Well tomorrow is D-Day. Although funnily enough, and hopefully not incorrectly, I am slightly less nervous than I was this morning. Well I think I am. More to come on this one.
It’s been a tough few days. Well, a tough couple of weeks. I am struggling massively to get my balance right. The week before last I got it totally wrong. I got so caught up in the tabletop sale I’m holding in a couple of weeks, that I forgot to make time for rest periods. The result was that come the weekend, I was totally flaked out on the Saturday. My fault totally and I felt really bad for it after the event. I spoilt the one family day we had and that hadn’t been my intention at all. So last week I decided I needed to get things right. I knew that I wanted to go to the Myeloma Infoday on the Saturday, but that I also wanted a quality day on the Sunday. So last week, I kept things relatively quiet. I did little on the tabletop sale, did a bit of keep fit on the Wii, but other than that, I didn’t do too much.
So, on Saturday, off I went to the Myeloma Infoday. Which I have to say, I really enjoyed. I met some great new people, some of whom were of a similar age to me, and some people I have met before, including a lovely lady who really keeps me going – she has gone through a similar experience to me, though is further ahead in her journey. She always keeps an eye out for me, and we seem quite similar in our attitude to life, and to myeloma; keep busy and don’t let it get you down! Works some of the time anyway. There was some real positivity in the day – a cure isn’t on the horizon, but it is starting to be mentioned, which it wasn’t 5 years ago. And the other real positive was that I met a number of people who are now 7+ years post transplant. Given that the average prognosis is 3-5 years these days, it is SO SO important to me to hear these ‘good news’ stories – they really help me to keep going and to think that I WILL see my kids go to secondary school. And who knows, with the new treatments that are up and coming, hopefully I’ll get to see them go to Uni as well.
I was careful on the day, and took some time out in the middle to rest. But I still had quite a bad headache and by the time I got home, I had to take paracetamol to help it. The next day I woke up feeling terrible and ended up in bed most of the day. Sam nearly missed a party because I overslept at one point – made worse by the fact he was being taken there by the birthday boy’s parents. We were 15 minutes late getting to there house, and I have never felt worse about letting someone down. Finally, at about 6pm my neuropathy really started to get me down. So I took some oromorph (morphine) and shockingly, I started to feel better! We have now looked it up, and it seems likely that I was having withdrawal symptoms from the oromorph. Oh my god I am a total junkie! I can’t believe it really, as I don’t actually have that much of it. But I hadn’t had it for about 48 hours and so it is quite possible – the achy feeling I had been experiencing all of Sunday, along with the runny nose, the tiredness etc are key side effects of withdrawal from the drug. So, it looks like I’m going to have to take it regularly moving on, until the day that I need to cut it out all together. And then perhaps I’ll have to go cold turkey!!!
It is good to know what was going on as I felt real guilt that yet again I had screwed up a family day. This time is so precious to me, and I have never felt it as accutely as I have done over the last 6 months. I knew that Nick felt I had let him down by overdoing it (even though he was really good about the whole thing), and I felt like I had let them all down. It has made me really concerned about the tabletop sale and ball ahead of us and we had a long conversation tonight about it. A long and teary one. I know I need to be careful about overdoing it, and the last thing I want to do is to mess up our weekends together. But at the same time, the only way I know to get through this awful time of illness, is to keep busy. I don’t want to think about being ill. I don’t want to think about what our future holds. I don’t want to have time to contemplate how my life with my husband and children might be cut short. So perhaps from a really selfish perspective, keeping busy sometimes ends up being put first. With the hope that it won’t make me more ill than I already am. But that doesn’t really work from a family perspective. So where do I go? God, I dont know yet, but I think I’m going to have to think things through before I commit to this ball. I don’t want my family to feel second best and I think that maybe they do at the moment. Somehow I have to find the right balance but I’m just not quite sure how yet. A bit of soul searching required I think.
Anyway, I also mentioned at the top that I felt slightly less nervous about tomorrow’s appointment. Well at the Infoday, I had bumped into my consultant who had mentioned she wasn’t sure my biopsy results were in, and that I should check this out. So I emailed the hospital yesterday. Today I got a phonecall from my trial nurse, who said that she had wanted to check that I knew that the next part of the trial was for me to randomised to see if I would receive Revlimid as a maintenance drug. I said that I had known this and that I was prepared for that to happen tomorrow. To which, she told me that the randomisation had already happened, and that I was going to get Revlimid. I think she was quite surprised when she heard me say I was pleased. To be honest, that’s only partially true. Revlimid now has the reputation as being good as maintenance therapy. Supposedly it can help prolong both the quality and length of remission and life. So it has to be a good thing. Anything that gives me longer must be better. The only downside is that it means I am on drugs from now on, and indefinitely. I will stay on it I believe, until I stop being in remission – assuming they class me as being in remission tomorrow! I can’t really believe that they would put me on this if my biopsy and paraprotein results were bad. Surely then, I would be starting treatment again. Anyway, Nick has told me to be wary of relying on this, so I’m not totally relaxed, but I am more so than I would be otherwise.
So, off we go tomorrow (the biopsy and blood results are in!). It’ll be a long day as I have to have pregnancy tests every month to ensure I’m not pregnant – ironic since the transplant and chemo have put me into an early menopause by the looks of things…..and the feel of all the b****y hot flushes I keep having! No easy route for us hey! Luckily, my sister lives near so the positive is that I get to see a bit more of her while I wait to hear what I already know which is that I’m not pregnant! As if!