Home comforts in hospital
Thank you for your answers to my concern over upcoming SCT. Taking home comforts to hospital was mentioned. What would be allowed in hospital? Also coping with isolation which I assume now will be more difficult with COVID. Consultant has painted a worse case scenario about possibility of a feeding tube and horrific diarrhea.
Best Answer
-
Hi Glynis, I’m one of the community champions and had a stem cell transplant 9 years ago. I’ve seen the responses to your other post and can understand your concerns.
Nobody would deny that a stem cell transplant is an easy process to go through, but we are all different and our experiences vary from person to person. Your consultant is possibly warning you of the things that may happen, but not everybody is affected the same way and many of the things you are being told may not happen, but they need to make you aware. The chemotherapy you have immediately before the transplant probably will give you diarrhoea as it is very strong, but this will only last a few days. It can be quite debilitating, but bear with it as it is short lived.
Not everybody needs a feeding tube, and if you are able to take some form of nutrition normally there should be no need for a tube. I didn’t have one and there will be many others here that will confirm they didn’t either. In the early days after your transplant you will probably struggle to eat and keep things down, but try to eat whatever you can to keep some strength. I found nutritional milkshakes (which the nurses made with ice cream!) and soups helped me and were easier to tolerate. You will undoubtedly lose weight through the transplant, but I gained quite a bit in the early days of my treatment when I was eating like a horse due to the appetite the steroids I was on induced. I think that helped.
As far as coping with isolation is concerned it’s a case of taking whatever home comforts you want that will help you pass the time. Think of the room as a hotel room and make it your own to an extent. You will probably have a TV in there with a good selection of digital TV channels. Most hospitals these days will have Wi-Fi, perhaps for a small fee, that you can link a laptop or tablet up to and keep in touch with the outside world via social media, TV channels and watch videos. These days you could also use a variety of video communications methods to keep in touch with friends and family remotely.
You probably won’t be in total isolation, and it is likely that even in these Covid times, you will still be able to have visitors, but it’s best to keep these to your partner or a small number of very close relatives. The hospital may have extra precautions to make sure visitors are not affected by Covid before they see you.
You will also be able to take your phone to keep in touch with people. The days of not being able to use phones in hospitals are over, as they don’t affect medical equipment the way it was thought some years ago. There will be times that you don’t want to be disturbed, so thou can turn it off, but it will be useful to keep in touch with people outside. Don’t forget a phone charger!
If you read, take a good selection of books, magazines, maybe puzzle books, anything to keep you occupied during your time in hospital. I was really tired after my transplant so spent a lot of time sleeping. When I was awake I mainly watched TV or listened to music on my iPod. My wife brought my own pillows from home which I found more comfortable.
The reality is that you probably won’t be in hospital that long. As long as things go well it should only be a handful of weeks, certainly not months. I was allowed home three weeks after my transplant by which time my bone marrow was starting to show signs of climbing cell counts. Your recovery can then continue at home with regular check ups at hospital.
A stem cell transplant is really daunting, but the number of patients on this forum alone is a testament to the fact that it works and you can come out the other side. Go into it feeling positive that you will get better and focus on a positive outcome. For me that goes a long way.
Me and the other patient champions, the other patients here on the forum, and the brilliant Anthony Nolan team are all here to support you and each other. Nobody understands what you are going through better than those of us who have gone through it or are at the same stage as you, going through transplants themselves. You will always find support here.
I hope this helps, but if you have other questions please ask away.
All the best,
Steve
Answers
Hello Glynis
I echo all that Steve has mentioned.
It is good to have a glimpse at others experiences, in terms of how their journey looked, so you can prepare your self emotionaly, be mindful we are all unique.
Throughout your stay you can always message us here to get support too.
When i was in having my SCT back in 2019, my team where great at keeping me up-to-date with what was happening and when or why. I suffered alot with nausea and stopped eating but didn't want a feeding tube, so my team got me a dietician who supported with high calorie supplements and snacks. In time and with encouragement and support my body gradually got past the nausea.
Keep talking with your nurses and Drs when your in and be very honest about how your feeling, even if you think it's nothing to worry about, that is for them to decide. You will find that they are all incredibly supportive and will put any worries or anxieties at ease.
In terms of home comforts i found the following very helpful;
- pillow from my bed
- headphones for music or audio books
- books and magazines, even though i don't read much, it helped to have the option
- puzzle books like word searches or suduko
- a blanket
- some essential oils like lavendar which is very good for relaxing/sleeping
- i had an item of clothing from a loved one so i could feel close to them
- snacks. Lots of snacks just incase. Once you have started the conditioning treatment and most importantly from day 0 you won't be able to eat food that is left out in the air i.e. a packet of opened biscuits, so put them in an air tight container and keep the lid on. So if you have some favourite snacks it might help you keep up the energy levels
- loose fitting clothing or lots of comfy pjs
- dont forget chargers for any devices. I had my phone, laptop and ipad
- pens, pencils and note pad so you can make notes from ward rounds and conserve mental energy, even draw or doodle
- i took an adult colouring book and a dot-to-dot book 🤣
I want to emphasise taking anything that makes you feel safe, confortable, close to loved ones like photos (previously mentioned) positive affirmations or your goals for after SCT to stick on the wall or have close as this will really empower you on good days and keep you focused on the not so easy days.
Just be reassured that no journey is linear and if for any reason you come across challenges there is a wealth of knowledge, expertise, services/disciplines and emotional support available within the hospital setting and here, at Anthony Nolan
Protect your mental health by keeping in contact with friends and family and if at any point your overhwlemed let a nurse no. You will form strong bonds with them quickly.
Best wishes,
Michelle
Hello
I’ll add my tuppenny worth too. I was discharged from hospital three weeks after my SCT in 2015. After other people’s comments, my go-to comfort blankets were my pillow from home, my music and the radio. My experience was that although I took lots of ‘activities’ in with me, these gradually returned home, as I was completely wiped out and struggled to even keep my eyes open. I was often ‘awake’ though, listening to the radio. I too completely lost my appetite but I found the dietician was very supportive, reassuring and realistic about my abilities. A feeding tube was suggested on one occasion, but my reluctance was respected and I never felt pressured. My advice would be to take one day at a time, look forward to better times ahead, and be reassured that the clinical team will be hugely alert to changes in your day to day treatment and care needs.