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I am new to the Forum. will shortly be starting 4 months of DVTD drug regime followed by a SCT next year. I haven’t yet met my haematology team in person to discuss the detail and know I need not to think too far ahead before I receive the facts from them, but I can’t help worrying about how I will cope living alone after I’m discharged from hospital after SCT so wonder if anyone has experience of this. I’m a widow with no children, no close family in the area and , although I have good friends I don’t think I can expect anyone to come and live with me for more than perhaps a week. Everything I read talks about what my caregiver needs to know, but I’m assuming many people have to manage this process without one. I look forward to hearing your own experiences and advice.
Hello glenc
They say that myeloma is a marathon, not a sprint, so it’s probably best to take each day as it comes and not to worry unnecessarily.
I had my Stem Cell Transplant back in 2014 but had family at home to help. Fatigue is probably the main issue whilst you recover, and avoiding any infections. I think that the hospital team would only let you home if they thought that you were well enough to manage on your own, and it is likely that some support might be available through your GP and district nurse, depending on where you live.
I would also suggest making contact with one of the local myeloma support groups if there is one in your area and Macmillan who are both good sources of advice.
Good luck with your DVTD treatment.
Hope this helps
David
Thanks for the advice David. Especially about the marathon! I definitely need to start taking it one step at a time and wait for the discussion with my haematology team. I hope you are still doing well 9 years after your transplant!
Hi Glenc
Firstly I’m sorry that you have got Multiple Myeloma and I hope that your first lot of treatment goes well.
I’m in a similar situation to you, I live alone and am due to have the Stem Cell Transplant in late September/Oct, having completed 4 months of DVTd
One of my biggest worries is being on my own at home and hoping that I will cope OK. I don’t have any immediate family and will rely on friends and neighbours for support/shopping etc. It’s all the cleaning, washing and avoiding of infection that worries me. I don’t really want to have anyone live with me as my house is very small. Some friends have offered for me to stay with them, but being in your home is much easier.
I know everyone’s experience will be different and some will cope better than others. If only we had a crystal ball!
I have had support from an organisation call First Community Health and Care who have provided me with all sorts of equipment to help, such as shower stool, perch stool, toilet frame etc. I’m hoping this won’t all be necessary but it’s here if I need it. The main thing is to build up strength and eat well, to help with recovery.
I’ll let you know how it goes
Wishing you all the best
AmandaM
Thanks Amanda. I wish you well with your SCT and recovery. How did you cope with the DVTd treatment? I agree trying to live in a sterile environment when you may feel too weak or ill to be cleaning is a challenge, but getting someone in to clean for you means risk of exposure to infection too. I’m already noting the areas where bacteria tends to build and planning alternative arrangements like ditching the draining rack! The equipment sounds like a good idea and I’ll look into that. I’m also thinking that using Wiltshire Farm Foods for complete frozen meals delivered to my door might be a good idea for the first couple of weeks. Basically all the things I put in place for my elderly Mum! Lets hope we feel much stronger than we anticipate. At least covid has prepared us to a large extent for the isolation part of it so just a few added challenges! All the best for successful treatment and many years of remission.
Hi from Marty! I had my stem cell transplant at the beginning of 2020 and was (and still am) in a similar situation to you. I like my independence and the ability to make my own decisions without feeling like an invalid. It is important to discuss with your treatment team all aspects of your SCT (before, during and after). Doctors and nurses are important, but so too are social workers and dieticians. Social workers can help you access appropriate post-SCT services that may be available through local government agencies and/or volunteer organisations such as Meals-on-Wheels. You probably won’t have much energy to go shopping let alone cook for yourself. Even now, I buy my groceries online and have them delivered so as to avoid germs and infections from crowds. In particular, my sense of taste changed dramatically. For months after my SCT I found a lot of food items and drinks that I normal like absolutely repulsive. So it was a bit of an experiment to see what I found palatable. A lot of people going through SCT have mouth sores which can make it difficult and painfully to eat. So access to a good dietician is crucial. Some food items and drinks also need to be avoided as they can lead to infections post-SCT, so make sure your treating team give you a list of what you can and cannot consume. Maintaining good mouth hygiene is also important. Be prepared to lose some or all your hair during the SCT. So it might be a good idea to look into head coverings. My biggest issue during and after my SCT was diarrhea that often came on frequently and without warning from the SCT itself and subsequent medications that I still take. While in hospital and afterwards at home I recommend having plenty of underwear and clothes on hand that you don’t mind throwing out if you can’t make it to the toilet in time. Despite all these issues, I didn’t find the SCT process and aftermath as bad as I expected.
Thanks Marty for taking the time to reply in such detail. That’s all really helpful, practical advice. I’ll definitely be covering all aspects with my team. I’d been warned about a few of those issues. My main worry is the extent to which I’ll be able to keep my house as clean as it needs to be and whether I’ll be able to coook/feed myself. We no longer have meals on wheels in my area but Wiltshire Farm foods deliver complete frozen meals and that seems like a good option until I get some energy back. I hope you continue to do well post transplant. How long did it take you to feel more or less back to normal, if at all?!
I found getting back to normal is a slow process. It took about six months to get my sense of taste back to somewhere normal. However, my main problem has been (and still is) fatigue. This is a result of the SCT itself but also the side effects of medications I have to take. I tend to only use those rooms that I really need and close off those I don’t. This reduces the amount of household cleaning I need to do. I am particularly fussy about washing towels and bedding, which I do at least three times a week. I also have a complete change of clothing every day. Germs love fabrics. Thank goodness for washing machines and dryers. Fatigue can hit suddenly and be severe. It’s like the entire bottom of a full bucket of water just drops out in one go. Sleep does not seem to help. As I remember, about six months after my SCT I had to begin a two-year program of immunisations. This is because the SCT wipes out your immune system’s ability to recognise those diseases and germs that you developed a resistance to throughout your life. So, I had to have all my childhood vaccinations (i.e. tenanus, mumps, German measles, etc) all over again. The current medication I’m on can also affect your blood counts. Therefore, I need to have blood tests at least once a month. This means getting up extra early on the day, so I am first in line to have my blood taken. I do this so that I am not sitting in a waiting room full of people coughing and sneezing any longer than absolutely necessary. Despite all your precautions, be prepared to go back into hospital at short notice. For us myeloma patients, otherwise minor illnesses can be much more serious. Two years ago, I caught shingles which caused the affected skin to blister and turn black. This required several days in hospital, where they pumped me full of anti-biotics. I hope this info helps without scaring you. Regards from Marty!
Sorry Marty I didn’t get around to replying to your second message but I am very grateful for the advice. Some of the info is a bit scary but I’m someone who’d rather know in advance and face the fear then feel more prepared to get on with it!
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