P & R is for Pain and Religion

Another P&R, not park and ride, not Pansy and Ruby (positive and realistic) but pain and religion. Do they normally go hand in hand? Well, not necessarily, but it’s not unheard of! Well they have been on my mind a lot in the past week or so, pain has been at the forefront quite a lot of the time because since last Friday, I have been having quite a bit of pain again.

I went to get my blood checked and have an x-ray and then an appointment with Nanny last Thursday; my blood levels were very low (explains why I was wiped out on Wednesday after Paris… the excitement of the trip was probably a contributing factor!) so I needed to have a couple of bags of blood and a bag of platelets. Nanny also checked with Femke whether we could still go ahead with immunotherapy as scheduled with my levels like this and luckily she said yes! The only thing was it meant that I had to stay in overnight just because there wasn’t time to get all the bags in before late in the evening- I think I finished my final bag around 23.15 in the end. Well, ok, not my preference but not the end of the world either. So Friday I woke up with excruciating stomach ache and pain in my left lower arm again… gosh it was horrid, I couldn’t do anything, I had some extra painkillers and an electric blanket and just bit my tongue… it took until about 10.30 before I could move or get out of bed. Had my blood taken (by the boy who is usually crap!) and about 11.00 the nurse told me the levels were good so I could go home! Hurray! I called Ed and he came to pick me up.. it was the shortest hospital stay for a long time. Of course I never really want to stay in for long, but Helen was coming over on Saturday so I didn’t want to be in hospital then.

Hel arrived Saturday late morning (good because it gave me time to get up and get myself sorted… which takes a while now…. I am so slow, everything tires me out and even getting dressed is an ordeal now – fuck) I’m so glad Hel came, it was such a lovely visit, we sat and chatted, had lunch in the garden, during which I fell asleep (mid conversation – how rude!) so I had a sleep and Hel amused herself buying some Dutch food products (Hagelslag!) and going to the park then I got up and Ed dropped us in town for a while. Went and sat on terrace and did some people watching – always a nice activity. I even felt well enough to go out for dinner on Saturday and ate quite well.. .but since then my appetite has definitely waned in the last few days and I have lost weight again so I am worried about that too. I find that I can’t swallow as much food as I used to and have to cut everything up into small pieces and eat slowly. Bugger, I’m looking bony and weak again. Sunday Hel and I went into Utrecht to have a look around a craft market that was on; it was really nice one with lots of different stalls – clothing, jewellery, food, ornaments, furniture and other stuff. Some stuff is really taking the piss though…all the stuff from the 1970’s and earlier being sold for extortionate prices without having been upcycled or improved – there were some side tables that I’m sure my mum and dad had and they were on sale for €90!! bloody hell.. just call it vintage and slap an inflated price tag on it. I wish I had kept some of my parents’ 70’s stuff – no idea what happened to it, I guess they threw it away as they upgraded and bought other stuff. Ed came to pick me up and brought Hel’s bag and then she went to catch her train to Schiphol. Another short visit over. I hope I will be well enough to make it to Manchester sometime in the next few months. When I got home, I settled on the sofa and fell asleep until about 19.30 – was really tired and started to feel a bit nauseous.

Had to go and get a blood test done on Monday morning for Femke to check my blood levels again. She called me in the afternoon, my HB levels were stable but my platelets had dropped a bit, but not so much that I needed a transfusion immediately. She told me to let her know if I get spontaneous bruising or bleeding otherwise I just go on Friday for the CT scan and blood test. I haven’t had any sudden bruising, although my left leg does look like Edgar has been using it for kicking practice! I bruise really easily now so if I bump my leg at all I will get a bruise. Haven’t had any nose bleeds but the spot in my nostril has returned which is lovely… only the one on my left nostril but it’s quite big so my nose is red again. And just to throw something else into the mix, I now have a massive lump in my armpit which is quite painful and getting worse. I kept looking at it, it’s not a tumour because it’s really red and you can see a head forming so it’s just a lovely spot. I called my GP to see if she could do something with it to relieve the pressure… it’s so big and in an awkward spot that I can’t squeeze it and Ed didn’t want to do it… can’t blame him.. not the nicest job is it?! Ed came with me to the doctor’s and she had a look and agreed it was just a common spot! She said she could open it up with a small cut and then squeeze it to see if she could get some of the puss out (sorry for the detail, but I do find it fascinating in a grisly way) so she did… it was bloody painful, but there is something satisfying knowing that she is getting the horrid stuff out so I could cope with the pain and didn’t need the anaesthetic. She got most of the nasty stuff out and then put a plaster on, but told me to keep it open as it will help let any fluid left out. Since then it has been bleeding a bit, yesterday afternoon it resembled a crime scene with blood all over the place so I just have to keep cleaning it. The doctor has given me antibiotics to clear up the armpit spot and also my ‘clown nose’… as Ed called it.. apparently that is the Dutch expression! How lovely. Normally your own immune system would clear it up but mine isn’t in tip top shape at the moment so it needs some help.

The last couple of days have been really rubbish, feeling nauseous, achy and tired. I just don’t know what to do with myself, no position is really comfortable for long – lying down is best but only in one particular position. Standing up and walking are quite painful because my hips ache and I get out of breath doing the smallest things… rubbing moisturiser into my legs after a bath. Just getting dressed is a challenge as well, getting the right feet and legs into pants and trousers, at least I’m not wearing socks at the moment, I think I might have to ask Ed to help me with that!

Last night was the worst, I threw up twice.. I had drunk one of those meal supplement drinks and had some yogurt and fruit. Well, that stayed down about an hour and a half. So with my aching hips, I was hanging over the toilet at about midnight. I didn’t know what to do with myself, kept getting in and out of bed, I was like a caged animal. As I was throwing up I was coughing as well and coughed up some blood again, only a really tiny bit, but that was the point at which Ed said we should call the hospital. We did, but I really didn’t want to go in, I know they are really good but I don’t think they would do anything different to me… they would give me the extra painkillers that I have at home. They would check my temperature, which we had already done earlier and I didn’t have a fever. I think at that time of night, they would just put me on a ward and do some checks in the morning so I didn’t see the point of going in at that time of night. I managed to get to sleep quite quickly and I slept till about 5.30 this morning, so that isn’t too bad.

So that was the pain part… now for the religious part…

I believe in God. I have always believed in God. My parents brought us up (extremely) religiously so we didn’t really have a choice. Of course, many people grow up in very religious homes and then go on to completely rebel against it, which I definitely understand, and to some extent I think Caela and I have both rebelled against a lot of what our parents did (promising each other that we won’t turn into them!.. but don’t most children say that of their parents?!) but I haven’t completely turned my back on religion. I haven’t been ‘practising’ , if you call practising going to church every week, but I have always believed and have prayed over the years and talk to God when I feel the need.

The need: so now, the need seems to be ever greater. I have been considering going to see a kind of faith healer, or going to a religious site and asking to be healed. I feel a bit embarrassed saying it out loud (even though I’m only typing it!) but on the other hand, why? What have I got to lose? Why am I less eligible to ask God for healing than the next person? The next step is how? Where do you go for this kind of thing? There are obviously so many scams and illegitimate people out there. I had a look at going to Lourdes in France, and talked to Ed about it and he is up for it, he will support me whatever I do so we have booked it! Yes, we are going next week Friday 4th August to Tuesday 8th August. I am excited and curious about it. I am not sure exactly what to expect, a lot of people that’s for sure, and a lot of wheelchairs. I wonder how much priority they get there! I have also asked Esther to ask in her circle of church friends if they can recommend someone or a church to go to, for some kind of healing and there is someone so that is also another option.

I have to say I have been struggling the last two days, I am punctuating every move with a noise.. hard to describe the noises, sometimes it’s a high-pitched moan, sometimes it is the same moan but much deeper, sometimes it is like a sharp intake of breath as if you have stubbed your toe. Other noises include grumbles, screeches, blowing air out like you would do as if you are in labour – yes, I have a range of noises in my collection. I feel sorry for Ed having to listen to them all the time, he can’t do anything to help with the pain – but he does everything else… he is taking on the role of full time carer – not dressing me or feeding me yet, but he is pretty much waiting on me hand and foot and doing everything around the house.

I really, really hope I am well enough to travel to Lourdes next Friday – I am just going to have to suck it up because I really do not want to cancel this – not sure when we would be able to reschedule to.

I have just spoken to my dad because it’s his birthday today – it was fine (you never know how conversations will go!) and he was happy cause he’d been out for lunch with Caela and Hattie. As usual he talked about how all the churches in the circuit are praying for me etc. which is really nice, but I just couldn’t bring myself to tell him we are going to Lourdes; it sounds awful but I don’t want to encourage him. If he knows that, the floodgates are open to all sorts of religious sermons and readings etc. every time I speak to him and it won’t be happy, upbeat religious material, it will be sombre and boring and slow! Sorry dad, it sounds so ungrateful and nasty but it’s true! I will tell him, but I might just do it at the end of a phone conversation hit and run style…”oh by the way dad we are in France at the weekend, yep, going to Lourdes” if I say it in a funny accent he won’t get it either!

Puff… is it time for more painkillers yet?! Well, at least the swimming is on in Hungary, nice distraction to watch and no, not just because of the hunky men… I just like watching swimming in general, and some of the men are not bad to look at!