Being away from the security of the hospital can make some people feel anxious. But if you’ve gone home, it means you are doing well and it’s important to start taking control of your recovery. Think of it as one of the first steps in returning to having more freedom in your life.
You probably feel like you already have lots of things to think about when it comes to your recovery. If you record all your information in a diary or your smart phone, it will enable you to;
This might be as simple as making sure you take your medication for a week without forgetting or going for slightly longer walks each day, the choice is completely up to you.
‘I think it’s really important to constantly have some kind of goal, even if it’s just to get out of bed that day.’
Georgie, had her transplant in 2015
There are many aspects to your recovery and you can set as many goals as you want. Here are a few suggestions to get you thinking:
Exercise may feel like the last thing you want to do, but it can help to reduce fatigue and improve your physical strength. It's important to not overdo it as your fitness, endurance and muscle strength will have reduced during your treatment. Set yourself small goals and build up gradually over time.
We have some advice on keeping active and you can also speak to a physiotherapist at your transplant centre. They can give you specific advice about the types of exercise and how much you can do safely.
Having a good night’s sleep will help your recovery, but you might find it difficult to sleep at times. By recording your sleep pattern you will be able to look back on when these problems occur. This will help your transplant team to spot patterns and identify ways in which they can help.
Food and weight
After your transplant, you might find that your attitude to food changes. Your appetite might not be what it once was and food might smell and taste differently to you. Don’t worry – this doesn’t last forever.
Many people lose weight during this time – but your body actually needs more nutrients than usual, to help your cells renew and repair. To help this happen, eat little and often, and focus on food that you really enjoy.
Read our blog from dietitian Nicola, about managing your diet after a stem cell transplant.
‘If I knew I was gaining weight after my transplant that would have been helpful to me.’
Georgina, had a transplant in 2014
It’s very important that you keep yourself hydrated at all times to aid your recovery. Your transplant team will remind you of this fact on a regular basis. It might be easier to drink smaller amounts more regularly. Try to have a water bottle with you at all times – using flavoured cordials can make drinking large volumes more bearable.
There's always plenty to remember during your recovery so it's a good idea to come up with a stratergy that will help you keep on top of things.
After your transplant, you will still have to visit your hospital outpatient department on a regular basis. This is to check that:
You’ll also have regular blood tests that will measure your blood count, liver and kidney function, and check for viruses.
We know that trying to remember to take all of your medications at the right time is not always easy. Changes in your medication can happen frequently and getting used to the changes can be hard. Put reminders in your diary to make sure you don’t miss any.
‘I feel like I have to be my own stock taker at home. This is how many drugs I have got and this how long it’s going to last me.’
Georgie, had a transplant in 2015
During your transplant journey you will be at the centre of a large transplant team that is responsible for giving you the best possible care. They will all be experts in their field and can help you with anything you might need. It can sometimes be difficult to keep track of everybody’s name and remember what they do, so write down the name and contact details of the people in your team.
Your medical team will regularly count the different types of cell that make up your blood and other factors to check that your new immune system is working properly. These results are recorded every time you visit the hospital. You will be able to monitor your progress by looking at:
Being able to accurately recall when you experienced certain side effects and how strong they were can help your team tailor your medication accordingly. Get in the habit of recording any symptom or change you experience, when it happened and how bad it was, perhaps using a 1–10 scale.
Recovering from a stem cell transplant will probably be the hardest thing you ever have to do. There will be days when you are physically and mentally drained – but there will be good days when you feel like you’re on top of the world.
There are great benefits to recording your emotional wellbeing. You can gain a sense of progress in your recovery – and it can also highlight when you need extra support from friends, family or a professional counsellor.
Information published: 10/10/16
Next review due: 10/10/19