‘It’s something unpredictable, but in the end it’s right. I hope you had the time of your life.’
It was at my hospital appointment 2 weeks ago that Martin became ill with a kidney stone. This week, it was while he was having a cystoscope and I arrived at the hospital to fetch him, that I found out a bed was ready for me to be admitted that night. It is as if we are constantly vying with each other for pole position in the health stakes. Both having cancer and various other health problems. However, fortunately, Martin was ok enough following his shuftyscope, to be able to help me, so we went home, collected my ready packed bag and other belongings and came back to the hospital, this time to ward 625. After a short wait, I got my bed, luckily in a single en-suite room. I may not have this room for my whole stay, but I am enjoying it now. The view is out over south Birmingham. I can clearly see the University buildings and the new shopping centre at Selly Oak.
The ward is unique in that it is under positive pressure. The windows don’t open and the doors have an air lock. Air is constantly being filtered for microorganisms and other particles before it is delivered to the inhabitants. The turnover is swift so anything managing to get in is caught up quickly and eliminated. This means that patients can have visitors which is such a relief because being in here without for 3 weeks would be extremely difficult. I have made myself very comfortable in my room. The duvet is a feather down single one from home. It is at least 35 years old, bought at John Lewis for Katie to take away to boarding school when she was 11. I took it to the dry cleaners and they put it through their big washing machine and tumble dryer and it came up like new. I therefore knew it would be totally clean for coming in here. I brought my own pillows, pillowcases and duvet covers. The duvet covers also saw life at boarding school as the girl’s names are sewn inside. All the linen got washed hot and ironed on hot. I did it but Martin was most particular that it should be done. As a newly qualified lawyer, Martin worked on a seminal case involving the creation of environments where bacteria can neither get in or out. The client settled their case favourably out of court and Martin’s boss was delighted with his new colleague’s contribution. Martin had read all the scientific papers he could find on it and learned loads in the process. Laboratories, such as Porton Down, recently and unfortunately notoriously, through no fault of its own, in the news, have to keep all their stored substances from leaking out: Smallpox, Ebola as examples as well as Novichok, the one stored sample most people know about. For us, we are worried about what might get in: MRSA, C Difficile, E Coli, All these areas have to be kept spotlessly clean. Ironing kills bacteria on the sheets and flattens the fibres so bacteria have difficulty adhering. We also get clean sheets every day. In the other places, like Porton Down, it’s the opposite. They are worried about what might get out, so they work in a negative pressure environment where everything that leaves has to be properly filtered and disposed of. Very interesting concepts really. Anyway I am digressing. I hope I am not boring you.
On Friday, after various visits from the medics and investigations I went and had a PICC line inserted. This is a central line and therefore differs from the usual one where a small cannula is inserted in the arm for an inch or two so that blood or saline can be given. A central line goes in a vein above the elbow and right up the arm, across the shoulder and down so it sits in a main vein above the heart. This was done by a senior sister under sterile conditions. Apart from the normal momentary discomfort of a needle going in my arm as happens when blood is taken, I didn’t feel any other discomfort. Weeks ago I was given a prescription and obtained a special sleeve for showering which is totally waterproof as I used it today. They will keep the line in about a week until they are sure they won’t need it any more. Today it was used to give me Malphalan, a kind of super Chemotherapy which kills off any remaining errant cells but it is so powerful that it kills off a load of the vital ones too including and particularly, white blood cells. These are essential for fighting infection, the body’s main line of defence. It is also so corrosive and toxic that it would damage smaller vessels therefore the Malphalan is only given into main veins, heavily diluted with saline and further flushed through with 2 more litres of saline.
I was running to the toilet with my infusion on a pole, every 10 minutes. They gave me ice to suck as the cells that line the mouth can be particularly damaged by the drug and intense cooling can lessen the damage to some extent. I did not find that easy as I have sensitive teeth but battled on with it as best I could.
It is a funny stuff Malphalan, as there is a time delay. Nothing happens at once! I may get nausea and sickness, I may get diarrhoea, I WILL lose my hair. I may get a quick infection and need urgent antibiotics, I may need a blood transfusion……but not yet. Maybe tomorrow. That is why I am writing so much blog now to catch you up while I can. That is also why they will keep the central line in for at least a week, in case they need it for urgent access.
Outside my room door is a large insulated container about the size of a small dustbin. It is sealed and contains my stem cells harvested at the beginning of December for returning to me tomorrow. As the Malphalan is slow to act, by giving the stem cells back as soon as possible after the Uber Chemo, it is hoped that they will have found their way to the bone marrow and begin morphing into white cells coinciding with the killing off of the existing ones. It won’t quite match up at first, but gradually numbers should pick up and I can find my way out of this particular wood. All this physiological devastation wreaked on me today will lead to me feeling weak and ill for a while but the white Knights are waiting in the shadows soon to strike.
Tonight I walked a mile on the ward. I have made a friend called Paula who has similar issues to mine. She will get the Megazap on Monday and her cells Tuesday. Being a 36 bedded ward which is 80 metres long, 10 times out and back + 40 metres gives us roughly 1 mile. Paula carried on and did 5 miles. I had a blog to write so couldn’t continue. I also want to play a few online scrabble games otherwise my cyber playmates will force forfeit me for being too slow! I will get this off to Emma now to edit. I hope you like the pictures and please ask me to explain anything you want more information about.
The song by Green Day, one of the bands my granddaughter Anna likes, recorded the song ‘Good Riddance’ a few years ago. The actual composer said it was about the loss of a girlfriend who went to live in Ecuador. However like all good songs it got reapropriated by other agencies. It is now an obligatory play at American High School leaving Proms. The young people see the words as representing leaving High School. They are glad to go but recognise the positive and good things that came from the High School experience. It has similarly turned up with a relating video on Cancer song lists (if you didn’t know there were any believe me there are dozens!). The song suggests that cancer whilst scary and utterly frightening can also have a very positive side with wonderful and beautiful experiences too. Many people may not agree with me here. Many people have such dreadful experiences. For me though, my family and friends have made this experience far easier to manage than it could have been. I speak as I find. Life is full of challenges and cancer is just one of them. I don’t think I am even particularly brave. I think I am just realistic. On that very controversial note I will say goodnight!
Emma writing: I will update the blog while Mum is unable to, so that all you lovely kind people know what’s going on.