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.
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.
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.
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.
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
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