Invitation to a Christening – and thereafter

From January 2014 to April 2015

Cecilia’s baptism on January 12. Great family party, before our daughter Penny-Belle and family move to Stockholm.

Next day I am feeling very unwell. Penny-Belle insists on me seeing her GP in Cookham Dean. Her Doctor is excellent, very solicitous, and says, ‘I would arrange for a scan for you here if you were staying but as you’re going home to Cumbria you should see your own GP as soon as possible.’ January 20 I see Peter H. who says he is baffled. He refers me to a specialist. January 30 I see a gastroenterologist who discusses what my problem might be. I have a scan on February the 13th. Valentine’s Day my husband, Bob and I see the consultant. After a colonoscopy a nurse sympathetically puts her arm around me. I know. The Consultant tells me in the most sensitive way that I have Colon Cancer. This comes as a terrible shock. The big C word! How could I have it? My regular NHS Bowel Screening Tests had always been returned ‘Normal’. I always kept fit, had a charmed life, had my babies at home and only been in hospital to visit others. What next? Couldn’t even say the word. The specialist recommends a surgeon at Lancaster NHS Royal Infirmary. We meet Tom R. He is outgoing and instills confidence. He explains to us what will happen. We fix a date for surgery. He recommends open surgery which makes it more possible for him to get to the problem – my tumor.

How to tell the children? Other family? Friends? We tell the children first. They are wonderfully supportive – want to know how they can help. It’s a relief to have to have told them. We decide to let others know by email just a couple of days before I go into hospital. Now I go into practical mode. I have a wonderful husband, but he has rarely been on his own at home. Serious in-service training needed for things like washing clothes, using the dishwasher et cetera. He’s fine about food shopping and cooking – in fact he is an excellent cook. He follows me round with a notebook and pencil – this is his way – he’s good with words.

Suddenly it’s time for my operation. I’m just on a conveyor belt, just getting on with it. Our eldest son Tristan has a house nearby and we decide to stay there the night before my op. He cooks a splendid leg of lamb for a late lunch which we all enjoy before I am not allowed to eat any more! I give myself the necessary injection so that I can arrive early at the hospital next morning and they can get straight on with my operation.

Saint Patrick’s day – 17th March. We arrive at 8 a.m. and go straight to the reception area. I travel light with a few things in a shopping bag – my iPad Air, two new smart nightshirts (I don’t do nightwear), a pair of slippers (I don’t do these either), wash bag, scent and lipstick. A lively nurse preps me and before I know it I am being called to go. Saying goodbye to Bob and Tristan is not easy and probably the only time I feel tearful.

The anaesthetist, a woman, is one of those people you instinctively trust. I elect to have an epidural. The next thing I know is waking up in a small side room and all apparently has gone well. Tristan and Bob are there. I had made it. I am joined up to lots of equipment, which I soon get used to. My new nightwear is redundant – it had to be sacrificed to make way for the multiplicity of tubes, cannulas and electrics. I settled in – for two days. Then I am trollied to a ward with eight beds. I had been at a Primary School and a Girls’ Grammar School in Oxford – I was not accustomed to dormitory living. However I have an excellent neighbour, Chris, a Cambridge educated scientist on one side, on the other side a good view of the corridor and main desk area. With so much going on there is no time to think about myself and I fall into the routine of the Hospital Ward. Across the bed from me is Brenda. She holds court to a large extended family and friends visiting every evening. Each afternoon her husband comes to see her and brings her a home made ham sandwich – which Brenda always saves for later. There is great consternation one day: Brenda’s Garibaldi biscuit tin is missing! There has been a new helper on the ward the previous day and perhaps she has not realised how attached Brenda is to her tin. I don’t believe she was ever reunited with it.

Meanwhile I have become used to the ward rounds of doctors and nurses, physiotherapists, the newspaper and sweets trolley, the on and off of tight white compression stockings which are near impossible to put on or take off. I witness countless acts of kindness. A passing nurse compliments me on ‘beautifully toned arms’. (A plus for wearing armless hospital attire.) One helper taking off my stockings asks if I would like a leg massage. You bet! This is heavenly and finished off with a foot bathe. As soon as I can, I escape regularly with Bob to the cafe for toasted sandwiches and all kinds of goodies. Bob tells me how well Tristan is looking after him – distracting him with the ‘problems’ of preparing Morecambe bay shrimps, langoustines and fresh lobster. And Bob has not yet had to try out his skills with the dishwasher and the tumble drier.

When can I go home? ‘When your bowels have woken up.’ That takes some time. Bob’s morning call now always begins with the big question: ‘Has it happened yet?’ One night unable to sleep I wander into the desk area which is dimly lit. There is a very sympatico nurse on duty who is busy all night up and down seeing to people’s needs. She wonders if she could do anything for me? I say a hot cup of herbal tea with honey would be great. She makes me one and lo and behold it isn’t long before everything is miraculously working! I can go home. Just before that I have to have a blood test. I had seen a junior doctor busy all night long. He comes to see me and proves to be quite a wag. Having proffered my arm, by now rather bruised, he takes a blood sample, holds it up to the light and says, ‘That looks fine to me’. I am all clear for my break out.

A few hours later I am being driven by Tristan and Bob back home. The hills of the Lake District have never looked so beautiful. I only realise then that I have been ‘inside’ for 10 days. All continues well. Penny-Belle flies home from Sweden to see us. We have a succession of visitors bearing cakes, newly laid eggs in baskets, orchids and a variety of goodies. We have several impromptu parties on the terrace – the weather is lovely for many weeks. Friends invite us for celebratory meals. I am guest of honour! Bob quips that ‘Penny used to use a colon. Now she uses a semi-colon.’ We laugh a lot. We are almost back to normal. I return to swimming daily, walking – not too high up – day by day gaining strength.

Soon it’s time for my follow-up visit to meet my surgeon again. I need to consider having chemotherapy. Tom R suggests having this at the NHS Cumberland Infirmary which is nearer to home and in the case of any emergency would be more accessible than Lancaster. This is fixed up and I meet the Oncologist John N. I like him. He takes me through three possible options. Option one – no further treatment. Option two – Chemotherapy treatment in tablet form at home, interspersed with regular visits to the Oncology Department. Option three – what he termed ‘gold standard’ – Chemotherapy at home plus regular intravenous treatment at the Hospital. I opt for Chemotherapy in tablet form. I can then be monitored and adjustments made if necessary. I am warned of possible side effects – e.g. if my feet are affected badly I should not hesitate to call the hospital when I would be advised whether or not to pause the treatment. The Consultant did not want a repeat of his experience of a ‘brave’ patient who had stuck it out (‘I’ll take these if they kill me.’) and who had to crawl into his surgery on his hands and knees. I go home with a bag of poison. I am rather horrified how toxic the tablets are. However, I prepare to take them orally and make sure I am wearing rubber gloves to handle them, get them to my mouth and swallow in one.

A new routine begins – Driving again and making more i-Pad Art. We celebrate my Birthday and grandson Jack’s 18th birthday at L’Enclume Cartmel, on a glorious sunny day in June. We relish a long, tasting lunch. I am wearing my signature red dancing shoes – it feels good to dress up again. It’s only when we come to leave across the cobbles that I realise how sore my feet are. Need to get my chemo dose reduced.

We have a family wedding in mid July – this will be the first time we have been away since my op. A splendid occasion – Stanislav marrying Ivana. Stan is a doctor who trained at King’s College London. The party is teeming with doctors – the joke is if you are going to be ill tonight’s the night – there are lots of specialists around. There’s a string quartet, lovely ceremony, great feast – live band – so Bob and I dance the night away and fall into bed. Next day proceed South, staying with Hal, Kim and family, meeting up with Penny-Belle, Willow and Cecilia for lunch in their old village of Cookham Dean. Then on to London particularly to visit the Matisse exhibition at the Tate. A wonderful show. Bob, who is looking for inspiration for the words for a new Christmas Carol is taken by Matisse’s Christmas Eve window and decides he will use this for the basis of his composition. Then lunch at one of our favourite bistros, Poule au Pot – the weather is so lovely we eat outside and imagine we are in France. We pencil in dates for our visit to Stockholm.

On Saturday, 19 July I decide to spend several hours drawing at the V&A museum. I take my Apple Air with me and set about finding objects that interest me.
It’s such a glorious day I go to the courtyard for a cold drink – home-made lemonade. It tastes good. However a while later I have a tummy ache. I continue drawing but have to cut my visit short as my ache gets worse. Return to Bob in Pimlico with my worrying news.

Things get worse and I feel ghastly. Due to meet Tristan and Laura on Monday to take them out for dinner – have to cancel as by now I am going to Saint Thomas’ Hospital A and E department to find out what’s wrong with me. Inconclusive. Our son Hal, who lives in Hertfordshire, says ‘come and stay with us and we’ll sort you out.’ This is what we do. Next day Hal takes me to his local A&E Department. They are excellent. While it was most unfortunate that a projectile vomit landed a direct hit on the doctor examining me, it catapulted everyone into action. They are obviously worried about my condition and prep me for an ambulance drive to the main hospital – the NHS Lister in Stevenage.

Found a bed immediately and made comfortable. Next day meet Consultant Malcolm A. whom I like and trust. He explains that they will see if what is obviously a blockage can be sorted. Might it be flushed out? I am sent for a scan which reveals multiple adhesions. It looks as though I will have to have further surgery. Sunday the surgeon comes to tell me that they will be operating that afternoon. I phone Bob to ask him to come in earlier as I don’t wish to sign the consent form until he has also checked it over. He arrives with Hal and Tristan and they meet Malcolm A. who explains what will happen. My very neat cut from my first operation– which was expertly glued together – will unfortunately have to come apart again. There you go. All over again – another epidural and anaesthetic and I know nothing else until I wake up in a new ward attached as previously to lots of equipment. I have been here before. All has apparently gone well. So a new bubble begins. The nurses are excellent and I get used to my surgeon circulating with a group of trainee doctors. I’m in the Acute Surgical Care Unit – there are just four beds. To my left is the busy hub of floor eight. There’s so much going on and I become fascinated. A nutritionist arrives, a charming woman who spends time talking to me and then what seems hours pouring over my records so a special brew can be mixed up for me to take intravenously. Words like electrolytes are new to me and I am mightily impressed that my bag of special brew is delivered daily. Sheila, my companion opposite, keeps an eye out for me and vice versa. Her husband is also called Bob and he often arrives together with my Bob. There is a camaraderie here which is very touching.

Bob, Tristan, Hal, Kim and Laura visit and bring me goodies. Life goes on and I can see this wonderful blue sky from my bed. I love the dawn coming – and look forward to my first cup of tea of the day. (I never liked tea much before.) Nine days after my op everything begins to work again. Hurrah! Now I can eat. Malcolm A says I need a soft diet – things like scrambled egg will be good for me. However that is not on the menu of the breakfast trolley but my consultant says it can be arranged. Sure enough, the next day I receive delicious scrambled egg made especially for me. Food never tasted so good. The physiotherapists have been busy with me and I am mobile now. Unhooked from my monitor I can walk further and further down the corridor and manage my own shower. There’s plenty of humour and good naturedness around on the ward. It’s time for my clips to come off – so far so good – however one of the clips has left a small hole which will need packing. Packing in this context is new to me. I only know about packing the dishwasher and packing suitcases. Perhaps I will be going home soon! Unfortunately there is a new problem.

I start waking up in the middle of the night with my monitor going mad and my heart rate spiking. Each time this happens a doctor from somewhere in the hospital is called to see me. I feel bad about this – but one of the doctors explains to me that this is nothing to do with my lifestyle or is anything I have control over. My consultant is very concerned about this issue. He will not agree to my being discharged until the heart problem is sorted. It is now nineteen days since I arrived here.

I am moved to the brand-new cardiology wing of the hospital. I am given a fancy new room of my own – but it feels rather lonely. I’m not here for long. The very next morning, early, I am visited by what seems a great troupe of people led by a sassy Irish woman who is clearly the consultant. I witness her running a teaching session on my condition and asking the trainee doctors what they would do about me. After a lively debate to and fro she decides on a course of action. My racing heart has been precipitated by my recent operation and I have apparently developed atrial fibrillation, which will need treating. I might not suffer from it again but it is too risky not to do something about it. She suggests Warfarin or a new pill, Rivaroxaban. I decide to try Rivaroxaban. This is all a new world to me so I might as well run with it. I can now go home. Bob and Hal come to collect me and take me back to Great Barn. This is Hal and Kim’s home where they have developed a wonderful garden. The weather is lovely and it feels as though I have reached Paradise. We enjoy many meals outside. Rose and Harry keep us entertained. Each day I walk a little further. The local GP clinic sees to the dressing and I am looked after again by some splendid sympatico nurses. After a week at Great Barn it is time to make the journey home to Cumbria. Tristan will drive us.

Home! It is great to be back in Newlands. We have been away a long time. The packing and dressing continues in our local Mary Hewetson Cottage Hospital in Keswick. The care is excellent and again I meet some more great nurses. We pick up our lives again.

Time to restart the chemo regime – this time I know the go of it. Family and friends continue to spoil us with visits and meals. We settle into a good routine – walks, lunches out, finally swimming again for me once my wound is healed. Life is sweet. My iPad Air comes everywhere with me – I make drawing notes, take photos, work on compositions. How Picasso and Matisse would have loved an iPad. By mid December I complete my chemo regime – hurrah! Hal has made a recording of Dreams of Longing –a Song Cycle using Bob’s verses – and we launch it just before Christmas.

Bob and I share the reading of a lesson at Newlands Church. We celebrate at home with family arriving – they do all the shopping, cooking and washing up. We have great fun together. Hal sings on Christmas Day at Grange Church in Borrowdale.

Before too long it is 2015 and I start painting again in my Studio. There is nothing like having looked over the edge to make you appreciate life. I am well. A letter arrives from Royal Lancaster Infirmary inviting me for a scan almost a year to the day since I had my first operation there. Having not been worried I am suddenly trepidatious about the outcome. I arrive for my scan on the appointed day – the radiologist doesn’t say anything. A couple of days later Tom R telephones to say that I am in the clear. We celebrate and I start planning for my next one person show….. We book flights for Stockholm… Hooray!