Pat's RSS feed

last

Thanks everyone for doing the best possible job of Pat's funeral. Over one hundred and thirty people attended the church and a stirling effort was made to give her the send-off she deserved. I felt it essential for the mood at the time and for our future memories that she went out with full honours. We all had a few days away after the funeral, but since then it's all been very low-key, stay busy and let the days tick by. Even while the pain of loss is smarting I hope to take my difficult experiences with me and use them to better my own quality of life and that of others. I will leave the blog behind now except to post up news of any Pat-related events. I wish to celebrate her by doing the ladies walk as a fun-fundraiser in the first week of May next year and maybe other things too. My final word is that I feel a great privilege to have known and loved Pat. The Dennis' made a pot in memory of her, it was auctioned on their Gala Day and raised £1800 for St. Margaret's.

Love Pat

Miss Pat

further

The nuts and bolts of death keep me busy. Today I tackle the registrar, the funeral director, and the vicar. Funeral is confirmed for Tuesday.

after

Pat's funeral has been provisionally booked for Tuesday 22nd at 2.30 in Shepton Beauchamp, fond memories to follow at The Old Cider House. I'll be putting a eulogy together if anyone wishes to contribute, and there'll be a pin-up board for photos and memoria. Rest in peace.

over

Pat finally lost her long fight yesterday afternoon. I went to see her last night and found her surrounded by a quiet peace and serenity. We will miss her in so many ways but at least for her the pain is over. Happy birthday sweetheart.

After a couple of mad days it's back to cold reality. Pat has been almost completely unresponsive for the last two days. She was put back on a syringe driver yesterday as she was unable to take oral meds. Although loath to predict anything, the staff nurse today said they think this could be her last downturn. Birthdays, exams and festivals all coming up so the timing is bound to present difficulties. After dinner with my newly balanced family of three I talk about bereavement and the grieving process. I emphasise openness, resilience, unity and looking forward to better times. Pat's long ordeal will surely soon be over.

less

Today I find Patti awake and alert. She is calmer, thankfully, but her rational has completely gone and conversation rambling, meaningless, and continually out of context. She eats some strawberries, but doesn't seem to know who I am or indeed anything at all. I find out that connection failure is less tiring than emotional overload

pity

Most days this week Pat has been awake for long enough to take some sustenance, but usually her eyes are closed and she is unresponsive. Until today that is when changes to her medication put her back in the room. She is sitting up and alert when I come in and starts talking immediately. It's rambling, incoherent and dillusional. Altogether she is more emotional and we have some funny moments over dinner, which she eats well. I try to keep this mood up, but there are sad and tragic moments too. "Let's go to the pub for a drink", she says, trying to get up but being unable even to raise her head. She also mentions coming home and this one really hurts, more than once with the memory gone and the conversation marching on. I speak with the staff nurse and will speak further with the doctor tomorrow. I eventually leave feeling utterly drained and with the distinct feeling of being two helpless pawns under some kind of Pharmaceutical Big Brother. Pity has never been stronger

down

Another sad day comes as I find Pat almost totally unresponsive today, briefly opening her eyes but not moving or speaking. She has had some liquid I am told but nothing further. I'm saddened by the developement, a step nearer to losing her, but can't think why she should hang on. It would be merciful for her to slip away peacefully now. Meanwhile Josiane marches on relentlessly, 15 miles to finish tomorrow. She's had pouring rain, blistering sun and very sore feet, but remains in great spirit. Marvellous. When one light fades we are thankful that another is burning brightly

touch

After I've posted my last blog I read it back, it's grimmer than ever and I must try harder with that positive thing. Today I visit early, determined to connect with the woman I love. I manage this but only intermittently, mixed up with random confusion. I ask about her mindset and she is quite positive, one joke gets long eye contact and a smile. Elizabeth comes, thankfully, and we talk. Pat started knitting a scarf at Christmas for me, she managed designs on one end but not much of the body of the scarf. While sitting with Pat I am approched by a volunteer for some coloured wool for the other end. She has taken it upon herself to finish it for Pat and I am choked up whilst talking to her. Everyone has found some way to help and without this I would surely have foundered

wall

The rollercoaster continues to pitch and yaw. Pat needs to be fed now rather than helped with her food, her appetite isn't what it was and the joy seems to have gone even from eating. Subconsciously we all adjust our expectations and this allows us to find positives from pitiful scenes at the hospice. I visit with the children on Tuesday, dreading the possible effects of a bad experience. Pat makes what must be a massive effort to interact and stay focused. We make silly playdough models to try and keep the scene upbeat. Pat manages a few words, smiles and almost laughs to let us know she is still here. We don't last an hour, it's draining and feels like much longer, but nonetheless we all consider it a positive experience. The woman I married would die of shame if she saw herself now, but that woman has gone and I cannot evaluate my emotions regarding the other one. Only the big sleep can bring mercy for Pat now. Meanwhile Josiane will travel to Newcastle tomorrow to start her trek on Sunday. Bon chance Josiane et prends courage parce que Patricia marche toujours avec toi

weary

I try to stay strong and mostly do, but on Friday a weak day comes out of nowhere, sorrow and despair taking over conscious thought repeatedly at unpredictable moments. In company I just about hold together and let the emotion vent when I am alone. I take Pat some old CDs to listen to. She really engages with this, smiling and mouthing along with the familiar tunes. David Craig is even enjoyed by Claudia who comes on Saturday and holds the reins while I step back and take a deep breath. This was a good day for Pat, who was more wakeful and talkative than recently, animated by music and Claudia's familiar voice. Since then and in general she has been increasingly drowsy though, having to force herself awake for food and being unable to concentrate for any period of time. I try to look through the shell and see the beautiful vibrant woman I first met, and console myself with the fact that, outwardly at least, she shows no sign of discomfort. Felix concentrates well on his revision and Lily is placed 6th from a large field in her show-jumping event. Two to make their Mother proud.

walk to live, and live to give

Little change with Pat. Her world is narrowing and I try to always turn up with something edible. I ask how she is in herself, "empty", she replies. So we are still sharing something - although she may just have been referring to her stomach. Months ago I had the idea to gather friends to celebrate Pat's life by doing the Ladie's Walk in Montacute while the bluebells are out - her favorite - and raise a few quid for the difficult work carried out by the nurses at St Margaret's. The timing could have been unfortunate and I've been exhausted so that was put on the shelf at least for now. On Sunday I was moved to hear that a work colleauge of Pat's has also decided to take up this cause by taking on her own personal challenge. This is admirable, verging on heroic, and must be rewarded. I've donated for Pat and I hope others will be generous and say HURRAH for those that come to us in a time of need. This is her address www.justgiving.com/Josiane-NICOLAS . She'll never walk alone

living

I avoid updating the blog. There's nothing positive to say and instead of being cathartic, it can serve to accentuate the pain spelling it out in black and white. I wait for a better day to put down my thoughts. Today I visit with Jane Taylor hoping to take Pat out - increasing difficult in itself - as she has been low and irritable of late. We find her very tired as usual but also calm in herself. We have tea and chat and there are smiles. Jane and I pick up conversation in the gaps and Pat's ears are always open, enjoying the sound of familiar voices. She gradually warms up and seems contented. I come away without the usual tears as I respond to her mood more than anything else, finding it very difficult when she's in a bad place. It hasn't been a good week for Pat, her balance seems to have gone, the fatigue and distance both increasing. Earlier in the week with Dr Raff and Elizabeth, Pat signs something like a living will. This involves anticipating various scenarios which is still very difficult for her. She also attempts to discuss her fate with the children but can't get past the first sentence. Food seems to be one of the last things she can enjoy and I'm off to Lidl tomorrow to pick up the taste of home. Life at home is truely without her now. The dynamic in the house is good and the kids have adapted well but for me the bed will be too big for quite a while

On we go, down and down, no end in sight. Although Pat is very weak physically, unable to raise herself and struggling even to eat, internally she is functioning well and no-one will give even an outside limit for how long this could go on. They work on her mood but she remains low and talks, at first metaphorically, and then much more directly about wanting it over. With Pat's attitude to her illness there has been no planning for this. When Dr Raff tells us nothing can be done to shorten her life Pat is philosophical but relieved to hear that they can at least put her to sleep if she's really had enough. She is mostly distant and I feel weak weak being around her, unable to help, find words of comfort, or even to connect emotionally except through sorrow or with luck a shared smile. We are both pleased to see Elizabeth who can be company for Pat and share the strain. I see the bereavement counsellor and it's good to talk but I know I'm on my own with it in the end and I concentrate on holding the family together and getting to the end of each day. The kids seem to be holding up ok and I take comfort from that. We are all ready to move on to the next stage of grieving

still

Inch by painfull inch the inexorable decline continues. For most of this week Pat has been relatively relaxed but she's also had some difficult realisations about her lack of mobility. Although down she needs to get out and comes home for a day visit today. It's touching and tragic to have her here. Pat is happy to see Felix and we take our time over a tour of the garden. We enjoy a homefare lunch and afterwards rest together on the settee. It's hard to engage Pat in small-talk, but the main subject matter is unpallletable and must be broken up by something. There's nothing to console her and the colour of her mood remains. Anything can trigger a weak moment for me and I struggle desperately with composure, finding the pitiful nature of her decline excruciating

on

Another relatively decent few days for Pat. She was out for a short walk on Thursday and Friday and managed to get out for lunch twice over the weekend. Still astonishingly lucid and totally in the room this is definitely the limit of her capabilities as she is very weak physically and shows great will-power just to get out. Claudia is here for company and is able to interact well. Exhaustion levels plateau out as the time-scale shifts again

time

Days pass and it's a job to know where to go with the blog. Mostly there is a slow and fractious decline in Pat's health, but these last three days have seen a much improved level of consciousness and better mood. On admission Pat's goals were to have her catheter removed, to come off her syringe-driver and to spend quality time with her family. These have all now come true as she pulled the driver off on Monday herself and the change is manifest. Definitely more in the room, more relaxed, and less angst. With this I feel better or it's all just pitiful and (out of contex) undignified otherwise. Pat still has goals and everyone works to achieve them, hour by hour, day by day, and who knows where we're going next. I have laughed, engaged and been fortified by my smiling wife. Yet there is joy

wearier

Pat remains steady in St. Margaret's. She is mostly tired and sleepy, although quite herself during wakeful periods. This is normal, I am told, her condition and her medication all pointing down the same road. She is weakening physically, less mobile, wasting, skin pale and drawn. We are keeping visitors down to family and close friends, as this doesn't serve her either. Pat is kept comfortable, but nothing can serve her. It's pitiful and I feel weak, weak watching my proud and beautiful wife being taken in this fashion. It's a struggle to see any quality of life for her now, yesterday there were tears all around the room as she voices her fears about what is left. Today seeming neutral and indifferent. The children seem to motor on almost as normal with me filling in the gaps, but I struggle desperately with composure and maintaining morale, empty, bereft

weary

Pat has had a very quiet few days at St Margaret's. Although heavy with exhaustion she is surprisingly lucid, greeting visitors and conversing almost as her normal self. Her bat-ears function perfectly and anyone in the room talking over her is soon put right. There is much talk of what can be done for her, we all feel so helpless, but medically it's all about symptom control. Elizabeth stays with her, which is a comfort. I am able to do odd bits of work and spend some time with the children. "Holding" is a term used by Dr Gillet, and there is no predicting where things will go next. Being well enough to go out for a pub lunch is the extent of our goals for the moment. Pat is eating well and her sense of humour is undimmed, love my wife

echo

The house is calm and relaxed and the children slip into their holiday rhythm of late mornings and nights. I'm finding it empty though and must stop having quite so many weak moments. Pat has had a couple of days of surreal confusion at St Margaret's, her disease and medication manifesting in unpredictable ways. She has been eating, but is otherwise mostly disfunctional. The children visit and are sad but not traumatised. Today Pat is hardly awake as we have a picnic lunch and raise a glass for her. Pat who had so much left to give

sad

Yesterday Pat was a ball of manic energy. She ate three meals, went up the lane in her chair, and watched a movie with her family. She is intense, confused and irrational. All the time a medical emergency is round the corner. The stress is all around as we talk with our GP and Pat agrees to be admitted to St Margaret's again today. Everyone seems relieved, but getting her there is a tragic affair. She tries to pack but is completely disfunctional mentally and physically. A very sad day, but afterwards the home quietens and the children are more settled. Luke and Alice are home back to their normal lives. They lasted a week, easily a record, and now feel like close family having worked so hard at holding us all together through a marathon roller-coaster. Their rest tonight is well-earned. Claudi is with Patti and she still has goals to achieve. Love Pat. Miss Pat.

bumps

Days pass, not that many, in a blur of events, constant flow of people and always the long penetrating conversations, on and on. After two days, Pat has learnt her medicine and fights back to conciousness. She wakes up, sits up and has soup, a true Lazarian. She is heavily medicated, ill-tempered and unwilling to move. Her care and the location of her death occupy the throng. Holiday tomorrow, and each day as it comes. Visitors and professionals hold their concentration, but the children and I are glazed. Numb

time

Soon all our shared reminiscences will be turned overnight into lonely dots of history. A life turned into memories. Pat lies comfortable at home. No longer able to take oral meds, she is put on a cyclizine, diamorphine, madazalam syringe driver. She is more than drowsy on this medication, but at least comfortable. She is offered a bed at St Margaret's and we may well be there yet, but hang fire just for now. Luke and Alice will stay awhile. They are touching, functional, and real, a bridge across the ages. Visiting nurses show great professionalism, focusing on symptom control. Five for dinner. Peaceful

hold

Gradually Pat weakens at home. Went to bed on Wednesday evening and hasn't managed to get up since. Slowly the usual pattern of symptoms emerges, waves of worsening pain, sickness and vomiting. By yesterday evening I have to call the out of hours service. We talk and she limps through the night without a visit. This morning she is very sick and can't keep her meds down. Dr Roberts visits, kindly and calm, giving her an anti-sickness and pain relief injection. Her other medication is adjusted and we hope to be able to keep her comfortable at home. Luckily Alice and Luke are here and are able to shop, taxi etc. Edgy

home

Pat's goal is achieved and this is indeed a precious time. At his Mum's request Felix makes spag bol, and we all enjoy a family meal with the usual low-key chat. The children are caring and compassionate, I hold back a tear while we cuddle -up on the settee. Pat is fragile, gentle, her health on a knife edge. A nurse will visit once a day to supervise medication, assess and report back. This is reassuring. On discharge, we meet with a number of professional staff, all with different information. It's a challenge for Pat as I notice her cognative thought processes and memory are seriously challenged. All emphasise quietude and she does focus on this, " being calm is my only job now, but I'm just an apprentice". There is much talk of averting another medical emergency, we all wish to avoid the MAU at Musgrove. Friends and neighbours help, and we hope Pat can stay awhile. I go now to join her.

follow

Pat remains strong. Not yet awhile for her methinks. Over the weekend Pat enjoys an afternoon in Sherborne and a trip to Olden horse trials. In private discussions Pat has softened notably and this allows my angst to partially subside. In it's stead a wave of empty sorrow floods in and I wonder just how lonely I will be without her. Pat's goal to come home must be realised. With Sue Ross, our own oracle, we discuss my fears openly and an end of life plan is mentioned. We've some way to go so her discharge is postponed until Wednesday. If calm is maintained, at least for a while, this could be a precious time for us. Hang in there Patti

goals

In a steady environment, Pat's health holds up well. The stream of well wishers continues and in this company Pat can stay close to the normality she craves. We both have some counselling sessions. This is an easy off-load for me but much trickier territory for Pat. Part of her is accepting of her fate, but another is resisting strongly. It doesn't seem easy to reconcile these two. Pat's goal of coming home on Tuesday seems real now. This should be triumphal, yet I feel nothing but trepidation. I wonder if we can enjoy quality time at home, I worry how her health will hold up and I dread the responsibility of her clinical care. I've yet to discuss things but the doctors have told her there will be precious little direct care at home and the thought of her being here alone is yet another worry. A busy weekend with further discourse lies ahead

awful

Curse this disease and the protracted torment it brings. On Saturday Patti is unexpectedly strong and we decide on lunch out in Lyme. The weather is bright and Lyme displays it's usual timeless beauty, but this doesn't match the mood. Patti doesn't want to be helpless, use a wheelchair or have cancer and all of this puts her in a rage with her condition and more immediately, Elizabeth and myself. There is personal hurt involved and forgiveness is an easy word to say. Afterwards I am left flat, empty and devoid of emotion. On Mother's Day morning Pat is calm and she enjoys cards, gifts and photo albums with the kids. The world and his Mum are out for lunch so we enjoy a healthy picnic with Butzi and John. I am still jaded and must take some time out to repair my state of mind and put family life back on track. Pat's medical condition is variable as she recieves numerous visitors. If they're loioiking for closure they'll be disappointed.

parts

None of this is easy for Pat. Visitors come to cheer her up, but mostly she is tired, ailing and scared about what comes next. I struggle with guilt. Apart from occasional sickness, her symptoms are under control and it's dificult to track the underlying disease. Spending time with her I notice changes. Thought processes are muddled, mobility and hand coordination variable. Tonight she is tetchy as she has ordered a salad for dinner and doesn't want it. Butzi arrives and with the help of the children the dark mood is eventually broken after I fetch in some Parma ham. We leave with smiles and I love yous, but it's hard to find positives and I fear the blog will become goulish if I keep it up in detail. I've felt very dark before and good bits have always followed so I must press ahead, armed only with good will and the power of now. Love Pat

psyco

I visit twice today as I am concerned to see Pat content in her new surroundings. She has slept well and enjoys a healthy breakfast. We talk at length with one of the doctors. It's preliminary but all bases clinical and psycological are covered. It's very professional and while there will be some difficult moments for Pat , I feel we are in good hands. A minimum stay of two weeks is agreed on. Medically things haven't been good, sickness and several partial seizures. It's early and they will adjust her meds tomorrow. I have some sense of progression. Meawhile Felix is dumped by his girlfriend. A better day tomorrow?

St Margaret's

Pat astonishes everyone yet again by becoming stronger each day in hospital. She now walks unaided to the bathroom and talks of coming home in a determined way. This morning we wait more than three hours for hospital transport. This is not my forte and I curse my own impatience. By the time we arrive the Doctor's are in a meeting and I have to take Claudia off to take her flight. "See you soon, if not maybe we can be sisters again in a different place" says Pat. The timing is all unfortunate and Patti isn't feeling great. She is on a ward of four beds, but with no-one else there at the moment. Another patient will come tomorrow and if they get along things will be looking up. It's early doors and I hope Pat will settle and adjust. Staffing levels are high and they all seem calm, patient, and professional. Pat is receiving a trickle of visitor's which I'm sure will grow to a stream. All welcome

sitting

Patti seems strong and settled in the hospital. Her mobility is variable, limited, her mindset is strong but further prone to waivering, pain and sickness all taken care of, sense of humour still to the fore. Her siblings, making the most of little time, hold a patient bedside vigil and she must take some energy from this, but they bring their own issues and these must also be addressed. I too gain some strength with a little time away from the situation, drawn back slighty from the edge. Patti will be assessed tomorrow and won't be moved before Tuesday. This must be right, the critical test of the week to come. The family home is calmer, a new order is struck and away from the suffering and stress we are all happy with it.

morphine

This morning I receive a phonecall from Pat, sounding almost normal and with a list of requests from home. Her meds have been adjusted and she is lucid once more. Not best pleased with the situation, it has to be said, still fighting but resigned to having taken another step.The hospice in Yeovil is mentioned again as her next move and she is reluctantly accepting. I visit St Margaret's again today with the kids to meet Kasey Leader, a councellor, for an introductory session. We talk together and she helps to explain the emotional side. It won't be my last visit to her office. It's peaceful here and Patti will have all weekend to adjust to the idea of transferring. It will be best for all of us and I'm sure they will be able to deliver Quality of Life to the whole family. Meanwhile the siblings are all piling over and emotions will be running high. I'm lying low tomorrow. Thanks to everyone for their messages and calls, they all help even if they go unanswered. We continue...

diamorphine

Pat lies comfortable in hospital tonight. They have her heavily sedated as she had such a bad day yesterday. She is drowsy, unable to eat much but with sense of humour intact. They will check her dosage and she'll hopefully be more lucid tomorrow. The hospice could be her next destination and she is accepting of this. Sleep tight my sweet one

harbinger

Pat is resting at home now but it's been another eventful and distressing day so far. Our meeting with Dr Graham, senior consultant, progresses normally at first. Information is delivered in the usual, guarded, take-it or leave-it format. We even discuss a possible oral chemotherapy that has a 10-20% chance of being effective. Halfway through the meeting Pat has a "complete brain disfunction" she is flushed, swaying, eyes closing involuntarily. It's alarming and we lay her down to rest semi-conscous. Outside he tells me she is unique in how she has been able to fight the disease, fifteen months on from a three month prognosis. I explain how well she has used her favorite weapon, denial. Back with her she is lucid and he delivers a withering broadside of truth. The eyes are closed and she doesn't want to hear it. The words bounce around the room and even I am unable to take them in. Repetition of advanced. The pain is bad now and they give some morphine. We are just trying to get her home when she has another episode and we agree she is not well enough to come home. They look for a bed and find one at 6.30 tonight in the Beacon ward which is very comfortable. While she rests in our bed now it's hard to see the circumstances under which she could return.

Still

Pat has been just a little stronger over the weekend. She has a period of strength in the afternoon when the steroids are working best, and we use this well for some quality time. On Saturday Corinna, Patti's childhood friend comes down. We go to Sidmouth and enjoy a brief stroll along the front and a lengthy cream tea in a seafront hotel. The atmosphere and company is relaxed and jovial and we all enjoy ourselves. Today we feast on a sumptuous rib of beef at the Taylor's house, we are all upbeat and there is laughter, each moment is real. At these times Pat is almost her old self and relishes the normality she craves around her. Outside of these hours Pat is weak, often angry, and requiring morphine to control the pain. She is insistent, demanding, and snaps at the kids. Forgive everything, I tell them, but it's a difficult mantra for a thirteen year old. This evening she has a mini-fit on the settee - eyes gone and breathing in snores - but afterwards she comes around quickly, and though initially alarmed we are soon back to normal. Our next target is to get through to an oncology meeting on Tuesday. Our GP tells us to make sure all our questions are answered, but we seem to have different listsand I don't know how to reconcile this without some terrible truths being told.

more difficult

Fatigue, listlessness, disorientation, crushing headaches in waves and eventually sickness. I'm familiar with the symptoms now and with protracted administering of medication and a 1am visit from the out of hours doctor I am just able to keep Pat out of hospital. She is back up to her maximum dose of dexamethasone and if she goes down again I will have to take her to Musgrove. Today she is a little better, although very fragile and still with the headaches. Afterwards she seems to forget the suffering and is determined to stick it out at home for as long as possible. For me the witnessing of it is an ordeal in itself, and during the few down moments I am unable to sleep, my heart racing with sickening worry. Our GP visits today and helps by shortcutting the admissions process so I will be able to take her in myself if things get worse for her, with the help of Kate our fortifying neighbour. As soon as the oedema is under control she is herself again, meeting Felix's new girlfriend and getting involved in arrangements. I mention the hospice but it doesn't go down well as she won't accept how far down the road she is.

"you will always be this family's hero" I say

"don't talk rubbish" she replies

We soldier on

stubborn

Against all the odds and other people's advice Pat goes to work today. She is happy to be amongst people and functioning. This evening she is weak though and has a difficult moment sitting down to dinner. She admits to being scared and another downturn seems not far away. I read up on the final stages; it's all grim and the tears are rolling again. I'm informed, and that may lessen the shock. Pat's positive attitude has shielded her from any interest in what may happen to her. This is good, as I would find it difficult to talk about. Through her primary illness we had a great sense of togetherness, and I worked really hard to maintain that following her secondary diagnosis but this will get harder as things progress. The future is bleak and fearful so I think only of today and the luxury of being with her tomorrow.

araf

It's perfect for us to be away from the petty worries that surround family life at home. Away with friends we are ourselves once again and we all enjoy the company of another family, comfortable chatter, a good meal out, and even a glass of wine. We congratulate ourselves for making it to Cardiff as it seemed a long way off a fortnight ago. Again I feel guilty for underestimating what Pat is capable of. Today she seems weak though and has signs of her symptoms returning. There are tears and dark thoughts and for the first time we discuss staying strong until the end. It's a dificult concept and a difficult conversation but we are agreed on the conclusion. Another big week is looming for Pat as she hopes to go back to work on Tuesday. It might seem ludicrous but it's just another part of her carrying on and it's still important to her. I hope she has the strength and will stay well. Day by day we get through.

now

Our short trip to Bath is a great success. We enjoy casual hospitality and a great meal out in a gastro-pub owned by an old friend. In a public place, our private conversation moves on well as we are better able to manage the emotional content. We're not much more than started on it yet, and it will occupy us for a while. It's Pat's first day home alone today and I think it's a struggle for her maintaining moral. She gets through it though, and is pleased to hear of Lily's win eventing today, and pleased to see Felix back from London. Tomorrow we're all off to Cardiff for a weekend with friends, it should be fun and engaging, which is just what we need. Keep it up Mum

"not out of the woods yet"

-is one of the flippant quips she makes regarding her health. It typifies her spirit, and this is what keeps her going, her failing body following on reluctantly. We tread a fine line between maximising her quality of life and exhausting her. Today Lily is riding out with the hunt and Pat is following on with Sue Ross, having a few giggles along the way I'm sure. Tonight Felix is away and Lily is on a sleepover so Patti and I are travelling up to Bath to enjoy a nice meal out, the company of friends and maybe some shopping in the morning if we're up to it. Each day is a blessing.

further

Patti's health holds up nicely and normality seeps back into the household. She continues to be on great form and each day enjoys the company of friends and family. She is happy, relaxed, more accepting and I realise that whilst denial is her daily tool, deep down she has dealt with things that I have yet to face. At night I lie sleepless, my mind lurching between anguish, fear and despair. Each day she is well I relax a little, tonight she is well enough to insist: insist on cooking and making the desert. We begin an important conversation about us, but it's too sad and too final and has to be adjourned, the time will come for that one. At the moment it's onward and upward and we plan boldly for half-term. The timing is good and we will be making it count.

until

Today with Andrea Clarke we visit St. Margaret's hospice in Yeovil. I see now that denial will stay with us until the end so it's a result just to get over the threshold. We find it fresh, open, calm and quiet, it's a good introduction and we try not to dwell on it over a cup of tea afterwards, but another bridge has been crossed and while the route is obscured, the destination is clear. We share tears and a declaration of love. Still well today, although quite weak. Stay some time

live it

I worry about being able to care for her and fear to witness her suffering but I recognise that this is a special time - every minute is precious. Friends and family help to steel me and the positive mood is maintained, not least by my wife who delivers an astonishing tour de force of fearless resilience this weekend. Friends visit and marvel, while Pat leads us over difficult terrain with easy laughter and appreciation. Her strength will live on through us but for the moment the Quality is Here and Now and must be made use of. So I go now to join the company of my wonderful wife Patricia

home

We are lucky to have Pat back at home today as they have managed to control her symptoms. She is weak now but the family unit is happy to be together. Felix is in the school fashion show so a friend does lifts and Lily represents the family as we're not really up to that. Instead, after a few smelly days at the hospital I bathe Patti for the first time ever and it is a beautiful experience for both of us. Peaceful now

Awful day for Pat yesterday, pain and sickness. Admitted back to Musgrove yesterday and is much more comfortable than yesterday. In between she is positive and involved, making sure the kids are organised and getting a gift delivered. Her bravery is astonishing, she'll need it while planning with the palliative care team tomorrow. Denial is used up and we learn a new lexicon, comode, tramadol, hospice. Hope stays with us.

tough

Difficult to keep the blog up with the situation changing rapidly and emotion/exhaustion running high. Pat's visit to oncology on Tuesday was informative and reassuring, but it's all been downhill since then. Then urging her to cut her dose of dexamethasone has led to acute headaches, sickness and a hospital bed on Thursday. We bravely brought her home yesterday but are barely able to juggle her meds to keep her comfortable. The worry is burning now and it's hard to find positives for her. She remains brave, this and hope will be her last bastion

continue

No more seizures for Pat, until now at least, thanks to careful blood monitoring. Things are still not easy for her though, with headaches, wobbliness and other minor symptoms persisting. Her moral is suffering slightly with the continuing pain and worry. We've had her sister Butzi with us for a few days which has been fortifying but with the tensions and exasperations that can accompany family relationships. Pat has an appointment at oncology tomorrow to talk about her symtoms, her medication and possible forthcoming treatment. Her bravery and resilience is astonishing, but it's difficult to find positive things to point at. We've become good at making the best of each day and there are surely good times ahead for Pat but the length of the trial and the not-knowing about her future are making it a marathon trial for everyone. She handles it better than me, tomorrow she has oncology 8.45, all day at work, then yoga before she comes home. Legend

firm

Thankfully things have gradually improved a little for Pat. The steroids have taken a while to do their stuff but this week she has improved a little each day. Her first day today with no headaches or wobbliness, quite a relief for all of us although we're not getting carried away. Each time something like this happens she fears her lifestyle will be curtailed, and each time she's been proven at least partially wrong, she was out for a bit of a hack on Breeze this afternoon. A bit crazy, but it would be more crazy to try and stop her. Pat had an easy work week as students are on study leave, but she has been flat out round the house doing stuff today, and is cooking dinner as I write. Pat's anti- seizure medication has been increased which could also help, her dosage is being monitored through her bloods. Go Girl

vital

Despite the increase in steroid dose, Pat's health seems very fragile. She's getting headaches, visual disturbance and wobbliness. It comes and goes, and while it's away she stays positive, but she is scared as we all are about what happens next. It's impossible to look forwards at this time so we just try to get through each day. The horses are fine, the heating still works, I haven't had a car crash and our chicken dinner was superb. Exams this week for Felix. Hang in there Patti

trial

Our visit t the hospital, preceeded by nerves once again, was a positive one. No change from the previous scan, we are told. We discuss medication and various other health matters, it's low-key and brief, but not hurried. Things haven't gone so well for Pat today though. She suffered a seizure while halfway through lunch in the kitchen. Again Felix (off school) called for a medic and I rush home from work. They test her vitals while she recovers, it takes nearly an hour for her to become completely lucid. Luckily I was able to reach her consultant on the phone which averts a hospital visit. Her steroid dose is increased significantly this time and we'll go to the GP tomorrow for a blood test to try and find out what is triggering the seizures while the tumours are stable. Pat was upset and knocked back by it, athough she is happier this evening. I still hope they will be able to medicate successfully against the seizures, but more steroids are not welcome,nor are the implications of continued seizures. It's all pretty worrying and I have a good chat with the kids afterwards. They seem quite calm once Pat has recovered and we resolve to make the best of things. The indomitable and enduring strength of the human spirit will get us through.

inform

The festive season has passed well for us down in Somerset. Pat's health has held up well throughout and that has allowed all of us to get some well-needed rest and relaxation. Christmas was quite busy with all the preparation and guests to look after. There's a stir of energy with relatives about the place and we all benefit from our interactions. The over-excitement and subsequent anti-climax that may normally accompany these visits seems strangely absent, people come, days pass, but reality is unchanged. Over New Year activities are curtailed by the weather and we all get a bit lazy, reading, sleeping, ipoding, cooking and maybe watching a movie. Pat had a scan on the 24th and following blood tests tomorrow it's back to oncology for yet another showdown on Tuesday.

A VERY HAPPY NEW YEAR

To all our friends out there. We could not have coped without all the help we had last year, so thanks again everyone, and keep it up, there's still work to be done.

form

The High Noon build-up is upstaged by Pat having a seizure yesterday afternoon. She was found by the kids arriving home from school, it's a brutal reminder of what's happening to their Mother. Felix stayed calm and sent Lily to fetch a neighbour while he called for an ambulance. Pat had dropped down to a very low steroid dose and it could have been brought on by this, or a complete failure to take her medication, as she finds it hard to get all the pills right despite various aids. Anyway she recovered from it okay and I was able to bring her home in the evening. We keep our appointment today and as usual it's all quite low key. Her last scan (a month ago now) shows no change, which is good, we are told. Her dexamethadone dose is doubled to 1mg, still low, and a scan is booked for the New Year in light of her latest incident. If nothing else is happening she can have a break from treatment until her symptoms return, and two or three glasses of wine is ok - we'll have to get some bigger ones. We are looking after her and hoping she can keep her lifestyle going for the moment. Go on Pat

best

It's been a pleasant Sunday to finish off a slighty tense weekend. Pat rode out with Lily this morning and we had drinks at a neighbour's at lunchtime. Afterwards we all got Chritsmassy, putting decorations up, dressing the tree, playing some seasonal pop music and reminiscing over past family Christmasses. We enjoy ourselves but Pat's mood is up and down with Tuesday's oncology meeting hanging over us like the Sword of Damocles. After an extended period of precious respite it'll be back to reality with a jolt. We know they won't say the one thing we want them to say so it's damage limitation really, a further rest from treatment perhaps as Pat is still weak with all she's been given. With mood your mind wonders wildly over the possible extremes, but reality will lie in the middle ground and it will be up to us to make the most of things. All positive empathies welcome

and on

A year exactly since the worst day of our lives when Pat had her secondary diagnosis. The anniversary is mentioned only briefly first up and put to bed. At the time the shock was like falling into a bottomless abyss. Dr Barlow said an average of a year for her, but I remember doubting that as she seemed near death. With a high dose steroid her health improved immediately but mentally she was right down. It took everyone to pull together to get Pat over the worst of it by Christmas. Thank you, it was a desperate time for us. Since then Pat has, and continues to be, a phenomena. We've all learnt how precious life is and I hope are better able to appreciate those around us. With apologies to R. Scott - for God's sake look after your people

on

Things continue to go well for us here. Pat's health is holding up amazingly. Chemo all finished for the moment, it's been quite dehabilitating, but you wouldn't think that meeting her. She manages her limited energy expertly and is always right on hand for crucial family moments. Shopping has taken the place of hospital visits with Christmas looming as she is an avid purchaser of gifts. We are all looking forward to a downhome Christmas so I hope we can get through that one without any mishaps. Pat had another scan last week and the next showdown is with Dr Barlow on the 15th, so fingers crossed for that one. Go Girl.

fortitude

The family have enjoyed a wonderful few days in Paris. The sun shone for the whole visit making Paris more beautiful than ever. Arc de Triomph at sunset was a bit of a highlight. Eurostar is an engineering phenomena, and very comfortable, but security and boarding was a nasty scrum a la easy-jet. Pat was on great form, even surviving whole days of museum-marching. Her last chemo of this session should start on Thursday and there are further treatments in the offing, so we continue to be optimistic about her outlook at the moment. Hurraah!

and on

Apologies for having neglected the bloog recently. We have been enjoying a precious spell of normality and are all grateful for that. Pat's health continues to hold. She's had five out of six chemos for this treatment and so is quite weak with all that. Her spirit is still strong and she bears up well. The last scan result she had was positive and she continues with her diet and regime. We are all off to my sister's for the night tomorrow and on to Paris on Wednesday for a few nights. We are all looking forward to it - I want to see smiling faces and lashings of bonne-hommie. Love my wife

by

Life here chugs on in a surprisingly normal way. We are each busy with our different bits and Pat's illness is mentioned only in brief asides to check her medication or travel arrangements. No debate is required and although we are permanently stalked by the beast, we turn our backs and focus forwards. We are hoping to get away for half-term and Pat has put down a deposit for a Glastonbury ticket. All things are possible. Pat is up in London this weekend with college friends Linda and Luciana. They will be shopping, drinking, laughing, smiling, enjoying some nice restaurants and perhaps a dash of culture thrown in. Thank You Ladies and another thank-you to everyone else who has been there for us - a rod for our backs in this difficult time.

so much

Life is all about how you feel, so while things are going well we certainly feel well. It was occupational health who put forward a two day week for Pat and I think they pitched that just right. Quite tiring for her but more than made up for by the level of fulfilment she feels and (I suppose) the energy felt from meeting a new group of students. So all is well with us while we try to balance limited energy resources with trying to make the most of each day. Pat has been out on Breeze who remains a grounding force and karma source for us all. We have also enjoyed the company of Claudia for a few days - always entertaining - they've enjoyed some nice days out and have left the sibling spats of yore behind. We took Lily to compete in an (equine) cross country tournament today. She bravely overcame nerves and excitement to finish with a clear round - well done. Felix hasn't reached his pest control quota and is looking for a vocation. Pat is on a drop down regime for her steroid dose and we are watching her symptoms carefully as this is where she has gone wrong in the past. Life is a miracle and each moment must be celebrated.

tell

Pat's health is holding well while we cross this little bridge over into the working family mode. Pat has her first day back with her students tomorrow, I hope it passes well, as it could give her a boost. Her motivation is mostly the will to be normal and a desire to contribute rather than any sense of duty. This is all good and I'm proud to see her picking up her life and getting on with it. She is a seasoned warrior now,and two years since her primary diagnosis, I marvel yet at her resillience. Her quality of life is good - keep it up, Pat.

onward

Back to reality with a bump today as Pat heads in for another showdown at oncology. Scan results and pre-assesment for chemo tomorrow. The news is spun positively, no growth in the brain tumours and a reduction in the swelling. This is good although I am beginning to question what we are told, and the manner of telling. For the moment though Pat has no symptoms and will drop her steroid dose slowly. She is even planning to go back to work next week. They have covered the teaching and she will just do two days a week as a language assistant, if she can arrange transport. Our break in Scotland was fulfilling for all of us, despite the exhausting drive. Since then we have been busy with the wedding of Buchan and Jessica Dennis. With perfect timing the sun shone on two hundred guests outside the church and everyone enjoyed an uplifting and celebratory day. Pat excelled herself for most of the evening on the dancefloor, while Felix and Lily waited table gracefully. Felix had a few ales and joined us to pull some dance moves - good value. We move positively onward.

willful

The summer races past in a blur of activity. I have just the usual work/life rush, trying to finish bits before we leave for Scotland on Friday. Pat is busy about the place as normal. Tomorrow she goes in for her scan, followed by a blood transfusion, recommended for her anaemia but should also help her general resilience. We will head off on our family break unaware of what the scan shows and keen to put it all to one side and enjoy a fairly normal holiday. We are staying in a farm cottage on a highland estate c/o the Bishops. I've got a munro to bag, Lily has some ponies to ride, Felix has some wildlife to shoot at and Pat has trips planned, friends to visit and a family to cherish - as we do her. Then we're heading back for a big wedding on the 29th. The whole situation seems to be on hold while things are steady and that is fine by us - fortune and fate both owe us a favour. No internet up there so even the blog will be on holiday.

release

A wonderful couple of days away for the seniors down at Studlands on the Isle of Purbeck. In beautiful and relaxing surroundings we leave our woes behind, living, as we've become accustomed to, in the here and now. We enjoy good food, each other's company, reading and nature walks. Pat is still strong in herself, but her thinking can be muddled and she seems flat following chemo today, although still manages to cook dinner as Lily and I are returning from the last day of Pony Club camp. Overall Lily did really well with her new horse, looking great in the show-jumping this afternoon and generally exhausting everyone with her ebullient personality. Felix has also had a fulfilling time in Germany and we'll be back to the full compliment tomorrow. Liver, Guinnes and other good foods for Pat tomorrow as her bloods have shown her to be anaemic. Love my wife

peace

There's an unusual calm about the house tonight. Felix is away on a sporting holiday in Germany until late next week, so that's one ball less to juggle, and the girls are at Andrea's house on a Mama Mia night ( late substitute for birthday beach bbq ), I'd swap that for an evening of peace anytime! My beautiful wife continues to be strong in body and soul. She impresses all the locals by being about the place either on two wheels or four legs; she enjoyed a day out with Felix this week in Ilminster getting him ready for his trip, and today went with Lily on the bus to Taunton to get all the school stuff for next term, as well as being regularly about Shepton and surrounds on horseback. Lily is away at senior Pony Club camp from Sunday, and we've booked a couple of nights in a nice hotel at Studlands just the two of us. That will be a rare and precious time and we are both looking forward to it. Chemo next Wednesday for Pat and a scan on 19th, following which there is a short calendar window for an Ireland trip. Long may we look up and forwards.

It's been a busy but pleasurable weekend for us, entertaining friends down from Scotland. Good company , a bit of help with the taxiing, and good weather for barbequing on the beach on Saturday. Patti has been in good spirits, not too sideways as yet with the chemo. At the moment she seems to be much less wobbly, which is a result and a source of hope. The pressure of the normal routine is off at home with the kids on holiday, which also helps. Their various events are hard to keep up with, so the taxi driver is just as busy. Lily is always doing some horsey stuff, and Felix is away to Germany with a friend on Saturday - not to mention various social engagements. The mood is positive and we will try to put some dates on our prospective trips tomorrow. We practice guarded optimism . Strong my wife is yet

please

I suppose you might say things have passed relatively well since Pat's chemo. Today has been her first day feeling really rough, although energy has been low on other days. She manages well, contributing fully in family life at the crucial moments, putting up well in front of the kids. They can see that she is weak though and Felix in particular is very touching in his concern. The other half of this treatment is on Wednesday, and she has Occupational Health and other appointments Monday Tuesday so it will be a taxing few days for her. Gail Roberts, an outreach nurse from the hospice, visited on Friday and Pat was more open with her this time, she is calm, concerned and helpful, and a link is established. We talk alone very briefly, again she is quietly reassuring; help is not far away when required. Our trip to Switzerland is quietly shelved but we plan summer trips to Ireland and other less ambitious targets. Pat is still having wobbly episodes but stays positive in her mind. I can't help being more pragmatic and have some low moments with it all. Not for the first time she is helping lift my moral today, I take heart from that and try to lift the mood. We both need a success from her treatment, but know that there is no option but to cope as best we can with whatever fate delivers.

then

Busy time for all of us just now. A great weekend away in Cardiff, catching up with old friends, shopping and lunches for the girls, Test Cricket for the boys. In general some respite from the situation. Felix' birthday passed well today, if not rapturously. Pat made up by being generous with his gifts and a range of birthday events. She is managing her limited energy expertly, out visiting today with enough energy left to make Felix' day special and his cake. She is weak now though, still having wobbly moments and dreading chemotherapy tomorrow. It will be a difficult week - I'm pretty ragged from the work, cook, shop, wash, taxi regime which runs 14/16 hours seven days at the moment. Nothing I can do for her is too much though, and I wouldn't know what to do with myself if were it any other way. Pat remains positive in herself and I take courage from that, from her presence and from the positive nature of the human spirit. Mercy

raw

Yet another incredibly brave performance by Pat today. Right now she's cooking dinner after shedding a few tears over Jacko's memorial service - cheesey I know but we have had a few dancefloor moments to his songs over the years - most recently at the village disco at Glastonbury. Contrary to what we were told yesterday, we find out from Dr Graham that Pat has two lesions on the cerebellum, near to the part of the brain that deals with balance. This could be another reason for her wobbliness. Pat is offered combined chemotherapy GemTaxol. She's not really in a position to refuse, even though this is full-on chemo with all it's hideous side-effects. "Is it a course of six treatments?" Pat asks, the answer is uncertain and subject matter moves on. We are not left without hope though and who knows what Pat's treatment will bring, a new drug TiVerb is also put forward, following consultation. Paliative care is again mentioned and Pat seems more open this time - she needs more help and an outreach nurse from the hospice could be the answer. Her spirit is undimmed and she looks great, we plan for the weekend and Felix' birthday. What is true?

show

It's been a tough few days for Pat. Headaches and wobblylegged episodes culminating in admission to hospital on Saturday night. In retrospect it would be fair to say that this visit was unnecessary as it arrose over some confusion about her drop-down dose of dexamethasone. This information was given to Patti by her consultant at the hospital bedside, but not written down, nor confirmed to me, her carer. Anyhow we think she should have been on one a day, not one a week. She is home now though and full of fightng talk as ever, not ready to give it up just yet. Her scans have shown that there is no change in her head just now, good news, but the body scan shows a lesion on the liver. Normally devastating, this news has little effect - 'tis but a scratch. Tomorrow we see Dr Graham again to see what treatment she will be offered. I'm sure she'll take it as it is part of what drives the hope vehicle and anyway "it's different when you have dependants" she says, and I realise how much of her fight is for the kids and the people who have helped her. Lily completed the Sun Walk in Bristol yesterday, really enjoying her day and raising well over £100 for charity. Pat would have liked to be there although it was never a huge personal goal for her so she's not too upset over missing it. Felix is on work experience at Bonner's ( renouned butchery ) I'm hoping he'll be able to lift their award-winning banger recipe

full

Glastonbury Festival passed off well for the Powells. It was quite a logistical challenge just getting everyone there but we managed it with a little help from our friends. Weather was mostly good, Pat was on good form, and the festival itself didn't disappoint. Neil Young was a highlight for us, his music played on family holidays, but we saw loads more and really enjoyed the small bits and the social side of the festival, bumping into old friends and making new ones. We've all been a little jaded this week with come-down, tiredness and some hot days at work. Felix is out and about on the Quantocks tonight doing his Duke of Edinborough challenge, and Lily is sleeping soundly having had her first ride on her new horse Molly who came yesterday. Pat had a body scan on Tuesday and they'll tell her what treatment they can offer next, probably chemo. She's worried about what is to come and has been quite weak with the flurry of events around summertime. Butzi is here for the day tomorrow, Cardiff next weekend, birthdays,and all the while not receiving any treatment. I look up some stuff on the net, its not easy reading but I feel more prepared afterwards and can hope that she doesn't suffer too much. With all this Pat is doing the 10K Walk for Life in Bristol on Sunday - anyone want to sponser her? I sure hope that goes ok, I think I should go along as back-up

people

A great weekend away for us all in Suffolk - thanks Jo - families joining together again, food, chat, wine and some relaxed touristing. Pat on good form and finding some energy as it's a while since she had any chemo. A busy week this one, horse, visits and will signing today,engagements, appointments and getting ready for Glastonbury for the rest, while Felix and I sit exams tomorrow and Wednesday. An old friend of mine Saint Steven of Henwood - may he walk on water -has come up with a ticket for Pat for Glastonbury. She's brave just to consider it so I'm surely hoping things go well, a strange emotional mixup of excitement and trepidation. Pat will have a body scan next week before they decide on her next course of chemo - I'm not sure she wants or can stand any more, and less sure how much good it can do for her. Perhaps a trip to the Healing Field first. We areall going to bed now.

Goodnight you Queens of Somerset

Goodnight you Knights of Framlingham

win

Pat's birthday party passed off a treat for her on Monday. We were able to have drinks on the lawn but decided to eat inside as it had been raining and the weather was cool. The ladies were all on top form and Pat was as much like her old self as could be expected. With about twenty guests the evening had it's own momentum and vitality, so I played it low key, keeping the kitchen running with Felix' willing help. There was food, good company and laughter aplenty. Pat received an astonishing array of gifts and cards which show what high esteem she is held in. Thanks everyone for coming, and it was good to have some overnight guests. The next day was difficult for Pat with everyone going back to their normal lives. Dr Graham, her consultant phoned on her birthday to tell her she wouldn't be able to have targetted radiotherapy due to the number and positioning of her tumours. Another blow on the chin for Pat, but she just bouces back and pours her energy into finding a horse for Lily and was even for a hack out on Breeze yesterday. We've no idea how long her health will last so it's make every day count at the moment. There's even talk of Glastonbury Festival so I'm looking into finding her a ticket. Anyone got a spare one? Come on Pat

colours

It's been a tough few days for us down here. Pat seems stable but plagued by the usual side effects of the steroids. All the while her mind has been hoping away for a miracle so a jolt like this brings home some terrifying realisations.There have been tears, anger and desparation. We have both been struggling with the mental side of things and have had to force ourselves into some difficult conversations about Pat's fate. It's all so unpalatable and we don't linger over the subject matter, passing quickly over the main course and onto more immediate and trivial items. The here and now becomes more relevant and we make the most of a busy Sunday, trialling a beautiful cobb for Lily in the morning and going onto the Green Scything Fair in Muchelney and a quintessentially English open garden and cream tea experience in West Lambrook. The stiff upper lip is much in evidence and I hope it will help get us through what is a huge day for Pat tomorrow. Wonderful Pat

back

Pat is back home with us tonight and how glad we are to have her. She has seen her consultant today and targetted radiotherapy is put forward as a possible treatment following further meetings. But for now she is back with avengance, joking and playing down her episode. She deals with a string of phonecalls while I cook and seems fit and strong, just her old self. Still the unfairness of it all seems hardly real. We continue to make plans, focusing on making Monday right for her, continuing our search for a new horse for Lily, and seeing to jobs in the garden.My love and admiration for her keep growing. I put off calling the outreach nurse, no hurry with that just yet.

where from

Just as she was feeling well and making plans, a hideous jolt back to reality for Pat yesterday. She is comfortable and well cared for in the brand new Beacon ward tonight following a pretty rough night in the resuss room of A+E last night. All her symptoms of last December came back, starting with the visual distortion followed by the crushing headache and retching of bile. I telephoned NHS Direct hoping to see an out of hours Doctor. They sent out paramedics which was justified when she had a seizure a short while later. I've never seen anything like that before so I was pleased they were here to deal with it, but shocked nonetheless.They've put her back on the dreaded dexamethasone which has at least relieved her symptoms so she's feeling fine and wanting to come home today. Doctor's meeting for her next treatment decision is tomorrow, so we are not sure yet when she'll be home. She's focused on being right for her birthday party next Monday - I surely hope that works out. All the nightmares I've been avoiding have loomed back into focus today. Another irretrievable step must be taken, the M-word comes up in a painkiller discussion, and the H-word creeps in with one of the care nurses.Pat is on good form when I come in with the kids tonight and we laugh and cajole in a friendly way. The H-nurse is on my call list, but she can wait til tomorrow, right now I've got to focus on the quality of life that can still be delivered to Pat

onto

Goo news - we are told - on Pat's scan. Her tumours are stable, that is they haven't changed in size since her last scan a few months back. Pat is happy with this news and I am thankful at least that nothing awful is imminent. The doctor can't give us any assuraunces how long her health will last and advises us to take our holidays in the earlier part of the summer. They also can't tell us wether the tumours are dead or dormant - probably dormant. We are told, politely, that they'll be back. Miracles are out of stock, even in Musgrove's new beacon center. We will take positives from this and keep Pat on the diet and routine that has kept her going thus far. Last chemo next week. Rock on Patti

out

We're all just back from enjoying a cultural weekend in Bath. We were staying with friends and seeing some of the Fringe Festival. Quitea result just to be there openly but we spent the weekend catching up with old friends and bumping into people without any akward moments. Back to reality now though and it'll be a nervous time until we get the results of Pat's scan on Tuesday. Once again the possibilities seem so open ended. I hope we are left alone for the summer to enjoy some quality family time. This would be the least of all that Pat deserves considering how bravely she has fought, even through all the cumulative wearing down of chemotherapy. On our return today I catch her holding back the tears while folding the washing, I feel the love and admiration I have for her grow as I hold her and utter the three magic words

spare

A thankfully quiet weekend for us to rest and catch up on things here. The kids have both been busy with their social lives, so a bit of a chance to catch up with the house and the garden. Patti was able to have her chemo on Thursday, bloods, pre-assessment and treatment all in one day which she organised and was much better for her. She's been ok so far but took the last of the steroids yesterday so may have a couple of tricky days. Her spirits have been good but energy levels struggling a little. I think the cumulative effect of it all is starting to hang heavy. I surely hope she has a period of good health afterwards. We are all looking forward to a day out at Sherborne Show tomorrow - picnic with Sue and Rob - hope the weather holds. Pat has a scan on Tuesday, which once again is critical, but won't have the results until the followng week. Again the possibilities seem very open ended so we try not to anticipate but be patient for the results, whatever they bring

most

Pat was unable to have chemo on Wednesday with her white cell count low again. It still took the three visits just to find that out so Pat was hacked off with it all then. She has picked herself up admirably since though, having a good ride out yesterday and a proper ladies day out with Jane Taylor today. Lily's pony was finally sold on today which has also helped with the general mood. A step forward as she was outgrown but also the passing of a familiar friend. We celebrate with a chinese takeaway

please

Sorry I've neglected the blog as I've been somewhat depressed trying to deal with the aftermath of a nasty smash in the lanes with my truck. No-one really hurt so it's as nothing in the bigger picture - just one more straw on a heavily laden camel. We all enjoyed a great week with Claudia, some familiar company for Pat and someone else to help her get around. A few moments of sibling stress but on the whole quite heartening. Pat had herseptin on friday which went ok, but marked what would have been her last treatment - one year in - had things not changed for her. She will carry on indefinitely with herseptin and is quite low with the continuing dominance of all the medical stuff in her life. She has appointments Monday, Tuesday and last but one chemo on Wednesday. She's had a few headaches and 'sensations' which haven't helped with the general mood. I try to stay positive - ridiculous - but struggle desperately in private myself

how

It's been quite a quiet low-key week for us down here. Pat has done really well getting over her chemo. She had a difficult couple of nights with the steroids,but since then she has just had tiredness and the usual nausea to contend with. Pat even managed a long ride out with Laura yesterday. Pat has been in good spirits and family life has been reasonably calm, aside from the coming and going of the children. We are all optimistic about Pat's health and while she has it we are happy, and are thankful for every day. We look forward to having Claudia here tomorrow, and a weekend visit to Nunni's. Long may we love her

our

Pat had her pre-treatment assessment and her chemo straight after today. She was happy to be getting on with it and in fact only has two more to go. With luck her treatment will finish at the beginning of June. We discuss a summer without chemotherapy of good times and opportunities taken. There has also been the odd headache for Pat this week but the atmosphere is good so we play it down. There has been a good mood here in general, with Pat having her health and the children enjoying a break from school. Hardly any moaning going back either which is a sign of them being well rested. Pat even mentions going back to work and the mind flits back to just a short time ago when we were such a normal family getting through life. Now reality is more difficult but some of the options are reassuringly familiar "what are we having for dinner tonight ?" and "where can we go no holiday this year ?"

light

All is steady in the Powell household at the moment. We all had a pleasant day out to the folks in Salisbury yesterday - thanks, and overall a pleasant mix of rest/social/garden/hobby. Lily's pony is up for sale ( moving up in size ) and she made a great job of showing her for the first time today. Felix went for a river swim and a tandem ride with his mate Tom. Pat rode her bike six miles and her horse six miles, so quite an active day for her. I just Taxi/shop/cook as normal and try to strke some jobs off the to-do list in the garden. It's beautiful out there in the spring and we are all relishing the change in season. Pat has been full of energy and in great spirit, at times like this fate seems cruel and uncaring. In positive mode the human mind pitches up random ideas for the future and i have to bite my lip when Fate suddenly looms it's ugly head. But still our aspirations live on powerfully, just in a restricted nether world of our own. We plan for tomorrow and for next week - we work hard in the here and now, the only place anyone can ever really live

past

A wonderful couple of days in Manchester for the Powell family. Kind thanks to the Foleys for hosting us so graciously. Pat's reduced dose has been much kinder to her so she was able to find precious energy for some special time with the families all together. Luch was also up with two of hers so it was quite busy, but all of the children interacted really well despite sizable age gaps. We ate out superbly ( Indian and Italian ), had an alternative tour of Manchester - even fitted in some shopping - but most of all great company and chat with some of our dearest friends. Late home last night so all a bit tired today but Pat was still able to cycle up to the farm and back and ride out with Lily. Pat has been radiant with it all so we will try to do more of this sort of thing. Any good times are to be cherished and this weekend has opened doors as to what is possible. We stand looking bravely forward ready to grasp every piece of joy from each day ahead of us

speak

At last Pat has been able to have her chemo. She's been maxing out on vitamin C and lashings of superfoods. Nasty chemo but she feels better to have had it. A slightly reduced dose as she came back so slowly, although seemed relatively well. She's fine tonight and ate a good dinner but will feel pretty rough in a couple of days. Now we have holidays and social stuff coming up so I hope she doesn't go down too badly. Pat has been keeping up her spirits really well, being busy round the house, engaging the kids and riding her beloved Breeze. Joy

road

Last night I read up (again) on secondary brain cancer, it's all hideously hopeless and I resolve to make the most of having her around. She's got nothing on today so I put today's work back and we have an unheardof day out. We go down to Sidmouth which looks great and we enjoy a walk on the sands and a bistro lunch with some other old folk. The mood is calm and quiet as we bask on the pebbles at Beer, letting the moment sink in and holding our thoughts in the here and now. After school Lily lunges her pony and Felix's school team come second in the rugby tournament

what?

Sorry eveyone but I had a complete lunch trip on your comments, having forgotten completely how to get to them. If anyone is still interested I'll be keeping an eye out and posting them up regularly now. Still no Chemo for Pat this week with the white cell count still down slightly. She was naturally upset and frustrated with it this morning.We are left a little in the dark as to why it hasn't come back up and there seems to be nothing we can do to get it back up. I try hard to find healthy things she likes to eat - not easy. Her appetite still hasn't really recovered - today I read this can be the wisdom of the body trying to starve the tumours. Could this be true? All of our knowledge can feel so limited. A difficult hour was followed by a horseride diagnosis so I took Pat and her bike up to the farm and toddled off to work. Breeze really is an unbeatable elixir for her and her mood was greatly improved. Sue came over and took Pat and Sophie ( the dog ) to Ham Hill for a walk - all of it a great help for Pat. She's been trundling around quite a lot on her bike, which she also really enjoys now, mostly just one way to Shepton or back, but she also does both if no-one's passing. Pat has a good dinner and determines to make the most while not having crap chemo. She's not long beaten and is sure to come back after setbacks. We look forward to a trip to Manchester at Easter but the timing's all messed up now and I hope she will still feel well enough to go. Meanwhile Felix has raised £78 for Comic Relief by going to school as The Joker. It's a scheme entirely of his own mind and worked out by himself - so he is heartily congratulated. He sources the outfit from charity shops and I refrain from telling him his purple jacket is an old ladie's bingo coat. Well done Felix - a true Mother's Son

it

No chemo for Pat yesterday as her cell count was still down. So they will put it back a week and possibly adjust the dose as well. A little frustrating for her with a feeling of not being informed about her care sufficiently. At least she has her health though and has been pretty active with it. On her bike again up to the farm and back for a ride on Breeze, cleaning out the fridge, doing the washing etc. We look to seeing Claudia, who is arriving tonight, Mum and Gordon on Sunday. Life
N

where

A great weekend away for the family and even some good news to follow it up with at the hospital today. Oedema on the tumours reduced and some reduction in the tumours themselves. For some reasom they didn't use the contrast dye and so the scan was said to be of limited value diagnostically. Pat is always treated very well at the hospital and we certainly admire all those in oncology for doing such a difficult job, but her healthcare never quite seems to fit together properly. I suppose it's just the permanent stretch the NHS is under. A positve result this time though which is fantastic. Pat's white cell count was down so they may not be able to go ahead with her treatment tomorrow. That would mean a week's delay which is another reason for not planning too far ahead as the timting isn't necessarily predictable. They've said that she will continue with four more doses of Carboplatin and then they will look again at her. That will take us right into June - I hope she isn't too run down with the whole thing by then. Thanks to Pete, Luch and Linda for hosting a great weekend for all of us in Cardiff. We had a quite boozy night out down the bay on Saturday, even Pat had a few drinks and lasted till nearly three in the morning - what a star. Plenty of interaction between all the kids and a general atmosphere of Bonhomie prevailed. We followed it up with an afternoon out at the outdoor Welsh Culture museum on Sunday and even had time for a short trip to Barry island. Pat enjoyed it so much she didn't feel like coming home, but was of course in good spirits today although very tired. There's plenty of fight left in her yet

through

A good week relatively so far for Pat. She's been in fairly good spirits. A couple of rides out on Breeze and a little extra energy for ccoking, washing and even cleaning, her choice of course. We are all pleased to have her about the house as normal. She's able to give attention to the children's activities and admonish any poor manners at dinnertime. We look forward to getting together with Luch and Linda et al this weekend. Love Pat

for

Pat had her scan today which went quickly and herseptin in the afternoon. She's ok with that except her veins are all a bit bruised. She won't find out anything about the scan until pre-treatment a week on Monday, it's all very low key for such crucial information. There's been highs and lows for Pat this week. Friends visiting and an overnight stay at Sue's which she really enjoyed, good company, food and friendly chat. But she has started to get some cabin fever here with the house empty each day. We agree she has to find some more to do with herself but her horizons are quite limited once practicalities are considered. Certainly flying is out and I'm not even sure how much she fancies traveling alone. For now we can think over things, she's riding with Laura tomorrow and we're looking forward to Cardiff next weekend, the kids are off school Thurs/Fri so we hope to make a long weekend of it. Some headaches this week which worry us both but we play it down and move on. Brave Girl N

pass

We struggle on by for another week. Pat's chemo hasn't hit quite so badly though. Steroids better than the alternative so bad is it. They leave her thrashing around at night when she should be sleeping, but at least the worst of the sickness is suppressed and she is able eat. Pat saw Dr Barlow, who diagnosed her secondary cancer in December, on Monday. I think she asked a few questions, about driving for instance, none of which had positive answers. The mind will hang on to positives even when they aren't there, such is the human psyche. A week of tough realisations has left Pat struggling at times, but she always pulls herself out of it and gets on with what's next. She continues to be supported by sensitive, helpful friends whom she couldn't do without. Thanks everyone. It still seems impossible to make any sensible plans with such an uncertain future, maybe this week will give a bit of a hurry-up to any of Pat's hopes that can be realised. Some more uncertainty about her future treatment also, with a scan scheduled unexpectedly for this Friday and Dr Graham on holiday the following week. We must remain hopeful.

invocation

A good week for Pat, a couple of good trips out with her brother Ernst. We all enjoyed his visit, very low key and undemanding. He cooked dinner for us all one night and seemed to know his way around the villages of south Somerset without any help. He looked at Patti's scans ( he's a radiographer ) noting that her walnut , as we call it, has calcified following radiotherapy which will hold back cell division, I think. Pat has been well enough for a couple of rides out on Breeze. She has to do an energy muster for this and is usually pretty done after, but surely nothing could help more than being out in the fields with the wind in her hair. Breeze had a new saddle fitted this week, overdue, which Pat paid for out of the fund. As saddles go it was cheap, less than £300, and nothing gives her more pleasure, so thank you all contributors. A merciful week off from the hospital for Pat, although the gloomy shadow of her next chemo on tuesday is starting to hang over us. Pat has been relatively good this week but really nothing like her true health, and I'm starting to realise she may never be back there completely. Only time will tell us how her treatment turns out and we must hope that one of these treatments will produce something with a lasting effect. It's a long hard road for us all, surely our endurance will have some reward

term

Another busy week flashes by and I can hardly believe it's a week since I posted. Certainly a much better week for Pat, stronger each day I think. She's learnt to direct the energy she has better, resting when necessary and always early to bed. Pat was even strong enough to have a brief hack out on Breeze on Tuesday, and a nice day, and lunch, out with Beulah on Wednesday. She's certainly not herself energy-wise, but managing it well considering. Mood was better too, but still a few low spots in there. Difficult to plot positively with the calendar like that but we've got a definite for Cardiff with Luch and Linda on March 14th. There are other possibles hopefully to be firmed up soon. Ernst the enigmatic, Pat's brother is here from tomorrow, so we won't know much but hopefully Pat will get something out of it. High point on Thursday when Pat agreed with her counsellor that she's getting on really well and doesn't need to carry on weekly sessions for the moment ! Pat was really pleased with that and right to congratulate herself. She will see her again when she has her next scan, which should be in around eight weeks. Hope stay strong

see

A hellish few days for Pat but she seems now to be coming slowly back to life. She has been able to eat, just a little, and has gradually been feeling better. She even came up to the stables with Lily and I to see the horses,who are pretty miserable themselves with the weather. We were both doing something wrong so I felt then she was back with us. They give you a short course of steroids - loathesome - to help with the sickness but again she had conflicting advice from the professionals about taking them. She was fine after day one and so dropped them but that was probably wrong in hindsight. Hopefully next time if she finishes the course she won't be hit so badly. The H-word is mentioned at a dark moment, but it's a bridge we don't need to cross yet and I steer the conversation away. Our minds must rest on positive goals and we may in the next few days be able to make plans for the good calendar weeks, writing off one in three. May Hope stay long with us

mush

Poor Patti, a terrible couple of days for her. Unable to eat and feeling dreadfully low with the sickness and dark mood that comes alongside bedbound illness. She only went out yesterday for her counselling and was sick at the hospital and so regretted it, today she tried hard to sit through Rocky with the kids but understandably didn't make it. I urge her to think forward to when her health will return - hopefully tomorrow - but it's hard work and in difficult times her ultimate fate looms to the fore. We hope for better things to come

morph

Patti seemed to deal well, if a little impatiently, with that awful shit that is chemotherapy. Tired but sound yesterday. Today she had a nice outing to Street with Butzi, but was pretty done in by the afternoon when they got back. She wavered a little feeling sick and ill lying in bed, and I had to work hard on her to get her to join us for dinner. Hopefully there'll be just a day or two of this each treatment and she'll be back with us. Brave and beautiful girl

must

Patti almost sick with nerves going into today's appointment, news is not all bad but still sobering. Without seeing any images we are told that radiotherapy has shrunk the tumours, but they can still be seen indeed one still has swelling (oedema) around it. Chemotherapy - carboplatin - is put forward as Pat's next treatment. Dr Graham offers to delay if we wish but recommends starting right away. We agree to think on it but the consent form is signed and Patti doesn't seem to need time to think. Bloods and weight are taken for dosage and an appointment for tomorrow comes up. Patti is keen to get on with it so she's in for her first hit tomorrow, then every three weeks for six doses. They will scan her again after three weeks and re-evaluate her progress. The good news is that this chemotherapy has limited side-effects compared to what she's had previously, mostly tiredness, which she has become accustomed to. Pat has been steadfast and unwavering through all of this but it's another setback for an optimistic mind so she's a little tearful with the harsh reality of being a cancer patient. Curry and steerage tonight

feel

Another week skips by with hardly a moment to gather thoughts let alone post up a blog. Thanks for your comments, all of these thoughts and messages count double when coming through difficult times. Apart from all that toing and froing to the hospital Pat has had a fairly quiet week. She's been to the hospice to discuss alternative therapies and have a reflexolgy session. It was grounding and quite relaxing for her but the service is poor - only offering a once a month appointment. We didn't discuss the H-word, but at least she has seen the hospice now and didn't mention a bad experience. I hope she never has to go there - which could be the case so I'm told. Mostly it's been a week of nerves for Pat with the appointment coming up. The possibilities at each end seem to be so open ended that the mind tends to fantasise over the possibilities according to mood. Reality will i expect lie somewhere in the middle ground. Any use of the word later in relation to chemotherapy would be a result to me. Elizabeth, Pat's sister, will be here with John this afternoon and will stay until Thursday. They are deeply functional so some time off from the kitchen could be in order.

the way

Just taking a minute or two out of another flat out Saturday to post up a quick blog. Pat's break was great for her and could have been longer. A bit of time being looked after and to process her own thoughts. Any decisions about trips away will have to wait until big Onc. showdown on 2nd Feb, but i've encouraged her to focus on the things she wants to do and not what is expected of her. She had hersptin ( three-weekly ongoing ) on friday, and has her scan and two other appointments next week, so its quite busy for her keeping up with those. She's feeling clearer in the head with the radiotherapy wearing off but also perhaps more aware of something up there. No bad headaches at the moment and she's out on Breeze at the moment. Long may the good times last

my my

Pat has had a few days break in Perth visiting Marianna, her childhood friend. We've spoken each day and she seems to have had a good break away from the crappy pressures of home, instead enjoying relaxing company, rarified air and someone else's cooking. We look forward to having her back, particularly myself, as dark fears and sorrow have been stalking my mind in her stead

isms

well it's been a busy week again for us down here. Our friend Lucy and her lovely baby Ronnie were down from Bath on Tuesday. They all had a lovely time doing nothing too demanding. Counselling for Pat again on Thursday, she certainly gets something out of it altough she finds it draining emotionally. Plenty of family stuff to wade through. Pat's bike has been trialled but not on that crucial hill up to Shepton yet. It feels sturdy for a folding bike and has good balance. She's happy with it so i hope it proves useful.. Pat is off the steroids thankfully now and although a little tired has good health and astonishing spirit. A slight headache this morning and just a moment of fear for the unspeakable future, but that was soon swept aside with plans for the day ahead and the onrush of life's mundanities. She's out on Breeze at the moment so will be smiling and exhillerated as i write...

by here

Big oncology appointment at musgrove today. Pat does a Wyatt Earp style preparation, questions at the ready. However there's no news as such, just seeing how she is and answering queries. So the showdown has to wait. Apart from her Herseptin treatment Pat's next appointment is for a scan on the 26th. They will look at that and discuss further treatments when we see Dr Graham on the 3rd Feb. We are fortified by hope and the indomitable spirit of Patricia Powell

all of it

It's been a busy weekend for us all down here.Pat spent last night at charlton house which was wonderful for her. Good food and old friends in beautiful surroundings. Linda travelled from Manchester and Luch from Northampton so that was a great effort by them in their busy lives, rewarded by a steadfast Pat, ready to laugh and enjoy her friend's company as ever. We hope to have more contact with their families in the near future, but of course planning is difficult so we've just filed a few possibilities. The bike - a synergie - has arrived and been assembled. It looks like it should do the job but we've yet to trial it on account of the weather and pat being away. I myself have been flat out as ever, driving around, organising, kids, friends, washing, cooking - even a well needed hour in the garden today.I still cry in quiet moments but think i am getting through a "will i cope" phase in my head. More to do this coming week.

hello

great (adult) ride for pat and jan today,cantering accross fields, the whole bit. wonderful.Pat has councelling at the hospital once a week starting tomorrow, another sue, bentley this one. Pat gets on well with her and i hope this will help her. not that she seems to need any at the moment - maybe i should take her place .Pat is really enjoying being a proper mum to the kids now that she has a bit more time at home. first fund purchase for Pat today - thanks everyone -an electro-assist bike to get her up to shepton and back, it should be a great source of independance for her if she gets on with it

hello

strong and positive if a little tired today. sue ross came over and took pat out for a spot of shopping (nice fresh veg) and to see to the horses.tomorrow pat is hoping to go riding with jan and her children. no room at babbington house for the weekend which was a bit of a disappointment, but they've booked in to carlton house instead. once again i marvel and revere

hello

we are getting by here, trying to plan a few things for the first 'normal' week of the new year. only monday and friday busy so far - a few blanks to fill in.we are still looking forward to things coming up , linda and luch, pat's college friends, are taking her to babbington house next weekend.still hoping to see butzi before the scotland trip.we are also thinking to get pat an electric bike so she can get to shepton and back. pat's health is returning following radiotherapy and decreasing her steroid dose, she had a long ride on breeze with laura today and has been relentlessly upbeat elsewise

hello

wishing all of you a happy new year. we passed year's end well with smiles and raised glasses. since then just hunkering down for a day.pat hopes to travel to scotland on the 18th, with a few visits pending before that.i marvel at her strength

greetings

new year's greetings coming from the old cider house.hope all your gatherings pass off well.still feeling a little tired but moral standing up quite well in the powell camp.had a nice day out with tom and andrea clark yesterday, they're staying down in salcombe for a few days. food, chat , shopping and a bit of sunshine. tonight we are pleased to be going over to the dennis' for new year's party.looking forward to the new year with hope.

Christmas Day

Hi Everyone, Here is our Christmas Day at The Old Cider House. We have had a great family day together. Nick cooked the turkey in the bottom oven of the Aga and it was really delicious. We had a working party in the kitchen - Rob and I were on vegetable duty - I never know how we manage to put away so many spuds but there weren't many left. The presents under the tree were the biggest pile I have ever seen - we laughed at how many gardening books Nick got this year, if he reads them all he will be the next Alan Titchmarsh. Mum was busy sorting out Felix and Lily's new laptops which is her favorite job, and Gordon managed the biggest crossword ever with only a tiny bit of help from Google.

Pat is feeling much less tired now and was on great form today. She is looking forward to a trip to Scotland in January with her friend Sue and seeing her sister Elisabeth very soon. After lunch we played trivial pursuits (after the Queen's speech) and chilled out by the fire. Lily, Nick and I went up to see the horses while Rob did most of the washing up. See Nick's new hat in the picture, a present from Pat, he looks very handsome in it.

Hi from Sue

Hi Everyone

Just had a chat to Nick and wanted to let you all know that Pat has now finished her radiotheraphy and thankfully no longer has to trek back and forth to Bristol everyday. A big thanks to everyone who helped with the driving there and back. The radiotherapy has made her very tired and she has had some days when she has had to stay in bed and rest.

Today however, she had a good day and has been up and about outside and the family have had a restful day at home together. Lily cooked her first roast chicken dinner today and apparently it was very good too.

I hope you will all leave feedback on the blog for Pat and everyone to see. I am experimenting with adding photos to the blog so here goes.