Category Archives: journey through cancer

Biopsy at Guys Hospital March 2019

clown in hospitalApologies 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

Link

Thoughts and revelation of an ordinary person

 

Saga ComediansI  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

clown festival denmark 2014

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

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

2014-04-16 17.15.402014-04-16 17.23.002014-04-16 17.24.10A great three weeks I hav2014-04-16 16.28.402014-04-16 17.20.46e had!2014-04-16 17.17.292014-05-30 21.13.48

susi bippo zak and zaz

Your Voice Matters Hepatitis B special

Hallo Folks here is a link to the latest radio show with vital information for all to note

http://www.mixcloud.com/susioddball/your-voice-matters-18-oct-2013/

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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 .

Blogs 13 and 14 from the hospital

Blog 13

I am a day before I go out of hospital.  The doctors have been excellent and the nurses, especially Celestine from Nigeria who was a teacher before being a nurse, and rose and Helen and Mattis and Joel from intensive care. Excellent

I tried to do everything they wanted and apart from nausea I coped well apart from the last night I could not sleep. Every thought every second affected me engulfing me into a world of self pity and remorse.  Then I decided the ask the nurse to give me something to knock me out She said I was too late and the doctors were so busy on Sunday nights so then I decided to read Ian’s  kindle that he leant me.  An amazing man had downloaded an incredible book about oneness Well it certainly changed my state of mind. I felt a oneness and love and reaching out to connect with love and I swear that a young nurse came and woke me up 15 mins after I got to sleep.  Anyway I tried mindset again and after two wake ups and sleep it had become morning.  I gave myself a good wash, and teeth cleaning to get rid of the metallic taste feeling in the body.  Very common and you also get it if you have low blood sugar.  Now am waiting for the doctor to talk about the next stage of my journey Its funny there is always someone worse off than yourself and it makes you appreciate how we are.  Hospital food sounds good but all the prepacked food sounds good although appetising it was not for me The vegetarian choices five bean chillie ( cant have spice at all anymore) pasta with tomato and basil sauce, plain omelette , improved macaroni and more all sounds good but have too much cheese on them which is acidic Anyway I have numerous wonderful angels and I cant thank the staff enough my sister Cathy, Leonora, my fine cousin Wendy, and sister in law Alison.  They are angels on earth Ian Fennel is an amazing man and great friend I am proud he wants me as his friend!  What a stunner young Ellie is who spent two of her lunch hours munching away at her lunch in my ward What a star and you will make a great OT you get upset because you care that‘s all Ellie, don’t take it personally its part of your loving nature of people.  Thank you to all of you.  By the way the urologists did not want to see me today but tomorrow and hopefully I will find out whether the kidney is benign or malignant

 

 

 

 

Blog 14

Now this is really the day before I left Kings and was not expecting any visitors so I decided that I would try and get to the hospital entrance.  After several attempts I made it at 3pm and noticed there was a wonderful shop.  But I got to the entrance and found it was too hot and there was nowhere to sit outside.   So proud and not disappointed I set back to the ward.  Its funny how every body seems to be on a mission maybe that’s what its like in hospital everyone on a mission Anyway I had ordered  an egg mayonnaise sandwich and cheese and biscuits but I was so exhausted  through lack of sleep the night before I slept and then at 6 I woke up to find my sandwich delivered.  Just plying myself to eat the sandwich my friend Natalia came trotting in.  I was so surprised to see her and happy too.  Then it occurred that she also has a skill I could ask her to use.  Reflexology.  The tight stockings in the hospital were irritating me, so she gave me the most amazing reflexology and then we shared the girlie snack of my meagre meal along with the crackers celebrating the appearance of margarine! A lovely evening with a dear friend, thank you so much.

 

Pre Op jargon

It’s amazing when you are in a swirl of existence how people rally around and rescue you.  I would like to say thank you to my dear sisters Lyn and Cathy and cousin Wendy who says it how it is and Juggley Jane,a fountain of knowledge, Alan who does not get mentioned too often cos I know he does not like to be, Hazel who has untiringly been filling in forms, making phone calls, and been there without any payment such a sweet kind lady.  My lovely friend Denise who is there when I need her healing me and making me cups of tea, Ava who has celebrated her 60 birthday, she is always fighting for everyone’s rights, Bridget who is nothing but great encouragement, Eddy a wonderful lady who I have known since 5 years old when we used to share our Adventures of Tin tin books from the local Holborn Library together. Mencap workers looking after Luci and me indirectly, Fiona Mills luci’s social worker, a very loving lady, the staff at Kings hospital for their silent work,  Sarah Lee your words will not leave me “What do you want most in this world?”(Apart from global peace and eradication of poverty and disease) Hilary Cunningham who is going back to New Zealand soon we were flower children together when she was 11 and I was 12. Offers of help Gloria who wants to come around, Ruth Wray from Dover court, Suchi who is giving me endless supplies of phones an amazing inspiration for all.  Ian Fennel who is so supportive and lovely, so is Daniel his partner cuddly and gentle, both of them.   Liz who threatens to take over the world, dearest Simon who looks out for me all the time, Gentle Alex who is there when I need him, Chris whose spirit is strong and present, Dad who is fighting for his family, Aunty Tessie and Uncle Tom who have always loved us and been there for us THANK YOU all for your kindness over the years

Back down to the blog I went on Monday to my pre assessment op appointment and was in Kings all day I started by having a two hour discussion on what was going to happen when I come in on 22/23  July and what to expect. Then there was the ECG, blood test, weight, height, x rays, etc  So equipped with my questions from Hazel, myself, Lyn and Cathy I asked away.  So to answer a few of your questions ‘your’ being fellow bloggers here are some of the questions

How long will I be in? 10 to 14 days if all go well

What will my wound be like? It will be across the stomach where they will try and get at everything

Do I need OT? No

What pain management do I want? Epidural or pain pump not sure on this one as I had an epidural which exploded in my back when they were putting it in but did do the trick or half my body was out of pain, what do you think?

What will happen after?  I will be back again in 6 weeks and depending on what they find I will know if I will need Chemo or other treatment

Good news is that between me and Hazel and Lyn we have secured some money from the Evelyn Norris fund (I thank you from the depths of my heart what would we do without charities) for my convalescence at Brimsworth House Good old Equity! Need to find another £500 for the other half of a week to feel like I might be cosseted.  It brings me to the point that if I did not have this help at hand how would I have fared!  I feel for those less fortunate than myself who do not have this in place.

I feel that my spirit will fight this and I am in for a big change in lifestyle Long awaited I must add and I think I might even have time to write my plays and learn how to operate a camera and edit it for production That is the dream Sarah Lee you have brought to my attention.  I was trying to practise meditation so that I do not feel the pain of the operation but I think I am not good at that yet, ode to be a guru that might help!

I have found out that I have been refused DLA special measures and the ordinary one so am up to Hollingdean trade union to fight this and appeal with Guisepina, Also had an Atos letter on my doorstep this week before I knew I was eligible for ESA so now have to fight that too.  Tried to get the local cancer nurse to help me fill in the medical aspect of this but as I am at Kings I cannot get her to do this.  I must say Mc Millan has been very good at advising so hopefully I will get it sorted before my operation It is a worry I could do without though at this stage 12 days to go before ‘the bigun’

I am off now to get my doctor to give me a new DS1500 to send out for my appeal with the DLA wish me luck cos I will need it!

Blog number 9

Waiting Game

Listening to my daughter Luci singing Robin Hood along with my son Simon, who is a breath of fresh air.  The passion that Simon sings helps Luci who has recorded him and can sing along at any time.  It brings me back to the days of Richard Green’s Robin Hood and the belief that it was okay to steal from the rich in order to feed the poor.  In my opinion its wrong to steal which brings me to the conclusion that the rich ought to be helping the poor and no one will steal from them.

I am reading a book at the moment called ‘the hope of living cancer free’ and its about a doctor called Contreras who worked alongside his father in America at their ‘Oasis of Hope hospital’ curing some people of their cancers and giving people an alternative education towards the holistic side of medicine prevention through healthy eating, vitamins and minerals, exercise, living environment, stress management, positive management, relationships, knowledge and wisdom.  As I read more I will let you know what is said but so far l like what I am reading as it makes good sense to me.

I have had a few comments since being diagnosed with cancer and let me share some of them.  One person asked if I wanted them to be sad or send healing to me, I answered that there was no sadness attached to having cancer as its one of life’s lessons in seeing life as precious so it has to be healing and I promised I would write a blog about this too.

Another said that after this operation it will be about receiving love and healing from others as I have done my giving and its time to do something I really want to do.  The insightful question that she asked me (it was Sarah Lee what wisdom she has!)  Out of everything in the world what would I as a person like to do when I get better?  This threw me as its hard to answer I would like to do lots of things but I really thought about this and answered I would like to make my film script into reality and then realised that the best way would be to learn how to make a film first, then I realised I also wanted to paint and produce animations, and then realised that I wanted to do radio still but not such on a full scale, and then I realised too I wanted to still juggle and play my fiddle, and eukalilie  as much as I can, go to Mongolia, grow vegetables with help from others,  and also to massage and be massaged.  All in all I came to the conclusion that I really enjoy life and want to carry on doing all these things for myself so that’s what I will do,  learn to make films, and enjoy all the pursuits that I would like to do.

Coming back to how people treat you when you have cancer Its interesting that the cells are a disease in your body and sometimes that is how people treat you as if you have a disease and look at you with sad eyes.  Don’t do this try and be like you were to the person when they were not diagnosed.  If you did not like them and still spoke to them be the same or try to understand them anyway I’m not sure about what you do in that circumstance.  Its probably not good to talk about their death as they get enough of that in their hospital surroundings and thoughts and frank conversations with the family and therapists.  Death an interesting concept in some cultures it means a journey others it is the end, others it is a link to another existence.  I remember reading my mum and Walt, the Tibetan book of the Living and Dying and the Tibetan book of the Dead.  The concepts in those books are amazing and it is the complete opposite to death.

I find that my perspective has changed, I feel calm and peaceful but not resigned Strange, an incredible love of humanity has come over me.  I’m not sure what it means but it’s pleasant.  Another comment is ‘have you been meditating?  Well I have been deep breathing and relaxing good question I think I need to rest more but that is kind of impossible in my life being a mother and a carer so I am kept on my toes.

I had the most amazing email from my dad and I will treasure it immensely and I know he has been trying to contact me but I am not easy to get hold of as my telephone answer machine is always full due to broken telephones, and I seem to always have my phone on silent as I am in the radio studio often or meetings or somewhere that requires quiet.  Thank you dad I do appreciate the email it’s gone to my heart.  At the moment I am waiting for a pre op date and on Monday I will phone them up to make one if I can, then my op should be in about two weeks after the pre op date Its getting closer but I feel I need to take out what is in there so that will be good and then it will be time to recover.   Hopefully the next blog will tell you dates and times meanwhile back to trying to fill in dreaded forms for DLA and ESA and Convalescent homes with my delightful friend Hazel Fairchild who is a mind of information on benefits and NHS and is practical and my sister Lyn a brick and star.  Luci really tries to be good and so does Tom her boyfriend, and Chris my eldest son is thinking of me constantly and I am glad he is gardening as this means he is creating That I like very much and hope he will always do this.   I have to thank Alex and Simon for their unerring support and love in my journey and my very worried sister Cathy who I worry about myself.  Wendy my cousin and Cathy are threatening to come down and give my house a blitz when I am in hospital very scary I have witnessed their blitz’s and I know it will be strange to have such a clean and sterile house, HELP! No really it does need it so they have my blessing It will be a relief not to have to do it all myself.  All I can say is Luci and the 3 cats watch out.  The other people who have been helping me are Nathalie from Switzerland, Natalia who is always there for me and answers officious questions from all sorts of people What a lady she is!  Lisa Feldman who has had major surgery in the last year and Donal from Southern Housing what a star he has been and it was only last year he lost a sister to cancer so God bless them!

My friend Stella who is a fellow writer texted me to say ‘Well I have survived’ She has just had an op for breast cancer I wish her great healing and lots and lots of love xxxxxx

I am off to Glastonbury for a few days I am so excited I love Glastonbury and am going to be doing a little fire juggling cant wait Thank you the organisers for making this festival possible and I really hope to do some radio when I am down there too.  Hurrah will let you know about it when I get back meanwhile have a nice life!

Always Double Check!

After attending Meisner at the Emporium, doing a show “Your Voice Matters” (a magazine show with many topics) at the radio plus “Same difference” ( a show about disabilities and the DLA rung right on time during the show, I was almost tempted to put it on air but I did not that was close to getting into trouble with the authorities, and maybe they would have revealed sensitive data!)  and also giving in my writings for the Amazing Creative Futures competition(busy morning eh!)

A strange thing happened to me today in regards to unexpected.  First St Johns phoned up to ask if I could take Luci home as she was feeling unwell and as I was in the middle of a show I said no I could not but would try and find someone to collect her.

Then I phoned the hospital today as when I went into the CT unit yesterday the girl behind the counter was not helpful and had such a brisk manner any patient who was feeling sensitive would be upset by her attitude.  She stated yesterday that the doctors had not signed it off yet so she was not sure when I was to have the CT for my chest. As it happened today they told me to come to A and E and I would be given a scan immediately I asked casually what the emergency was and they said that I was going to have my op on Monday.  So in shock I had my scan.   After the scan I ask the doctor if there had been a mistake as I had only just seen the specialist at Kings on Wednesday and it was only Friday what could have changed? He promised to find out and phone me the next day at 2.

Meanwhile I decided to take the law into my own hands and phone up Kings Liver Dept. who I am now under to do the Whipple’s procedure and speak to my nurse there.  She was not there so I tried to explain what was going on to another nurse (the pancreatic nurse) and could she get the other nurse to speak to me on the phone.  Rachel phoned back on said ‘what’s all this about going to another hospital and having the operation?  I was puzzled so I asked her if I could explain what had occurred that very day which I did she said that she would phone the specialist and find out if he had emailed anything to her and she promised to phone me back.  Whilst I was on the phone Nathalie my volunteer for the radio who is from Switzerland, who very kindly offered to accompany me to the hospital was asking what I was looking for and I said my phone and she started laughing and pointed out the reason for not finding my phone in my bags was because I was speaking to the nurse on it!  Thus was my state of shock at being told I was about to have my op on Monday.

The nurse did phone me back and her very words were “ I am so sorry you will not be having your op on Monday there has been a gross miscommunication, you are under Andreos no one else DONOT GO DOWN TO KINGS IF SOMEONE CALLS YOU AND SAYS YOU HAVE YOUR OP DONOT DO ANYTHING WITHOUT ME OR ANDREOS PERMISSION.  Do you understand this clearly its important for you to understand?  I answered yes I did and would only be answerable to her and Andreos.  I did get to ask another question I said that I was in shock on Wednesday and was not sure if I heard alright  Do I have the part Whipple’s procedure or the full one and do I have to have KEMO after and she said that it was the full one I still can’t believe this as it was only last week that the specialists were telling me that I would not most likely be having the Whipple’s procedure  Strange how things turnout especially as the DLA phoned to say that I do not qualify for the special rules I thought to myself hurrah I will live for more than six months Whoopie,  but normally I would complain cos I did not get the benefit!  Irony of life!  The moral of this story is to always double check if things seem wrong.

Well here’s to another day tomorrow I shall be juggling at people’s day next to City College with the young hoola hooplas and then reading a poem or two for Brighton Mad Poets at Corn Exchange stage  Exciting stuff

Blog Number 7 Back to Kings Hospital

I had to go back to Kings today and my sister Leonora came with me to talk to the Liver and stomach specialist who is very dynamic and confident who told me that I will have to have all three ops and the kidney would not be key hole as they needed to remove all the cancer so there it is in about 3 weeks I will have a pre op meeting and meanwhile I will have a chest CT scan up at the Royal County Sussex and then after that the big ops Phew!

I will blog more but I am very tired today so I will continue with blog number 8 tomorrow meanwhile have a lovely sleep and a nice life and I do really mean that One thing cancer is teaching me is to value my life as well as others That is pretty cool too.