16. The only way is up!

Dearest everyone, thank you so much for all your chanting and healing energy. I went to have my blood test today and my white cell count has gone from 0.9 to 48. In 3 days. Yes. How absolutely totally incredible is that? Stephen (cynical Virgo – no!), did wonder whether they got the decimal point in the wrong place last week, but I’m happy either way! The doctor did say that levels can “really shoot up” with the GCSF injections but even she was surprised at quite how much mine had. She of course has no idea of the enormous amount of healing that has been coming my way, and I wouldn’t expect her to even begin to understand it. She seems nice though, so maybe on the ward we will get around to having a bit more of a chat and I can test the water a bit. But the main thing is that it is well above ‘excellent’ and for that I thank you all from the bottom of my heart. I need my platelets to be a bit better populated so if you have the odd moment that is the next point of focus, but I am on now track to start my next cycle of chemo next Thursday 28th.

I had a totally mad piece of head-wear arrive in the post today from the lovely Judy (who has been commenting on the blog from her holiday in Egypt), that I opened and tried on when on a high from the hospital visit. I think it is for a bellydancing outfit, and I share it here so you can see just how happy I am at the blood test result:

Judy hat

I bumped into Dot on my way into the ward, and she was very sweetly telling me about the right kind of diet for neutropenia (which I’m not any more, yay!), which was very interesting. Given that people with low white blood cell count are supposed to have hot, well-cooked food it does somewhat question the wisdom of taking such people into hospital. Yes, it does protect them from the bugs and germs of the outside world, but how can hospital food possibly help them get better? Hmmm. I hear Jamie Oliver was involved with hospital food a while back, I wonder what came of that. I might email him to find out.

I must admit I have had a couple of days where I was on the verge of calling the ward to see whether I should go in. Having an itchy throat and sinus headache is very bad news when you are neutropenic, but for me the prospect of the lack of sleep and horrendous food really turned it into a life or death situation. I think Stephen was very worried, but I promised that I would be sensible, and if things got too bad I would call them. I really, really wanted to stay home with a passion, and, thankfully, I managed to. I wanted to have home cooked, good quality food most of all, and sleep with no interruptions a very close second. It made me think again about how important it is to feel nourished on many levels when we are ill, and how none of that is addressed in hospital. For instance, Dot’s heart is in the right place, but I think she is slightly mis-guided in her intentions, and somehow the patients have been shoe-horned into her schedule rather than the care being patient-led. That sounds like a really good, but unlikely, management phrase, doesn’t it? It has just occurred to me that there are patient questionnaires all around the hospital so I think I might try to get hold of one of them and see exactly what they are asking about. I really, really doubt whether they ask, ‘Please score the quality of hospital food on a scale of 1 to 5….’ I would so love that one. However, I will see whether there is any other way of giving feedback. I doubt I can do much about the food, but I was talking about the constant interruptions and early wake-ups with the nurse taking my blood this morning, and she said I should tell someone about it. Then she said she would too as it was really important. Her words were, ‘there is no way anyone can get better in hospital with all the early morning routines and interruptions’. Wow. As I am in hospital next week I am going to try at least to see why they disturb us at such silly times and request whether some flexibility is possible. I think I already know the answer, but I am willing to bet that patients don’t dare say anything so it has never seriously been considered before – I am willing to run the gauntlet! There is something so debilitating about being in hospital even if you are feeling well – I mentioned  previously about changing into day clothes every morning so I don’t feel so powerless, so I will wait for the appropriate moment when I am fully clad for the day. I might have my special pink belly dancing hat on just to disarm them :-)

The pink theme is really gaining momentum, and it really only started out as a bit of a joke with my two boys some time ago – I had to do something to counteract the massive amount of testosterone belting around, so I started very slowly with the odd item and now it has grown to this! Last time I was in I had towels, flannel, toilet bag, soap holder, slippers, duvet cover, slippers, pyjamas, all in black and pink or just pink, plus the lovely knitted hats, Fenella Flamingo (pics below)…and I have since gained a pink wineglass and now Judy’s pink hat.

Fenella2 Fenella1

And the medics seem to love it. It also makes me feel stronger too. I always place Fenella (whom I have had for about a year now – she isn’t just a hospital flamingo) behind me so that they have to look at her when they are talking to me – you can see that she is really stern and will take no prisoners. I like to think that with all the pink influence the doctors and nurses feel  they are coming into my area – call me deluded but I think it helps. Just to see them crack into a smile, or try to stay focussed on me when they are also looking at a pink fluffy flamingo is priceless.

I want to say that I think I am getting truly amazing care at the hospital, and in no way should my comments be seen as a criticism of the wonderful people who are working so hard to make me well. What I am hoping is that I can inject a little more fun and life into proceedings while I am there, as we all know how important it is to stay positive. Talking of being positive, feelings can run very high in the waiting room. Stephen and I were talking to a lovely old couple (80 and 84) who were there for the husband’s treatment, the last of very many sessions during which he had had several remissions and relapses and had survived to this point, smile intact. I did see them as being inspirational, and although  they appeared to be reciting a whole list of treatments, they were actually being very positive. Another lady present didn’t see it as so, maybe she wasn’t listening with both ears. She was called to see the doctor, and before going out, turned towards us, and then the elderly couple, and asserted, ” it isn’t always like this. It doesn’t always come back. I’ve been clear for seven months. Positive mental attitude, that is everything. It doesn’t have to come back”. Then she stomped out. I was horrified. I don’t think I would like to live with her version of a positive mental attitude. Granted our new-found friends were slightly intrusive and I was beginning to miss the book I was reading, but I was angry that they had been so attacked by a stranger when they had been through so much, and they were simply sharing their story with us. People change when they are given a diagnosis for a life threatening disease, and they cope with it in different ways. This woman was obviously fighting it with every fibre of her being, but it did make me wonder, where is the love and lightness in her soul? And in terms of cancer, I’m sorry, but seven months isn’t a long remission, especially when compared to what this gentleman had been through. How will she cope if it comes back?  Her so-called ‘positive mental attitude’ had actually rocked four people, and not in a good way. My heart goes out to her.

Be happy and well!

Margaret xx

 

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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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16 Responses to 16. The only way is up!

  1. Dolores. says:

    Wonderful news about the blood count.. but we will keep it going …Ilove Fenella she looks like a really good companion to have.
    Sleep well and have lovely dreams dear..
    Dolores

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  2. Jeni Powell says:

    Fantastic news re the blood cell count!!! Shame about that lady putting the dampners on things for the four of you. You are right, It is SO important to focus on things with love rather than fear. I remember making a milkshake for Steve and getting quite stressed about it as it was the only nourishment he could handle – I REALLY wanted him to drink it (even though it was difficult for him to swallow anything at all). When I gave him the milkshake he handed it straight back to me and said “Now go away and make it with love!”. As he was becoming more sensitive to energies, he had sensed the anger and stress that I had “put” into the drink and said that would cause him more harm than not drinking it at all…..wise words indeed! Will continue to send healing for the increase in the blood cell count. You are the epitome of beauty, strength and courage! (and Stephen too of course lol ) xxx

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    • Hi Jeni,
      Those are wise words indeed – and the cancer ward waiting room seems to be a maelstrom of people’s feelings. Anyone with an ounce of sensitivity picks it up immediately, then someone like that lady homes in on them. I think this really is a case of ‘walking the walk’, and it shows if you aren’t. Stephen and I were unprepared for such an onslaught but I will make sure we are adequately protected next time! Thank you for your lovely words and healing thoughts.
      Big hugs
      Margaret x x x

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  3. Judy Hall says:

    The hat looks even better than I expected with that wonderful smile underneath it! Wear it for Dot. That’ll put a smile in the tea. When not wearing it, it might look rather good on Fenella. Even better if she, or you, got up and belly danced for those doctors. That would shake up the ward – and produce a few red blood cells somewhere along the line. Platelets are floating your way on fluffy little pink clouds. Enjoy!
    xxJ

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  4. Katrin Kelly says:

    Hi Margaret!
    You look great!! I love Fenella too! She is fabulous! Thinking about you! Much love from Berlin! Katrin

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  5. you look beautiful in your new hat. pink suits too. lots of love and great news about the white cell count.
    love and hugs
    Komilla

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  6. Cindy Chapelle says:

    You do look great, Margaret!!!! I must have one pink flamingo! What a wonderful companion :)
    Love from Malta,
    Cindy xxxxx

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  7. Kris Brandt Riske says:

    You look fabulous! Fenella is adorable and no doubt keeps the medics in line. Wonderful to read the great news about your blood cell count! xoxo Kris

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  8. suzanne hancock says:

    Lovely blog. Just love reading and keeping up with you. Keep dancing are doing raffles this year all proceeds to cancer research. Its our way of showing we care. 4 members going through treatment at the moment all are so inspirational. Raised 126 £ on valentines night. Thinking of you constantly much love Suzanne

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  9. maria barry says:

    Hi Margaret, sending you lots and lots of healing and positive thoughts. I am a distant work related contact of Stephen’s. Also a Reiki master and have had a shared experience of living as a family facing a similar journey, so this resonates. I send much love and will be following your story :)

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  10. Penny Crane says:

    Hi Margaret — This is Joseph Crane’s wife. We met in New Orleans — when we both thought we were healthier than we were! Thank you so much for blogging through this experience. I hope it helps you, and it certainly helps those of us who read it. I am sending healing thoughts and energy your way (OK, keeping some for myself, too :) ) I truly hope that the white cell count is the beginning of a new beginning! And Fenella is great!

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    • Hi Penny,
      I remember you well, and it is good to hear from you. Yes, it is strange that we both thought we were healthy at the time. I did know I was a bit ill because my throat hurt all the time I was in New Orleans, but I had no idea it was this. Strange times, huh? Thank you for your good wishes and I send mine in return. I was so sorry to hear that you are ill too and I send light and hope that the treatment is successful. M xx

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