It’s been a week of ups, downs, developments and pain… and now I am feeling guilty for not having written this earlier… I was going to do it yesterday but ended up being in hospital from 11.00 until 21.15! It was a planned visit to get a top up of platelets, but ended up taking ages, lots of waiting around ( I did have a bed so I was snoozing most of the afternoon) and then got my two bags of blood as well. I know it’s good to have it done before our trip but I thought I would have time to blog, finish packing etc.! So feeling guilty … Christian guilt kicking in and I’m not even in Lourdes yet!
The week started on Monday morning (funny how all weeks start on Monday!) with an appointment with Femke about the CT scan I’d had on Friday. Well, based on the fact that I had increased pain in a few places and had pains, my expectations for the results were not great. The previous scan from May was a bit vague and so it is hard to make clear comparisons in terms of millimetres of difference. In this case, the tumour is within the ‘stable’ parameter i.e. there might be slight increase in the tumour and it can be seen in a few new places. There was a shadow in my liver but that was also seen very faint so the conclusion can’t be drawn that it is a tumour. I had a few questions for Femke, first of all – can we go to Lourdes?! Is travelling recommended/allowed now and she said it was fine. What we are going to do is postpone my treatment until next week just to avoid me having more side-effects while I am there.
A couple of new developments are an extra lump near my spine in my lower back which she said is probably a new small tumour and a weirdo phenomenon happening in my right thigh/hip! It is really odd..it doesn’t hurt, but my right leg looks bigger than my left and it feel strange to the touch, almost numb so when I touch it, I can feel it, but it is like you have a dead leg and it feels as if someone else is touching it. Femke had a look and was in agreement about its ‘oddness’ and said it could be something to do with radiotherapy, might be fluid/water retention but she doesn’t know. Lovely. My lower left arm also still has pain on and off with some pins and needles in my hand. Sometimes it can be really crippling pain (on a scale of 1-10, it might be an 8 or 9) but often it is more like a 6 – still quite annoying though.
I got my weekly update call from the pain team consultant on Wednesday morning – he just calls to find out how I am. Tuesday was a really hard day in terms of pain, I was on the sofa all day and couldn’t find a comfortable position, and had pain in my lower back, right thigh, arm and also felt really nauseous so didn’t really eat much. My appetite is really waning again now and I only weighed 57 kilos the other day which is way too low and I was surprised and scared…. don’t want to have to drink those liquid drinks again cos they are heave-worthy on their own. Although, having a tube down my throat isn’t an attractive option either. So Ed called hospital in the afternoon because I was in so much pain, writhing around and looking horrid. They said that one of the painkillers I am using can/should be doubled in order to be effective! If I’d known that! Sometimes there is some confusion about which doses of certain drugs that I am on because they change so regularly. Well anyway, doesn’t matter now, when I knew that I took them and it worked! The relief was almost immediate… definitely within an hour. When I spoke to the specialist, whose name, by the way, is relevant to the blog title for today, I realised how ironic his name was …. Harm! Apparently it is short for Herman. It doesn’t mean anything in Dutch so the irony is lost on him but not on me!! Well, he managed to drop another inappropriate comment as well; he said that the tumour has grown. That is not what Femke had said and I told him that Femke had called it ‘stable’ because it was so small and hard to compare the two scans. He reluctantly yielded but it was clear that he didn’t really agree. Oh Harm, I am getting to know him now so I expect the bombshells and have to see them in a humorous way rather than as a tear-jerker!
So basically Monday was a day processing the information Femke had given.. and passing it on to the family, then Tuesday was wiped out completely because I was in pain so couldn’t really do anything. It sounds really dramatic, but it was horrid, I was in bed or on the sofa most of the day, and couldn’t find a position which was comfortable for long so I was really restless, felt quite nauseous so hardly ate anything, then was beating myself up about not eating. I was also getting angry with myself about things on my list that I should have done by now… one of which was to contact the Helen Dowling Institute which is an organisation that offers psychological support to cancer patients. My GP recommended them and they have got a very good reputation. I have had the referral letter for about 3 weeks, if not longer, and still haven’t called them. FFS. Why not? Procrastination! I know I have had a few overnight stays in a luxury establishment nearby in the last few weeks but I should have had time by now. Well, I finally got around to doing it this afternoon.. hurray! It was a really quick phone call and now I have to send my referral letter from my GP, then they send me a questionnaire I guess about background and what my problem(s) is/are, and then someone calls me for to set a date for an intake interview, then we have a telephone intake interview and then I am invited to the office for treatment… quite a strict registration procedure; have they got secrets to protect? Is it a cover up for some kind of shady organisation stealing people’s identities?!
It is now Friday morning, and our taxi is coming in exactly 25 mins! Flying to Paris first, then have to cross Paris to Orly airport and fly to Lourdes from there. It’s going to be a long day, we don’t get there until 17.10! Well anyway, since time is of the essence I will stop now…. wait for updates!