Hi there!
No, is definitely not a case of feeling like I have to respond. I want to respond and want to help you in some small way to get through this.
I'm glad the forums have been helpful. You are right. There are so many different experiences and reactions on the forums. I guess they are made up of people with different conditions, from different countries, different ages and levels of general health and fitness so is hard to compare like with like. All anyone can tell you really is how it affected them but you will find there are some common aspects that come up frequently. Hospitals often have some variations in treatment too.
Now obviously with the covid pandemic, that may have thrown the spanner in the works with getting all the ducks in a row regarding tests before your treatment. However, your haematology dept will surely realise the urgency of this and ensure the tests are done in good time, especially if you have a specified date to start treatment. It is a good idea though to keep in contact with haematology just to keep on their toes and to ensure they've got the ball rolling and that there hasnt been any missing communication along the line. With regards organ testing, I remember it took a while before they were set up, but they all happened pretty quickly in succession.
I think it might be worth chasing up the tests to be done on your brother. With my three brothers I think they were each sent a testing kit by my haematology dept and they had to arrange with their GPs then to carry out the test and send it back to haematology. Then it needed to be analysed for a match. It takes time so they need to get a move on so give them a call. If your brother isn't a match, they will then search the Anthony Nolan register for donors and then a worldwide register. Germany is one of the biggest donors of stem cells.
When I had my first bone marrow aspiration/biopsy, I found it too painful. I only had two more after that and they were before my transplant. I didn't have any after. The second one I had I asked to be sedated for and so I was not conscious when I had it. The third one I had just before my transplant and they did that the same time I had my Hickman line put in so I was sedated and unconscious for both. My Hickman line was great as it had three tubes for infusions/transfusions and taking bloods for tests, so I didn't need needles stuck in me all the time. I think the alternative are picc lines but Hickman lines are much better in my opinion.
I think on the Facebook group under Files, there is a list of things to bring in with you for your hospital stay which people have given advice about or you could just ask the question on the group. I brought in comfy track suit bottoms and t shirts and hoodies to wear during the day and pyjamas for during the night. I brought in slippers too. Bring in loads of underwear. Bring a comfy cushion, blanket, CD player with relaxing music on. Bin liners for dirty washing to go in. Photos and personal items. Phone and ipad/tablet chargers. Gentle shampoo and shower gel as your skin can be oversensitive for a little while. paper and pens to write anything down if you need to remember anything such as blood counts, medical staff names. You may decide to keep a blog of your experience. I set up a Facebook group for myself or wife to use just to give family and friends updates which saved on having to update people individually. Obviously immediate family got personal updates but it helped giving just one post to everyone else. I was either too tired to contact people or my wife was busy visiting me (three hour journey both ways), working or doing house chores. She took my washing home every few days to wash and replace. Let people know the address of the hospital so they can send cards etc.
These are some of the things I found challenging when I was in for my 22 days. Constant flow of people in and out my room throughout the day and night from doctors, nurses, health care assistants, cleaners, catering staff, students. Moving around my room with the drip attached to me. The frequent beeping of the drip day and night when the meds ran low or emptied or when I unplugged it go to the loo. The first week was the high intensity chemotherapy. I think the first four or five days I felt fine but then I started to feel unwell. They give you anti sickness medication which does help. I don't recall being sick but I got very tired and had no energy. The day of my transplant (day zero) I was really ill. For me personally that was the worst day. Others sail through it though. By this time, I just completely lost my appetite and didn't want to eat anything. Your sense of taste goes aswell. One of the drugs you start to take when you go in is cyclosporin. Initially this is done through your Hickman line but later you get it in tablet form and will take it for some time after you leave. This is the anti rejection medication. This can make you feel nauseous. You take anti sickness meds for this too. I struggled to eat anything but had to because you need to keep your strength up. I found that drinking milk helped me. I went off drinking water but drank lots of milk too which has nutrients in. I also had petit felous. It was about two weeks into my stay my hair started falling out rapidly and one of the HCAs shaved my head as I was ending up with hair in my milk and on my bedding. Remember though that all your body hair falls out including eye lashes. I did get some diarrhoea. They provide incontinence pads to avoid accidents. I was given papermache wee and poo pots and had to do everything in them as much as possible so they could measure all my inputs (food and drink) and outputs! Was all very indignifying but it's just the way it is. As your bone marrow is wiped out by the chemotherapy, your blood counts fall to zero, then as the donor stem cells take hold, they then produce blood cells and then your blood counts start to rise. During the time your blood counts are low and falling to zero, you are likely to develop mucositis where your mouth, tongue and oesophogus get ulcers. I suggest you ask for a morphine driver during this time. Eating was really hard with this. It goes away when your counts come up again which for me was about four days. You will hear on the fb group that sucking ice lollies throughout the week of chemotherapy reduces the likelihood of mucositis so it's worth looking into. For around a couple of weeks I had real fatigue and it was a struggle to do anything. Everything was a huge effort. Even watching the telly. I didn't bother for most the time. I dud try to keep walking round my room as some exercise is important.
When you leave the hospital, you will be given a huge amount of repeat prescription medication. Contact your GP surgery asap about getting your exemption card as you are now entitled to free prescriptions for a number of years. You will have to come back as an outpatient 3 times a week initially which will gradually reduce over time depending on how your recovery goes. After 2 years post transplant, I went onto a yearly appointment. Day zero (your transplant day) is called your 'Re-birthday ' . A year after day zero, people on the fb group will be wishing you a happy Re-birthday! You will also have two different sets of DNA in your body. Your blood group and blood DNA will change to that of your donor. The rest will be your own DNA. At 30 days and 60 days post transplant, they do what is called a chimerism test. If the chimerism test result is 100%, that is good as it means your blood is 100% donor cells. The 30 day test is not as reliable as the 60 day test. You can have what is called mixed chimerism but the consultants are only happy if the donor cells make up 90%. Mine dropped to around 55% by 60 days and they were worried the transplant had failed. I was quickly taken off the cyclosporin and over a period of 18 months, I had four donor lymphocyte infusions (DLIs) or top ups of donor stem cells. When they collect donor stem cells for your transplant, they keep in storage a certain amount for top ups. Gradually my chimerism increased to about 96% so they were happy with that.
The cyclosporin is an immuno suppressant anti rejection drug. People who have organ transplants also get this. The difference is they get it do that their body's immune system doesn't reject the donor organ. With a stem cell transplant, the cyclosporin is to stop the new immune system from the donor cells rejecting your own body! A consequence of rejection is something called Graft versus host disease or gvhd. It can affect anywhere on the body. Often you hear about gvhd of the gut. It can be mild or it can be more serious. Cyclosporin is there to control this but steroids are also used if you get symptoms of gvhd. I had no symptoms of gvhd which was great but a little bit is said to be good as it shows the transplant is doing its job properly. My brother who was my donor was a very close 10/10 match and someone said too close a match in that his cells and my cells were too similar so there was no right between them hence my chimerism was low. More donor cells did help to win the war!
Before your transplant, you will have to sign a form consenting to it. I had what was called the 'scary talk' with the consultant where he discussed all aspects of the transplant such as gvhd and how it might not work. Don't get too put off by this. They just need to tell you all this stuff to cover their back. Doesn't mean it wont work. They just need to ensure you are aware of everything. The science and expertise that goes into all this now is amazing and the medical staff are fantastic so there is every likelihood you will get through this and get cured!
Check out your hospital to see if there is a Macmillan centre there. You won't be able to visit there at the moment because of Covid, but hopefully once restrictions start to ease up as the year progresses, you can go there when you have your appointments. It's peaceful there while you wait to have your appointment and they serve coffee and biscuits. You can get advice, support, counselling, massage and other things there. Is really good. Also contact a charity called Look Good Feel Better who can provide wigs (if that's what you wanted) and moisturiser and toiletries that are kind and sensitive to your skin. Also ask the Macmillan centre and/or Citizens Advice about any benefits you can get after your transplant.
After you leave hospital, your immune system will be compromised. You will have to be careful to avoid all infections. You won't be able to have indoor plants. You will have to avoid compost, even stay away from areas of building works because of spores from concrete and cement. You will have to avoid supermarkets and people generally. Your family too will have to avoid catching infections because they can pass it onto you. Cleanliness will become more important. Hand washing will need to be done a million times a day by everyone in the household. Visitors too will need to be careful. Surfaces and handles will need regular cleaning. Have plenty of hand sanitizer around. Obviously with covid, much of this is being done now anyway. After a while you will need to have all your childhood immunisations again.
You will really need the support of your family and friends before, during and after your transplant. I think for a couple of weeks after I left hospital, I had no energy and needed to sleep often during the day. I was gradually able to take on light duties but it took a few weeks. However it could be different for you. The problem is you just don't know so you need to prepare for the worst scenario that you arent upto much for a few weeks after transplant, maybe more. Just depends on your recovery. Speak to your family now about what they need to take on and how they need to step up. Just be prepared before the big day.
The other thing to consider is how the chemotherapy affects fertility as that might still be important to you if you have a wish to have more kids. They may discuss you freezing eggs if you want that.
I hope all this helps with you preparing for your transplant. I hope everything goes well for you. I'm sure it will. You will be fine! I hope you will keep in touch to let me know how you are getting on. I will pm you with my contact details but obviously it is up to you if you want to or not. You can see why it took me a while to respond to you. I wanted to write something a bit more comprehensive to help you. You may already know much of this now if you've been reading up. It's possible I've missed a few things to tell you but perhaps this is enough already. Please ask me any questions if there is anything you want to know or are unsure about. Of course you will feel emotional and weepy at times and dont feel you have to put on some brave face. It will be a very worrying time as you think what you are about to go through and how it will affect you long term aswell. The prognosis is good but just live for each day and enjoy the love of your family and font think too far ahead.
Take care