The cancer roller-coaster ride continues …..

It’s been a bit of a curate’s egg type of week.

I started with a rant about Community Health Services – thanks to everyone who commented on the blog and suggestions on what I should do now.  I will be doing something, not quite sure what or when yet.

The good bits of the egg:

Infection now cleared up, still some fluid build up and leakage but no more visits to see Jane, the nurse at the GP surgery, who has been fab.

Three appointments at Royal Derby Hospital arranged consecutively – how brilliant is that?  Lymphedema at 1.30,  Physiotherapy at 2.00 and Consultant surgeon at 2.15

Lymphedema appointment was fine.  10% of patients develop it after surgery removing lymph nodes.  Some good tips on using different types of materials to stimulate feeling and sensitivity, and massaging upper arms and around the wound to encourage lymphatic fluids to drain.   Back to see her in 6 months.

Passed my Physiotherapy tests with flying colours.  The exercises have been a doddle, mainly due to very little post op pain.  She sees no reason why I can’t drive – as long as I can comfortably do an emergency stop and check with my insurance company.  First job on the list for Monday.

The rotten bits of the egg.

The appointment with Mr Cheung was ….. disappointing.  It started off a bit weird with him asking  “What are you expecting me to tell you?”  What I wanted to hear was that all of the cancer had been removed.  That’s not quite the answer I got.  He had successfully removed all the axillary nodes and cancer that was ‘visible to the naked eye.’  He described it as a pyramid, the base being the armpit where the nodes were, tapering up, and that advanced cancer had been found.  Not what I wanted to hear.  And what about the tumours in the shoulder and neck?   No real answer to that one, other than I’m being referred back to oncology for radiotherapy to the neck and I should hear something in about 4 weeks.  Left with a prescription for Exemestane, a drug which helps to stop the body making oestrogen and used to treat advanced breast cancer when other drugs haven’t worked.  A long wait at Boots for the prescription to be filled and then back to Jo’s feeling very flat.

The best bit of the egg

Sitting at Jo’s with a cuppa, I got a call from Pam Woodings, my oncologist, checking how I’d got on and what I’d been told.  To cut a long conversation short, I’ll be having radiotherapy daily for 3 weeks at Derby.  To cut down on time and travelling, I’ll see Pam in Radiotherapy for planning and she’ll arrange another CT scan.  5 gold stars awarded to Pam.

 

 

 

 

 

 

 

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And yet another infection……

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The week started brilliantly with a phone call Monday morning from Laura (Radiotherapy) confirming I was booked in on Wednesday to see Pam (oncologist),have a CT Scan and Radiotherapy planning.  Fabulous service.

Then it all went pear-shaped again.  Had a great afternoon at Grimsthorpe Castle on Tuesday afternoon although I was feeling a bit achey.  By the time I’d finished the second tour I was ready for bed.  Got home, got changed and found that I’d got an infection in my wound.  It was weird that the whole area that’s scarred from previous radiotherapy was vivid scarlet.  And painful swelling around armpit and shoulder.  A quick call to the GP got me an appointment within 20 minutes, another course of antibiotics prescribed, and told to come back on Friday if it was no better.

At 4.00 am Wednesday temperature had shot up to 38.5 and the wound had started to leak.    Sister Dottie drove me over to Derby for my appointment, my bra stuffed with toilet paper!  By the time we arrived,  I was in a bit of a mess.  Jo to the rescue with her ‘mum bag’, always having an emergency supply of tissues, wet wipes etc to hand.  Pam looked at my wound, cancelled my CT scan and sent me round to the Breast Unit.  Before I left the Radiotherapy unit, my CT appointment had been rearranged for 7th September.  Great service yet again.

Seeing the breast team was a painful experience.  Build up of clear fluid around the wound is called seroma, and one of the nurses tried to extract some using a HUGE syringe and needle.  No fluid, some blood, excruciatingly painful.  Poor Jo felt sick.  The things I put my daughter through.  Back to see the Breast Team on 30th August (today) and if the infection hasn’t cleared/improved, I may have to be admitted and/or referred back to Mr Cheung, consultant surgeon).

By Thursday afternoon I was still leaking loads. Temperature still high. Still feeling like I’d got a bad bout of the flu.  Dottie had headed back to Carlisle to be replaced by Jo.  So another call to the GP’s, and my antibiotics to Co-amoxiclav.

Friday morning, no better, wound and surrounding area swollen and painful.  And a bit worried about what to do if this gets worse over the Bank Holiday weekend.  So ANOTHER phone call to the GP’s, an appointment with the practice nurse who brought in a Dr for a good look.  Advice was to go straight to Peterborough A&E if things got worse.

So I’m sitting here in Derby, catching up on blogs and emails before heading off to the next hospital appointment.

Would any of this have happened if I had been seen by the Community Team post-op?

Highs and lows

Highs have to be the great service and quick response I’ve had from both Primary and Secondary Care.

Lows – most of the stuff above, plus having to cancel my Grimsthorpe Castle shifts and not being able to drive.

 

Care closer to home? Bah! Patient centred care? Humbug!

Monday morning and a bit of a rant ….. again.  Sorry chaps but at least I’ve moderated my choice of language.

Everything was going swimmingly well.  Almost pain-free, physio exercises easily done, bladder back to normal.  And early Friday morning, my first shower since the op, and wound dressing removed.  Bliss!  Should have known it was too good to last …..

Friday morning I phoned the GP surgery to say that my wound needed to be re-dressed and I hadn’t heard anything from the Community Team yet.  The spare dressing that the hospital had sent me home with was way too small – a 3 inch dressing for a 6 inch cut.  A less than helpful receptionist said that I should go in to the surgery at 5.15 to the Dressings Clinic. I  explained that prior to surgery I had arranged with the GP that I would have care delivered at home by the Community Care team, that I’d had surgery only 4 days earlier, I was unable to drive, I now had an undressed wound which was weeping, and I didn’t want to risk infection by having to wait for 8 hours.  She passed me on to a nurse.

The nurse, Jane, was surprised that the Community Health team hadn’t been in contact, said she would speak to them and I should await their call.  Any problems, call the GP surgery back ….. should have anticipated it wouldn’t be straightforward when she said that the team wouldn’t visit if you were able to crawl over the doorstep.  Thought she was joking.  Sadly not.

A short time later, the anticipated call from a Community Nurse came.  It soon became apparent that I didn’t fit The Criteria …. I hadn’t been ordered to remain in bed by a doctor and I was able to sit in a car.  The fact that I’d been referred to the Community Team by both Derby Hospital AND my GP, that I’m not able to drive, had now have an undressed weeping wound landed on deaf ears.  Nothing gets past The Criteria.  I must admit to being a bit unpleasant demanding to know – who set the criteria?  were patients consulted and involved? how did this meet NHS priorities for delivering care closer to home?  and where does patient centred care figure?  I think I also threw in a few emotionally charged rantings about the last thing I need to do is fight for the care I need and am entitled to have, when I’ve got secondary cancer etc etc.  And how I’ll be following this up with the CCG and Healthwatch.  I did get an apology – I think she felt that she was in a difficult position, blocked by The Criteria.  Am I right in thinking that if The Criteria aren’t met, Lincolnshire Community Health Services don’t get paid??????

Second call of the day to my GP surgery, another conversation with the receptionist and nurse.   Got slotted in early afternoon, wound dressed and back home.  We were having a lovely barb-b-q, enjoying the sun and Pimms outside when I started feeling a bit iffy. A 111 call, assessed as needing to speak to an out-of-hours GP, a call back from a very nice Dr Lee, and a diagnosis of ….. an infection.  Picking up the antibiotics was a bit more of a problem.  Pharmacy at Bourne Tesco – closed at 8.00.  Prescription faxed to Asda Grantham – out of stock.  Eventually Jo and James got to another late night pharmacy in Grantham and returned at 10.30.  Why does life have to be so difficult?

Highlights

BBQ and having Dave, Guillaume, Jo, James, Alex and Danny here.  Sense of taste improving day by day.  Relatively pain-free recovery from the op – better than expected.  Picking the first runner beans.

Lowlights

Battling the NHS machine once again. If the Community Team had done a home visit as requested, maybe I would have avoided an infection.

Tales from a hospital bed

I had rather hoped to be back at Rose Cottage by now.  It feels like I’ve been here forever.

Monday started early, arriving at the Gynae Day Unit at 7.00 am.  It was a bit like the Marie Celeste. A receptionist appeared briefly, took mine and 2 other patents’ details and disappeared again. For the first of many times that day I was asked me to confirm name, d.o.b., address, allergies, etc. etc. etc.  Mr Cheung (surgeon) walked in and out and in and out of the waiting area, opening doors, saying ‘I can’t find a nurse – can you believe it?’  Er, yes I can. 

Having found the elusive nurse I was called through to see him.  Having gone through details check for the second time, he and his registrar Helena had a poke around and having drawn a dotted line and the letters RANC (right axcillary node clearance) on my chest/armpit in thick blue marker ink, I went back to the waiting area.  Not long before the anaesthetist called me in and went through the third check of the morning. Most disappointed to be told I was on the afternoon list.

Me and Jo sat in the cold, empty waiting area watching morning TV.  And then afternoon TV.  The other 2 patients who arrived at 7.00 went through for their ops.  And came out and went home, giving me a sympathetic look as they walked past.  At last I was called through, details check number 4, and was wheeled down to theatre.  Details check number 5 (short version), 2 goes at finding a vein, a cheery smile and wave from Mr Cheung and I was away with the fairies.  

A few hours later I woke up on Ward 202 – the most friendly, competent and nicest team of nurses I’ve met. And Jo tells me the receptionist was wonderful too.  Gold star chaps!

Apart from me pushing over my table at midnight resulting in an almighty crash, nurses running in thinking I’d fallen out of bed, and rudely waking up Beryl in the bed opposite, the night was relatively pain free and uneventful.

Tuesday morning awoken at 6.30 by one of those annoyingly cheerful people, making unfunny ‘jokes’ and humming tunelessly. Loudly. I’m not at my best in the morning.  An early Drs round confirmed everything was fine and I could be discharged.  Things went downhill from there.  Started vomitting.  Bladder had to be emptied manually. Drain was leaking, not picked up by Dr.  The leak became a steady stream.  Fabulous nurse, Naomi, noticed that the drain hadn’t been inserted correctly and it had to be removed.  Another cannula inserted this time by Louis, King of the Canulas, guaranteed to find a vein first time.  Intravenous anti emetics and fluids.  Still vomitting by lights out.

This morning awoken by the sickening cheerfulness of Jane again.  But – hoorah- no vomitting, leaks or pain.  Bladder still not fully functioning. However, I can go home.  Off to get washed and dressed.

Lowlights and Highlights

Dreadful food. Soggy chips, reconstituted tasteless fish on Monday night.  Ham salad Tuesday lunch not too bad but by the time that arrived, everything that went down came back up shortly afterwards.  Plumped for the pork and leek sausages, mashed potatoes and mixed veg for dinner.  Not a goog choice.  Vomitted again.  

Apology from Registrar for having put the drain in incorrectly!  Most surprised and impressed. Don’t expect that to ever happen again – the apology, not the mistake.  Visitors. Jo has spent a fortune on car park fees. Lovely to see the boys, Heidi, Gwyn and Brooke.  And all the lovely staff on Ward 202.  Lack of pain post op.

Surgery tomorrow

A short blog – it’s quicker than having to reply to people individually (hope you don’t mind!)

Pre-op assessment was fine – slick, timing spot on, thorough.  That is, until they tried to take blood.  After several attempts I was sent to the Blood Clinic.  Waiting room full, queueing in the corridor, so when I took a ticket it was unsurprising to find there were 38 people ahead of me.  One sore wrist and two hours later I was on my way.

Hospital bag packed – Pooh bear with me as always.  Char gave him to me when I had my first cancer and I never leave home without him.

Last shift at Grimsthorpe Castle for a while.  Jo’s coming to do Sunday lunch and take me back to Derby.  Admission on Monday at 7.00 am!!!  I suppose, looking on the bright side, we won’t have to queue for the car park.  If all goes smoothly, I should be discharged on Tuesday morning and Jo will bring me home and look after me.  Community nurses will visit me at home – change dressings, remove drain and stitches.  Guillaume is in charge while I’m in hospital – dogs, cats, greenhouse ……. everything at Rose Cottage.

Fingers crossed that all the cancer can be removed.