17. October 2022 · Comments Off on Nine nights in Ninewells · Categories: Uncategorized

What follows is a section from the diary I have been keeping all this year. 

 

Aug 23: Feel terrible.

Aug 24: I was trying to get out of bed, when Marika came – our gem of a cleaner – and berated me; I just needed to get up and go for a walk. But I couldn’t. The pain is too much, like peeing acid.

Aug 25: Rang PRI and told Dr Gowan that I could not come. He talked with Dr Evans at the surgery in Dunkeld, and told me to go to Ninewells in Dundee where a bed was waiting. Heather drove us, and I was admitted into single room with bathroom. Can’t remember much, beyond a sea of faces and names, multitude of tests and an x-ray of chest. Chest?

Aug 26: Bad night. Dr Gowans comes with a convoy of cohort doctors. Asks for a stethoscope as his daughter has pinched his; just heard she had got into Edinburgh to study to be a vet. I must drink, I am told, but peeing so painful. Akii brings a few things. Ultra-sound reveals a shadow on bladder or colon.

Aug 27: Another bad night. So weary. Non-stop saline drips. Antibiotics. Blood. Lovely day outside, so go on an adventure, taking my drip stand with me like a pet on a leash. Just into the next room which is empty and has the most incredible view of the river; I just sit and look. Guy moves in later; feel envious. Chat with cleaner Kevin whose marriage just split up; felt he was most likely gay. So ready for sleep but worrying about the letter I promised Viv I would send for David’s funeral; he died of tongue cancer ten days ago. What a terrible thing! I was their bridesmaid in 1962.

Aug 28: Akii comes at 11 with toothbrush and pyjamas. Drafted a letter in my notebook. Finished the Kazue Ishiguru book, When We Were Orphans; I now see the themes more clearly that have haunted him throughout his books. Peeing non-stop, pretty miserable. At 8pm suddenly pushed into a bay with three other women. No warning. Lights not off until after 11, as very noisy and busy. Julie next to me seems grounded. Alison a complaining cow. Whoever is behind the curtain, very ill.

Aug 29: Slept reasonably until 7.30. CT-scan at 10.30. Weird or what; I am full of dye. Shower and change clothes. Then peed my new Plumo pants. Back in bay now. Cold. MRI discussion continues … (to have or not to have). Alison has gone. Hallelujah! Angry unhappy woman.

Aug 30: Woke in tears. Very low. Mists over the landscape; I am by the window which is lovely. Couple with an umbrella, must be raining. A young man running, taking his body totally for granted. Pyramids atop buildings with glass and reg and green struts. Curtain opposite drawn to reveal Jessica a young Ghanaian woman with sickle cell and studying to be a forensic anthropologist. She wear a huge red snoody-type hat; we never see her hair. Spend all her time huddled in bed with her mobile, even takes it to the toilet with her. Her mother comes to visit, resplendent in animals prints and bringing baby pyjams for Jess that leave little to the imagination. Julie’s husband Gary comes every day after work.

Aug 31: More in balance today. Shower. Gout pill seems to be working; foot back to near normal, and no side effects. Internal probe at 4pm tomorrow. Caroline came into fourth bed but already packing to go back to hospital in Arbroath. She seems to be fading fast. Julie goes Friday. Long talk with Jess last night about God. Lost the plot when she began quoting scriptures to me. Patsy mailed. Kara is on the M25 with Tom driving to Italy. How lovely.

Sep 1: Rabbits. Aching and diarrhea all day. Camera up the fanny finally at 4. Zaiheb took me in chair down to urology, where I was laid on a bed and then curtains drawn back to reveal an audience. Very Handmaids Tale, I thought. My bladder looked good, it was decided, so problem had to be bowel. Another CT-scan planned, then camera up the backside seem to be on the cards. Feel very despairing, distressed. Caroline leaves, Jess leaves.

Sep 2: Julie goes home at 2. I still not cleared. I shall miss all the lovely staff – junior doctor Carly, nurses Rosie and Urooj (rouge), student Morpeth etc. who all come to chat at various points. Dr Gowans pointed out that I was so ill due to infection and nothing to do with the cancer, but I was his patient so he was keeping me close.

Sep 3: Reputable night’s sleep. Doctor came and discharged me. Pharmacy sorting out drugs. Came back from shower and graduate nurses Zaiheb and Courtney were standing by my bed, grinning. When I approved how neatly they had made it, C said, “If we had had a iron , we would have ironed it for you.” Brought tears to my eyes. Akii came and Zaiheb found a chair. Wheeled out to Graham waiting by the car; he drove us back. Feels weird to be back home, here. Felt safer there.

 

Nine days of superb care made a great difference. Thankyou Ninewells. Thankyou NHS. 

14. October 2022 · Comments Off on Transfusion Day · Categories: Uncategorized

I was not good over the summer. You can see how much weight I had lost …

Friday 29 July 2022

I was in such a daze the date of the first transfusion that I can no longer remember it. But roughly a month ago. It took six hours, with time spent awaiting delivery of the bags … it had all happened, been organised quite fast, which may explain? I do recall that each time the nurse hooked them up, I said thank you to whoever had been the donors. Blood is a precious commodity, and potentially life-saving.

I am on time today, 9.30am on the dot, having driven 25 miles. But am then confused (and irritated) by the new-style mandatory mask, that has ribbons to tie behind the head. Such a palava! Fortunately Akii finds an one in the car. He then leaves to catch the 10.08 bus into Dundee.

Everyone is now calling me Angela; seems I have become a regular. I take a chair on the back row. Only four others patients so far. A dark-haired nurse with gothic eyebrows and loads of tattoos offers me coffee, tea, water or lemon water. I accept the latter, which proves very refreshing. Unpack my backpack while laughing that the guy next to me just ordered a Guinness. Cancer and a sense of humour!

The floor is coral coloured. Walls pale apricot. Chairs dark blue. Nurses’ station, grey.

9.40: Nurse finds a vein for the canula. Ouch, ouch. I am such a wuss. What is a wuss? A pathetic weakling, responds Google. Sounds about right. My blood type is 0+, as is most of Scotland. Blood pressure slightly down.

10.00: Bag in place and dripping into me nicely. Feel okay, just very tired.

10.05: Brought the wrong glasses. Can’t read. BP100/62. Two new patients: an Indian man in his 30s, and a woman in her 50s wearing a turban. Nurse notes: “Most are creatures of habit and always head for the same chair.” A woman with long blonde hair is being told gently that she is likely to lose it. Susan talked with her for over an hour; amazing patience and empathy.

11.15: Eight of us. Unplugged to go to the toilet. Plug myself back in on return. Peeing is painful.

Times passes, staff constantly on the move; they never stop for a minute. Man in his 60s waiting for pills has “two grandsons waiting outside in the car”.

11.30: More lemon water. An older woman asks for a cushion. “For your wee bum?” responds Susan. The seats are not as comfortable as first imagined. My nurse, Lorraine, has loaned me her reading glasses; read a few pages, heading towards the end of The Man Who Invented Infinity.

12.15: BP 122/72. Now my ‘bum’ is hurting. Sitting too long.

12.20: Second bag. Jolly conversation about urine infections. Choose an egg sandwich for lunch, the package stating ‘Handmade in Scotland with passion for over 25 years’. Also a yoghurt. “Late today”, commented Lorraine’ Food usually here at midday.” I ask her what she had planned for the weekend, and am told with a gleeful grin: “A Roxy MusicTribute Band, and if the sun comes out, a nice round of golf.”

13.00: William in the next chair is reading. Not a social creature. Our ‘bags” are level pegging. Everyone else is sleeping or on mobiles. People drift in and out collecting meds. A tiny Asian woman. An obese woman in a wheelchair. As I watch nurses changing plastic aprons and gloves every time they approach anyone, I am horrified to think of the waste …

14.00: Bags are empty, flushing with saline begins. Canula removed. Gather myself and leave. Outside, waiting for Akii on a bench, William passes and nods. “See you next month?” I ask. “three weeks for me”, he replies and is driven off … No idea if and when I will be back. Duncan (Dr Gowan) was talking about six months of transfusions, “to see where we go”. Back on August 25 for another consultation. Wish I felt better. Tomorrow, maybe.

Waiting every two weeks for the appointment with the consultant, I sit opposite this lovely Chinese silk painting of “100 birds”. It is always off kilter and I never leave without straightening it. Something positive I can do, somehow, to make me feel useful rather than completely useless.