! So this won't be a long post. Just to say I have been in hospital since last Thursday! I won't go into the gory details here. Suffice to say there is unstoppable ( at the moment!) bleeding going on. So I am having lots of care and transfusions, and staying in Cumbria until next Tuesday. I will then be taken to London in an ambulance on Tuesday! That's 200 miles folks! From next week the Royal Marsden will look after me. I am being well looked after and will blog when I can. Xx

The second opinion

Since my local hospital had told me that my tumour was inoperable and incurable I came to the decision that I needed a second opinion. It may sound odd, but I did not come to this conclusion quickly or easily. I suppose I have been in shock.

My GP suggested I go the Royal Marsden, a cancer hospital in London with a wonderful reputation. It is a long way to go, but worth every mile.

I have been three times now, and every time I have been impressed. They are friendly, efficient and knowledgable. It is such a relief.

Yesterday they told me that they DO consider me to be a candidate for surgery. I need to have another detailed scan, and more exploratory tests so it is not definite yet. However, if these further diagnostics go well I will be operated on mid September. A major operation. Complicated and challenging, but I feel so blessed to be even given the chance.

I am pretty shellshocked by the news. So is my family. I want to get excited but don't want to get my expectations up too high until I have had the tests which happen at the end of this month.

My advice to anyone out there who isn't happy with a first opinion on a medical matter, take all your courage in your hands and ask for another opinion. Another pair of eyes. I am so glad I did.

The trip to God's own country

We have been to the North East of England for a few days. We were staying with other half's family. We had a lovely time. The weather was pretty moody, but on Thursday it was pretty good so we went to the beach. This is Tynemouth beach and it is very near where I grew up in Tynemouth village.







We went paddling and here is a picture of teenager with his cousin.


We also went to see NUFC ( Newcastle united) at a training session. It was a free event and thousands turned up.

Teenager got his very first season ticket. This means he can go to every home match. He has been over to Newcastle on the train with his friend, so he is hoping to go to lots of matches.

There was a first team player signing session and teenager got lots of autographs and photos, including this one with new signing Sol Campbell.

I love living in the Lake District and can't imagine every moving from such a beautiful place. I am always so happy to be back and inspired every day by the beauty and peace. But Newcastle will always be home.

Two great books

My good friend Ann has lent me these books. I have read them both. They are excellent and I found them inspirational. The sort of books you can't put down. Has anyone read them? Let me know your thoughts if you have.

Since I stopped working I have started to read voraciously again. I am really enjoying it. I would love to hear about any books that you have enjoyed and would recommend.

Regrets.... I have a few....

There is nothing more sobering than sorting out pension paperwork and realising you probably won't be around to take advantage of all that saving up and sensible planning. It makes me think- so what is all about? Life.

As you can see I am in philosophical mood today.

We have been burning old financial paperwork and filing important stuff away. I found a large box of photos and started sorting them out and labelling them.

There are some wonderful ones and I can wait to start scanning so I can start posting a few.

Everything from me at sixteen, college shots, shots of our engagement and teenager as a teeny boy. Holidays, parties, nativity plays and weddings. Where does the time go?

All over in what seems like the blink of an eye. And so much change right in front of my eyes: people who have moved away, people who have died, people who we don't see anymore, people I can hardly remember, people who have divorced, people who have re-married. Fascinating.

And all those different haircuts, and fashions... and remembering how I felt and what I was doing at each stage of my life. What was important, what motivated me, hopes and fears. Memories captured on paper, bringing back lots of different emotions.

It makes me realise what a great life I have had. I have made mistakes and have taken wrong turns, but perhaps these things have made me what I am today. Perhaps they were all part of learning lessons.

The bad things seem miniscule and irrelevant to me now. They are firmly in perspective now. In fact, my main regret is that I worried as much as I did.

Jo update

Teenager in Chicago- summer 2010



Teenager had a wonderful time in Chicago. Here he is at a Chicago Cubs match at Wrigley Field. How lucky is that! I am glad he had a lovely time. Chicago is such a fab place. Thanks again to my very good pal Expat Mum and family.

I have been for a second opinion consultation with the Royal Marsden Hospital in London. It was impressive. Organised and friendly. I felt happy to be there. I told them I had been very poorly after my last lot of chemo and that I wanted a break. They agreed that since it does not appear to be working, I should have a break. They advocate listening to your own body and instincts. Refreshing and hurray. They want to try a different regime further down the line, but not now. What a relief. Chemo is ok if you know it is making a difference. I feel instinctively that this is making no difference at all other than making me ill and down hearted.

Royal Marsden continue to consider options to get me the best possible outcome. To help this I go for a scan next week down in London. I am going to stay with my friend Louise. We were at school together and London flatmates in earlier days. It will be like old times. It will be great fun to be girls together again- shopping and eating I hope... and going to the cinema.

So we are focussing on symptom control and having a happy and fun time at the moment. Especially during August when teenager is off school and on holiday. Not only do I need a holiday- the family do too. Having some normality will be good for all of us.

Meanwhile, three friends of mine are in hospital at the moment. What's going on? Wherever I look someone seems to be struggling.

I am so glad I have my faith. I don't know what I would do without it. I went to a worship session at the Keswick Convention last week. It was uplifting and comforting. When nothing else seems to soothe me my faith brings me peace. Be still, and know that I am God.

Reality time

( Picture taken by my fab photographer sister in law Karen at Christmas 2009- they are both much taller now!) Teenager and his cousin.

I like to post pictures of teenager when I am in need of focus and inspiration. And it has been one of those weeks where I have needed a large dollop of both. Post chemo wasn't much fun for a couple of days. I will spare you the details ( too much information!) but the positive thing is that I feel a lot better and brighter today. Back to fiesty self just about. Sleep is a blessing and I have spent most of my time asleep. I feel like I have come out of hibernation. The weather has been helpful- wet and grey- I haven't felt like I have missed a thing on that front.

And I have had my mum here to look after me. It has been a real comfort. She has been my inspirer and chief caterer in charge (the whims of the chemo patient are pretty astonishing).

And... my letter arrived today from the Royal Marsden Hospital. My appointment is next Friday in their Chelsea hospital. It is a reality now. Trains to organise, accommodation, logistics and diary changes. It starts now. Already, we have time clashes all over the place- this is when keeping focussed on the priority is helpful. And this is it- the priority. So all systems go to make it happen.

Teenager's holiday continues to go brilliantly with lots of exciting treats including water trampolining in Indiana. He leaves Chicago on Monday, and back to mum and dad, jet lagged no doubt on Tuesday. I can't wait to see him. It has been a joy hearing what a great time he is having.

where has she been?

Picture taken in San Juan islands near Seattle on last year's holiday.


I am afraid that google/ blogger decided to lock me out of my blog for a while. It kept saying that my password or user name was wrong. Eventually I tried the 'forgotten password' route and it has worked. Very odd. Anything like that ever happened to anyone else?

Anyway, quite a bit has been happening at this end. I spent a few days last week in Newcastle ( upon Tyne) seeing other half's family. It was a lovely trip. A couple of nights with my mum in law, and then a couple of nights with our friend Martin who has a flat in the city. Other half was working so I had a chance to hit the city centre for a few hours alone. I had a lovely time. Lunch in Yo Sushi, a chocolate shot at a chocolate fountain at Thornton's, coffee in a fab coffee shop called Central Bean, visited a new part of the Eldon Square shopping centre... bought books and clothes. Found out that Jo Malone is coming to Fenwicks, and that White Company is already there. Heaven.

Ok, so I overdid it a bit. Walked further than I had for an age, didn't take as many breaks as I could have done, didn't take enough heed of the warm temperatures AND I LOVED EVERY MINUTE OF IT. WHAT A TONIC.

We had a nice meal out in a restaurant called the Black Door brasserie. Very good. We had lunch in a vietanemese restaurant called Little Saigon. All in all, very successful.

It was hard to walk into chemo again on Monday morning after all that fun and sensory delight. But I did it and day two is now complete. One more and it's done for another four weeks. Reaction to chemo has been mild,so that is great news.

Meanwhile I have a referral to a hospital in London. It is the Royal Marsden and is the main cancer hospital in the UK. A second opinion. I am hoping for a consultation date soon so fingers crossed and prayers this way please. It has been a big decision because of the logistics but I feel I need to seek some more answers and perhaps some other avenues. What will be, will be, but I have everything to gain and nothing to lose.

Teenager is in Chicago with Expat Mum and is having a ball. She is a good friend to us. What an opportunity for a fifteen year old. He is very happy and settled and I get to chat to him every day on facebook- easy and relaxed. Bless it- for all the criticism of it it has many advantages.

Fabulous sunset

I took these photos the other night from my bedroom window.

I was amazed by the beautiful sunset. Breathtaking. These pictures only give a hint as to how lovely the sunset actually was.

Inspirational and comforting at once.

I am feel blessed that I can look out of my window and see such a stunning sight.