Diary of a bone marrow transplant patient

In February 2004, Winnie Clifford was diagnosed with Acute Myeloid Leukaemia. Five years after undergoing treatment she was given the all clear, only to discover less than three weeks later that there were still some leukaemia cells in her blood stream.

After undergoing six rounds of chemotherapy, a decision was made to look for a bone marrow donor. A total of 47 donors were narrowed down to one and Winnie underwent the transplant at the Beatson Hospital in Glasgow.

Here we include some extracts from her diary about her journey through her bone marrow transplant at the Beatson Hospital in Glasgow, including the letter she wrote to her blood marrow donor.

Day 1: Inpatient at Beatson for donor transplant. Donor: UK male, age 20. 10/10 match which is amazing. Bit nervous not knowing the staff, but all have been really nice. I got blood taken, line not working, bone marrow test (painful). Chest X-ray, ECG, MRSA test.

Day 2: Line worked but not efficiently so had to come out (not too bad). Cannula fitted after three attempts (pretty painful) – thank goodness the third one worked. Decided to get hair shaved off so wig would sit better. Chemo standard eight-and-a-half hours. Methylprednisolone (steroid), MabCampath, Fludarabine, Busulfan. High temperature, high blood pressure. Piriton for rash and Paracetamol for temperature.

Day 4: Line fell out – went for new line. Blood sugar was high so they were checking that but think it was due to the steroid medication. Rash came back so more Piriton.

Day 5: Started off as usual – wakened at 6am, breakfast at 8, shower before chemo. Drowsy due to medication and then felt nauseous. Ate lunch but had sandwiches for tea with crumble and custard. Tea and toast later.

Day 6:  Started new chemo – so far so good, got bottle of steroid first then chemo. Blood sugar still high.

Day 7: Can’t believe it’s a week already, hope the rest goes in as quick. Last day of chemo. Blood sugar still high.

Day 8: Finished chemo and went onto drug to accept new marrow. Started on a diabetic tablet as I am still on the steroid but hopefully it will calm down.

Day 9: Big day today to get new marrow – hope everything goes to plan! Had a few problems as my blood was O and his was A. High blood pressure, monitored every half an hour.

Day 10: Not a great day, really tired, monitored every half an hour.

Day 11: Felt a bit better but still tired having not had a lot of sleep. Managed to eat a bit more. Blood sugar not as high but still not right.

Day 14: Slept a bit better last night. Noticed a blotchy rash when I had shower. Got platelets in afternoon.

Day 17: Didn’t get much sleep. Doctor came around and seemed pleased so far. Still getting blood sugars checked and drip for magnesium. Started injections.

Day 19: I try to sleep at night but seem to want to sleep during the day due to lack of it. Temperature a bit high and blood pressure also, and a touch of sore throat.

Day 20: Counts going up. Hurray!

Day 21: Three weeks today since I came in – possibility that I could be home by end of the week fingers crossed. Got two units of blood.

Day 23: Still lacking in sleep. Told I can go home Friday if everything is OK. Temperature took a jump in the evening, causing concerns. Getting two antibiotics and platelets, fingers crossed it’s nothing to worry about.

Day 24: Didn’t go home due to high temperature. Given antibiotics and more magnesium. Temperature still on the high side. Doctor doesn’t seem too worried.

Day 25: Temperature still high, on antibiotics and paracetamol.

Day 26: Felt really exhausted today. Temperature still on high side – hope antibiotics are working otherwise line may have to come out. Loss of taste and appetite, hair loss, dry skin – not so good. Side effects of having an infection.

Day 27: Felt slightly better but my temperature still wasn’t getting as low as it should so they decided to change antibiotics, give me platelets and blood, and take line out as blood cultures have shown that the bug was in line. Just my luck.

Day 28: Really tired today. Got two units of blood. Temperature still high, just feel washed out.

Day 31: Waited to go for a CT scan for hours and finally got back to the ward after 3pm. I also got a biopsy done and another line –  just seem to be getting prodded with needles all the time.

Day 32: Felt a bit low, things beginning to get to me.

Day 33: Started steroids – hope it works. Feel a bit brighter, not so tired.

Day 34: Temperature OK. Steroids making me feel a bit better. Now on 20 tablets in the morning – it takes me all morning to swallow them. Had to use pure apple to get rid of horrible taste. Had hand and foot massage which was really nice.

Day 35: Temperature OK. Blood sugar high. Got insulin injection, got moved to ward and hopefully will get home on Friday. Fingers crossed! On loads of tablets which is making me feel a bit weak and shaky. Blood sugar high tonight otherwise everything else OK.

Day 37: Had hoped to be going home but blood sugar is still high – hopefully tomorrow.

Day 38: Finally got home!

Winnie’s letter to her donor:

To a special young man

Dear Donor,

It is so hard to put it into the right words to express how to say thank you for generously donating your bone marrow. You must be a lovely person to go through that, especially for someone you don’t even know. I was overwhelmed to know that they had found a donor for me as I knew my life depended on it. I am pleased to say that I am doing well. You have given me my life back and for that me and my family will always be eternally grateful. 

I take this opportunity to wish you all the luck in the world for a happy and successful future. God bless you.

Following a hopeful eleven months and three days after the transplant, she was told it had not worked. Within seven weeks, in October 2010, she passed away.

She is survived by her husband Dennis, who now volunteers for Macmillan at Boots drop-in centres in Ayr and Irvine as well as volunteering as a fundraiser, collector and e-campaigner.

The couple met as children and if she’d lived another three weeks, they would have been married for 40 years.

Extracts from diary written by Winnie Clifford