One of the really tough things about myeloma is the fact that it is so individual. The way that it affects each and every patient is slightly different, the way in which patients respond to treatments is different, the side effects they experience is different. It makes it pretty tricky to deal with at times. Tricky as a patient to know what you should expect, tricky as a consultant to deal with the ‘but I know someone who is receiving……’, and tricky as a bystander who is trying to help keep an eye on what is out there for the people that you love and care about.
In comparison to many people, I haven’t actually undergone that much treatment to date. I know that might change. But at the moment, I have had 4 different types of protocol (if that is how you phrase it). I started on revlimid with steroids (& all the other associated drugs that are taken with it). When that stopped working, I went onto velcade for 4 cycles until it gave me peripheral neuropathy and I had to stop before it potentially became unmanageable and possibly irreversible. I then had my Stem Cell transplant (SCT which includes being given high dose mephalan!), followed by currently being on revlimid as a maintenance therapy.
To date, my treatment path has been relatively straightforward. The worst time was when my revlimid stopped affecting my myeloma, and there was a chance I would have to have a transplant without getting the velcade. But even then, I had so many options ahead of me if that SCT didn’t work. And still today, I am lucky that as and when I relapse (because it is almost certain that I still will despite the advances in myeloma), there are many more treatment options ahead of me.
I now talk very readily about how positive the future is for myeloma. And I do really believe that for people like me. But I am also very conscious that it isn’t like that for everyone. That there are friends of mine out there who have had to face into more treatments so far than I can imagine, and for whom they have stopped working. It is hard when I hear that their options are running out….I feel bad…but not half what they must feel when they’re told it by their doctors and consultants. I wish I could help them more, but there isn’t much I can do. I feel like to a degree I need to step back from them. Not because I don’t want to support them, but because I worry I’m a reminder of a place that they would like to be in. But at the same time, I know that I would hate it if people did that to me. Like many things in life, it’s about a balance I would imagine….and sadly I’m having to find that balance with far too many people at the moment.
On a slight aside, I was talking to a friend today about treatment. We were talking about how frustrating it can be when friends and family start talking about treatment options that might be available as if we wouldn’t do the necessary research ourselves! I always find the hardest one is when people suggest about homeopathic remedies, or dietary changes. It’s almost like if we haven’t crossed out red meat, dairy, wine, caffeine and basically anything enjoyable, that we haven’t fully given ourselves a chance of ‘cure’. So, just as a pointer, can I ask that people don’t come up with ideas of what we could do better (unless you are sure it is BRAND new research and not 5 years old!) as we’ve probably already been there and done that…..and decided that it doesn’t work for us/ makes life more unbearable for all around us.
The other difficulty with myeloma is that many of the consultants out there have very different views on how treatment should progress along the various stages. One will avoid transplants like the plague, another will be keen to undertake them early, and another will encourage donor transplants (allo transplants). In the same way, one person (me for example!) will receive bisphosphonates like zometa, as a bone strengthener, as a standard treatment, while other people aren’t even offered it. It is so hard to challenge consultants on the decisions they make for us, but I do think it is important that we are able to ask the questions of them and make decisions of our own without consequence.
We moved from High Wycombe to the Marsden on the basis that they were suggesting treatment options that we didn’t agree with. But it wasn’t without being made to feel a little like we should have trusted them. But not for one moment have I regretted by choice. It hasn’t come without compromise. I have to do a 3 hour round trip (if I’m lucky!) around the M25 at least once a month, and if you’re unwell this isn’t great. But I do believe that I’m at one of the best hospitals in the country for treatment, trials and options. Perhaps one day, there’ll be something more standard ….. but I’m not sure that will come until they know exactly what causes myeloma and how it originates. Perhaps then they’ll be able to focus treatments and understand how to treat people individually….and it will be even clearer to patients. It’s always so hard when you’re just not quite sure.
I think I’ve waffled a lot on this post. Sorry. To be clear it absolutely isn’t a criticism of consultants not giving standard treatments, but more an identification of the complications of how to give treatments when so many options are out there and those options affect each individual differently.
I hope it also gives a slight insight into why fundraising and my 40 Challenges B440 are so important to support. Without the research historically, I probably wouldn’t be alive to reach my 40th birthday as drugs like Revlimid wouldn’t be around. And without the money to bring new drugs to market quickly, it goes without saying, that more people who are further down their journey, may not get to reach theirs….or their 50th/60th or whichever birthday they are aiming for. Ongoing research is SO important. So, if you haven’t already, please dig deep and think about donating by using one of the methods below.
40 Challenges B440
Just 4 more days now to complete my challenges, and 5 days till my birthday! There isn’t much anyone else can do to help me now sadly….apart from the birthday challenge. I am trying to read books quickly but think there might be a couple of tiny ones to finish that challenge! And my lovely friend sent me beads to do a necklace so I need to do that with Rebecca very soon too! The final one is to write two more posts on here as well. I’ve got my last one planned as a summary of the year of 40 Challenges B440. But still need to think of what to write as Post 39!
If you would like to sponsor me with my #40ChallengesB440, to support Myeloma UK and help make myeloma history, please either
text ‘DEBG99 £X’ to 70070
e.g ‘DEBG99 £40′ if you want to donate £40