Biopsy at Guys Hospital March 2019

Apologies for not blogging but i got locked out for 3 years 

Day 1 at Guys Hospital 26 February 2019

The train journey was comfortable. I started off at Orchestra, and then went to a healthy lifestyle choice and found out about fibromialgia and hypomobility being eds. Then I went on the train, packed with sandwiches, supplied with three pakoras and a tea.

London Bridge awaits, Guys Hospital on its doorstep. When I arrived at Dorcas Ward, I felt strange and alone. Immediately carted off for my scan. My bags taken to my temporary place of abode. My corner for the next 3-5 days or more. Who knows?

I met a pleasant student nurse called Martin. He was cheerful. He had been in the army, but nursing became his job. I found out he was an expert origami designer, making vases out of paper, and beautiful swans.

Day 2
27 February 2019
How do I feel?

I am scared- of the pain and what they will find, but actually I know in my heart they are trying to save me. That accounts for much. The nurses are really loving and caring on the Dorcas Ward, and the object after the op is to walkabout. I hope to achieve this and hope that my lung function is strong enough to cope.

The sun is rising out of a London landscape. It’s warm and cool in the ward, but I suspect cooler outside, getting ready for the day. I was up at 5.30 to take nutritional drinks (a new addition to an ever-changing procedure. Then shower with the pink elasticated, antiseptic wash- gown and socks pulled up, hair tied back ready to go.

I have that thirsty, hungry, feeling in my gut; a slight headache, and full of anticipatory dread for the op on my lung. The waking up- back down to earth, the the pain of incision. Is it greater than the pain of love? Maybe temporarily it is, but doesn’t last for as long.

I say to smokers: it is not worth it! I gave up twenty years ago and am still plagued by its dreaded C-. Will I survive (or how long and how will my children cope in this world)? They seem to. Let’s hope that lasts. I love them so much

Evening of Op

I am being really looked after. The doctors, nurses, physios, everyone. Love them for this.

There is a REAL hope that I have not got early lung cancer. I am hoping, but it could be the old cancer and the cell could already have been there. My lung (so far) is okay. I’m doing exercises (unmonitored) by my bed, so I feel unsure when I do them.

I am very sleepy- and am pressing the pain button sometimes. We are about to have our dinner- Quorn mince spaghetti bolognese. Yum. The food is good, but so far I have only had soup, which is also nice.

My nurse Natalia is lovely. Strange she has the same name as my Natalia in Brighton. I have been to the toilet twice, by myself. My blood sugar level is a bit high. My oxygen hose mask was taken out, but they have put it back in. My dressing has been changed, and needed it! My gown is pink, and I have had medication so am going to sleep.

Love you all.

Had a wonderful visit from Alison.

Day 3
Morning of 28th Feb 2019

Evening with Alison. She is a star. It was funny because my blood sugar’s got to 19.5, and Alison had just handed me orange juice, which I had to hand back, plus a cereal bar. During the night was given medication to reduce sugars. They have gone down to 11 (not good) but not as bad as 19.5!!!

It’s a muggy day today. MY aim today is to cough, which I now have done. Am expectiong physios today, plus my children and sissie Lynn Ora to come today. And Celea and Bubbles (possibly). Nice one!

I’m not sure how long I’m in for. I will have to wait and see- I love everyone. They are so nice in this ward.

I have two prayers today. The Bab from Ba’hai, and also Nam Myoho Ringe Kyo from Buddha. Lovely people. They are so spiritual. Gam was the name of my anaesthetist. Linda is my nurse today. Rojina, my second nurse for today, came whilst Lynn Ora is sitting patiently near me interrogating me in case she appears to have sat gormless whilst visiting. Endless lovely nurses and my physio running round me, reading instruments, strapping, inserting things in my mouth and arms and body- pampering all the while, and anticipating breathing a lot of real fresh air when Celia comes.

Thursday Afternoon

After Lynn Ora left I rested for two hours, and then got a phone call from Alex saying he was coming with Luci. Meanwhile I had a surprise visit from Wendy. Lovely lady who I am so proud of! She surprised me. I didn’t know Maddie had a child called Skyla. Then we went for an X-ray with the Dorcas Pied Piper. We followed each other- and Wendy opened the doors; we were singing Don’t Worry Be Happy and Bob Marley. It was fun.

Then we were offered cinema. Medicinema presents All Is True. Kenneth Branagh and Judy Dench. Brilliant! Loved it. Then had a shower, cup of tea, and rest.

It is probably my last night at Guys. It’s been great here with the loving staff, and even with pain they have been thoughtful, sensitive and caring.

POEM

Here I am at the Dorcas ward
With sensitive, caring, loving staff
Who could wish for more, a double-edged sowrd
I came in because I want to get well
I approach it like I am in hell
And yet here are people with their gentle hands
That want to make me better, who seem to understand
Their questions are so appropriate and kind
It puts me in a gentle, calm mind
Everybody seems to be smiling
Whilst giving clean jabs and sheets
Here is a hospital in a class of its own
Highly-trained specialist who are well-honed
Nurses that take their duty of care
To higher echelons with the angels there

I cannot believe we watch “All is true”
Kenneth Brannagh and Judy Dench, the bards of life
With the trials and tribulations of his wonderful wife

How many hospitals keep you dreaming away
Guys Hospital you surpassed yourself today
I guess if every hotel was like what you are
How well satisfied your guests would be
So thank you NHS from the bottom of my heart
For your encouragement to a great new start

Day Four
29 Feb
I woke up really early with pain and asked for some paracemtamols and then had a drink of water and went back off to sleep in reasonable comfort. I was awoken at 7 for my blood sugar count which was much better than when i came in 6.3 and then I eagerly awaited breakfast When it came I could not eat it as I was feeling really sick The nurse put this down to the pain killers I had had and gave me some anit nausea tablets which really helped but I still could not eat my breakfast (unusual for me!)
Then I started to pack and the young doctor who had seen me two weeks before said I was doing well and that i could go home . I was happy at this news but wondered why I could not go to the toilet big time the nurse said she would give me a pessary and just as she had said that Lo and behold I went and Big time too!

After that it was honky dory and I had just had a shower and a chat with Shirley who was also going home when the physiotherapist came and grabbed us and we had to go to the gym after the discharge talk in the dayroom. Step after step and then on to the exercise bike to burn calories Amazing I have never had an op and then gone to the gym in a hospital. The Physios were very knowledgeable and answered all my questions on hypo mobility, muscles and scar tissue I really admired them They were young and passionate. Then the nurse said she was going to arrange transport back to Brighton Wow! Even at the county I had to get transport . I had a wonderful driver called Martin who lives in Eastbourne and works at the hospital 3 times a week and he was going home too so I did not feel bad . Guys Are Amazing!!! Thank you so much.

When I got back my daughter and Alan were waiting to help They were so lovely and I did not feel strange as I had done in the past from hospitals because the hospital had well prepared me I appreciate this so much
Its quality and the little things you say and do that make up so much in this world and it s nice to be on the receiving end. I will blog you in when next i find out my results or if I feel like talking about the anticipation of my results.

Thank you my son Simon for typing most of this blog out xxxxx and all my visitors including Alex and a phone call from Chris, I really enjoyed my Visits from Alison, Celia, Wendy , Lynn , Luci and Alex and Alan’s messages, from all my family and friends including Ricky Knott , Michael Read, Ping Knott, Cerina, Peppi and Rosie, Cathy King and family, Chris Whittle and Claire, Eddelwiess, Jilliana, Hazel. Denise, Terry, Alana and all my clown and juggling friends , radio presenters , past old buddies and my lady rattling and Max Miller friends , fellow writers and artists, Open Strings community, Luci’s carers including Wayne and Ginty , Speak Out and anyone else I have forgotten I also want to thank Dr Coker my urologist from Royal County Sussex for his attention to detail and my GP Dr Greaves from Preston Park Surgery and Grace Eyres for looking after Luci’s needs.

Keep posted for more Blogs as I get my biopsy results this Tuesday

More Radio Shows to Listen to

Here is a link to the last Your Voice Matters with Aiden Dimassimo (singer and songwriter) and Jilliana taking us on another journey of her life

 

Plus Mindfulness with Anthony and Michelle

Aspire M.A.D. Project

Aspire Trailblazing women

Check out this link to a video that was made about my opinion of an Amazing Make a Difference Conference that I went to just before Christmas

I loved all those inspirational women and am working on my Make a Difference Project to help others

Women of the World Unite join in with Aspire to find your inspiration!

General link to the conference

https://www.youtube.com/watch?v=veBKAHM2pdg&goback=%2Egde_6687830_member_5958284240830427139

Link to the video of me

https://www.youtube.com/watch?v=6pOT75weYBY

 

Thoughts and revelation of an ordinary person

 

I  have been to many circuses lately and lots of theatre shows with fellow performers showing their stuff.  Moscow State Circus with clown Valerye excellent! And then a wicked technical juggler juggling 9 footballs briefly and 7 on a walking globe that looked like a football! Wow then passers of clubs smooth and entertaining plus all the other artists’.   Nice show!

Then two days later spoiled again by seeing John Lawson’s circus again great artists and amongst all foot jugglers! I have not seen foot jugglers for a while and was training to be one years ago but my back let me down so I know what is involved.  Our very own Bippo really developing into a great circus clown with plenty of confidence, plus there was many great artists with plenty of skill and entertainment wonder.

Then what happens after this I go to Denmark and see many skilful acts in Circus Mascot including Ulmas Gulyamov and his amazing family with Tatiana doing her aerial act and their children working with their father on an acrobatic act, and Marianne with her dogs and her sons doing their wonderful acts Great acts with dedicated people.  Love it! I felt I was being transported back to my childhood.   I will never forget Bertram Mills at Olympia, my aunty Mary used to pay for a ticket for the family every year as a birthday present for me, and mum used to make a party for me when we came back and the rest of the circuses Austin brothers, Chipperfields etc and how much help Zippo and Gerry Cottle has given to Clowns International and their friend’s.   Thank you so much we do appreciate it!  Your circuses are brilliant and so are you both.

I cannot forget No Fit State circus and how I was really tempted to run away with them back in the 80’s what a great crowd circus is and I feel very privileged to have known such wonderful people in my life

It was great in Denmark to see Bubblez and Julius , seeing Pierrot in Copenhagen in Bakkas, such an honour ! and stay with them and hang out with Irene and sharing a room with Flo, lovely lady with a wicked sense of humour, Freda and Zilly, Des and Eek, Rico and Toby, Barry , Kate Gingernut , Matty , Paddy, plus our wonderful Danish and Swedish and Finnish clowns including Lisa , Nils Poll, Tors, Skunk, Palietta, and the other lady clowns out there including the Commedia School, plus Sven, Axel,  My dancing salsa partner, Also making new friends in Svenborg brilliant

I love you It was a pleasure doing some Tai Chi exercises with our amazing host John Newman , Young  Mark (wicked magic trick) and Claire and also lovely to see our faithful ladies making breakfast day in the centre, day in and  day out and our sponsors for the festival Thank you Danish children we love you too!

Now I am going to join the circus of the NHS to have a major operation again but this time in Brighton and hopefully with a view of the sea to ponder on.  I will let you know the outcome of this and other tests Meanwhile I am still doing my play about cancer so any one who wants to contribute their voice to it I would love to hear from so get me on my email susioddball2k@yahoo.co.uk

Before this is my daughter’s birthday and she is having a barbecue which I am going to look forward to lovely

I have also seen the last of the Fringe plays i am having such a theatrical week I have seen brilliant performances from Christopher Phillips and company, at three and one, a play about mental health,  and Robert Cohen at the Rock, Kemp Town about Mc Carthyism, and then to top it all I listened to the most beautiful chamber music with a bonus of wonderfully read poetry from Shirley Jaffe and Paulina singing Yiddish opera,  fantastic love it Went  to London to clown at Grimaldi park to commemorate 177 since Joseph Grimaldi was alive!  then back to Brighton to go with Suchi Chatterjee to two plays this evening at the Friends centre Confessions of a brighton hoar was absolutely amazing and clever and if I had been a man in the audience I would have felt uncomfortable I wonder if this was deliberate? Lol! It was written by a man too, and I unfortunately missed  my friends 70 birthday after the plays too late day then on Sunday went to the Quadrant in Queens Road to see Charmian Hughes in her production Raj Rage at 4pm she was great and is taking her show to Edinburgh Then I had two bonus’s one was seeing another play in Three and Ten My cousin Lorna and Cat in That Pair on the theme of Friendship How they have developed and are really funny  A must to see It really made me laugh

Then two  a cup of tea with my daughter Luci and a cuddle from her cat Tomolina Kit cat

A great three weeks I have had!

Floating Memories oral history interviews coordinated by Paul Farrington

Here are some interviews I helped with on the Floating Memories website with Brighton Swimming Club with Adam Trimmingham, Yvonne Luna and Bob Phipps

I enjoy recording people’s memories If you have any let me know

 

http://www.floatingmemories.co.uk/adam-trimingham/

http://www.floatingmemories.co.uk/yvonne-luna/

http://www.floatingmemories.co.uk/bob-phipps/

David Aherne the Vegetarian Gourmet

Here is a link to a very talented man talking about Vegetarianism, Fracking and the amazing world of acting

http://www.mixcloud.com/susioddball/your-voice-matters-special-with-david-aherne/

Simon Sladden and Widow Crusoe in Panto interview

Here is a fantastic show about pantos enjoy and be happy

http://www.mixcloud.com/susioddball/your-voice-matters-panto-specail-17dec2013/

Bridget Whelan’s New Creative Writing Book Radio Interview

Here is a link to Bridget’s Interview which is dedicated to Mike Whelan Enjoy!

http://www.mixcloud.com/susioddball/your-voice-matters-with-bridget-whelan/

At my sister’s Cathy in Bromsgrove

Hi I am now at Bromsgrove and loving it My sister and my brother in law are great and my sis is feeding me up so much and I am still loosing weight so all I can imagine is that the stomach is going down slowly but surely.  Its still painful as it is 15 inches across my body but its bearable now.  The most difficult thing is not to lift and for people that know me well as the bag lady would feel this is hard for me, but a good lesson in sitting still and concentrating on less for a change.

I don’t know how my sister does it but she comes up with the most amazing veggie dishes possible to put one into paradise She should open up a place where she gives people a bit of heaven.

The nicest thing is being alive and I wish to thank all those people who came to visit me at hospital, the nursing home and the messages on social media for all your lovely thoughts and i will be getting in touch with you one by one xxxx

Its funny when you have a longer lease in life its starts you thinking about how to conduct the rest of your life and there will certainly be changes in mine.  I had a chat with my dad and he has been on the brink a few times and he says that its funny how one is aware of injustices but how after our experiences we become less aggressive in how we cope with them Is it because we have been touched by an angel.

I shall be back in Brighton in about two weeks and I will need advice on how to care for myself for the next six months so any suggestions let me know Meanwhile have a wonderful life and its great to be alive!!  xxx

I am in the middle of writing a play so watch out for it lots of ….

Blog 15 Onwards to Brinsworth House!

I got out of Kings no Urologists report and on my way by ambulance to Brinsworth House my convalescent home thanks to belonging to Equity, been able to get help with the Benevolent Fund through Evelyn Norris, Elizabeth Finn fund and also Florence Nightingale Aid in sickness Trust My deepest thanks to the bottom of my heart

I was talking to the ambulance drive and I thought that he was about 30 but it turns out he is older than me Wow, wow, wow how looks can deceive.  He also has 6 children the eldest being 38 and the youngest being 7.  We had a great chat about philosophy and he was telling me about his school life and how he feels he didn’t do well wasn’t sure if it was his fault or the teachers, but favourite subject history.  So I told him to take notes about the house we were going to as this was lving history of entertainment.

We always wander what musicians do and actors and artists after the fame dies down.  Well here’s a little of the heart of those great glory gone days where treading the boards meant dancing, singing, making gags and entertaining either a handful on a pier, or a packed out audience in the theatre.  All mattered and the acts would be performed equally well.  I have met some lovely residents here in Brinsworth House who are the best, or have worked with the best.  They are welcoming, sociable and lovely.  It’s a place where one is treated with dignity, and respect.  I do recommend it for some respite and rest, whether it’s for a week or four weeks.  The staff are fine and helpful, not judgemental.

I wrote to charities to help me and Evelyn Norris, Elizabeth Finn fund and also Florence Nightingale Aid in sickness Trust, plus Cancer Relief, and Macmillan fund all who have helped me in my time of need and helped to provide me with two weeks of care I know I will love.  My first meal was Baked potatoes with baked beans and cheese (not too much) which was delicious and mandarins and ice.

I enjoyed every scrap.  I want to at this stage give a special thanks to Hazel Fairchild for not only giving me the idea of convalescent (I went to visit her when she was in respite) but between herself, and Donal O Sullivan my financial inclusion officer from Southern Housing I would not have thought this possible and I doubt I would have been offered anything as exciting as this for me.

I love talking about Variety, and who better to talk about it with than other variety artist.  A dream, all I need now is a clown to arrive and teach me some tricks to forthwith use in a brand new clown act. I am still waiting to find out the results of the biopsy they have taken out I have to admit I am willing the answer to BE BENIGN

Just so that part of the journey ends and lessons learnt.  I really love my sisters they might be old codgers now but the have so much life in then and zest.-ride on my true darlings for your enormous help and support over this. Ping you are a darling and a very loving person.  Thank you for being there in the background quietly and solidly.  You are a loving person.  I still say your magic act was absolutely brilliant but I know you would deny it.  Wendy remember when we were kids and we used to fight each other silently of course we are not like that now.  Do you ever fight silently with yourself I do sometimes.  Anyway its 4.45 am and back to bed and hopefully I will get some shut eye.  It’s been difficult to sleep since the op, I thought it was the noise at the hospital and now I know its me I should have guessed that nothing is straightforward.  Well I will let you know more tomorrow

I felt sorry for the matron as when I arrived there were council inspectors but she also had major building work and the hot tap is not working so the residents can only have a shower not a bath at the moment.  I hope that Brinsworth House will go on forever and it could if we all supported it Lets try- Yes

I am still here and tomorrow is another day what joy! Now to enjoy the rest of my stay and then on to my lovely sister Cathy in Worcestershire .