The recovery period for a stem cell transplant can be a challenging, even overwhelming time. You can find yourself having to deal with the pressures of isolation, and side effects – including changes in appetite.
In this powerful, personal blog, Noreen Siddiqui gives us a diary of the first 100 days after her daughter Ayesha’s stem cell transplant.
18 November 2015
Today Ayesha was allowed freedom for a short time – freedom from her attachment on the drip stand. After 19 continuous days of attachment, she was free for about four hours!
A huge step forward – her counts are stable, but her eating is still not good. Tonight, she orders baked potato with baked beans and cheese – will she eat some? Mmmmmmm…no, she doesn’t!
The potato and beans were fine, but the cheese looked a tad ‘dayglo orange’. So I was sent downstairs to the retail foyer, with Ayesha instructing me on FaceTime, so she could have a look at the food in the stores.
She selected pancakes with maple syrup, a panini with mozzarella cheese and basil, and Dairylea with Dunkers. She managed half a panini, two pancakes with butter and Dairylea cheese with Wotsits – not a combination ever offered at home but for the hospital, I think it’s brilliant!
19 November 2015
Funny how a parent never quite gets peace of mind when going through treatment. Ayesha is doing well – everyone keeps telling me this – but I think, ‘This is good, but something may go wrong.’
Cautiousness is a good word to describe the feeling. Or is it anxiety? We still have a year to be sure, but I guess this is a good start. Isn’t it? I’m always questioning everything – never 100% sure. I wonder if I will ever be 100% sure – not with cancer.
Ayesha is completely bored and desperate to get out of her room.
‘Please eat something,’ I tell her.
The pancakes that were so delicious taste awful today. The panini was ok – just a few nibbles today. The oral mouthwash that keeps her mouth healthy tasted salty two days ago. Now it tastes sour. The Wotsits that tasted great yesterday could not be faced today!
On Thursday night a neighbour, Norman Ross, who does voluntary work with the Hospital Broadcasting Service, had recorded messages of support from Ayesha’s friends – it was wonderful to hear their voices on the radio – telling Ayesha she was missed, that school was boring without her and who got a red light for talking! A little insight into school life – just as important as her medication!
Ayesha feels that as she has new bone marrow, she doesn’t have cancer any more – so she should go home! She is kind of right, yet it’s not that simple. Dealing with cancer never is!
25 November 2015
I feel the weight of responsibility of making sure that Ayesha takes her medication. At times I feel I could do with some help. I feel that if she doesn’t take her medicine, she won’t recover and it will be my fault. I’m always worried she may catch a virus.
Taking medication is getting harder and harder – things can be bittersweet – she has to take more medication orally and she becomes less dependant on drips- but she can’t face them. The taste leaves her feeling rubbish; it’s no wonder she can’t bear to put anything else into her mouth.
The only way Ayesha gets medicine is by having a spot of honey between each intake, and putting on a fun song on YouTube like ‘Chihuahua’.
It’s day 28 since transplant. I can’t believe that four weeks have whizzed by.
Ayesha’s counts are rising slowly in the right direction. She is no longer on on ‘protective isolation’. This means she is healthy enough to go out in open spaces, people no longer need to wear an apron when they enter her room, but she cannot go into the ward. There are a number of viruses around, so she needs to stay protected from those.
She is no longer on any drip or feed, so must try and drink water and eat sufficient food to maintain and increase weight. And this is proving to be difficult…very difficult.
There is mention of Ayesha going home for a few hours (I’m so grateful we live locally) but I feel that that this may not happen. A waiting game, as always.
23 January 2016
Ayesha is hungry and desperate to eat something. Her mouth is dry and the metallic taste persists. We have been directed to try and give her wheatgrass and turmeric to help her stomach, which may be too acidic.
What she craves for one day could be gone within 24 hours! She wanted feta cheese and red onion filo pastries, so I made them. We cut them into small slices and gave it to her on a big plate – she looked at them and decided she did not want them. So it’s chilli beans and rice tomorrow.
We’ve told her not to worry about food; it will come. But the wait is proving to be challenging.
30 January 2016
Ayesha is still not eating, but her fluid intake is stable. She’s losing weight and surviving on shakes. She is constantly feeling nauseous, and there had been some talk of ‘graft versus host disease’ .
Ayesha is also taking chemo again as a precautionary measure. This is partly due to the rare form of leukaemia she has, known as Philadelphia Chromosome.
On the bright side, there has been discussion of Ayesha visiting her school for 30 minutes on Friday 5th February. She is just visiting her class at the end of the day. Ayesha is desperate to get back to her school, her friends, her life.
5 February 2016 (100 days since the stem cell transplant)
How have I felt over the past 100 days? Worry, worry worry!
Initially I was concerned about how she would cope with strict isolation – but she was amazing and handled the situation with great maturity. She always managed to find something to smile about.
I was also concerned that she may pick up an infection – and I still am. Thankfully to date this has happened only once. She has never been admitted since her discharge, but she has spent the majority of the time in bed.
There is no sense of overall joy – no time for appreciation of the opportunity present through Anthony Nolan’s donor match. This is simply another hurdle to get over in Ayesha’s long cancer journey.
What do I hope for? That Ayesha overcomes any issues she has – like the impending investigation to establish if she has graft versus host disease. That the chemo she started on day 60 could be stopped.
That she starts to eat, regain weight and energy and can return to school.
That we can once again see our bright, active, cheeky and inquisitive daughter growing up normally and having fun with family and friends.
Finally, that we can take a family trip to Disneyland , Florida and leave some of the memories of the cancer behind – but I’m unsure if we will ever forget it completely.
If you (or any of your loved ones) are finding the recovery process challenging, we’re here to help. You can contact our Patient Experience team or join our Transplant Community for advice and support.