20. A Busy Old Time

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

Margaret xx

Advertisements

About Margaret Cahill

After diagnosis of Mantle Cell Lymphoma in 2013, I started this blog to stay in touch with friends, family, and and an ever increasing network of lovely people who sent me healing. The readership increased and I ended up blogging for all I was worth to try and stay sane through the chemotherapy and stem cell transplant. Then after I went into remission (thankfully) I was enjoying the writing so much that I have carried on, and the blog seems to have become a bit of a resource for people, which is lovely. The original year of blogs have now been made into a book, Under Cover of Darkness: How I Blogged my Way Through Mantle Cell Lymphoma. It fills in a lot of the gaps between the blogs, and the tone falls somewhere between graveyard humour and explicit details of chemo treatments. I do hope you enjoy it :-) Mxx
This entry was posted in Uncategorized and tagged , . Bookmark the permalink.

17 Responses to 20. A Busy Old Time

  1. Dolores. says:

    HELLO MARGARET

    Sorry I have not gotten back to you until now.. Have been hard at work on a book.. Im leaving on £rd April for the USA , will be back on May 1st. Will try to keep in touch but traveling around means I do not always have access to Wifi.. and my old laptop is not too good at emailing.. but will try. You sound so much more postive now, keep it up. have a wonder restful Easter dear.. muc love
    Dolores

    Like

    • Hi Dolores,
      Thank you so much and it is lovely to hear from you. I hope you find at least a little time for some rest in amongst your travels.
      Much love
      Margaret x

      Like

    • Helen Legg says:

      Hi Margaret it’s so lovely to hear all your positive news. Jerry would normally give me a virtual medal for minor achievements so I’m sending you the biggest medal in the virtual cabinet :) When feeding the girls many years ago my dad bought stout into the hospital for an iron supplement and a quick research proves only a little iron is actually involved. This is what I found:-

      Guinness is a meal onto itself. It has long been touted as beneficial to health (especially for pregnant women) and a good source of iron. But, the proof is in the pudding, here is some comparison:

      “Iron content of various foods/drinks:

      Iron content (mg)

      1 pint of guinness
      0.3mg

      100g ready-to-eat apricots
      3.4mg

      100g ready-to eat prunes
      2.6mg

      1 egg
      1.1mg

      bowl of weetabix
      4.2mg

      bowl of porridge (40g)
      1.6mg

      3 oz grilled lamb chop
      1.9mg”

      To supplement dietary iron, it would take quite a bit of Guinness; sounds like fun, so maybe the weetabix is the best option. Sending you all our love and please give Lynn a hug when you see her as I do not have a contact for her and have also been thinking of her

      Helen Xxx

      Like

      • Hi Helen,
        This is brilliant, thankyou and it certainly makes a change from the liver! I am supposed to be off fruit to starve the cancer cells (cancer cells love sugar) but I think the anaemia is more of a problem just now as I need to be strong for the next cycle. We are just off for a walk to sainsburys so it is perfect. I haven’t done any exercise since all this started and so done else has said how good it is to walk. Even being a bit anaemic I should be able to stumble down to sainsburys!
        I will pass on your regards to Lyn. Shall I give her your mobile number?
        Big hugs to you both
        M xx

        Like

  2. Neil says:

    Your comments about pond water made me laugh! Do you have your feet up right now? You better…! xxx

    Like

  3. I was recommended this web site by my cousin. I am not sure whether this post is written by him as nobody else know such detailed about my trouble.
    You’re amazing! Thanks!

    Like

    • Hi there,
      All the posts are written by me but the comments aren’t….it is really just a journey into finding a way of dealing with all this! People are welcome to share what it is they discover. One thing I have definitely found is that my system feels much better with less acid, which on a very basic level is less coffee, less meat and less sugar. Starting the day with hot water and lemon or ginger is a really good for you and I find I enjoy the one coffee I allow myself a lot more because my system is more hydrated. Good luck with it!

      Like

  4. Aloe says:

    When I originally commented I clicked the “Notify me when new comments are added” checkbox and now each time a comment is
    added I get four emails with the same comment.
    Is there any way you can remove people from that service?
    Thank you!

    Like

    • Hi Paulina,
      Thanks for following the blog and I’m sorry to hear you are having the problem with the duplicate emails. Unfortunately wordpress isn’t very friendly to either the person publishing the blog or the people trying to use it! It doesn’t have a support desk, only a forum where questions can be posted. I noticed that somebody just posted a similar question an hour ago, so maybe there is a bit of a glitch at the moment. Maybe the best solution would be to stop following for a couple of days then try again. I’m not going to be putting anything new up until after the stem cell harvest (which looks like it might be delayed as I am still very anaemic) so you won’t be missing any updates. Sorry I don’t have a better solution, but I hope this helps a bit!
      Warm wishes
      Margaret

      Like

  5. Hmm is anyone else experiencing problems with the images
    on this blog loading? I’m trying to determine if its a problem on my end or if it’s the blog.

    Any feed-back would be greatly appreciated.

    Like

    • Hi there,
      I haven’t heard of any other problems. U fortunately wordpress isn’t the most user friendly site and it doesn’t have a support desk to ask. Have you allowed your computer access to the website? I know if you don’t allow all the page that stops the images loading. Sorry I can’t be more helpful….might be worth googling?
      Warm wishes Margaret

      Like

  6. I seldom leave comments, however I browsed a few of the comments
    on 20. A Busy Old Time | Margaret Cahill. I do have a couple of questions for you if it’s allright. Is it only me or do a few of these responses look like they are left by brain dead visitors? :-P And, if you are posting on additional social sites, I would like to keep up with anything new you have to post. Would you make a list of the complete urls of your social sites like your twitter feed, Facebook page or linkedin profile?

    Like

    • Hello there.
      I would suggest you don’t bother any further with my blog and find somewhere else more suited to your comments. The ‘no brainers’ you refer to are people who actually care for me and want to support me in what I am going through. I don’t know you and you clearly don’t care so please don’t visit my blog again.

      Like

  7. Caron Rogers says:

    I loved your positive approach to HBO, just go for it. However, horrified by Business Synonym Dictionary. Great response from you though , keep it up feisty (in a good way) one Cx

    Like

  8. Magnolia says:

    I actually question why you titled this particular article, “20.

    A Busy Old Time | Margaret Cahill”. Anyway I enjoyed the post!Thanks for your effort,
    Marianne

    Like

Leave a Reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s