Today is world cancer day so I decided it was about time I wrote another blog.
Life has been even more of a roller coaster these last months. Regular readers will know I went to Ireland in July and despite all my precautions I contracted covid for the first time. As a former scout leader I took the “be prepared” motto to heart and had made contact with Cork haematology department before I travelled so when I had the positive test I contacted them, who in turn contacted Kings. I was prescribed the specialist antiviral treatment that clinically extremely vulnerable people need. It made me feel better for the course of the treatment and by the end I was testing negative. As soon as I finished, I started testing positive again. This went on from July to November. Talk about long covid!
I then had about two to three weeks of being negative when I ended up with rhinovirus. The lovely team at Kings kept me on a short leash and checked me weekly. The following week I felt rough. By then I had another dose of covid and a bacterial pseudomonas on top of that. The following week the doctor told me I also had influenza A alongside everything else. I just laughed which made him laugh too. The lab couldn’t believe it either. I continued to test positive up to 2 weeks ago and then within days of the negative swab I got that scratchy feeling in the back of my throat. My head then filled up with snot again and I’m still like that now with a horrible cough to boot. All I can do is shake my head in disbelief.
Despite all that, I still function, of sorts, and I keep smiling. People ask me how I do it? My reply is always “it beats the alternative.” Fiona was a good long term MDS friend. She sadly died last year after her transplant failed. Andy, another MDS stalwart died recently and I was fortunate to be able to attend his funeral this week. Both of them were my age! I’ve taken several funerals recently. One of them was for a woman younger than me. There is a Chinese quote that says “you’re a long time dead!” Thats why I continue to count my blessings. I also consider myself very fortunate to have such a good team around me, who I know, always have my best interests at heart. When I think about the horror in Gaza with no working hospitals now, it makes me weep. On the flip side of that I hear from people in America who can’t afford their treatment and again, I count myself lucky.
My wonderful medics and support staff have been on top form this week. I had some very confusing messages from the physio dept. One lot were giving me appointments and the other set of messages were saying I hadn’t been in touch and would be removed from the waiting list if I know longer needed the appointment. I emailed in to express my confusing and was at a loss to explain it. I then had a call from an ace admin assistant who said she was going to “channel her best Sherlock Holmes” to get to the bottom of the perplexing mess. What she eventually discovered was that I has 2 referrals and they were both live! I told Carrie she was a credit to the NHS and thanked her for sorting it as I was feeling a bit of an eejit at not understanding. She was great.
My next appointment was in the Haematology Assessment Unit. HAU is for the haematology patients who have an infection and need to be separated from the other vulnerable patients in the main outpatients area. The lovely Heather and Jellianne looked after me and did a very good job. Jellianne left Heather the challenge of cannulating me and laughed as she ran off. Heather managed it first time which shows how skilled she is and I was given my intravenous Immunoglobulin. IVIG is given to patients with a certain deficit in white blood cells and the proteins needed to make antibodies. It’s an amazing gift of life given but altruistic strangers. The NHS Blood and Transplant Service collects antibodies from blood and plasma donations. Then loads and loads of these antibodies are mixed together and given to people like me who don’t produce good antibodies. This gives us a chance of fighting any infection that comes along. Without it, I’d be in a much worse condition. I am very grateful that the NHS funds me having this expensive treatment. Again I count my blessings.
The day after having my IVIG I was back at Kings having a Bubble Echo. Sounds weird eh? I had a recent heart CT after developing some chest pain. The scan showed there could be something called a Patent Foramen Ovale. An FPO is a hole between the left and right upper chambers of the heart. Everyone has this before birth. In some people it doesn’t shut properly or can open up. It is not something screened for as, in general, it doesn’t cause any problems. The most serious complication is that it can cause a stroke. As I had a slight stroke in 2021 and then they saw this slight anomaly on my CT, they decided to do this bubble echo test. I met a couple of lovely cardiology physiologists. They were ace. Sadly I didn’t get their names. The first trial for them was to cannulate me. After 23 years of being stabbed millions of times my veins are small, wriggly and scarred. Even some haematology nurses look busy when they see me coming as I mentioned earlier. Lol. Fortunately I don’t mind needles. The woman doing the cannula took her time and had to dig around a bit but was successful on the first go. This doesn’t always happen, so all power to her. Then what they do it get two syringes and one of those tap valves that meant they could swish the saline mixed with some of my blood back and forth so it gets lots of tiny bubbles in it. Then they inject it and within 2 seconds its travelling through the heart. If the PFO is bad you will see the bubbles crossing the hole. Mine wasn’t bad at all and is unlikely to need more intervention but I still have to wait for the full report after the details of the scan are analysed.
During the course of all these treatments and viral and bacterial infections, my blood counts have been very unpredictable. It seems my system often crashes when I pick up an infection. This is why I have to be so careful not to be close to people with coughs and colds. Over the last few months I’ve needed blood and platelet transfusions. At times I’ve had to give myself daily injections into the stomach. Where I’m blessed is I don’t question that these things will be available to me. I know I have this amazing safety net. I know one day my body will conk out but while I can still enjoy life and find a way to contribute and interact with the wider world, I’m going alright.
On Tuesday I am taking the funeral service for Maggie’s cousin. Joe battled 3 types of cancer but kept his wicked sense of humour. I hope he will be smiling at us as we say goodbye to him. On this World Cancer Day, I shall honour Joe, Fiona, Andy, Diana, Marlene, Bette and all those who a cure was not found for. I also send my love and respect to all those living with cancer and the effects of treatment. I’ll finish with a couple of World Cancer Day quotes which goes with their theme “Together we are stronger than cancer”
“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” Orison Swett Marden
“Cancer opens many doors. One of the most important is to your own heart” Greg Anderson
