Ever determined to use the time available to me, I’m typing this from Ward 10 (the Outpatients version of Ward 11) while connected to the IV drip, down which is coursing the irradiated blood from somebody else’s veins. To bring you bang up to date, things went downhill rapidly after my last post. My haemoglobin stubbornly refused to come up despite everything I could throw at it and on Sunday I had to admit defeat and come into Ward 11 for a platelet transfusion. This all happened because around the same time as my white cell count should have been coming up, one of the almost non-existent hair follicles on my leg decided to become infected and turn into a giant blister. When you are neutropenic, the main source of infection is from your own body. Trust me, you have no idea of the maintenance that goes on overnight in a properly functioning system until it fails. Did you ever see the film Westworld? Set in a sort of futuristic Disneyworld, once the punters had left the fantasy world of the Wild West for the day, the robots came out and cleared up everything ready for the next influx of excited tourists. The red and white blood cells do the same thing while you sleep, only in my case the workforce is so understaffed there aren’t enough to go around. My poor, besieged and debilitated body tried to lob the last few remaining white and red cells at the infection, which not only wasn’t enough to help but plunged me into negative everything. I woke up Sunday morning covered in bruises, which is a sign of serious anaemia, so was left with no option but to call the staff on Ward 11 (10 is closed on Sundays), who duly told me to come in so I could have a transfusion of platelets. These are cells that help the blood to clot, and also help the body to repair itself.
This was all very bad news for the stem cell harvest organised for the following day. I went home after the platelets feeling much better but not magnificent. We were due in to Ward 11 the following morning at 8.30 for a pre-harvest blood test, but nobody was really expecting the procedure to go ahead. Bloods were duly taken and the Great Wait for results began. My consultant was in clinic so I knew we would have to wait a while, but there was no decision until 2.30. Yes, 6 hours of doing absolutely nothing. We had come in expecting to go home almost immediately, so apart from a bit of reading material we were just kicking our heels ALL THAT TIME. When he finally arrived my consultant was really apologetic, but having been on the receiving end of his caring skills, I found it hard to be cross. He said my blood counts were so low I would have to come in the next day for two units of blood then back in again on Wednesday and Thursday for the harvesting. So that’s another four consecutive days in hospital. Thank heavens for the free parking!
The whole issue of having blood has been a really big one for me. Psychically speaking I am like a sponge – I have had to consciously work on my boundaries during the years with the result that I am extremely wary about anything being introduced to my system. I have enough problems with what is already there, without taking into account somebody else’s ‘stuff’. There was a whole ‘ick’ factor about the blood and the fact that it has been created in another body that quite probably likes different food from me and has a different lifestyle. After all the care I have taken with my diet, alternative remedies, meditation and visualisation, I could end up with blood from a pizza loving, fizzy drinks swigging person who, although undoubtedly doing their bit by donating blood, could potentially introduce into my body lots of things I try so hard to avoid, plus on a psychic level, a whole lot more. Of course, by the same token it could be totally pure and of a lot more benefit than what is already in my body (which, quite frankly, is having a bit of a hard time). The blood is irradiated, which means it won’t have any impurities and I wouldn’t actually catch anything, but it still isn’t mine…..and that troubles me greatly. However, when I am this debilitated and have failed to raise my blood counts through other means, I have no choice.
Tuesday dawned nice and bright and sunny. The blood transfusion took four and a half hours, so including setting up and the blood test I was on the Ward from 10am until 5pm – almost a day’s work then! Did I mention before how impressed I am by the care of the nurses and doctors? Just wondered. Today they blew my socks off. You wouldn’t think a cancer ward would deal with emergencies, but a whole load came through today and I was in prime position to people watch. Amongst them was Jean. Do you remember her from one of my earliest blogs? She was my first room mate and we bonded over our IVs. Absolutely lovely lady who is on palliative care; she has Aplastic Anaemia and can’t be cured. She comes in every few weeks for a transfusion and also in between when she gets ill. A slight temperature means an infection, which can become critical in a matter of minutes when you are that ill and we are all reminded relentlessly to call the ward immediately should it happen to us. The first thing I knew about Jean’s arrival was when her wheelchair came past me and was parked next to my bay. I almost didn’t recognise her, and it shocked me when I realised who it was. The staff swung into action, firstly to hug her, then get cannulas fitted so she could be wired up to antibiotics and more importantly, saline solution, which really is a life saver. Then a constant stream of staff came to see her and hug her. What really undid me was Dot’s arrival. She appeared after the cannulas and before the doctors – and cried out ‘Jean, why are you here again?’ then sank to her knees to give her a massive hug, the two of them quietly sobbing together. I don’t think there was a dry eye in the place and I was really struggling to hide the tears streaming down my face. After several chats with the doctors, who were very cross with her (in a loving kind of way) that she waited a whole day of feeling bad before coming in, Jean was sent off for x-rays before being admitted. By this time I had been moved into the bay opposite her so the doctors could pull the curtains round her more easily. I thought she probably wouldn’t recognise me as I had hair when we last met, and as she was falling in and out of doziness I didn’t want to impose on her, desperate as I was to make contact. However, as her wheelchair was pushed past me on the way to x-ray, Jean lifted her head, gave me a great big smile and said,’You look great, Margaret, just keep on going’. I managed to stammer out, ‘Get well soon Jean’ before they wheeled her away. Cue more tears.
So it has been an emotional day. It is sometimes hard to stay positive in there as, by its very nature, the people that come to Wards 10 and 11 are sick – you don’t get to see the well people as they don’t need to come back. What you do get to see is the beauty, tenacity and strength of the human spirit manifested in someone like Jean, who from her tiny and very poorly frame holds high the torch for the rest of us to follow. I would love it if you could include her in your prayers.