I have had my fifth vaccine and my final one of this group of five. If all is well I would go back again now in 3 months and I have a provisional date booked in February. BUT - I will have a scan before then to be sure that from all perspectives I am in a good place. My bloods were slightly mixed, which is annoying given it was the last vaccine of the five. I had a horrible cold a few days before travelling and was still snotty and sneezy while there, but getting better. My liver bloods were very good and so weremost other results (including e.g. haemaglobin), but my circulating cancer cell count and the breast cancer marker, plus my inflammation marker were all slightly up and higher than last time. But it would not be unexpected for these to be affected by a virus or infection. So the news was not bad but in Dr Martins words ‘goodish’. It is frustrating that I was ill as I am not sure if these results actually indicate some change or really just reflect me being ill. So I have agreed to a scan. I had previously decided I did not want one, not just because it exposes me to nasties but because psychologically it is really hard. But Dr Martin and my oncologist here are working slightly blind without that information. Dr Martin has a Plan B up his sleeve but needs to be sure if and when to use it. In my mind there are three outcomes - 1) it is the same as before - this will be disappointing but stable disease is not bad, and if this is the case I go back for my next dendritic cell in February 2) it is better than before - if so also I go back in Feb 3) it is worse / and or somewhere else - I go back sooner for Plan B. The very thought of option 3 is terrible and I am not sure I would be that happy with option 1.
The scan is booked for tomorrow (Thursday 26th). Gulp.
Last blog I wrote about hyperbaric oxygen therapy. Well I could not attend the session I was booked on before my trip to Germany because I was snotty and had bad ears. I had a session last week and all last night my ears have given me gip - and I am wondering if maybe it was the HBO sessions that triggered my first cold, which started in my ears. I need my immune system to be fighting my cancer and not diverted by a cold or ear infection, so I think maybe HBO is maybe not right for me. As a child I suffered terrible ear aches and infections, maybe I am not very good at dealing with the pressure changes. I may still go and just breath the oxygen, but outside the chamber and so not under pressure.
I am going to whinge again about juicing. Juicing is a mainstay of my healing plan. But I simply hate it. I have had some many very kind suggestions about how to make nice juices but the reality is that to get enough mainly organic vegetables etc it costs money and take loads of time. You need a certain mix to get enough juice to make a large enough drink. It is easy to run out of some of the core juicing ingredients and be left with vegetables which I only use minimally or which don't produce much liquid. Replacing my stocks is a job in itself as there is no very local source. While I am lucky to live in Brighton, my normal source (over and above a juice box I have delivered but get through very quickly) is Infinity Foods. A trip there takes time and my week is pretty full already with my work, the kids, making the stupid juices, trying to fit in exercise and yoga (which I also am having trouble to keep up with). So not only is it difficult to simply get the ingredients, if you run out of the mixture that is more palatable - you can't just throw the rest away you have to work your way through them which means the quality and taste of the juices deteriorates. Knowing what makes a nice juice and having the right mix of ingredients all the time are practically incompatible. Oh, and have I complained about the actual time it takes to clear up after you. I was spoilt to have Ella most of this year, but withher gone I now realise quite what goes into the whole process. The drinking of the juice is a miserable affair. This is probably halting all my enzymes from working, so I try and make it not a miserable affair and cut up pieces of foods to eat in-between each mouthful to cover up the taste. I think when I started I was up for anything to fight the beast. As time has gone by, I am still totally devoted to survival but the reality that this is now my lifelong focus is hitting home and that is hard. Keeping my supplements in stock, preparing them each morning, juicing, trying to work out what to eat (when I have literally no cook gene in me and now I have cut the amount of food types I can eat the task is even more difficult), booking oncologist appointments, scans, having my monthly injection to keep me in menopause (which also hate), my appointment to talk to a consultant about removing my ovaries and on and on.
Tom (my 17 year old) would say to that rant ‘Mum, that’s a lot of hating!’. It just seems rather interminable. I know what my long game is and this is how I will achieve it but that does not mean I don't get tired with it and wish it was all back to normal. I have gone off alcohol, so I don't physically miss it, but socially I do. Evenings with Rupert, snuggled at home in front of a fire with a nice glass of wine. They are not all gone but I need my sleep (part of treatment plan) and do get tired (hormones and diet). Things have changed. And for Rupert too. For all of us. We are so privileged to be so happy as a family and I would prefer to be in the situation I am in now having experienced that happiness and love than to never have done so and be healthy. But I can't deny there are times when the foreverness of my situation hits me. However long forever is.
When I was first diagnosed, in those very first terrifying moments when simply everything poured into my head in one go I remember thinking ‘Is that it?’ Most of my thoughts if I am honest were practical. Would I go to work the next day? Would I ever go to work? How would I organise the next few months (which I must have assumed I had)? At home every time I opened a drawer or a cupboard I just saw stuff and it all seemed so meaningless. Now I am denying death, I don't think like that anymore. In fact it is those very thoughts that indicate you have given up already and are preparing for death not living life. As I grew in determination to heal and live I found a new energy. It is hard I realise to keep that focus. My hormone injections make me very tired for a few days and when I am tired the shadows lurking in the dark start moving in. I start to doubt and I feel fear. My scan tomorrow has me all disturbed. What is it going to show? And what will I do with that information.
I did think about postponing it until after Xmas, but I decided I would simply drag out the uncertainty. I spoke with Ella yesterday who reminded me - is everything OK right now? then everything is OK.
Christmas is approaching far too fast. Last year before Xmas we invited friends and neighbours for a drink or to celebrate, and we will do the same this year. I had cancer in my liver last year, I just did not know I did. However much I am living for now and presuming life I cannot help but have a, just in case, approach to everything. For years I have fought the kids desire for a chocolate advent calendar (although they always seem to get one one way or another) but this year I bought them a hideously expensive one at Hamburg airport - just in case. I am fiercely building those memories, just in case. I like to put the Xmas tree up earlier than Rupert, but he is travelling to work for the first 10 days of December so I have decreed that if the xmas trees are for sale at our local supplier this weekend we will get ours before he leaves - so we can enjoy it for the longest possible time. Just in case.
I will find out what my scan says in a week or so.