So much has happened in a week I don’t know where to start… I will go backwards because that is the way my mind is working at the moment!
Starting off with the positives – the McMillans arrived in Holland Thursday night and are now safely ensconced at Di and Bernd’s place in Utrecht; at least some of them are… Caela is here with me because I am not well enough to manage on my own. So where is Edgar? He’s been sick on and off the last week, also while we were in Lourdes and Thursday he was so fed up that he went to see our G.P. who sent him straight to hospital for testing. They found a really high level of infection in his blood, but were not sure exactly what was causing it. He had an x-ray and the lungs and other organs were fine so after ruling out several things, they now think it is a perforated appendix so initially they said he would need an operation which meant he needed to go to a different hospital, so he was taken there in an ambulance and the doctors there said they prefer to try the ‘conservative approach’ first and put him on a strong dose of antibiotics and see if his body responds to that, if not, then it is an operation. We should know more tomorrow, but what shit luck! I mean, really!
If it hadn't been so painful and disruptive, it would have been funny! Both of us were hobbling around, being sick or in pain. Ed was in bed, while I was on the sofa, then he was downstairs while I had the bed… we were both too fidgety to be in the same bed together –Ed slept on the guest bed the last two nights.
I had my immunotherapy scheduled for Wednesday afternoon but before I went was almost certain it wouldn’t go ahead because of how I felt… really crap! Really out of breath doing almost anything – climbing stairs, even standing up and walking into the kitchen too quickly (i.e. at normal pace) so I knew that my body was too weak to cope with it. I went in at 13.00 and had a blood test and the results came back that my platelets had dropped massively again so immunotherapy was almost definitely out. So I didn’t have immunotherapy but I did have a bag of platelets. Again a bit of waiting around meant I didn’t get home until around 21.00, but at least I didn’t need to stay in.
New health developments in the last week are: stiffness and aching in lower back and hips; difficulty and pain tipping my head back, for example when I want to finish a drink, it is hard to get the last drops out; more frequent pain in lower arm and hand; difficulty bending over to put on shoes or socks – luckily it’s summer (apparently) so I am just in flip flops so that is ok, but when I need to put trainers or shoes on, I will need help; weight loss because of nausea and loss of appetite; panic attacks! I had never had a panic attack until about 2 weeks ago and it is a horrendous experience. I was in the bath, a very hot bath as usual and suddenly needed to get out, started to get really out of breath and nervous, I opened the window really wide to try and get some air, then opened the bathroom door and went out onto the landing which was a lot cooler and kept telling myself to calm down and take slower deeper breaths. It only lasted maybe 2 or 3 minutes but it felt like much longer and was really frightening. Since then I have had two or 3, mainly related to heat and not being able to get fresh air, but one was to do with not being able to swallow my food. That is another development, - I can’t seem to swallow as much food as I used to and have to chew everything really well before I swallow and eat really slowly. All in all, a nice line-up of newcomers to the party.
I am also adjusting mentally to needing a wheelchair; we borrowed one in Lourdes from a hospital. I suppose it isn’t that surprising in a place like Lourdes they would have that kind of service but it was just great. Very organised. You go and see the sisters (not sure if they were nurses or nuns…. or both) and they give you the right wheelchair for your height and weight, you pay €30 deposit and they ask for a donation on return. We picked one up on Saturday morning and then started doing the things that I had on my list – it sounds unreligious to go by a list but there are sights to see and things to do and with limited time you have to be selective.
Well, we did 3 out of the 5 on my list on Saturday; went to the Grotto of Apparitions which is where Our Lady of Lourdes witnessed the apparition of the virgin Mary in 1858 (yes, few facts there… can you tell I have copied it from somewhere?!) The grotto is the source of the spring and so next to that are lots of taps in the wall that you can drink from or wash your hands or face in. Loads of people buy these special plastic bottles (available in all sizes!) with a tacky image of the cathedral on it and fill them up. (More tourist tat!) After the grotto and the taps you come to the baths. Again very well organised, clearly marked queues for men and women and all wheelchairs and sick people get priority. Ed pushed me up to a certain point and then one of the volunteers/nuns/nurses took over and I was taken into the main area which was a covered walkway filled with wooden benches crammed with people waiting to be bathed. There were also people leading hymns and everyone was joining in. It was a busy, but calm atmosphere. Along the back wall were numerous curtains and every so often someone was wheeled through the curtains…. I had only been waiting about 5 minutes before it was my turn and I was collected by someone from behind the curtain. It was clear that everyone had their role and knew their place so the person who had wheeled me from the original queue to this curtain was not allowed to venture beyond this point – she knew what her job was and did not overstep the mark. So my next ‘driver’ was an Irish lady – the first thing she asked was what language I speak and when I said English she beamed with relief and said “Great!” I was wheeled to another curtain from behind which a lovely blond lady was peaking… she gestured that they weren’t quite ready for me yet, but still kept her head out and asked where I was from and what illness I had. When I was taken through the penultimate curtain it was like a family changing room at a swimming pool… and a really old one with stone floors and basic benches to sit on. The ladies immediately set about getting me naked! I was wrapped in a heavy blue robe with Velcro at the top and then two ladies helped me remove my sandals then trousers and everything else; you can tell they have done this before! Once I was naked under my blue robe, I sat on my chair and just waited… there must have been about 4 or 5 other patients and about 6 or 7 nuns/nurses – I had a chat with the couple who were helping me and they were so lovely and explained briefly what would happen behind the final curtains! When it was my turn, I was supported by both ladies and walked slowly to the curtain which was then opened by another two ladies, equally as smiley and helpful. They took over, gingerly helping me down the (freezing) stone steps. At the bottom of 3 deep steps was a long stone bath filled with (very cold) water. My blue robe was surreptitiously removed and replaced by a (cold) damp white sheet which covered me from just under my arms down to my shins. They asked me if I wanted to do the full ‘dip’ or just the walk… I honestly had no idea, I clearly hadn’t done my homework! Well, I stepped down into the bath and took a really deep breath!!! It was very very very very cold! There was a lady either side of the bath holding onto me by my elbows; when we got to the end of the bath, there was small statue of the Virgin Mary. You face the statue at the end, say whatever payer you want to say, then they asked if I wanted to be dipped and I did it! It was only a very quick dip, just up to your shoulders, not your head. Then you are taken back, and the whole process is done but in reverse! It was a really special experience, the queues and commercial aspect of the whole town do detract from it slightly, but there are certainly enough areas and places to go which aren’t tacky or just out to get your money.
It was raining heavily by this point so we went in search of somewhere to grab a drink and something to eat; we stopped in a nice but standard touristy bar…one of the many. As usual we over ordered – 2 pizzas… and we had nearly one whole pizza to take away....well, waste not want not! We got a taxi back to the apartment and crashed out for the evening – neither of us felt like eating because we had had a late, large lunch.
Sunday Ed was throwing from about 2 a.m. so he wasn’t in any state to go out and I really wanted to go to the International Mass but it was only on Wednesdays and Sundays at 9.30 so I decided to go alone, I was awake anyway. So I got a taxi there and then explored and asked around, I asked one lady who looked really keen to help, but clearly didn’t know where it was so I said thank you and moved on. I eventually found it, like in an underground bunker the size of an airplane hangar. I was there by about 8.00 so had an hour and half to wait. It was about half full by 8.30 but I am glad I did get there early because by about 8.45 it was looking quite full in some sections. I didn’t want to actually sit down for 3 hours so I sort of loitered near my spot. It was a mass so all very rigid and planned down to the last word and what made it even longer than a normal mass was that they did some parts in 4 or 5 languages! But in general most of the service was given in French.. which is fine.. but don’t call it an ‘International Mass’! Still, I am glad I took part and experienced it. The rest of Sunday was taken up by sleeping, reading and or lazing in the bath!
Monday was the best day of the trip in terms of weather, so we had time to go and lie by the pool, and make observations about other people in the pool…mainly about the number of chubby kids that were there!!
The final event I wanted to see was the torchlight procession in front of the basilica; it is on every evening at 21.00 so I’m really glad we got to see that. There were huge numbers of people walking carrying special candlelit torches and singing, very uplifting.
Tuesday’s journey back wasn’t the most enjoyable I’ve ever had! We took a taxi to the airport, flew to Paris, had to get through security and collect our bags at Paris Orly and we had special assistance so that was good, when we got to Paris Charles De Gaulle it was a completely different story, we checked our bag in (eventually after going to several different desks) then asked about special assistance. We were told to sit in a designated section and someone would pick us up in 20 mins. Well, after 30 mins, we went to check and they said they were on their way, after 45 mins I was getting pissed off and stressed that we might miss our flight. We had been there well over an hour in advance and now we had about 15 mins before boarding and we weren’t even through security! We talked to the Airfrance desk again, they still assured us it would arrive. We decided just to walk on our own, one of the AirFrance staff said we could ask at Information from the airport so we did that and got help immediately, they whizzed us through security and said our gate was only a 5 min walk, which it was, so we were actually there with 10 mins to spare, but how bloody stressful was that?!