7. Margaret and Lyn’s Big Day Out

There is more to life than increasing its speed

Mahatma Gandhi

Yesterday turned into quite a tiring day – possibly the most so far – so I sloped off to bed at a ridiculously early 9.00,  abandoning all thoughts of trying to write a coherent blog. And let’s face it, the howling rain and wind outside were all the inducement I needed to snuggle up under the duvet with a hot water bottle. Yes readers, a good old fashioned hot water bottle. Right up until all this stuff hit the proverbial fan I have been an advocate of electric blankets, but we are trying to clean up our act here and get rid of some of the more toxic things around our home. And if  you are trying to rid your body of toxins it clearly isn’t a good idea to be sleeping on a network of highly conductive wiring. Likewise microwaved and processed food is out. Microwaves lost all their brownie points with me when I discovered two things recently: firstly that in a recent school project, plants watered using only microwaved water shrivelled and died. The plants that were watered with proper tap water did in fact thrive so I don’t think you can put the deaths down to the ineptitude of the kids. Sorry.  The second is that although veggies might look lovely and crunchy and green (or orange etc) they actually lose 95% of their nutritional content when microwaved so become, in fact, nutritionally worthless.

Relating this in a circuitous route back to me being ill, it does make me wonder how many of our illnesses are caused because we are not nourished or sustained at a deep level by either our lifestyles or our food. Which brings me SO nicely back to Bournemouth Hospital, and this time to their coffee. I had to go back yesterday to get my blood count checked and my lovely friend Lyn came along to keep me company. Actually she drove me, so it was more a case of being taken,  which in the end I did appreciate as it turned into quite an escapade. Firstly, I do have to say that the lady at the WRVS (Women’s Royal Voluntary Service) tea bar excelled herself. Lyn’s standards for her regulation half strength latte are legendary, and when we called in for a mid-visit pick-me-up, I did have visions of her being disappointed. As latte wasn’t available Lyn graciously downgraded to a cappuccino, which apart from being served in one of those cardboard cups that sticks to your lips, was apparently absolutely fine.

I was under the misguided impression that I would be popping in for a blood test, nipping round to see the MacMillan nurse for some reason I hadn’t been given yet, then going back home, all in about an hour or so. Oh nooooooooooooooo. I yet again had this feeling of not quite being part of the club, and someone should really sort this out. The first thing you need to know about cancer club is that you must have Paperwork. Without Paperwork, nothing can happen. Fortunately my name appeared on the guest list for the club, held at the main desk by a very jolly man, who pronounced that yes, I really did exist because I was on the list. That worried me a bit. How many of their patients didn’t exist? Or how many really did, but didn’t appear on the list? Probably best not to go there in the circumstances. Ward 10 has a special club lounge where guests wait until called for their treatment. Out of date and particularly tatty magazines are considered one of the special attractions here, as is a special ventilation feature. Slightly open window over ragingly hot radiator.

I was soon called for ritual bloodletting. I have said in the past that the staff on the in-patient Ward 11 are absolutely fabulous. Anything really does go and you can be sad or stupid or funny without fearing judgement, which is always going to happen when you are unfamiliar with the etiquette of your surroundings. Ward 10 has a different kind of code which has a more pedestrian and ‘let’s get on with it’ approach. I sat in the proffered chair and flopped out my lines. (Hickman Lines are inserted above and to the left  of the heart and allow direct access into the vein going into the heart. The lines are white plastic, come straight out of the chest and are about 8 inches long. For a lady they usually nestle in her bra. No idea what the men do.) I tell you, for sheer shock factor this knocks the socks off breastfeeding in public and I can’t wait for an excuse to do it in M&S. Fortunately the nurse had seen it all before and she calmly arranged all the test tubes ready to receive my precious blood. We then started on this arse-about-face discussion of when my lines were last flushed. I said, Saturday, when I left here. She asked when the District Nurse was going to do them again. I said on the day of my last injection to boost my cell count, which is 6 days hence. She said that was too far away, they have to be done Every Seven Days. I think I know this as an awful lot of people have said it. So I suggested that maybe she do them both today when she takes the blood. Nope. Apparently they only take blood from one line each week so Someone will have to clean the other one at a different time. WHY?! Why not consolidate? Why not say,”‘Oh here is a person with slightly grubby lines, could do with a flush, let’s get on and do it”? I think I must have looked so stunned at the non-joined-up-thinking going on here that she relented and as a huge favour did them both. Then she asked for my line flushing record. Oh no. I didn’t have one of those. “You need to have a record of whoever touches your lines.” This was getting perverse and ever so slightly kinky. I’m sure that even porn actors don’t get this level of attention. Happily I now have my lines record safely stashed and will make sure I have a signature  for whenever anyone so much as looks at them.

The lovely District Nurses have been calling in to give me my cell-boosting injections and they mentioned that I could have today’s injection done as part of my blood-letting visit. I was beginning to worry about mentioning this given the debacle of the line-flushing incident, but I had no choice – I had to have the injection. “No problem”, she breezed, “have you got the prescription?” Blank look from moi. “You were sent home last week with a prescription for the District Nurse so she could administer the injection. Where is it?” I told her that the District Nurse had it now because – um – it was addressed to her and she took it away to her special place where she presumably puts all the things addressed to her. This meant I had to get the next person I was seeing, the MacMillan nurse who co-ordinates all the treatments (still don’t know why I was seeing her!), to fill out a NEW prescription so that I could come back into Ward 10 so that someone could inject me. Jeez. You couldn’t make this up. And all this time my lovely friend Lyn was expiring in the club lounge outside. Finally been dispatched back to said club lounge to await results of blood tests – AHH yes, THAT is why I had to see the MacMillan Nurse. At this point I needed my warm cheese sandwich (yes, another one) and Lyn required fortification with a latte-turned-cappuccino so we repaired to the WRVS tea bar for half an hour.

You’ll be relieved, I’m sure, to know that it did all work out OK in the end. My blood cell count is holding its own and Catherine (the MacMillan Nurse) managed to write the prescription for my injection, which, curiously, she managed to give me herself, having written and signed her own piece of paper. Not before asking why I was clutching the entire box of injections to my breast. “You should have just taken one out and popped it in your handbag to bring here”. “B-b-b-but I didn’t have the right piece of paper,” I stammered. Kid you not, I really, really did. Lyn was there and she will vouch for me.

We nearly made it out unscathed after that. We got all the way to the final set of doors, a very good 5 minute walk from the Ward, when Lyn remembered that we hadn’t stamped the car park pass. Cancer patients get free parking! So we schlepped all the way back through the double doors, up the stairs, through more double doors, along the corridor, sharp left into Ward 10. “Hello”, smiles Mr Jolly not recognising us, How could he not? Have we ceased to exist? “Just stamping ticket and we’re outta here!”. Phew made it. And next week we do it all again….. :-) Thank heavens for Lyn.

Several people have suggested starting a healing circle for me and they requested a suitable time at which to tune in. If you haven’t done this before and would like to participate, you just have to sit quietly at the allotted time and send healing thoughts in my direction. Thank you for such a beautiful thought. 21.00 GMT would be good for me and hopefully it is OK with most other time zones too.

Good night!

Margaret x

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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
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11 Responses to 7. Margaret and Lyn’s Big Day Out

  1. Aloha Margaret – You write beautifully and I am still chuckling to myself!! It’s good for the soul – many thanks. I can so relate to bits of it from when I had to have regular checkups and blood tests in Bristol in the 90’s except the coffee there was not so great!!! I so agree re microwaves. 21 GMT is perfect for tuning in. Sending you lots of warm sunshine, love and hugs Margaret

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  2. Great writing Margaret> So glad to hear your blood is holding its own, no doubt it’s being helped by all the wonderful nutrition boosting formulas and healing vibrations that are pulsing through your system. A healer friend and I were discussing the merits of pomegranate juice the other day and methods of preparing pomegranate concotions. She puts the seeds into a blender rather than a juicer to which you can also add yoghurt to make smoothies. Very yummy! I will tune in at 21.00 GMT. Hugs to you and Stephen. Mishx

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  3. Lyn says:

    Hello Margaret,
    I am pleased that your white cell count is remaining good, I am sure this is in part due to your non toxic approach. Although the doctors may not listen, it maybe worth documenting your ‘re regime, including the vitamin A, Pomegranate juice and the wheat grass. Any of us may need this valuable information now or in the future.
    Love to Both
    John

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  4. Darrelyn Gunzburg says:

    Hi M, Good to hear the cell count is holding. Yay! Now I know you have valves inserted into you so that it makes it easy to take blood but for those of us who remain uninitiated, maybe you could explain what lines are and how they are flushed?
    Sending love, Darrelyn x

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    • Okeydokey. Haven’t figured out how to do links here yet, so get an idea of what it looks like, google Hickman Line. It is put in under local anaesthetic before chemo starts as an easy was to get treatments into the body and to take blood samples out. It is normal to have 5 or 6 samples of blood taken each morning as an inpatient so the doctors can keep up to date with how your body is coping. It is much kinder to do this through the line as veins would very quickly collapse if ordinary needles were used. The line comes out of the vein, loops around the chest under the skin, then exits the body just above the breast. About 2 inches after that it divides into two thin tubes, which are the magical ‘lines’. The lines and section of tubing under the skin must be kept sterile inside so every time blood is taken or treatment is given it must also be flushed afterwards and a clotting agent sent down the line so blood doesn’t seep back up. Once a week it all needs to be flushed through with saline solution to keep the whole thing fresh and clean. And the record book signed! :-) Hope that helps Mxx

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  5. Barnaby Roberts says:

    Loving this, always knew you would be a superb writer

    Life has given you lemons and you are making pomegranate juice
    Stephen must have been given grapes at some point which means when you have finished all your nourishing drink, there will be plenty of wine for your book launch

    Can’t wait to read this again in its full glory and see what you choose as cover art

    “Wine is constant proof that God loves us and wants to see us happy.” – Benjamin Franklin

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  6. Wendy Gawtry says:

    Thank you Margaret for letting us share your experience, its certainly makes good reading and am learning such a lot.

    Keep your spirits up, I think of you and send healing thoughts everyday.

    Love to you (and Stephen). xxx

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  7. Ronnie Smith says:

    Hi Margaret – I had some good news on Friday – I had a pet scan last Monday and my cancer hasn’t spread – I am so relieved – I also had a lung function test last turesday and passed with flying colours – another bit of news is I was in Asda in Bournemouth today and they sell Dragon fruit so I bought some – I will have to liquidise it as I cant get any solids down my gullet but I will mix it with Oatly or Rice milk so that it is smooth to go down.

    My 80 year old brother will be coming down to Bill’s to visit me from Scunthorpe tomorrow – it will be lovely to see him and I know he wants to see me before my treatment.

    We went to the Picadilly this afternoon – I find I get out of breath more but will not give in and am determined to go to Portugal – my nurse told me that they will work the treatment round me so fingers crossed – spoke to Barry about travel insurance and he goes with Staysure so am going to give them a phone call to see if they will cover me. Also spoke to Lenna and I didnt realise she does councilling and support to cancer patients. She is a lovely lady – in fact the amount of people praying for me is overwelming – I am also praying for you.

    My daughter’s partner has set me up with a blog so I will be able to write down how I feel when my treatment starts – at the moment I am able to talk about it but know when it starts I will bottle it up but might have comfort in putting things down in my words.

    I will close now as am very tired but I wish you well and hope you are feeling better day by day – take care and will speak again soon.

    Love Ronnie xxxx

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    • Hi Ronnie,
      Such brilliant news, I am so pleased. Waiting for news from a scan is akin to torture so I know how relieved you must be. Isn’t dragon fruit weird? Looks a bit like polystyrene! Writing a blog is incredibly cathartic and you get so much support from it. I, too am overwhelmed and humbled by the response and the amount of healing that is sent so it is very worthwhile putting in the effort.
      Sending you warmest wishes for your continued good spirits and health!
      Warm wishes Margaret x

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  8. Caron Rogers says:

    I’ll also be tuning in daily at 21:00 Cx

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