It’s a new year, it’s a new day, it’s a new life ……. and I’m feeling good!

Well, not exactly a new life, but a new attitude towards life.

Before moving on to a new year, time to say goodbye to friends that we’ve lost and remember the love they gave us.  Ellie, Bramble and Hastings.  So sad to have to let them go.


Despite reservations (mainly from my daughter) I’ve kicked the Tamoxifen into touch.  Too many debilitating side effects.  Severe hot flushes, day and night …… relentless.  Difficulty in sleeping and tiredness …… unsurprising considering the hot flushes.  Anxiety and depression ……… resulting in drinking too much!   After 3 weeks of being Tamoxifen free, I started to feel so much better.  So then I made the decision to gradually wean myself off the Sertraline.  This antidepressant drug has similar side effects to Tamoxifen and in addition, can make you feel suicidal.  I experienced that last year.  But now I cannot believe how much better I feel – and realise how unwell I have been over the last 18 months.  I actually feel more like my old self again ……. albeit with high levels of fatigue and low energy levels.

But I’m working on it.  I need to be as well as I can be, because 2018 is set to be a fabulously exciting year.  Sticks and Stones, Jo’s first book, will be released as an e-book on 12th May, a full 3 months before the hardback release on 12th July.  She has book deals in 8 countries world-wide, whoop whoop!!!!!  The Penguin marketing team see Jo as ‘the complete package’  – sorry to embarrass you Jo, but that made me blub…..  I am so proud of you as a woman, for being who you are, never mind being an author.  Enough said.  So Grannie needs to gird her loins, boost energy levels and be ready to spring into action should grandsons require attention, taxi services and feeding whilst Jo is on the road promoting her book. Sticks and Sones – read the first chapter. I haven’t yet, I want to read the whole book in one sitting!  And check out  Jo’s blog

I had been looking forward to Christmas for the first time since Tony died.  It was scuppered a bit by me coming down with the rotten cold that has been doing the rounds.  But we managed to fit a lot in as a family. The week before Christmas,we had a lovely lunch with Rosemary in Nuneaton.  She was gobsmacked at just how much food the boys can pack away.  Then a Christmas meet up with members of the Jakeman family (Jo is publishing under my mum’s maiden name of Jakeman).  Seeing cousins who I had not seen for almost 60 years (that makes me feel sooooo old).  Thank you Uncle Mick and Auntie Mary for organising it.  What a fabulous pair.


Christmas Eve at Grimsthorpe Castle was ‘feudal’ (to use a son-in-law James quote).  Invitees were estate tenants, workers and our family members. I qualify on 2 counts!  A proper carol service in the Vanbrugh Hall delivered by Andrew the local vicar (his church is part of the Grimsthorpe estate).  A HUGE Christmas tree, mulled wine, mince pies, chocolates and Lady Willoughby de Eresby giving out balloons.  Graciously accepted by Danny.  Politely refused by Alex.


And a picture of Rose Cottage’s more modest Christmas tree, decorated by Guillaume


Back home for supper in front of a roaring fire, the opening of a couple of presents and an evening of Trivial Pursuit, Harry Potter version ……loved it!


Unfortunately, I then came down with a rotten cold.  Struggled down to Mass on Christmas Day with Dottie, James and Danny – I was reading the lessons and bidding prayers and managed to get through without sneezing or coughing.  Jo and Alex were left at home in charge of the turkey.  Lovely lunch accompanied by a bottle of Bollie, a wedding present from Becks and Amy, which had been put on ice waiting for an appropriate celebratory event.  So a toast to Jo’s book.  And a glass raised to Tony.  The Bunts went home early, and I went to bed.

New Year passed by uncelebrated as I spent most of the time feeling rough and in bed.  Poor Dottie went back to Cumbria with my cold, I guess there was no way that she could escape the germs.

I don’t do New Year resolutions, but ……

I AM going to do something nice with family and friends once a week.

Birthday lunch at The Six Bells  at Witham-on-the-Hill with Joy and Steve on Jan 5th.  A belated birthday lunch at The Queen’s Head Sleaford with Helen and Caroline Friday 12th.  There seems to be a theme developing here ……  Star Trek on 16th with Ruanne.  And a Burn’s night supper at the church on 25th January.

And I’m raising a finger or two to people and things that wind me up, draining the limited energy that I have!  That may seem selfish.  But hey ho.

A ‘good stuff’ round up of 2017:  

A call out to Heidi, Nat and Char – a once a year meet up is just not enough!  So good to meet up with the old team before Christmas.

She doesn’t do internet stuff, (a self-confessed Luddite), but my sis Dottie is an absolute brick supporting both me and the Bunts.  Looking forward to a planned trip up the Norwegian fjords in May.

So many people have been here for me and I don’t want to leave anyone out.  But special mentions to Jo and Guillaume – pruning the walnut tree, stacking logs, digging garden.  Stuff I can’t physically do.  Fr Clem, Fr Pat and Sue …. special people, special prayers and masses so appreciated.

Lucille and Andrew, Dave and Jenny, Butch and Sally …. great food shared with great friends.

A fab catch up with Karen, Eleanor and Sarah.  We will do it again … and soon.

Pete and Jan, Robbie, Johnny, Felicity, Corryn, Terri, Mark, Sharon ….. so many more people.  Thanks to you all for being there.

So, what next?

I’m back to see Pam Woodings (Oncologist) on Thursday.  Results of CT scan and a forward plan. I am totally laid back about the results,  I guess after 4 cancer diagnosis and a scary lump that turned out to be ….. just a lump …., there is no point in trying to second guess. We’ll see what other cancer drugs are on offer.  I’m running out of options but Pam did say she has another one in mind.  As I’m feeling so well at the moment,  I’m willing to give any drugs a go …..  and then assess whether they’re worth it, quality of life wise.  We’ll see.

Finally …. Thanks to St Barnabas Hospice and my Macmillan Community Nurse.   I had a Holistic Needs Assessment and was linked into loads of support.  counselling, Mindfullness, Advanced Fatigue Management,  Relaxation.  Grateful thanks to all the professionals – and those of you who have been on the end of drunken telephone calls!  You know I appreciate your non-judgemental support ….. xxx



Shrinking tumours. Sticks and Stones. October 2017….. a month to remember for fabulous news


Discovering yet another lump in my right armpit in September was not what I wanted to find.  A 3rd cancer in 18 months would just be so unfair!!!!  Did this mean the Tamoxifen isn’t working? What’s the next treatment option?  If it’s come back so quickly, has is spread?  Derby turned up trumps yet again.  A speedy appointment with a consultant whose name I can’t remember but a dead ringer for the Rev Richard Coles.  CT contrast scan booked.  I was dreading it after the last one (5 failed attempts at inserting a canula and then the vein collapsing mid-scan and contrast dye pumped into surrounding tissue).  So this time I stuck to my guns and refused to let anyone one other than an expert attempt to canulate me.  It worked.  A handsome young doctor found an elusive vein at the first attempt and all went smoothly.

The next 8 days were a long, nail-biting, painful wait for the results.  Interspersed with the church Harvest Festival Lunch and a visit from Joy and Steve (thank you Dottie for lunch ingredients – artisan prize winning Cumberland sausage and black pudding), and Lucille and Andrew bearing practical gifts for me and the dogs.  Thank you all!

Thursday 12th.  An anxious wait in Specialist Outpatients with Jo.  Feeling slightly sick.  And twitchy.  The most interesting thing to read in the waiting room was a W.I. magazine article entitled ‘Extreme Knitting’  – I kid you not.  Made me and Jo chuckle anyway.  Have never felt so pessimistic about a diagnosis.  So it was totally amazing and unexpected to hear that the lump in my armpit ….. is just a lump!  They don’t know what it is.  But it’s not cancer.  So no-one gives a diddly-squat.  But even better …. the 3 inoperable tumours in my right shoulder have shrunk.  How good is that???  I heaved a huge sigh of relief.  Jo cried.  Danny gave me the biggest hug ever.  Alex’s reaction was a little more reserved but that’s just Alex (I know he cares a lot).  And a bear hug from James.

I slept well that night, accompanied by a large glass of Jammy Red Roo, an extremely licky Baldrick, and a snoring Coco.

Friday 13th proved to be anything but unlucky.  Jo’s book was ‘revealed’ at long last.  Lots of jumping up and down with excitement.  I am NOT going to read the first chapter (although sorely tempted) but will wait until I get my hands on the published hardback next year.  There’s lots of interest out there …..  Please share with your friends and contacts.  Wouldn’t it be amazing if this becomes a world-wide best seller? Click on the link below.

Sticks and Stones

She’s publishing under my mum’s maiden name and you can follow her on Twitter and Facebook under Jo Jakeman.

It’s been a weird year for fruit, flowers and veg.  The Christmas cactus is already in full bloom. There are loads of different types of mushroom in the fields – I was tempted to pick and cook this one but decided against it.  And the tomatoes have aquired some interesting shapes ……..






Carpetright? More like Carpetwrong!

It’s been a while ….. and a lot has happened.  So this is the first of a number of posts.

I have a brand spanking new downstairs shower room!  Thank you Peter Dobson for a fab job and Grimsthorpe Castle for paying for it.  The installation has not been without it’s problems though.

Really happy with the loo, sink/vanity unit and shower unit from Victoria Plumb. Bargain half price tiles from Wickes.  You’d think a little thing like ordering  2m x 3m vinyl flooring from a national company wouldn’t be difficult.  But……

A visit to Carpetright in Stamford resulted in flooring selected, ordered and paid for, plus fitters booked.   Then it all went pear shaped.  The fitters turned up as planned to screed the floor. An appalling job!  Lumps, bumps and ridges instead of a smooth surface to lay the flooring on.  They had to come and redo it.  And then the flooring didn’t arrive.  Although the computer said ‘yes’, the flooring was out apparentlyof stock.  The suppliers couldn’t say when more would be available.  I went ever so slightly ballistic (I’m not known for being volatile).  Carpetright blamed the computer system  And the suppliers. Meanwhile my PPP (Patient Plumber Peter) couldn’t complete the job so had to work around it.  I did feel slightly sorry for Alex at Carpetright when I phoned him – he gave me 3 options.  The first was to wait for delivery of  what I’d chosen but there was no guaranteed delivery date. Number 2 was to choose a different flooring.  And number 3 was a full refund.   Unfortunately he said ‘It’s not your fault.   Of course it wasn’t!!!!  He got a right earful from me……and then I went onto ebay and ordered the same style flooring at less than half the price which was delivered free within 3 days.

Amazingly, after I’d lost the plot with Alex, Carpetright managed to ‘find‘ in stock flooring within 2 hours!!!!  Too little.  Too late.  Why oh why does it take a customer going ballistic to get anything done?



Mmm. Choices. A slow inter-muscular injection into each buttock monthly? Or back to where I started 16 years ago ….. on the old ‘gold standard’ Tamoxifen?

But at least there are options available.  I owe everyone who has left messages asking how I’ve been doing a huge apology.  Sorry chaps, haven’t had the energy to get back to everyone.

And so to continue ……

I wasn’t the only family member at Derby Hospital on 27th April.  Alex fell at school resulting in a double buckle fracture in his right wrist.

How to cheer up a poorly grandson

My post-op consultation with Mark Sibbering was mostly good.  Flying solo for this one as not even Jo can been in 2 places at once (see above).  I would urge everyone to take someone with them to clinical appointments – I couldn’t remember everything Mark said but a letter arrived a few days later spelling everything out clearly.  Tumour completely removed. Grade has moved up a notch to a Grade 3 invasive ductal carcinoma.  The results from the Fine Needle Aspirate of the ‘unusual nodes’ in the infraclavicular gave a suspicious (but not definitive) result for malignancy.

The only way to be sure is to remove the nodes.  But an operation is not possible.  The next treatment option would usually be radiotherapy.  But I can’t have any more in that area. So the MDT had agreed that the best option for me would to be referred back to Pam in Oncology and probably put on Fluvestrant.   Two slow intramuscular injections, one into each buttock, monthly.  Oh joy!!!  Lots of common side effects but one of major concern is a change to the way the liver works.  So regular blood tests required.  Not a terribly attractive option.  Finding a vein has become so painful and difficult, but if it works……

A week later, me and Jo go to see Pam in Oncology.  We all agree it’s ‘rather disappointing’ that the cancer returned so soon.  Pam’s been doing her homework – looking back over the last 16 years, how the cancer has changed and what drugs I’ve been on.  I started on Tamoxifen, changed to Anastrazole  because the side effects were too severe, then had Exemestane last year (which obviously didn’t work).  Weighing up the options, we agreed to give Tamoxifen another go with 3 monthly scans of the pesky nodes plus body scans. Hopefully the Tamoxifen will stop or slow down any malignant growths.  If not, then we will have to consider chemotherapy.  Again.  Scan appointment booked for August 10th.  But I am feeling positive and well! I have a fab relationship with my consultants and feel really confident that we are on the best path.

Highlights and lowlights.

Bob Dylan concert …. really don’t know which category to place this in.  He is an icon and maybe the last opportunity to get to see him.  But an arena really didn’t suit his set. There was no interaction with the audience – came on, performed, went off.  I’m pleased I went but couldn’t honestly recommend his ‘Never Ending Tour’.


A trip to Doddington Hall with Helen and Caroline – friends and Grimsthorpe Guides. And more days out planned.   A shared love of history, food and gossip.

Helping Danny with his Tudor history project.  He thought that being given Catherine Parr as his topic would be more boring than the other wives of Henry VIII.  But Katherine, 11th Baroness Willoughby de Eresby, was good friends with Catherine Parr. Catherine remarried following Henry’s death, had her only child – a daughter Mary – and died 8 days later.  Katherine Willoughby de Eresby brought up the baby at  Grimsthorpe Castle.  Fingers crossed that Danny wins the prize for best project.  If he doesn’t, there will be 2 very disappointed people.  Jo’s baking his teacher a birthday cake for tomorrow. Not trying to influence any decisions ……

Mindfulness – a free course at St Barnabas Hospice.  I’m into week 3 and getting a lot of benefit from it.  Jo bought me Ruby Wax’s book, ‘Mindfulness for the Frazzled’ which is a highly recommended read.  I’m persevering with the course and hoping I can be a trainer in a few months.

And having Josephine here.  Enough said. XX


I guess not knowing what the future holds post surgery.

Struggling to get buy in for a Grimsthorpe Castle children’s booklet.  Not giving up yet! But draining on the energy resources ….

Finally, a few images of Rose Cottage springing into life


Surgery a sprint – recovery a crawl – and a £25 car park ticket

A black and brown Baldrick and Frodo posing with tulips and bleeding heart 

I really must learn to say NO!!!

Pre-op assessment went as usual.  Long time spent doing paperwork, ECG, weight, blood pressure …… and unsuccessful, painful attempts to take blood.  Still sporting the bruises from last week’s failures, I did explain how difficult finding a suitable vein is.  Undeterred, the confident nurse said ‘I like a challenge.  Can I have a go?’  And stupidly I said ‘yes’.  I left for the next stage of pre-op clutching a Red Bag containing the form to give to the Blood Clinic.  That was always going to happen.  Chats with Physiotherapist and Breast Care Nurse, admission details and post-surgery appointments sorted, I headed off to the Blood Clinic.  Waiting room – full.  Chairs in corridor – full.  At least 20 people standing.  I took a ticket, number 179.  The displayed showed currently serving 121.  Cheerfully waving my Passport to the front of the queue, the Red Bag, I presented my ticket to the frail looking elderly lady hospital volunteer.  ‘Have you got an appointment today?’ she asked.  I explained that I was being admitted at 7 the next morning for surgery, she smiled apologetically and sent me to stand at the back of the queue.  I tried to persuade her otherwise, but she stood her ground.  There were lots of grumpy miserable folk in clinic and she’d probably had to deal with a fair bit of flack already.  Hospital volunteers deserve medals.  So I stood in the corridor.  And waited.  An hour and a half. After 2 more attempts, bloods were successfully collected by the phlebotanist and I headed off to the Pay Machine.

I stuck my ticket in and ……. amount to be paid ….. £25 !!!!!  I’d gone over the 3 hour short stay period.  NOT MY FAULT.  Storming back to Reception, it didn’t take long for them to give me a 3 hour ticket.  Still cost £4.10.  But on my way home at last.

Spent a fab evening with Becks and Amy – evening meal and bed but no breakfast. Prepared for a long wait, Becks drops me off at the hospital Wednesday morning at 7.00 am.  When she was my lodger, she’d wake up, have a brew, get showered, dressed, out the house and arrive at work all within 20 minutes.  She hasn’t changed a bit……

A swift check in:  7.20 identity checked, confirmation of procedure with nurse and wristband on; 7.45 identity checked, run through of procedure and possible complications with surgeon, skin marked up ready for surgery and consent form signed; 8.15 identity checked, discussion with anesthetist – I did warn him that my veins are a bit, well, difficult. Then it was sit back and wait.  Read my book.  Watch a bit of tele.  Dream of a bacon sandwich with brown sauce and a cup of coffee.  At last I was called through at 12.00 to get gowned up.  Identity checked with another nurse,  pre-meds taken, stuck my hand in a bowl of hot water to try to soften veins, sit back and ….. wait.   Wheeled down to the theatre area at 12.45 pm, identity checked and procedure confirmed with another nurse.  A short wait and off again.   A hop onto the operating bed, a quick hello to Mark Sibbering (surgeon) and identity checked for the 6th and final time.  I surrender my left hand to the skills of the anesthetist, clench my teeth and wish him good luck.  A vein was found at the second attempt – in the wrist, not the most comfortable place – started to count backwards from 10 and I was soon off with the fairies.

Back in bed in the Surgical Day Care ward by 2.00 pm (I’m a bit hazy about the time), obs are taken regularly and I drift in and out of sleep for a while.  After a cup of tea, 2 custard creams and a trip to the loo, I’m declared fit for discharge.  It’s only 3.10 pm! Robbie McGreggor, my taxi driver for the return journey, deposits me at Rose Cottage before 6.00 pm.  Almost pain-free, a bit woozy but feeling good.

All going swimmingly well until Friday afternoon.  Suddenly hit by a splitting headache. Followed by vomiting.  Then stomach cramps.  And lastly severe diarrhoea.  I’ll spare you the gory details – google C.difficile if you really want to know.  Sleep, water and rehydration salts for 3 days but I’m feeling much better now.  Just in time to go to my next hospital appointment!  Jo(sephine) has been a brick looking after me but now she’s not too good.  I just hope I haven’t passed this bug to her.

Tomorrow it’s back to Derby for my post-op review with Mark Sibbering.  I’ll find out what the histopathology reports are and what’s going to happen next.  Fingers crossed.

Dinner with Becks and Amy

file-1 (1)

Plan A is going ahead – preparing for surgery

Figs, pear blossom and apricots.  Anticipating a good crop this year

CT scan on Tuesday went a bit awry.  Finding a vein to insert the canula was always going to be a bit tricky.  Lie back, brace yourself, wait for the ‘you’ll feel a slight scratch’,  followed by an apology.  Try again.  Then wait for the next person who asks, ‘do you mind if I have a go?’, and ‘you’ll feel a slight scratch’, followed by another apology.  The amazing Dr Chan was summoned and he managed to find a skinny vein in the back of the hand.  Suitably positioned on the gantry, off we go.  First pass through the scanner, done.  Then contrast dye is injected through the canula …… slowly as it’s a thin vein.  A strange warm feeling floods through the torso – by the time it reaches the nether regions, you start to think it might have been a good idea to have worn a Tena Lady.  The instruction comes, ‘take a deep breath in and keep very still’.  Something doesn’t feel right.  Pressure starts building up in the back of my hand.  Then my wrist.  Then my arm.  So painful.  Trying not to breath out or move my torso, I wave my free hand in a way that I hope is interpreted as ‘HELP!!!!!’.  A disembodied calming voice says ‘hold on Julie, only 10 more seconds to go, almost there, nearly finished.’  What a relief when the radiologists rushed in and removed the canula.  The vein had collapsed so some of the dye had been pumped into surrounding tissue – extavasation.  But enough dye had been pumped around the body for a successful scan.  To take the huge swelling down, I had to massage the hand and keep it warm.  Love the way the NHS improvises – I was provided with a knotted rubber glove, filled with hot water to place on the swollen area.  And a hot chocolate.  The waiting room was now filled with people whose scans were now late – it only takes an awkward patient like me to increase waiting times.  But what a fantastic service.  The staff work 12 hour shifts, 7 days a week.  Mr Hunt take note. It was a good job Jo(sephine) came with me as I couldn’t have driven myself home.

By the time I went back 2 days later to get the CT scan results, the swelling had almost disappeared.  Arrived 20 minutes early, feeling anxious.  What a relief to be called in straight away to be told there were no metastases and Plan A, surgery, will go ahead.  Yay!!!  Mark wanted to do another ultrasound, so a couple of minutes later I was up on a bed suitably disrobed.  Much discussion between Mark and the Radiographer.  I knew what was going to happen next when I heard ‘FNA’.  Poo!!!  Looking at the screen, they showed me 3 small ‘unusual nodes’ in the upper shoulder/neck area.  So a local anesthetic (another sharp scratch) and a lot of digging around to extract cells – Fine Needle Aspiration.  Uncomfortable, but the handsome young Registrar who was observing gave me his hand to squeeze.

So pre-op assessment Tuesday and surgery Wednesday.   The operation should be a doddle …… once the anaesthetist has found a suitable vein.

Secondary 2017 ….. back on the cancer carousel



Stanley, Jessie and Ellie.  My new favourite tulip and the first bluebells of 2017

So …. to bring my blog up to date.

Impressive appointment at the Royal Derby Hospital on 31 March.  Within 80 minutes I’d had a mammogram, ultrasound, discussion with Mark Sibbering (consultant surgeon) and core biopsies.  Came away knowing that the tumour – very evident on the ultrasound – was likely to be malignant.  Well done Jo on stomaching the biopsies – not easy on either the receiving or viewing ends.   We both left the hospital feeling ……. well, a bit disappointed.  Had rather hoped that I would have a longer period of respite.  But an appointment was booked for one week later to get the results, so no anxiety as not long to wait.

Thursday 6th, spent a fab night with good friend Jacci – a lot of talking, a lot of wine.   An amazing woman.  Check her campaign.  Dying to Work | Campaigning for additional employment protection for terminally ill workers   Got the biopsy results on Friday and, to quote Mark Sibbering, I have ‘a bit of cancer’.  By the time me and Jo left, we were feeling relieved.  Strange when you’ve just been told you have cancer.  For the 4th time.  But …… a full body CT scan booked for Tuesday 11th, and an appointment with Mark to get the results on Thursday 13th.  If no metasteses found, next stop is pre-op assessment on Tuesday 18th followed by surgery on Wednesday 19th.  How good is that, eh?????  If there are metasteses, we will have to go to Plan B.  But at the moment, there is no Plan B.

Me and Jo almost fell off the sofa laughing when Stacey, my CNS (Cancer Nurse Specialist) said I must contact my GP to arrange for a Community Nurse to do a home visit  post-op.  Well, I’ll try.  But, based on past experience with Lincolnshire Community Health, I don’t hold out much hope there.   I’m prepared to be amazed and will eat my hat if it happens.

Since my last blog I am feeling soooo much better.  Anti-depressants have finally settled down and alcohol consumption has reduced considerably.  And having Jo(sephine) here at Rose Cottage had helped tremendously.  She’ll stay for as long as I need her.  Huge thank you, Jo.




Grimesthorpe Castle opening for the new season.  Loving guiding again.

Seeing Ellie , Stanley and Jessie …. 3 lovely labs plus owner Catherine!

Dave and Jenny Burton coming for a  visit and a fabulous meal at The Six Bells, Witham-on-the Hill.  Highly recommend it.

Catch-up and coffee with Heidi – a lovely friend.

Five star rating for Royal Derby Hospital.

Garden blooming lovely!


Cancer diagnosis

There’s a hole in my bucket …..


Anyone unfamiliar with the song ‘There’s a hole in my bucket’, click on the link.


Not the easiest blog to write.  But I feel I have an obligation to keep it honest and real, so here goes….

The last couple of months have been a real downer – sort of expected.  A few months after my first cancer treatment had finished in 2003, I hit a low point and had a few sessions with a Clinical Psychologist.  And it happened again in January.   But this time, worse.

I had a meeting with Lincs Community Health Services Trust (LCHST) about their refusal to visit me at home and the subsequent infections I had.  Three of them. One of me.  All very professional and civilised.  Looking at the hard facts, there was no evidence to say that had they visited me at home, infections could have been avoided.  Plus they did not receive a fax from Derby hospital.  Fair enough.  The thing that I REALLY objected to was the fact that although both a GP and Consultant Surgeon requested I had home visits, LCHST have the right to over-rule requests if they think the doctors are wrong.  (Not going to let that one go.)  And as I was leaving, they asked how I was doing and what support I was getting.  That was it.  Floods of tears, a complete mess!  I had to promise I’d see my GP the next day.  Which I did.  One hole too many in my bucket.  Help needed to fix it.

So …… first thing that happened was a home visit from Gwen, a Macmillan Community nurse.  She referred to St Barnabas Hospice (a fab place, check it out) and after being assessed as having depression, a whole load of stuff is kicking in.  Tai-chi, Mindfulness course, bereavement counselling …. all free through St Barnabas.

I was prescribed new anti-depressants, Sertraline.  After 2 weeks of feeling fuzzy and headachey I REALLY hit rock bottom.  And drinking 2 bottles of wine on top of anti-depressants doesn’t help.  Panic.  Reading through the Sertraline side effects, helped to explain why I was feeling so bad.  But I needed help.

Rose Cottage is lovely but ….. it is isolated.  Baldrick and Coco are loving and good company but ….. they’re not Tony.  I’ve got 2 freezers stuffed with food but ….. it’s easy to eat snacks and drink far too much.  Far, far too much.  Apologies to anyone who has been on the receiving end of a drunken phone call!

A shout out for help.  Josephine (step-daughter) hot footed it up from Cornwall.  She’s staying for as long as I need her.  Weekly check ins with GP.  Two AA meetings and an appointment with Addaction today.

I’ve stuck with the Sertraline as advised and I’m now feeling the benefits.  But for a few weeks it was horrendous.  Maybe, now knowing the side effects, it’s not the best anti-depressant to prescribe to someone who lives alone, in an isolated cottage and drinks too much.

It hasn’t been all bad though.  A 2 day PET-CT Conference at the Royal Society of Medicine with breakfast at the Dorchester,  Alex and Danny’s talent contest, a visit from Robbie.  And it’s Spring and the garden is blooming.

Keeping busy today as I’m a bit anxious …….. I have another lump.  So heading off to Derby this afternoon to spend some time with the Bunts and a trip to the Breast unit tomorrow morning.  Crossed fingers and prayers, please.




Please help me and share this!!!

Once again there seems to be a post code lottery as to whether people who have lost their hair due to chemotherapy are able to access a new wig free of charge, a subsidised one with a voucher or given a second hand one.  So me and Sian are doing a survey. England only, but really interested in what my friends overseas have to say .

There is a video but unfortunately I can’t post it on WordPress unless I pay a lot to upgrade.  So if you want to see it, you’ll have to view it on Facebook  – look for Julie Wolfarth (Oldroyd)





2016 Awards – the sequel: the worst is yet to come ……

The last blog was up-beat, giving praise where praise is due, celebrating wonderful people, and acknowledging the little things that make a difference and mean a lot.

But there have been times when things have gone decidedly pear-shaped, could have been life threatening, caused delays to treatment and unless patients and carers speak up, how will things ever change?  Care providers and staff think they are doing a pretty good job, and they are usually doing their best.  But they are not on the receiving end and so much depends on ‘commissioned services’,  ‘criteria’, and who’s going to pay ……gggrrrrrr.  Makes my blood boil. What follows is more serious than previous blogs, longer, but needs to be said.

So starting at the beginning of my cancer journey, the 2016 Could Do Better Awards go to:

Worst Communication  – Peterborough Breast Care TeamThe GP referral was textbook – well done Dr Ian Pace.  It went downhill from there …..

  • January 21st.  The first hospital appointment was well within the suspected cancer 2 week wait period, and I had a scan, mammogram and biopsy.  The surgical consultant was pretty certain that it was cancer, linked to my previous breast cancer, and said I would probably be referred to the oncology team.  I had to wait 2 long weeks before the next appointment ….. and the time dragged.  I was so anxious to get the histopathology confirmed and treatment underway.
  • February 5th.  The second appointment was with a different surgical consultant who confirmed cancer. I gave him details of my previous cancer treatments and who to contact at Derby for my notes. I was surprised that a clinical imaging appointment had not yet been arranged – and even more surprised when the Breast CNS asked me to let her know when my appointment had been arranged so she could ask for the imaging results.  Another 2 long  weeks ……  and I was getting more anxious.
  • February 19th.  Scans completed, I turned up for the third appointment with surgical consultant.  Imaging results showed that cancer was in my lymphs – armpit, shoulder and attached to a vein in my neck.  It was inoperable so I needed chemo first.  I asked whether the notes had come through from Derby and was told that they hadn’t and that they would be requested.  An appointment with oncology would be arranged .  Why hadn’t the notes been chased up?  Why hadn’t an appointment with oncology been booked?  A letter arrived confirming my Oncology appointment for March 7th ….. anxiety levels reached a new high.  So I took matters into my own hands.
  • March 1st.  I contacted Derby. Peterborough had only asked for the histopathology reports from my first breast cancer – and only on 24th February!!!!!  Derby couldn’t transfer any information as P’boro had not given them my NHS number, plus I had married and changed my surname.  Those details were requested on 25th  ….. but P’boro did not respond.
  • March 2nd.  It’s not right to use personal contacts but by now I’d had enough. I spoke to Prof Amit Goyal, breast surgeon at Derby, and within 4 hours, I had been referred to and accepted by Derby for my cancer treatment.  I felt like a huge weight had been lifted off my shoulders.  Anxiety levels subsided.  I knew that I’d made the right decision when P’boro Oncology phoned Derby on March 7th saying that they hadn’t received my notes and I was sitting in their waiting room!  Completely untrue.  It took a long time for my notes to be transferred to Derby which meant another delay in treatment.  Chemo finally started 29th March.

Worst Emergency Care  – Grantham Hospital A&E.  Neutropena Sepsis is a life threatening condition.  When having chemo, you have to take your temperature regularly and if it rises above 37 C, you check in with your own hospital and, if advised, get yourself to the nearest A&E pronto.  Which is what I did.  ALL A&E departments should have an Acute Oncology Service.  Not Grantham.  ALL A&E departments should have a process to assess for Neutropona Sepsis and give intravenous antibiotics within an hour. Not Grantham.  To cut a long story short, I received intravenous antibiotics after 3 hours, the blood test results came back after 4 hours, and I was discharged home at midnight.  I was admitted to Peterborough A&E the next day ….. with Neutropena Sepsis.

Worst Community Care  – Lincolnshire Community Health Services NHS Trust.  Knowing I’d need some care at home, I spoke to my GP the week before surgery who said he’d be happy to commission support from the Community Health Team.  When I came home on the Wednesday, 2 days post-op, I was in a bit of a mess.  The drain had not been inserted properly during surgery and had to be removed before I left the hospital.  There was a build up of seroma which was leaking.  Lots.  Discharge details and care required were faxed to my  GP.  By Friday, I hadn’t heard from the Community Health team. I had a shower for the first time in 5 days (bliss) but had no dressing to put on the wound.  Still loads of leakage and 2 visible holes in the wound.  Plus the weather was hot and I was sweaty.  I spoke to the Community Health team who asked me 2 questions:  ‘Have you been told by a consultant/GP to say in bed?’ and ‘Are you able to sit in a car?’  The answer to both was ‘yes’…. so I failed their criteria test and they refused to visit me.  Despite both the GP and Consultant requesting care at home, me being on my own and unable to drive, NHS directives to deliver patient centred care closer to home, there was no reasoning with them.  They refused to budge …. It all comes down what LCHS is commissioned and paid to provide.  I developed an infection that night and what happened over the next couple of weeks was:

  • 111 call
  • out-of-hours consultation with GP who prescribed antibiotics
  • 1 telephone consultation with GP
  • 2 appointments with GP
  • 4 x wound cleaning and dressing with practice nurse
  • test to confirm infection type
  • 2 types antibiotics
  • 2 unplanned appointments with Breast Care Team Derby
  • 1 cancelled CT radiotherapy planning appointment and wasted oncologist appointment
  • delayed radiotherapy

Worst attempt at enticing me to eat – Baldrick and Meecha.   The dogs and cats have been so lovable while I’ve been feeling rough – especially during chemo when I was at my worst.  Appetite disappeared along with the tastebuds. One day Baldrick brought me a mouse in bed for breakfast and a partridge for lunch.  I accepted his gifts and then let them go in the garden.  I think they both survived.  Not to be outdone,  Meecha caught me a rat.  It was alive when she brought it in through the cat flap – and then it ran off.  Four days later I awoke to the unmistakable aroma of rotting rodent. It had expired under my bed.  For those with a nervous disposition – look away now.






I’ve got a meeting with Lincolnshire Community Health Services and PALS next week.   I’ll let you know what happens so watch this space.

Grantham A&E opening hours have now changed – there are no services between 6.30 pm and  9.00 am.  United Lincolnshire Hospital Trust (ULHT) has said it does not have enough doctors to staff the department safely.

Healthwatch are aware of my concerns about both Grantham and Peterborough but I’ve not done anything to take things further …..yet.  With consultations due to take place on Sustainability Transformation Plans, I’ll get my chance to add my two penn’orth.