Ask The Nurse // 5th November 2019
Being diagnosed with myeloma can be the start of a complex learning journey. First, you need to process what myeloma is and what the diagnosis means for you and your loved ones. Next, you are faced with having to navigate treatment and its potential side effects.
One treatment that may be discussed is high-dose therapy and stem cell transplantation (HDT-SCT). For some patients, choosing to have HDT-SCT can be daunting, especially if they have never had a medical procedure or spent time in a hospital before. As a result, we often get asked for advice on what patients should think about before going to the hospital for their HDT-SCT.
In this month’s blog, we thought we would talk about things you can do to prepare yourself for a stay in hospital to have HDT-SCT.
Whilst it is important to talk to your team at the transplant unit and discuss any issues or concerns you may have, you may also want to think about the more practical things and items that will help you to feel more comfortable during your stay.
Here are some of the things we suggest patients and family members consider taking into the hospital with them:
When thinking about clothes to pack we often suggest taking:
- Plenty of sleepwear, including slippers, socks and a dressing gown. You may be asked to change your clothes regularly to minimise the risk of infection
- Loose-fitting clothes with zips or buttons as they are easy to take off. This is useful when you are receiving high-dose therapy or other treatments
- Plenty of layers e.g. (vests, T-shirts, shorts, and cardigans). Hospitals can be very hot or cold at times
Your treatment may make your skin dry or more sensitive than normal. So, when you pack your toiletry bag, you might want to include sensitive shampoos and soaps, as well as skin moisturisers, lip balms and hand creams, even if they are not something you usually use.
Oral hygiene is very important, so make sure you pack your toothbrush and toothpaste but do avoid any alcohol-based mouthwashes. It is worth investing in a soft toothbrush to reduce the risk of damaging your gums and minimise discomfort if you experience oral mucositis (inflamed/painful lining of the mouth) due to the high-dose treatment.
We also recommend that you take soft toilet tissues or wet wipes with you in case you experience any loose bowel movements or sickness.
Food and Drink
If you are thinking of bringing in your food and drink make sure you check with your healthcare team for any hospital rules or precautions you need to take.
If your healthcare team is happy for you to bring in food and drink you might want to consider taking the following:
- Plain food (e.g. biscuits or bread) as it might be easier on your stomach
- Mints or boiled sweets – these can help take away nasty tastes in your mouth following treatment
- Cordials and fizzy water – you will have to drink a lot of fluid, and plain water can get a bit boring
You may also want to let any visitors know that you will be on a neutropenic diet (‘clean diet’) directly after HDT-SCT and you will be avoiding foods that may potentially cause a stomach bug (e.g. unpasteurized cheese or milk, unwashed fruit).
Things to keep you busy
To begin with, you may feel tired and find you spend a lot of time sleeping. However, as you begin to feel better you might start to feel bored and restless. To help you cope with this you might want to consider bringing some of the following items with you to keep you entertained:
- Mobile phone, laptop or electronic tablet
- Headphones, chargers and an extra-long cable that will reach your bed
- A notebook, books, and magazines
- Jigsaws, puzzles, board games or other crafts and hobbies
- DVD box sets or streaming device
If you are bringing a tablet or electronic device, check that the hospital has Wi-Fi or signal ahead of your admission. If not, you can download your books, music or movies in advance.
Remember, although you will be in hospital for a couple of weeks, you don’t need to pack everything at once. You can ask your family and friends to wash clothes or bring you more supplies when they come to visit.
There could also be extra supportive items or treatments available to you on the ward, so speak to your healthcare team if you are feeling unwell or uncomfortable. Do not be afraid to ask again for help if the supportive treatment you have taken doesn’t work or you are still feeling uncomfortable.
The clinical nurse specialist from the transplant team can also provide practical advice and further guidance before you are admitted, so you may find it helpful to contact your transplant team for further advice.
For more information, you can read our High-dose therapy and autologous stem cell transplantation Infoguide.
If you have any questions about HDT-SCT you can also get in touch with us through the Infoline (0800 980 3332 (UK) or 1800 937 773 (Ireland)) or the Ask The Nurse email service.
The Myeloma UK Information Specialist Team