Read and Listen : Our guest Linda shares her story

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Linda is truly inspirational although diagnosed terminally ill she continues to try to find ways of helping others. After our chat in the studio Linda told me about her blog and asked whether it might be useful to anyone going through something similar .Linda has generously contributed the   following  

Dear Reader

I have to stress that what follows is my story and may not be the same for you. My hope is that whatever you take from this will help you in your journey.

Linda x 

 

My losses

The delicate silver strands lay across my palm. The sunlight catches them for a moment and there is a sparkle. Is there life still there or is it the farewell gesture that signifies it’s time to leave? A slight breeze catches these strands of hair and they are gone. I muse on their destination; perhaps a bird will interweave a strand into its nest, unaware that this was once part of a live, human being; maybe it will be it will be caught in the upper branches of a tree lying in wait for autumn, to join with its dewy, glistening spider’s webs. Or maybe the strands just keep floating upwards to this unknown space that none of us will know until death.

Do I feel sad at losing my hair? Yes, of course there is a part of me that would prefer this not to happen. I have, along with Alan, my hairdresser spent many years getting it to the shape ,length, colour and style that we both liked and were comfortable with. It was a part of me. It was my presentation to the world of who I am. Today, Alan is going to cut away what remains. We have a blank canvas. So yes, it is a loss. I could say that the introduction of a wig is a soulless thing that can never truly be a part of me and is therefore bound by rejection, or I could embrace it. I have chosen the latter. Never before in my life have I had this opportunity to do whatever I wanted with my hair. I’m grabbing it with excitement and anticipation! I can show to the world whatever I want to through my new hair. I can fit my mood and examine what it is I want to express!

Today I have two wigs, quite different, and yet neither of them quite as quirky as I had hoped. That doesn’t matter – I may get another, and another. That’s the plus side of a life limiting illness – people allow you to do the things that make you happy. I think it helps them too to feel that, in what is a dire situation, something positive can happen.

Peter and I had gone into Watford to do some shopping. We came out of Trewin’s into the main Harlequin Centre to be confronted by a wig stall. Peter felt I had been getting anxious about acquiring a wig before my hair started to fall out. I’m not sure who was the anxious one here, but it’s of no consequence. “try one” he said excitedly. “what here in the middle of the shopping centre? Not likely!” Not easily put off, Peter approached the sales girl and the next thing I knew she was asking me which one I wanted to try. “Oh, that one on the end,” I replied, hoping to get this over and done with as soon as possible. Then my feelings changed. Here was a very sweet, empathetic girl who clearly understood the delicacy of the situation and wanted to do what she could to help. She had amazingly long eyelashes, must have been false, and for a second I wondered how I would manage the loss of my eye lashes if they fell out. In a moment the wig was on my head, Peter’s face lit up, the sales girl looked on with satisfaction, and a passer by said “Oh that really suits you. It looks lovely!” Well it was sold there and then. This was my venture into ‘wigland’. I couldn’t wait to get home and try it on. What a transformation! Will anyone recognise me? Does it matter if they don’t. Just think what I could get away with by being anonymous. I felt like an actor having donned a costume and assumed a new role in a play but not completely transformed; I was still me underneath.

Then it was the turn of the NHS to show me what they could supply. The tone of the appointment letter led me to believe that this was going to be a short, sharp experience and that I had best go well prepared. I was right. Lisa only had half an hour to show me pictures and help me to choose two possibilities, a safe one and something a bit different. No time to waste in small talk then, straight down to business. This was new to me. Until this moment all my consultations with everyone at Mount Vernon had been unrushed and I felt I was being given all the time in the world to hear and understand what they were telling me and to ask questions if I need clarification. Lisa was experienced in her role and guided me well, even though there was nothing to try on and the glamorous models demonstrating in the pictures bore no resemblance to a nervous and anxious patient.

Yesterday, accompanied by my dear friend and self-appointed style guru, Sue, I went to pick one up. The NHS allows you to have one for free. Another moment for consideration of just how much money has been spent on me so far by the NHS to keep me alive and functioning as well as possible. The word Cancer still carries a heavy weight in comparison with other illnesses such as end stage heart failure and fractured neck of femur in the older person. Looking at it objectively, is this balance right? The debate will continue long after me, I’m sure.

Thankfully there was no contest between my two chosen wigs. Sue confirmed that the safe one looked good. The other just accentuated my double chin and slightly swollen face caused by the steroids. I wore it when I got home and introduced the ‘new me’ to Peter and Nick, when he came round later in the evening. So here begins the next part of my journey

 Friends and relatives

When I was first diagnosed some 35 years ago, I wanted to scream and shout and tell everyone just how unfair this was. I had two small children and a working husband. How would they manage without me? I thought all my friends would rally round and support us and indeed many did. I will never forget the kindness of the school caretaker, Margaret, who kept bringing us meals and offering to do my cleaning. The hardest thing was coping with those who turned their backs on us. My father couldn’t wait to get away from me, back to his committee meetings and rotary business. He just didn’t want to know and this hurt and angered me. Our two close friends, with whom we had walked many long distance paths, sharing intimate thoughts and feelings, suddenly didn’t want to know us. Another close friend would change the subject whenever I needed to talk about the cancer. I tried to get my head round this. I was about to lose my life. I couldn’t bear the thought of losing these people as well who had meant so much to me. Then I tried looking at it from their point of view. Perhaps they were frightened of the BIG C. Maybe they thought they might “catch it” from me. Perhaps death was something they had not contemplated and certainly were not ready to explore at this time. Maybe the emotions and feelings brought up by this news were too much for them to bear. Certainly I couldn’t get it right for all of these people. My relationship with my father never improved. Our two walking companions, although living only a few hundred yards away, could have disappeared from the face of the earth. I did however learn how to be with people, who for whatever reason, just couldn’t cope with my illness, and be with them on their terms. This was when I learnt the importance of positivity and humour.

 

Loss of independence

I have now had secondary cancer for four years. I am truly amazed to still be here. Much of this is due to the excellent care I have received from my doctors. This part of my journey has been testing. I have always been a very active person, willing to give anything a go and really not able to sit still doing nothing for more than a few moments. This is all changing and I have to adjust to the losses I’m experiencing. I had to give up my job at the Hospice before I was ready to go, which meant loss of colleagues, of volunteers, and daily support within the department. I had to adjust from being a professional to a patient. I used to keep the house looking clean and tidy. Now I can only do dusting periodically. (Some would say this was a blessing!) I can only walk about half a mile before the breathlessness takes over. I certainly cant walk up the slightest incline and hills are a definite no. My eyes swell up, particularly in the mornings which affects my vision so reading is difficult and I have to be particularly careful when driving. I cant swim anymore, or play active games with the grandchildren. I haven’t been up to London for ages to a museum or a gallery or to see a show. I can no longer sing as well as I could – I run out of breath before the end of the line! I come to a full stop half way through cooking a meal. I can’t entertain people as I used to. And so much more. So I either grieve for these losses or I turn them into positives.

As far as the hospice is concerned I’m still in touch with many of my colleagues and volunteers. I help out at the monthly memorial services where I can still use my listening skills and hopefully my empathy. I have greater insight into these people’s difficulties now I’m a patient as well as a professional. I have taken on new interests such as restoring my dolls house and especially singing. I only dust the important things! I have a wonderful husband who has willing taken on some of the other chores. I choose the best places to walk as I cant go far. I take my car down the hill to the shops, park with my blue badge, do what I want to do and then drive back up the hill in the car. There are loads of sitting down games and activities I can do with the grandchildren. They seem to accept the situation so easily.

Loss of a future

I have never asked for my prognosis until now. I have the feeling I’m getting close to death now and something inside me just wanted to know. The registrar said he couldn’t say and he didn’t know how I might die. I felt this was very unsatisfactory until I told Alex. “Welcome to the club, Linda! Isn’t this how it is for all of us?”

I know that the only certainty is “now”. What is passed has gone forever and is now a memory. What is to come is unknown, for any of us. The Sanskrit words beside my bed are so poignant now. I have to make the best I can of “now” so that every yesterday is a pleasant memory and tomorrow is full of hope. This philosophy is so important to me, especially now. None of us know what will happen beyond this moment. For me, the future is difficult to imagine. There is a huge uncertainty about tomorrow. Peter and I stayed in a lovely B&B in South Wales. Self- contained flats had also been built as a part of this small complex. I found myself thinking, one of those would be so good for next year. The family could stay with us or camp as they were doing just around the corner. No sooner had the thought emerged when I was brought to a halt. I can’t make plans for next year. I might not be here. I could have drifted very easily into a period of depression, but what was the point? Here I was on holiday with my family this year. NOW!! I couldn’t afford to waste a moment considering what might or might not be. Having said this I know how important it is to have goals. But these must be more realistic. I look forward to things I have planned for tomorrow or next week or maybe even next month. I write them in my diary as just events that I or my family or friends have suggested. As the time gets nearer I can plan a little more for the event, and if it actually happens- wow-   what a bonus!! I believe we all have plans for the future and these plans feed our hope and optimism about how it will be. Just because my life is limited does not mean I can’t do this anymore. Hope is still very important to me. I hope I will wake up in the morning, and when I do, I’m grateful for another day.

 

Loss of my figure

Initially there was the mastectomy. I cant say the loss of my right breast was particularly difficult to come to terms with. The problems that this brought were challenging. I developed lymphoedema in my right arm which necessitated wearing a tight fitting sleeve, not doing any more strenuous gardening, and keeping insects and their bites at bay. If I overstepped the mark I was rewarded with a bout of cellulitis, something akin to a bad dose of flu which laid me low for up to six weeks at a time. Finding nice clothes that would disguise my sleeve and at the same time fit over my now permanently swollen arm was a real challenge and made clothes shopping a chore rather than a joy. During the chemo the steroids made my face swell up and I developed several double chins. I also put on weight and had to be careful what I wore. The radio therapy had to be very specifically aimed at an area on my back. After a few sessions I realised I had a neat brown square on my back. I joked with the radiologists that I didn’t reckon much to their tanning centre as they couldn’t do the whole of my back! The biggest challenge has been the most recent one. It is summer and everyone is wearing lovely low cut dresses with hardly any sleeves. I now have a raised purple area under the right side of my chin which cannot be disguised and looks awful. Finding summer clothes to cover this up is not easy.

 

 

 

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