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!
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.
Hi Beattheaverage!
I have lived here in Australia most of my life and travelled a couple of times between Australia and the UK. I am writing to share some of my experiences and wisdom. My second trip was shortly before I was diagnosed with multiple myeloma. It takes about 24 hours to travel between Australia and Britain which is physically draining even for the healthiest person. Luckily, I was able travel business class which enabled me to use the bathroom as and when needed (i.e. no queueing and frequently cleaned by in-flight cabin crew). The passenger seats were also more comfortable for my aching spine and ribs.
There are quite a few differences between Australia and the UK in regard to how Covid-19 has been (and still is) dealt with. Australia is a federation in which certain issues are administered by the Commonwealth government and others by the individual states or territories. The Commonwealth government deals with people’s entry into and out of Australia. Until recently, it severely restricted the entry of people coming into and leaving the country. The most important issue here is that those wishing to enter Australia need to be “full vaccinated” against Covid. This definition has changed recently. The Commonwealth government has its own website. So, it is best to check what the current immunisation requirements are and to keep checking as they may change with little or no notice. Second, check the website to see what medications you are allowed to bring into the country. Also some myeloma medications are very expensive and only provided at low cost to Australian citizens. So make sure you have enough for your trip and keep them in a secure place. It would probably be a good idea for you to carry a letter from your GP or specialist outlining your medical condition, treatment and prescribed medications to pass through Customs and for medical staff if you need treatment here. I have registered my details on the Australia MedicAlert website so that information is available to medical staff if I am found unresponsive. Ambulance services are not free in Australia. It would be a good idea to purchase ambulance insurance as a trip to hospital can cost around $1,000. Also purchase medical insurance to cover the costs for any medical treatment.
The states (i.e. Queensland, News South Wales, Tasmania, etc) and territories (Northern Territory, Australian Capital Territory, etc) are generally responsible for providing health services. The health system in Australia is very good in the capital cities where high quality specialist services are available and where the vast bulk of the population live. However, specialist services are often not available away from the capital cities where towns have small populations, are widely dispersed and can be several hundred kilometres (and many hours) away from emergency or specialist care. This means many country hospitals are only able to provide basic medical treatment. This is one issue that has prevented from travelling too travel far in recent times. Another issue is that over the last two years each state and territory has imposed their own range of restrictions to prevent the spread of covid. This has included limiting or preventing people crossing from one state or territory to another. This has caused controversy by stranding people for weeks or months. However, in recent times many of there restrictions have been relaxed, but could be re-implemented if more infectious and dangerous variants of covid emerge. Again, each state and territory has its own government website that outlines their covid requirements and restrictions. Unfortunately, I don’t know much about the situation in New Zealand. I hope I have been helpful in regards to coming to Australia.
I had my SCT the beginning of last year. Mouth hygiene is very important as a lot of people going through SCT report severe mouth sores which are both painful and prone to infection. Luckily, I didn’t suffer this. The hospital provided me with what can be best described as a small cube-shaped sponge on a thin stick (looked like a lollypop) as even soft toothbrushes were considered too coarse. Ask your hospital if they provide these. Otherwise try a pharmacy. Get a good supply of underwear that you don’t mind throwing away. I found frequent and sudden bouts of diarrhoea was an issue. Looking back I can laugh about this now, but it was not funny at the time. I found boxer-type pants worked best. Head coverings are also a good idea as I lost my hair (again) during my hospital stay. Your husband might also find his sense of taste and smell changes radically. Normally, I would willingly crawl over broken glass for a good cup of coffee. In the lead up to my SCT and for about a month afterwards, I could not stand the stuff or any other drinks provided by the hospital. I also found it difficult to eat as food that I like also tasted horrible. As a result, I got so dehydrated that I was often put on a drip and lost quite a bit of weight. So there might be a bit of trial-and-error to see what your husband can tolerate.
Myeloma was on my mind all the time when I was first diagnosed especially as my mother also had it. However, I found that as time goes by I am less focused on it. Two years since my diagnosis, I often go days without it crossing my mind. It’s important to recognise that the treatment of myeloma has progressed in leaps and bounds over the last two decades with many promising advances currently taking place. My diagnosis has forced me to change my priorities, some for the better.
I had my SCT in January last year. I have regular blood tests as I am on Lenalidomide and Zometa. As a result, my neutrophils seem to go up and down like a yo-yo on a regular basis ranging from a high of 3.50 in March 2020 to a low of 0.97 in May this year. Some quick arithmetic shows that my average reading is 1.80
Hi Loulou80! Sorry to hear of your situation. I was diagnosed with myeloma about 2 years ago and I am still asking questions. Remember the only silly question is the one not asked. I would recommend doing some basic research into myeloma before your upcoming appointment as a lot of medical jargon such as “paraprotein”, “platelets” and “neutrophils” crops up all the time. If you don’t understand something makes sure you get your doctor to explain in clearly. You have the right to understand what is going on. MyelomaUK offers a good range of resources into treatments and medications. I use it a lot. Here in Australia, I also access the MyelomaAustralia website. I would get your doctor to explain exactly what myeloma is and what treatments are available and over what time frame. Also ask about an costs (i.e. treatment, medications, etc). Ask about any in-home care and equipment that may be available (such as handrails in the bathroom). Ask whether the hospital offers free transport from your home to the hospital. Falls are an increased hazard for myeloma patients as we are more prone to fractures from even mild bumps and knocks. Recently, I have been asking a lot of questions of how Covid affects me as myeloma and its treatments affects the immune system. Also ask about your partner’s dietary needs. I lost a lot of weight very quickly just before I was diagnosed and during my stem cell transplant. I hope this helps. If I can think of anything else, I will let you know.
My hospital insists that I have a blood test one to two days before each appointment for my Zometa infusion. Might be an idea to check with your doctor/nurse to see whether you need to do the same.
I also have Zometa every four weeks. I also seem to be very fatigued for a couple of days after each infusion.
I had my first AstraZeneca inoculation last Wednesday (28th April). So far I have not experienced any negative side effects.
Hi myeloma2016. I had an SCT in February this year. I take two Apixaban 5mg (anticoagulant) tablets each day twelve hours apart: 10AM and 10PM. This seems to work well. I set the alarm on my phone to remind me. I also take one Lenalidomide 10mg daily but at a different time. I have found it difficult to find the best time to take Lenalidomide as the instructions on the box are very specific. I suggest you contact your specialist or pharmacist for the best advice.
Glad to be of help. I used ordinary toothpaste but your hospital may have a brand they prefer. I’m not sure if you have the same mouthwash brands as we have here in Australia. Just make sure whatever you buy it says “Alcohol Free” on the front. Be aware that the stem cell transplant wipes out the immune system, so hospitals are very fussy about what can be brought in (eg no flowers and certain foods & drinks). I went through an orientation with a nurse before admission where I was given quite a comprehensive list of “dos” and “don’ts”. The main reason for the hospital stay is to deal with infections which are inevitable. This involves blood being taken two or three times a day through the PICC line. I caught an infection from my PICC line but it was caught and dealt with quickly. You should also consider things after your mother is discharged. I was given a two-page list of foods and drinks to avoid after leaving hospital. It would be a good idea to talk to the hospital dietician. I threw out all the prohibited items so as not to consume them accidentally or through temptation. Those undergoing SCT need to be scrupulous with their hygiene. This means washing hands more often than usual among other things. However, I found using soap bars and many hand wash solutions dried my skin out badly. It was a bit of a hit and miss process to find a satisfactory product that did not crack my skin. I found using hand sanitisers useful. Just get a good-quality brand. It might be a good idea to get a good supply of this before any future COVID panic causes another shortage. Face masks are also important when going outside or receiving visitors at home. So it might also be a good idea to get good supply of these. Ask the hospital staff for some before your mum is discharged. Before I forget, the SCT process makes patients particularly susceptible to sun exposure. So talk to your hospital about the most appropriate sun protection. Good luck and try not to worry too much.
My condolences! It is not easy losing someone. My mother also had myeloma (like me) and underwent a slow and steady decline for six years before we lost her at the age of 71. The family knew it was going to happen and we thought we were prepared. But this did not make it any easier when it did. In contrast, my father was as strong and tough as an ox right to the end, typical of the generation that lived through WWII. Even in his late-80s, he would go shopping and carry the whole lot (four or five shopping bags in each hand) from the car to the kitchen in one go just to save making a second trip from the garage. We lost him suddenly and without warning at the age of 89. The shock of this was just as bad, if not worse. However, I find it getting easier over time especially when my brothers and I reminisce over the happy and funny times. Some of the things my father did or said still have us rolling around in laughter.
Hi from Marty again! I forgot to add that it would be a good idea to include one or more head scarves. All my hair felt out suddenly only a couple of days after getting my transplant.
Hi! I had my SCT in January this year. I found a number of things either helpful or unexpected. Boredom can be a major problem. Staff are usually too busy to stop by for long, so keeping yourself occupied is important. Luckily, I had my own room with a TV and internet access. If available, check to see if access to these are free or user-pays. My hospital also had a small shop, so visitors brought me newspapers or magazines each day. There are also lots of free digital English-language versions of newspapers from around the world on the internet. I took several crossword puzzle books in with me. Best to get large-print versions as my sight became somewhat blurred for a while. Maybe a pack of cards for your mother to play Solitaire on her own or other card games with you when you visit. Reading books is also a good idea. Best to get new ones (to avoid catching any infections) as the SCT process essentially destroys the immune system. Perhaps a small cheap portable radio would be a good idea. Several changes of sleepwear that you don’t mind disposing of would also be a good idea as I found diarrhoea to be a problem. Being hooked up to drips for much of the time meant that it was not always possible to get to the toilet on time. Staff placed a strong focus on oral hygiene as mouth ulcers can be a problem with an SCT. I was advised to get a soft tooth brush while in hospital and after discharge. However, the nurses thought even this grade of toothbrush was too course. Instead, they gave me a type of small cube-shaped sponge of a stick that resembled a lollypop to use several times a day. If you get any mouthwash make sure it DOES NOT contain any alcohol. Mouth ulcers are painful and alcohol only makes this worse. I hope this will be of some help.
