28th May:Red Sky at Night

Red sky at night, shepherds delight..not in this case! Today we waken to heavy rain followed by drizzle followed by torrential downpours; now it is drizzling yet again. I have an appointment for a blood test at the surgery as a guinea pig for the trainee nurses. It saves me a trip to the hospital and helps them give their staff more experience. The nurse listens to my tales of the veins that clot and those that will yield blood yet try to squirm away from the needle. Thanks to my information she takes the blood in one. I congratulate her and tell her that some of the doctors make four unsuccessful attempts. She feels good.
The GP has referred me to the Warfarin clinic so I can ultimately come off the Clexane injections. We decline the walk into Bembridge that Trish and Gerry are doing. They want to see the exhibition at the Fine Arts studio. We arrange to meet them at the pub in |Wooton tonight to say our farewells. They leave for home in the morning while we set off for Dewsbury.

May 27th: visitors

Daniel arrives at around 1.30 so after lunch we stroll down to the beach hut . Daniel believes that my referring to it as our ‘villa’ is a slight exaggeration of the facts. We sit outside in the sun watching the world go by. We see a number of dogs each enjoying themselves on the beach. One is riding on a skidoo, ears perked up and looking round eagerly at all the sights and sounds of the sea. Then the owner picks it up and plonks it in the water. It quickly paddles ashore looking somewhat surprised and very wet. A few bystanders are slightly taken aback by the hairy contents of a pushchair; which turns out to be another canine enjoying a stroll along the sea front the lazy way.
Tuesday afternoon Gerry and Trish, Chris' sisters arrive. They are staying on a Floatel in Wooton Creek; a beautiful setting with swans, boats and a lovely atmosphere. We walk down to the beach hut though it isn't quite warm enough to sit outside. Then in the evening all five of us go to Michelangelo for a meal. These photos capture some of the moments including the rose coloured Ryde sunset.

25th May: Bank Holiday Weekend

Friday we go to the beach hut that we are renting this year. The previous owners left it in a bit of a state. They had left food in there and mice had got in. Following disinfection with bleach it now looks pristine and we look forward to getting the benefit on sunny days. There are chairs and a table and with the aid of camping gas we will be able to make tea.
We were invited to meet the Bembridge Wheeler cyclists in Puckpool for their coffee stop on Thursday morning and I decided to try the bike for the first time in ten weeks. It was a pleasure, though I went very slowly. It was nice to speak to folk and to feel part of a friendly group again instead of an isolate.
I thought I would try and drive when we got back, but when I went to open the car there was no response. It was dead. We tried replacing the battery in the key fob but that didn’t help. Naturally I reacted instinctively and burst into tears. It solved nothing and Chris’ suggestion to call out the breakdown people was much more constructive. The mechanic confirmed a very flat battery. The car hadn’t been driven for the best part of three months whilst I languished in the hospital. He suggested at least a 25 mile drive to recharge it. We went up to Cowes and along the sea front, then called in at Sainsbury for some groceries on the way back. It is so strange the way that I cope with the major traumas I have faced and yet these minor setbacks feel insurmountable.
Daniel is arriving from Dewsbury today. I am looking forward to seeing him after so long and hope that I am well enough to enjoy his stay and to go back with him for a few days towards the end of the week. The district nurse has told me how important it is to feel and act as normal as possible which helps the recovery. I am prepared to give it a go.

22nd May: The Next Hurdle

A nurse brings me my final hot drink just before 6am. Moaning Minnie is in full throttle by then. I lie in bed just waiting for 1pm. Even reading makes me feel nauseous since I am not allowed food. The porters arrive promptly and Dr H in Radiology goes through it all with me. He is not sure that it will work, but he plans to remove the T- tube and to try to reroute the other drain straight into my gut. They will then be able to ‘tap’ it on or off as necessary. I explain the pain that the drain under my rib has caused me since it was put in. He will try to re-position it. Unfortunately there is another 20 minutes to wait since the room is still being used. I suddenly feel sick again and reach for a sick bowl that is just within my grasp on the shelf. I retch for about 5 minutes. They give me an anti sickness injection and then I am taken into room 15. There they rip off the old dressing before giving me the sedative.. My sobs of pain alert them to this mistake, which they rectify very quickly. I am aware of the whole procedure which lasts about three hours, but the sleepiness usefully blocks out most of the discomfort. When I open my eyes again I am back on the ward, Chris is there (he has been waiting since 3pm) and Moaning Minnie has a very captive and stressed audience of nurses and patients. Later in the night one of the patients yells: “Shut up”. It works for at least half an hour!
I still am unsure what they have done to me and am unlikely to find out before the doctors do their rounds on Monday. The new drain bag is so full by morning that it looks ready to explode. I call the nurse, but she is one of those people who simply repeats the last word of every sentence you say:
ME: This bag needs emptying
NURSE: (with beaming smile) emptying
ME: It looks like it is about to explode
NURSE: (nodding and smiling) Explode
ME: Is there any reason why it should fill up so quickly?
NURSE: Quickly

I give up and wait until I speak to Prof P. He comes round to see me early Monday morning and explains what has been done. He tells me the outcome of the procedure is as good as they might have hoped and now the drain is tapped the bag can be removed. The drain will need flushing twice a day, which can be done at home (they will supply syringes). He tells me I can go home as soon as they sort out my medication. Wonderful. In about 8 weeks time they are planning to put a stent in to stop any further narrowing of the vein. It should be a straightforward procedure and I am hoping it won’t mean a longer spell in hospital.
Each time I have had visitors or seen neighbours and friends outside the hospital they have told me how much better I look than last time they saw me. Trouble is the last time they saw me they told me how good I looked. I am not quite sure what to make of this data. Either I am genuinely looking better which I know I’m not, or they are telling ‘porkies’ (for my readers across the Atlantic that is rhyming slang for a lie : Pork Pie = lie).
To those friends who have rallied round in my hours of need:
Thanks so much.
Friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly.

21st May: Southampton General - second stay

10.15am and we are due to get a lift from Brian who is taking us to the Cowes ferry terminal courtesy of Wessex cancer trust. There is no sign of him yet. Why do I have to experience so much stress from these minor issues when there are such major problems to face? It all seems too much sometimes. I just want things to go more smoothly. At 10.20 I ring the trust trying to quell my rising panic. The co-ordinator says that if he hasn't arrived by 10.30 I should call back and she will try to arrange alternative transport. He arrives finally at 10.25 - what a relief.

There is not long to wait for the Red Jet and we are in Southampton by 11.45. When we present ourselves in F6 I am greeted with: " Oh yes, we were expecting you". Phew! That's a first!

The nurse processes me quite quickly once she realises I had the embolisation at the end of February and am not in for another! She can see I am in pain and exhausted so arranges for me to lie on the trolley and sleep for a couple of hours. They eventually find a bed for me in F7. As I settle in I can hear three patients moaning and crying vociferously. This does not augur well. I am delighted when two out of the three are going home today, leaving just the one, whom I will refer to as Moaning Minnie.

Perhaps it was the journey or the stress, but after two weeks at home, when I was not at all nauseous I suddenly feel sick and vomit several times. Not a great start! No one has explained yet what this procedure involves in detail and I am feeling nervous. What will happen to me?

A doctor comes round about 8pm but knows nothing to do with my case; she is just there to prescribe drugs. Without her prescription I am not even allowed the regular Clexane injection.

Moaning Minnie cries all evening and almost drives the nurses to despair. She screams if they just touch her. I have asked the doc for a sleeping tablet so that I don't have to listen to the incessant incantations of: " Ohhhhhh I can't bear this any more. Please help me. Too much pain". Yet she refuses to take pain killers.

I am 'nil by mouth' from 6am tomorrow. I so wish someone would talk to me in detail about what to expect. The nurse assures me it will all be explained in radiology . I am due down there at 1pm. I hope that I will be returned to this ward. I go walkabout and discover TWO bathrooms, one with shower, PLUS a separate shower cubicle.
It won't be so bad here after all....

20th May: Hi there, I'm home

They have let me home today and it is great! Friday's procedure went as well as they could have hoped. In a few weeks I will have to go back to have a stent put in to stop the portal vein from narrowing; then with a bit of luck they can remove the external drain and things will settle down. In the short term I should be fine. In the longer term more extensive surgery may be necessary. I am not thinking that far ahead. Over the next few posts I will take you through my experiences of my second stay in Southampton Hospital.

14th May: Until I post again...

I really can’t fault my GP surgery and the district nurses. They have been 100% supportive. I get a call this morning from admin at Southampton . They want me at 9am on Thursday morning. I explain that I was told 1pm and that transport is already arranged. Kim says she will call me back. A couple of hours later she agrees that 1pm will be ok. I am to report to F6 on arrival. The procedure should take place on Friday. They haven't made it easy for me to re-arrange everything.
The district nurse comes round to take blood; it takes five attempts to get some. This doesn’t augur well for my next hospital stay. Thanks for all the encouraging comments on my blog and via email. I hope it won’t be too long before I can post again.

12th May: To be admitted or not to be admitted, that is the question....

Today I am determined to make some headway. I ring Jo who tells me the second letter was written by a different department because they weren’t sure they would have space for me on this Friday’s radiology list. I said it didn’t matter to me who wrote the letter but that it was out of order that I still don't know when I am due to be admitted.
Jo then said I could risk going in on Thursday but I could be sent home again. She also said that Prof P wanted a blood test today at St Mary’s in Newport. I told her that I was not able to get to the hospital as I can’t yet drive and I am not very mobile. She said: “ I don’t know what else I can do”.
Fortunately the District Nurse had arranged for my GP to do a home visit this morning. I explained to him the state I am in at the moment; unable to get around much and in pain still from the drain in my rib which is becoming increasingly sore. He said he will liaise with the hospital and see what he can do. He also organised for the nurse to come and take blood from me tomorrow. He called back later in the day to tell me that I am to go in on Thursday. There is no absolute guarantee they will do the procedure on Friday but once I am there they will do their best. Fortunately I am still emotionally strong enough to fight my corner. Now I can only wait until Thursday and see what happens. I won’t be able to write any blog from the hospital, but I will ask Daniel if he can at least update you as to what is happening.
I also had a message from Dr B’s secretary. They have passed on the form about my early retirement claim. Hopefully things will start moving now.

11th May: What is going on?

I receive a letter from Southampton General for an admission a week later than Jo led me to believe, with no indication as to how long I would be staying. “You will be staying for _______ days" states the form. Why bother?
I am upset that they can mess me around like this. I already had the transport sorted out with the Wessex Cancer trust. Now I haven’t a clue what is happening or when. All of this adds to my feelings of helplessness and hopelessness.

I am feeling very down about it all. I don’t feel better as each day goes by and know that I am entirely dependant on the hospital to regain some strength and health. Yet I feel so powerless. I have no confidence in the admin side and wonder what on earth to expect when I ring up next week. It is turning what should be a recuperative time at home into a nightmare. I don’t feel like talking on the phone. I am stressed and unhappy with the way things are turning out, but am limited in what I can do about it. Now it will have to wait until Monday before I can even telephone Jo and try to get to the bottom of it.

9th May: itchy twitchy skin

Today I receive the the proofs of my memoir , Fifty/50 so I can go through it and make any last minute changes. It is exciting to at last see how it will look in print. I am not disappointed. The dust jacket gives a flavour of the book:

In the summer of 2007, Lin Sheffrin was diagnosed with a cancer which quickly invaded her liver.
This is her brave story.

Oh, Grandma. Where are you now when I need you the most...?The doctors draw a curtain round the bed. Mr E's voice is solemn. We took out fifteen lymph nodes, six of which were cancerous".

It is hard to absorb the news...I don't know how this will affect me. I am scared...a month ago I was apparently fit and happy, working full time, swimming in the sea, cycling, and living life to the full. My world has been transformed. I have lost more than a stone in weight. I am confused, very sick, and totally powerless.

What is a proud mother and grandmother, epathtic counsellor, hard-working teacher and keen cyclist to do when she suffers a debilitating pain which is swiftly diagnosed as colon cancer...? She fights, with all her heart and soul. Giving up is never an option for Lin. After all, she's encountered other difficultties in life - loss, divorce, bereavement, humiliating situations at primary school, the unwelcome attention of an older male cousin - and she's survived them all.

Brimming with delightful period detail - treadle sewing machines, roll-up cigarettes and 'pea souper' fogs.

A social history of the East End of London in the 1950s and 1960s. Tragic, but ultimately heart-warming and full of hope.



I ring the hospital co-ordinator to find out when I am expected back. There are a few days reprieve and I am to go back next Thursday, for a procedure on Friday. They are going to remove the T Tube and decide from there what else to do. I wish I had more confidence in their ability to sort this out, but after so many failed attempts on their part I am feeling quite low. I long to be proved wrong. My skin itches really badly and it is difficult to keep it at bay. The only thing that seems to work is calamine lotion but that is messy and doesn’t last for more than a few minutes. The drain site is also leaking chronically which doesn’t help the itching. I call out the the district nurse yet again. She will come round this morning and take another look.

May 7th: Lorries and enemas

It is great to be home. I miss Marcello’s delightful Italian accent though. He is a doctor from Scicily. When I ask him for some lactilose, he asks me if I would like
‘A Henema’ ...cluck cluck… the mind boggles. I certainly don’t miss bloods being taken daily and the endless stream of painful canulas. At home I can walk a little with the drains concealed and it is a pleasure to get down to the sea and watch the silvery waves glistening in the sunlight. So therapeutic. All I could hear from the ward in Southampton were the massive delivery lorries that began around 6am and droned on throughout the day Sunday being the rare exception offering a little respite. Swapping that for the beating of swans wings and beautiful bird song is indeed a delight. How I long for the chance to swim once more but that dream is a while off into the future. In the meantime I have to live with the drains and this feeling of being slightly freakish. The district nurse comes every day to change the dressings. Not easy, but better than being trapped in a hospital ward for eight weeks.

6th May: Crazy Nights

At one point on the ward the nights became a little crazy and it felt like we were well and truly trapped in the funny farm. We were joined by an 83 yr old woman from Bangladesh who spoke not a word of English. She was diabetic but hardly ate anything. She preferred to delve around in her little cloth bag full of some sort of wacky backy chewing leaves which seemed to mellow her out. She slept all day but as the night crept in she would start shouting loudly in a language not one of us or the staff could understand. The lack of food then sent her into a hypo, and she was surrounded by doctors, and accompanying blazing lights . We knew that sleep for us would be out of the question. This pattern repeated itself for about four nights after which the rest of us were so sleep deprived we kept nodding off at every opportunity. Poor Sandy, who had moved into Eileen’s bed after she went home had huge black bags under her eyes. Sandy also had a view of Angela 's bed in the opposite corner; this woman cried constantly during the night and slept all day. Sandy saw her deliberately mix up jelly and ice cream to make it look as though she had been sick. We couldn’t believe anyone would do such a thing for attention; clearly she had some sort of mental health problem. It was a relief when she finally went home. Doris slept through it all. We envied her. What kept us going was our shared sense of humour. Gwen had moved into the bed next to me. She was a kind caring and gentle lady whose daughter Christine visited her devotedly on a daily basis. Christine got on well with everyone and helped all the patients when the opportunity arose. United by the night time stresses we all became quite close, though occupants of beds rarely stayed more than a week. Clearly I was the exception!

5th May: Bad news/Good news

Professor Primrose, the surgeon who did the liver resection, visits my bedside. “You are not going to like this; there is good news and bad.” “Go on” I encourage him with a wry smile. His sense of humour is difficult to resist, and for a surgeon he really is quite human! “tell me your worst."
“It is obvious you have a leak; far too much is draining into the bag. In the future you will probably need an op to sort it out but you aren’t ready yet and it may be several months down the line. In the meantime we need to find a way to redirect some more of the bile into your gut to help you absorb the goodness from your food so you get stronger.” The good news is that he believes it can all be sorted out but it will take time. He tells me they will attempt a procedure in radiology which should help. The aim is to insert another drain through the rib and straight into the liver. I am in extreme discomfort for a week following this procedure and it is not helped when Prof tells me that it hasn’t worked well enough. They have targeted the leak with another scan and some dye. This Friday they will try one more time using the opposite rib and removing the failed drain. I beg to be given something to make me sleepy this time so I am not so terrified and uncomfortable and the Prof promises that will happen. This time I am on more effective pain killers and the Friday passes in a haze of sleepiness. Unfortunately the new drain is once again taking too much fluid. This time they need me to recover for a week before they try once more to re-route the drain via my stomach. It’s how I manage a week’s leave from hospital. One of the nurses arranges ambulance transportation for me. I am to be taken all the way from the ward in Southampton to my front door in St Helens without having to take a step. With all these drains and so much discomfort it is a huge relief. Though I look upon next week’s procedure with dread in my heart knowing what I have to face in the way of pain it is nonetheless exquisite to be in my own home! I am enjoying every minute.

4th May: The Patients

As the longest resident in bed occupation I meet some great people on the ward. Doris is like a contented cat; she sleeps at least 15 hours a day and has no problems of being disturbed by noise and lights. She is easily confused.
She is given her inhalers. And daily her response is: “oooh I’ve never seen these before. Nobody told me about them. “ Similarly she has a catheter and is nonetheless constantly asking for a commode as she needs to wee. The nurses patiently explain that the catheter is there to drain her wee so she doesn’t have to worry. “ Well why didn’t anyone tell me? If they’d told me I would have known” Yet certain things Doris never forgets….her sore bottom, the fact that she is never hungry at mealtimes. She has a wicked sense of humour for a 76 year old and keeps our spirits up. For about a week we are then blessed with Eileen. Eileen has the language of a three year old, but can communicate with sign language and facial expression. She has the mental age of an eight year old and she is the sweetest and most loving person you could ever hope to meet. Any one who comes onto the ward has to acknowledge her presence she makes sure of that. Her beaming smile and open arms are ever visible and she repeats: “Hello” endlessly until she receives a response. The day she gets her hair washed she wants everyone to know. She runs her fingers through her thick shock of dark curls (now clean) and holds up her new deodorant for everyone to smell. We all have to make approving signs and sounds “mmmmm” before she is satisfied. Eileen is grateful for the smallest favours; smiles, tissues, headphones for the radio. All the nurses adore her, as do the other patients. If you feel low, just a few minutes in Eileen’s presence can lift you from the doldrums in an instant. Eileen’s carers are a family with young children and they all gel beautifully. Eileen seems to have a natural affinity with children, as though she can immediately identify with them. When she is finally ready to go home the ward seems vast and empty without her. Meeting Eileen and getting to know her was a privilege for us all.

3rd May: The big operation

The first night on the ward does not surprise me as I still have my memories of the last stay. The woman in the adjoining bed is alternately moaning, crying and complaining for hours. Finally she drifts off to sleep. Half an hour later she suddenly shouts out “ Oh do be quiet! To no one in particular! Either she is extremely audacious or talking in her sleep.

I am in theatre for just over seven hours. For me the most disturbing thing is not remembering waking from the anaesthetic. Chris assures me I was communicating, but try as I might to remember I lost about two and a half days. In that time I experienced the most terrifying hallucinations which I took to be reality. Apparently this is not uncommon with liver operations; the liver clears the body of toxins and these toxins can cause hallucinations. Initially it seemed to Chris that the op went well and I was not in any immediate danger. After a couple of days I was downgraded to the High Dependency Unit from Intensive Care I was conscious after the op but couldn’t talk because of the tubes and drains. After the initial drowsiness of the drugs wore off I started to behave very strangely. I became agitated and loud. I was apparently aware that I was starting to hallucinate, thinking it was the effect of the drugs. By the Saturday I was ‘eccentric’ to say the least, laughing out loud, shouting without realising it, but still aware that I was behaving oddly. This gradually developed into a full blown period of about 48 hours where the hallucinations took over from reality. Chris was unprepared for this behaviour and had no idea it was not that much of an uncommon side effect. He sat up with me the whole of Saturday night. I was trying to jump out of the bed. I began screaming and swearing at other patients and visitors, totally confusing people, seeing things that weren’ there. I went through a period of staring eyes and biting my tongue which lasted about two hours. Chris thought I had brain damage. After two days it slowly began wearing off and I was realising that I had been battling in my own head caused by these hallucinations.
Whilst I was behaving in this way, my memories are of a long and hard fought battle. I had to list all the people around me that I loved in order, before I would be allowed to recover consciousness. At this stage I thought I hadn’t yet recovered from the anaesthetic snd that this was some kind of test. The first time I missed out my Dad and then had to start all over again. I was also given the power to decide if I should live or die and finally the power to say whether or not the world should go on. At that point I apparently flung a sick bowl across the ward which was my way of abdicating all responsibility from such a decision.
Daniel visited me a few days after the op which was wonderful. I was over most of the hallucinations by then and he and I held hands over my bile drain…probably not the most exciting way to communicate but certainly one of the most unusual!
Initially my recovery is good, but then the complications set in. I have a blood clot in the portal vein and my temperature is spiking high at night. They test for infection but it takes several weeks to get to the root of the problem. A pool of bile has gathered near the portal vein, constricting it and the narrowing is causing infection. They try various procedures in radiology to solve the problem, each one is painful and leaves me uncomfortable and fed up. I just don’t see an end to it all. The weeks go by, and it feels as though I take two steps forward then three back. To make matters worse, when I am well enough to get to the bathroom myself I discover that about 50 patients are sharing one bathroom which is nearly always occupied. The bath tub is impossible to enter or leave without a mechanical hoist and there isn’t even a shower. Can you imagine how it feels not to shower for weeks on end? Disgusting. I just want to go home and wonder how I can cope much longer in this painful brash and intrusive environment.

Update on my progress: 2nd May 2008

It is good to have the opportunity to Blog once more. I have just experienced the worst 8 weeks of my life so far, and the hospital have recognised that I needed a break from their constant blood letting, needles and 'procedures'. They have let me home for this week to recover. I am to return a week on Monday for yet another delightful 'procedure' whilst they attempt to get my bile duct functioning again. If this is successful things should improve, if not I may have to return to the hospital a few months down the line for more reconstructive surgery. I hope it doesn't come to that! Coming home after so long away has been like a breath of fresh air for me. I am still attached to drains and need daily injections, but at least I am now in the comfort of my own surroundings and I so look forward to going to bed in the dark without beeping noises, commodes that are pushed into the ward like trains and nurses voices rousing me from sleep just to take my blood pressure. Argggghhhh!

When I first attended the admissions desk on the 11th of March I hadn't a clue what I had to face. Had I known I might have simply turned tail and run away! Southampton General may have the most expertise in liver surgery in the whole country but their lines of communication are exceedingly tenuous! We arrived as planned at the pre- assessment unit at 1pm to be greeted by a ward sister who claimed to have no knowledge of me as my name wasn't on her list. Perhaps she noticed my despairing skyward glance! Then she tells usthat they are now at full capacity so there may be a long wait before assessment. I tried to cover my boiling wrath with a calmly stated "I am having major liver surgery tomorrow. I can do without this added stress" After twenty minutes an administrator seeks me out and assures me I am on the list. The other sister was looking at the day surgery list. Ironically I glance across to a sign on the blue door: SISTER VACANT.

It takes them several hours to find a bed for me. After I have taken the pre operative laxative the registrar informs me that if there is no bed in Intensive Care available they will not go ahead with the operation but will send me home. I am losing confidence by the second as I imagine an horrendous trip back to the Island glued to the toilet.

I suddenly feel very positive and I know deep down I am going to survive the operation. I surrender myself to whatever and wonder what tomorrow will bring.