Take Me Back to Normal

What is it they say? If you want to make God laugh tell her your plans? Well, I hope someone up there is laughing because I certainly am not. I am fed up. Actually that’s F.E.D. U.P. with a good half a dozen exclamation marks for emphasis. (!!!!!!!!) For fear of seeming to contradict more upbeat and positive blogs that I have written in the past, it would be disingenuous of me not to express the flip side. Living with stage four cancer is not black and white, we cannot always be the noble and exceptional patient nor are we always self-pitying and woe-is-me. Life on this path is far more nuanced see-sawing somewhere between the two; there are sunny days and there are days when dark clouds glower ominously and oppressively. To sum up, I am fed up of being fed up. And I’d like a break please.

Having a moan and a whinge does not come without a sizable chunk of guilt. I know there are people out there who are enduring much worse circumstances than I. I know that I have a great deal about which to be grateful. But that little part of me that is feeling sorry for myself just wants to be seen and heard. She wants to jump up and down shouting “It’s not fair” “I want my life back” “I want to feel normal again”.

Normal – now what does that mean? I suppose to me, now, it means not having the state of your health on your mind, or at least lurking around the periphery 24/7. It means maintaining one’s independence, not having to rely on people in order to complete simple functions that you once took for granted. It means being able to make plans without first consulting the diary to see whether you are due to attend hospital appointments. Not wincing when others tell you of their plans for later in the year, and your mind finds itself begging the question, will I have the luxury of even being here later in the year? Simple stuff – driving, walking, breathing. It’d be nice to do those with ease again.

October was the last time I remember normal. I made a six hour journey by public transport to Devon to see my wonderful friends “the poncho fairies” where I was spoilt rotten, and we enjoyed mooching around Totnes, eating naughty cream teas (I’m told it’s the law in Devon!) and strolling on Dartmoor in search of cairns and ancient stones and piskies. Of the latter we did actually spy one.

That slice of heaven was followed by a spontaneous trip with my husband across the channel to Brittany in the van where we ended up at St Malo, an old corsair town. To walk around its ramparts, or explore inside the city walls feels like stepping back in time. However, the town itself was almost completely destroyed during the second world war but was painstakingly and lovingly rebuilt in its original style. We filled our bellies with mussels, chugged around the town on le petit train, marvelled at the beautiful light cast by the stained-glass window in the cathedral, and I even got to indulge my literary nerdiness and walk in the steps of Marie -Laure the young heroine of “All the Light We Cannot See” by Anthony Doerr, the best book I read all year.

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From St Malo we headed south west towards Carnac, detouring briefly at Monteneuf where there are some truly spectacular huggable ancient stones, if that’s your thing. Carnac was impressive in a different way due to the sheer number of stones laid out, there are thousands. Like Stonehenge, the more sacred ones are cordoned off from the public, to the annoyance of many who believe that they belong to everyone, but most stones are quite happy to be photographed, kissed and hugged by anyone who has the urge.

We discovered a stone burial chamber – 5000 BC the Tumulus de Kercado incongruously tucked away behind a Franco-Indian restaurant in the middle of nowhere. It would be fair to say that both were interesting in their own way.

As I write about those times, I recall the joy, the delight of getting out and about, worries pushed to the back of my mind, and the sheer bliss of normality. On returning to England, and re-entering the routine of treatment in London, life took a little turn off course, and rather than being allowed to return home, I was admitted immediately via A and E to a ward where I was treated for an infection, (I had been hacking away in France but thought that I’d shake it off no problem, just like the good old days) and slightly more seriously to prevent sepsis, for which I was borderline.

About my stay, I will say that I had a great view of the London skyline for Guy Fawkes night. I also discovered the delights of Deliveroo for the very first time, who actually deliver to your ward. I was gobsmacked and impressed. Also hugely relieved that I didn’t have to endure anymore of the sinisterly glistening and unidentifiable substances served up to me on a plate embarrassingly described as “food”. Why, why is it, that the food served up to people when they are at their most physically vulnerable is of the lowest possible quality? They can attempt to fool and seduce you with glossy laminated menus, elaborately describing meals to tickle your palate and make your mouth water. But the reality is a huge and unhealthy disappointment. During a recent stay in hospital, I ordered fishfingers and chips. Please don’t have a go, my appetite was zero and I was losing weight so figured how can you go possibly go wrong with a childhood favourite? More fool me. When it arrived, in its tepid post-microwaved state, I was disturbed to discover that my meal was actually sweating.

Please can someone consider improving the food that we deliver to our sick, and remember that healthy nourishment is a priority.

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I have digressed. Diverting my whinge into NHS meals. So, I was discharged from London, only to be readmitted a few days later nearer home. This time I barely bothered telling friends and family, I was getting bored of it, so I figured they would be too. It took longer than I would have liked to get my strength back, something which frustrates me like mad. Life is short and precious and I want to be up and running ASAP, not hobbling around all weak and feeble. At the end of November, I undertook my first major outing in a month and attended a charity function at the House of Commons. And following that my health seemed to find balance again and I enjoyed two whole weeks of near normal activity, slowly getting back to full strength. Walking in the woods, planning for Christmas and writing. And then my back went. I was under the bed at the time. On my belly waving my new sooper dooper, suck-up-everything-in sight- including-the-cats lightweight (Ha!) vacuum at some sinister and unidentifiable nasties that had been there since I don’t know when.

I had to wait until my husband was free to come and pull me out by my legs, at which point I discovered that I couldn’t stand, roll, sit, or really walk. I was completely buggered. Now I figured that this was an old war wound, one I’ve had almost thirty years since first becoming pregnant. Every now and then it flares up and I am reduced to crawling around, clinging to walls, and leaning on shopping trollies and umbrellas. Ordinarily I’d have dashed off to the nearest chiro/osteo practitioner and said “get me upright!” As I’d had to one panto recently with three shows to perform and no understudy (to give him his due, he succeeded.) But now, because the cancer has caused some fractures and weaknesses in my bones and spine, it is unlikely that many will touch me. Nor would I want them to. So it was a matter of fistfuls of paracetomol and waiting it out. When illness reduces you to being “cared for”, to being dependent, to being reliant, it fundamentally changes how you see yourself. What’s more it fundamentally changes how your partner or loved one sees you too. The nature of the relationship shifts, tilts out of balance. Your loss of power is reflected in the eyes of the one who is left to “care”; where I used to see partnership and mutuality I can now see worry, fear, exhaustion and helplessness. It is so important to hold onto memories of how it used to be and hold tight to the belief that it will be so again. This is one of my BIG fed ups. I am fed up of needing to be looked after, of not being able to fend for myself. I don’t want to lose myself to a new incarnation where I no longer have the strength or will to be who I want to be, to be who I am.

Sometimes it feels like you are trapped in a cage. If only you could find the door and step out to freedom and life as it was before. If only you could wake from the nightmare: dawn breaks and you realise that it was all just a bad dream. And life is wonderfully normal again. Yes, if only.

Early January and finally, after a Christmas where I did, by necessity absolutely nothing, my back was finally on the mend I was back to tentatively trotting about the woods and driving a little. Then came the incident of tripping over the washing. Apart from labour, I can honestly say that I have never felt pain like it. So once again, there I was, as helpless as a baby. X rays and MRIs mercifully showed that I hadn’t suffered a vertebral collapse which the team were concerned about what with everything else that is going on internally. Now some of you may be thinking that its great to be waited on hand and foot, I haven’t cooked a meal in months, or done the washing, or done any housework, or shopped. I’ve barely got off my backside to get myself a glass of water. But it isn’t. And if it wasn’t for Jez I’d have probably starved by now or been eaten by the cats.

I was back in hospital again for a few days the other week. Ridiculous temperature. 100 degrees, for about ten days. They never did really discover why. Me more fed up.

Jez has been making herbal compresses for my back out of the comfrey plant. He rubs it along my spine then trusses me up in clingfilm to marinade for a few hours. Amazingly it has been helping. So at last I had the temerity to think that a corner was being turned, a vision of normality was peeking over the horizon and I could banish the Me that was feeling sorry for herself; the Me that couldn’t see the point in anything; the Me that required “caring for”, the Me that was well and truly pi**ed off and fed up with it all. Oh but that would be far too rosy. How about a scenario where they discover a little abnormality concerning my heart and want to send me for further tests. Like it or not that is the hand dealt me this week. So treatment is on hold while the cause is determined. My poor beautiful tender heart. Where it all started back in 2016 when I had a cardiac tamponade. (Fluid in the pericardial lining prevents the heart from being able to work)

My heart, which has been broken both literally and metaphorically, how I send you love and healing. How well you are doing, and how grateful I am for each blessed beat. Thank you.

It is OK to feel fed I up. Though whether it is completely wise to express it quite so publically is another matter. But I maintain that this blog is about my musings, a desire to make sense of it all, and in many ways to reach out so that I am not alone on this journey, and maybe, I hope, neither are you. I look all around me to find inspiration: in nature, in books, TV, Film, other people, art, and one thing that always lifts me is you. If, by sharing a fragment of my story it helps just one person, it can completely transform my darkest mood. I see value and purpose and meaning all around. Although private by nature, I set myself the challenge of writing the blog to open myself to taking risks and living life a little differently than I previously had done. It is an unexpectedly cathartic process. But if there is one thing that it has taught me above all else is that we are not alone, and together we lift each other up.

Meanwhile, I do not accept this is my “new normal”. I look forward to better days, and looking Jez in the eye and seeing my husband, and seeing him looking back at his wife.

50 Comments Add yours

  1. Anthony Gibson says:

    Hi Leah, sending you love and light xx.

    I recall the time I became ‘cared for’ whilst battling off stage 4 lymphoma and I loathed it. Wanting to leave the house….but not alone…”what happens if you trip up?”, going to the shops……but not without a face mask…..”what happens if you catch something?” wanting to go for a long walk…..but not too far….”what happens if you need the loo?…you know you usually do”. Fed up about just wanting to feel normal again.

    The independence we once had is gradually siphoned away by some invisible beast and leaves us feeling a bit like a child too young to decide for ourselves. But, when the better days came along, I grabbed my bag, headed on out and went wherever I wanted. Sod the face mask and the crowds I said. I’m getting some fresh air! I’ve never tripped up since I drank too much Cider when I was 16 so there’s no need to worry. And if I need the loo, I can run, quite fast when I need to……and with my legs crossed.

    Please don’t let these frustrations stop you from being you, enjoying your days and living your life. It’s too precious.

    Keep being you, Leah. You’re amazing. x

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    1. I hear you, thank you and good good luck to you x

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  2. Sue Vincent says:

    Both my partner and my son could have written this… the lack of control over the most basic areas of your life gets to you as much as the cause of the problem. My partner bottled all this up for a long time, largely out of concern for me and because of that dratted stiff-upper-lip thing. It was only when he finally let it all out and we both understood where he was coming from that we did get normality back in our relationship. And that made all the difference… to both of us. x

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    1. We are what we are, and sometimes that needs to change for everyone’s sake. Glad you got there xx

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  3. Susie says:

    It was wonderful to hear from you again. I am sorry there has been so much of the tough and trying- it reminded me of the frustrations and feelings I had when a month bed-ridden from a cold virus “healthy people don’t notice or are sick 1-2 days at most “ and in and out ER. Mood is indeed a real and palpable thing then, challenging us with its honesty and pleas. Thank you again for sharing and may your circumstances or even just your mood slip into the sublime and joyful as often as possible. As an actress you are getting a masterclass and opportunity at living the variety of life- not sure if that is a comfort or feels glib, but I will use that myself!

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  4. Maria Szczypinska says:

    OHHH my love your eloquent honesty re it is as it is ,is a confirmation that however beautiful life may be it is fleeting and in the final analysis is a learning curve for what purpose I am sad to say I don,t know …my belief is that life sucks and we endeavour to rise above it and dearest Leah my heart salutes you and prays that you will realize lots of energy to go forward and continue your journey with determination and love and peace ….tons of love and good energy sweetheart ..you inspire me XXXXXXXXXXXXXXX

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  5. Val says:

    Hi Ali. Keeping you in my thoughts. The girls keep me up to date. Stay strong but I know it’s not easy. Lots of love. Xxxx
    PS I also read “All the light ….” loved it and bought it for Holly

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    1. Bless you val thank you xxx

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  6. Jenny Lewton says:

    Just wanted to say you’re an inspiration.its amazing what words can do. I can tell you’re strong like my Mum.when I think of my Mum,I think of happiness,realist and a fighter,strong mind,and she was my inspiration. Those simple things of walking and breathing. I think about you on your journey and I wish you well xxxx

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  7. Rosemary Freeman says:

    As usual so inspirational and humbling to read this Ali and makes me thankful to be fit and healthy( if creaking a bit) it is often so difficult to accept the help from others and our relationships with them are then perceived differently but being you I’m sure that you’ll keep fighting, smiling and being positive.
    Much love xx

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    1. Love to you rosemary xx

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  8. Thanks for your sharing Ali…. such heartfelt expression of the challenges you have been facing. I hear you when you speak of the deep desire to be “normal” again. Whilst not life-threatening, i recall many times over the years with ME how i just wanted to find the energy to watch a tv programme without a persistent head ache or brain fog, to walk around the supermarket without falling asleep on the way home through total exhaustion to wake in the morning with no intense pain or discomfort. I remember the tears flowing as i told my husband just how desperate i felt.

    Then my hopes slowly but surely turned into reality, my body began to find its way back towards some sense of balance and life gently seeped back into my being. This healing journey continues each and every day, sometimes in slow steps and sometimes in huge leaps.

    I send you much love and hold you in my heart as you take small steps and giant leaps back to health and vitality. Dawn xxxx ps. Don’t forget you are both still welcome to stay anytime… Devon air works miracles xxxx

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    1. Ah thank you dawn, soon I hope xxx

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  9. Helena says:

    Thank you. Your words touch my heart. X

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  10. Paula Rosson says:

    HI Ali, I love reading your blogs, they inspire so many people, and your realism of the disease. I too am tired of being tired, tired of being ‘sick’. Stay strong lovely lady and thank you for being honest and sharing your journey with us xxx

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  11. Keith says:

    Whilst we may all like to portray an eternally optimistic view of life, the reality is often different. Is it wise for you to express your negative feelings? Absolutely, just so long as it feels right to you, and it’s far better than keeping them bottled up. You know that you have the full support of many that read your blog, and I’m sure that they fully appreciate hearing the truth from you (or at least as much as you’re willing to share), rather than reading a sugar coated version.

    I started my own blog some time ago, after an emotional day, when I had told my daughter of my cancer diagnosis. I just needed to express my feelings, and as you state, it was very cathartic. In hindsight, it was also a bit embarrassing putting my emotions out there for anyone to read. Regardless, I decided to leave it and have added further entries about my journey, in the hope that they may help or inform someone else. Likewise, I’m sure your blog helps many others on a similar journey.

    Here’s to many more sunny days ahead, for all of us!

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  12. Petri Palmulaakso says:

    Just starting by saying that I’ve always been a big fan of yours, I started to follow Emmerdale when I was like 3-4th grade and remember growing up together with all of u, the emmerdale cast..and now im 34 😉 and i’m really sorry to hear about ur cancer and plz just try to be strong and fight till the last breath…my mom was diagnoses with breast cancer last summer and she’s been going through all the treatments and operations and never could any of us believe how hard it can be…they are still on and we are praying that she will come out as a winner…but reading ur thoughts etc is helping me to possibly understand a bit better what she is going through and thank you for that .. 🤩 all the best to u from Finland ❤️

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    1. Love you and your mother petri, blessings x

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  13. Toni says:

    Dear Leah,
    Having had cancer i totally get what your saying .
    Here is wishing you lots of good days ahead and sending you lots of love and best wishes x

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  14. Geraldine says:

    Leah, being ‘real ‘ with ur feelings is healing, not wrong. Read great book by Tina Gilbertson, ‘constructive wallowing ‘. It talks of simply feeling all our feeling, also the painful ones, so as to heal them. Good wishes to u. Ger x

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  15. Reg says:

    Take honey natures way to help

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  16. David says:

    I’m so sorry about what you’re going through, please always consider alternative treatments such as phage therapy or immunotherapy!

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  17. S J says:

    Hi Leah, your words here are inspiring and I hope and pray that you have many ‘normal’ days to come. On which subject I digress a little and I hope you will forgive me but I wanted to tell you a little story.
    I grew up aware that I was gay yet hating myself because every depiction of gay women in our society seemed to be negative, and coming from a small town in a rural area it was never going to be an easy journey. Then a few things changed and – as so often is the case – soap operas were instrumental in this shift. Emmerdale was one of the first programmes on primetime UK television to show a positive depiction of a lesbian character in Zoe Tate who basically lived and loved alongside a multitude of other diverse characters. Along with Brookside and a few very brave women in the public eye who came out and stuck their colours to the mast this helped to change public perception and increase acceptance of lesbians. I found role models on screen I could identify with, people who made me feel less isolated and more normal. As a young actress as you would have been at that time I appreciate that it must have been risky to stay with a character that could easily have been villified but it was so very important that you had the courage to do so. So I really wanted to say thank you because you and the writers and everyone involved in these storylines basically gave me a lifeline. I send much love to you and Jez and your family and the hope for much many more stories from your life to come x

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  18. Array says:

    I was diagnosed with stage 4 bowel cancer the day you published your latest blog – it was discovered totally unexpectedly while being investigated for something else – you absolutely describe my feelings – was I better not to find out – it is very raw for me at the moment as I am unable to have surgery and am waiting too see if an oncologist can help me “buy” some time. I am 59 and my son is 26 – I feel the same way as you do about your daughters and am just so sad I won’t be around to see him marry, have. children etc and,as parents do, I love him unconditionally.

    Like

    1. Thank you for your message, I empathise with you I really do. I know just how shocking such a discovery can be. But the biggest thing I learned was not to buy into other people’s fear. It’s hard. But remember, you may have cancer, but right now, you and I we are alive. And I chose to focus on that rather than the opposite. Also, if you feel it might be appropriate go and get a second opinion. It changed everything for me. Not the diagnosis, but I went from no options to discovering that there were still one or two things that might be helpful, which my original doctor had denied. Hospitals do vary in the treatment that they offer you, and it can make a huge difference to your length and quality of life. It certainly has in my case. And, lastly, as contrary and mad as it sounds, I don’t tell myself that I won’t be around to see this or that. That I won’t make it to sixty or seventy. Or become a grandma. I do the opposite. I tell myself that I WILL. After all what can it hurt. And I can but try. And it makes a difficult path , foe me, much sweeter. I wish you many blessings x

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