I am still amazed how fast the days are passing, and how busy those days are. When we first started dealing with the chemotherapy I assumed that I would have days lounging around being incapacitated and bored, with enforced rest, but the reality is that there is always something to do – and I have to actually schedule rest time. Stephen laughs at that as he persuades me yet again to sit down and take it easy. Usually, unless I am really feeling bad, I am up again after about half an hour with my nose into something or another. Just getting sorted out for the day also takes quite a bit of time as I have a lot of things to take. There have been various enquiries into what I am actually taking so I thought I would share it with you.
First up is two tablespoons of Aloe Vera juice. We use the Pukka juice which is from the inner part of the leaf and is really soothing and delicious. Chemotherapy can cause permanent damage to the stomach lining so I am doing everything I can to protect it. In the interests of keeping my body in a more alkaline state we have either a slice of ginger in hot water for our first drink of the day or linseed tea with a slice of lemon. Have you tried that? It is lovely. It lubricates the digestive tract and calms down inflammation. It also makes it easier for waste products to travel through to their natural conclusion as it is kind of gloopy. Take a few tablespoons of organic golden linseed, add about 2 pints of boiling water, bring it back to the boil (watching it like a hawk as it boils over really easily and is impossible to clean up) then simmer gently for about 20 minutes. Leave it to cool down for an hour or so. Once it has done so strain it into a jug. The straining part is interesting as there is a certain element of it which stays so gloopy it is unstrainable and you have to throw it away. If someone out there can suggest a use for the bit you can’t drink I am all ears, metaphorically speaking. We keep the jug of liquid in the fridge where it will be fine for up to 5 days. When you are ready to drink it put half a mugful in a saucepan to reheat then top up with boiling water and a slice of lemon. Delicious and very, very good for you.
After that and before breakfast I take two wheatgrass protein capsules, which support the immune system and a load of other things that have been shown to help destroy the cancer cells. It is available as a powder but I’m really not good with drinking pond water, which is what it does to anything you add it to. I also take 4 capsules of my Ayurvedic powders which I had capsulised as they make even worse pond sludge. Chemo messes with your digestive system so much that I found I really couldn’t tolerate drinking two glasses of the dissolved powders on an empty stomach. Breakfast is usually something like steamed spinach with a very small bit of steamed fish or a poached egg or two. The diet I am following is 80% vegetables and as much of that as possible should be dark green. Either spinach or curly kale, which is supposed to be the new spinach. Let’s hope they got their sums right this time :-) Very occasionally I have porridge made with water and stir in a big tablespoon full of whey protein isolate. This is very good when my stomach is sensitive and I need more protein – it is easy to lose weight when you are on chemo.
After breakfast I take two capsules of turmeric (cancer fighting), a spoonful of my Ayurvedic liquid, a capsule of Olive Leaf Extract (brilliant anti-oxidant and it helps to keep my heart and blood pressure under control) two Echinacea tablets, two teaspoons of Omega organic oil (flaxseed etc combo) into which I put one drop of Vitamin A and two drops of Vitamin D3. These drops, I am sure, are the reason that firstly I don’t suffer with the mouth problems that chemo patients usually do, and secondly that my blood count recovers quickly after treatment. After that I take the boring hospital stuff, a few tablets of this and that.
Lunchtime is a lot less intensive with just the Ayurvedic stuff before and after, and the evening meal the same but with more Echinacea and Olive Leaf Extract, followed by the oil but only the vitamin D3.
And it’s not just the tablets that take time. Last week I had to go to hospital every day to have a huge antibiotic injection into my lines, because there was an infection brewing where the lines come out. That would be a very bad thing and could be why I was feeling very ill in the early part of last week. I generally try to stay away from antibiotics, but an infection can turn from annoying to life-threatening very quickly when you are on chemo with a compromised immune system, and I’m not silly enough to mess around waiting to see which way it would go. I opted for going into the hospital every day for a week instead of taking 4 doses of 400mg a day in tablet form as it would have completely wrecked my stomach. Anyway, as a cancer patient you get free parking and a nice cup of tea or coffee (joking) and even sandwiches if you time it right (also joking). Dot has been mysteriously absent every time I have been in. No doubt I will get the chance to catch up on gossip at some point. And the infection has gone :-)
I thought life would slow down a bit now the antibiotics are over but I found that won’t be the case when I finally managed to get to the MS Centre to sort out the Hyperbaric Oxygen Therapy. I was incredibly disappointed not to be able to have a go, but this visit was to fill out forms; I’m now a member of the MS Society so will no doubt get a magazine every so often. If anyone wants it do let me know! It was also to let me see the ‘diving bell’ and discuss which depth I wanted to go to. The process is good for cancer sufferers as oxygen taken into the body under pressure kills cancer cells. I need to go as often as I possibly can to literally keep up the pressure. The centre is about a 40 minute drive from home, the dive lasts about an hour, then I will drive to the office, about another 40 minutes. As the dives are at 11.00, I should be in the office for about lunchtime on Mondays, Tuesdays and Wednesdays (assuming I’m not in hospital having chemo or sick at home), and I still have to schedule a rest. Crikey. Next week is especially busy as on Wednesday I have the HBO Therapy in the morning and blood tests and a meeting with my consultant in the afternoon. And a rest! Out of breath yet? I am…. Anyway I digress.
The staff at the centre are totally nuts. Maybe they nip in and have a quick session when no-one is looking. The diving bell is also nuts. It is metal, big and white with seahorses and shells painted all over it. There are little windows through which you can see five people hooked up to two tubes each, doing every day stuff like knitting and suduko as if it was a perfectly normal activity for a Monday morning. You can’t help laughing at the incongruity of it all. There are three choices of depth: 15 metres, 24 metres and 33 metres. I figured that as I have been thrown in at the deep end with this disease I might as well plumb the Plutonic depths straight away. Why paddle around in the shallows when you can dive straight in? Actually for my very first session I’m doing the 24 metres but then I’m booked into the deep one. And sitting in a metal container with other people doing their knitting and crosswords or whatever. Oh and the noise. Imagine five different rhythms of Darth Vadar breathing. I know I am going to absolutely crack up and I have no idea what happens when you laugh with pressurised oxygen going into your mouth and nose. Guess I am going to find out and I will of course share every detail.
So being ill is incredibly time consuming. My weekly schedule has suddenly been taken over by HBO, which combined with the weekly hospital appointment and the three weekly chemo sessions doesn’t allow any time for me to feel unwell. Oh and when I first come out the District Nurse comes for eight days to give me a GCSF injection to boost my cell count, which I will have to co-ordinate with the HBO sessions. I would quite like to also fit in some more sound healing sessions and other types of healing but I have no idea when. I need a PA!
I hope any Wessex Astrologer customers reading this will understand how my time in the office is limited. I am so grateful to have work as a diversion and also as a lifeline. The very wonderful Cathy who is our book keeper and usually sticks to the numbers department of the business is doing an amazing job of moving over to the words department to help keep orders going out and correspondence flowing. I know she doesn’t find it easy, just as I can’t add up a column of figures and get the same answer twice. We work really well together because of our different skills and I am absolutely indebted to her willingness to step into the breach.
I often work remotely on the days when I’m not up to going in and this at least allows me to keep up to date and in touch with the most urgent matters. When I do go in it is all with the best intentions to leave early and have rest, but it just doesn’t work that way. I think having your own business is a blessing and a curse. I am focussing very much on the blessing part as it is wonderful to want to go into work. I can’t imagine having a grindingly boring job as well as dealing with being ill.
‘Why all the resting?’ you might ask. I have been having daily blood tests to check the progress, if any, of the infection and last weekend the nurse said the tests showed that I was anaemic and would need a blood transfusion. For many reasons that I am sure you all understand, I absolutely, definitely do not want anyone else’s blood unless it is unavoidable. We went straight to Sainsburys to buy liver and even more spinach. I am also taking Ferrous Phosphate tissue salts to help with this, but around the time of discovering I was anaemic I realised I hadn’t taken any for a while. I am sure the two events are not unrelated, so I am religiously taking them now. I am happy to say that a few days later my favourite doctor mentioned that I was a ‘tiny, tiny’ bit anaemic, but on looking at my notes we both realised that the platelet count had come up in the past few days, so whatever I am doing is working. He mentioned the ‘T’ word again and I said that I would handle it with diet if at all possible, which was fine by him. I’m not saying that I have solved the problem as I’m not over it yet, but I don’t understand why the medics rush to do a serious thing like a blood transfusion when a change in diet can probably achieve the same thing. So I am having as much liver and spinach/kale/broccoli as I can force down my throat. Fortunately I do like it, but 4 days on the trot (haha) can make Margaret a dull person desperate for a change. The anaemia is the reason I have to rest. When you are anaemic you suddenly get really heavy arms and have to sit down, which is how you know you have overdone it, but of course that wouldn’t apply much to me. And it has to be a proper sit down with your feet up – sitting at a desk or doing a jigsaw puzzle doesn’t achieve the same thing, probably for some complicated scientific reason. Thank heavens for books and my laptop.
Nearly forgot to tell you the most exciting bit, which proves to me that we are in the second half, where I hope, like in a football game, we get lots of ‘goals’ and score lots of direct hits on the cancer cells. Apparently my consultant is really pleased with the way my system is recovering after every cycle (and seeing some of the poor souls in the waiting room, so am I) so he wants to harvest my stem cells after the next cycle in preparation for a possible stem cell transplant in the future. He has delayed that cycle (which should have been on Tuesday) for a week to allow me to fully recover from the antibiotics, which is lovely. I have this week to race all over the county to breathe lots of oxygen and eat lots of liver to get my platelets up. As I often observe to Stephen, we really know how to live. A week after Cycle 4 I go back in for another one day of chemo, then the day after that they hook me up to the machine that separates out the stem cells from my blood. The cells are then taken to Southampton by a motorbike courier with a flashing light (not really) to be frozen. This is real Frankenstein stuff. For the harvesting procedure I will have to lay almost immobile on the bed for 6 hours while my blood is taken out of one arm, pumped through the machine then pumped back into the other arm. I do hope they get the flow rate right! Me and immobile don’t usually appear in the same sentence and I’m not very happy about being unable to move my arms. You know that’s when the itches will start….There is an option to have a minor procedure to insert the necessary hardware into my groin, and although I rejected it initially it would be a lot better than not being able to move either arm. That would be like a vision of Hell, where there is food (and a book!) in front of you but you can’t bend your arms to get it to your mouth (or eyes). Isn’t it all exciting? All of this means that the next cycle – 5 – (SO close to the end!) won’t happen until early May. This is fabulous news as we’re are hoping to meet some very dear friends in Glastonbury at the end of April for some much needed R&R. Having this treatment means that I never know how I will be feeling from one day to the next so we can’t actually book a hotel as we might have to cancel at the last minute – we will have to take pot luck on the day and hope that somewhere has a place, but just like everything else that is happening now, I am sure something will turn up.
That’s it for now. I have loads more to write about but I will save it for the next blog – I’m off to put my feet up (as if…)
Wishing you a peaceful and joyous Easter