Parish Council farce

Where are you Jackie Weaver when you’re needed?

If only we were still zooming, his gizzards would have been fried. Whose gizzards? The council bullyboy’s. You saw Handforth Parish Council and the loudmouthed, bullies? They are not the exception and, what’s more, you cannot get rid of them. Our Parish Council has it’s very own ‘I’m the chair. I have all the power’.

I’ll give a little outline. It’s May. It’s the annual meeting. Time to vote in the offices. Chair, vice-chair etc. We had a Chair who was a micro-manager and had to be ‘in’ on everything. Every project, every agenda item, he had the final say on. He was a worker though. The control freak wasn’t too good, neither was the misogynism, bullying or favouritism but on balance he was the best choice. He was voted back in unanimously, as was his vice-chair.

Annual meeting. Chair of Finance not present but Chair was happy to carry the responsibility. A few questions were asked, just process, nothing contentious. Then a topic that Chair had issues with, picnic benches. Council had agreed months ago to move forward with the project by going for tenders. All that needed to happen was agreement. The Chair wanted to put it off, again. No reason, just defer. Obvious unhappiness from ward councillors.

There was a slamming down of his glasses case, a shuffling of papers. Then he stood and shouted to the assembled councillors and the clerk that this was the shortest ever time of Chair, that he was resigning. Then he stated that 2 councillors present had done to him what they had done to a previous Chair and Vice-Chair. Made him resign. I shall not go into detail, except to say their resignations had been due to them not being aware the clerk was not up to being the Responsible Financial Officer, and that when they did realise they had attempted to hide it from council. That no one, or 2 councillors had been responsible for their resignations. Anyhow, following his outburst he left the meeting, reappearing 3 minutes later to state, ‘I’m not resigning as Ward Councillor though’. Then he went again. Silence, a shocked silence, reigned.

The man lost his temper. Behaved in an unprofessional manner, at a Parish Council meeting. A public meeting. Lied about 2 councillors to justify his behaviour.

Where do you think this leaves him?

Is he still a Parish Councillor?

Is he still Chairman?

Does his behaviour fulfil the Councillors Code of Conduct?

Transformation

Husband was in remission but his back was really causing him grief. His walking was becoming unco-ordinated, or that was how it appeared. His balance was off and sleeping, well, he, we, could forget that, the pain wouldn’t allow for that luxury. I was reassured by the fact he had a routine check-up with his haematologist, even though he was certain that the problem was his old back problems.

Before the meet with the consultant we needed to get some good analgesia on board, up until now he was on a diet of rogue painkillers that I had stashed (you never know when you’ll need them) under the stairs. Own GP, yes have these. Enough for 2 weeks. Repeat prescription request, half dosage prescribed. See locum GP. Now, she was more interested in telling us how ‘away with the fairies’ she was on half the dose of Gabapentin and how dangerous Cauda Equina is. She had suffered it. Had been unable to pass urine, or shit. She was obviously agreeing with husband that the symptoms he was displaying were spinal injury associated. Whatever. Prescribe him adequate pain relief. After another visit and an email we achieved the seemingly impossible, making his pain tolerable. Still horrendous, still incompatible with sleep but tolerable.

At last his consultant appointment arrived. His bloods were okay, as usual. Of note. Don not ever believe that NHL can be ruled out by ‘normal’ blood results. Throughout Husband’s results have been wonderful, reassuring. He told her about his back playing up again, in fact must have bored her rigid by detailing each and every episode of pain, incapacity, nerve damage and disc surgery. Before she nodded off I interrupted and told her that it was atypical, that he had never had difficulty peeing before, that he had never had groin numbness or great balls of fire before., and that all of this was left-sided, where his pelvic mass had been.

CT scan, urgent, requested. Just a little titbit here. I was due an MRI, non-urgent, both our appointments happened to be on the same day. Mine at the good old NHS resource, his at the yummy, private facility the NHS are utilising for their urgent work. 6 days later I had my scan results, 2 weeks later his ‘urgent’ results were still not available. In desperation the facility were requested to get someone, hopefully qualified, to look at the images. They looked and said there was something there, but that they weren’t worried. By now husband was very worried. He was still convincing himself that it was his back problem and he was worried that the nerve damage was more likely to be permanent due to the timescale.

Thankfully the Team were unhappy with the images so ordered a biopsy under CT of the ‘something’. Almost immediately an MRI appointment came through, and a repeat blood screen request.

We were invited for an appointment. Specialist nurse was there. Full results of anything were still not available but the preliminary conclusion was that the lymphoma had woken back up, the volcano was showing activity. Chemo was the way forward and it was booked to start the following Friday. Come in Wednesday to sign the consent form and have a covid swab.

Wednesday. Wednesday the 3rd August 2022. Was it my imagination that the receptionist on the unit seemed kinder than usual? That the staff who usually bustle past acknowledged us, said hello, smiled? Results are in. Large mass, bigger than before. Pressing on spinal cord, encompassing nerves and blood vessels. Its no longer Follicular Lymphoma, it’s transformed and is now Diffuse Large B-Cell Lymphoma, DLBCL. Time stood still. Ice flooded my system. I looked at husband and I could see the fear. ‘Fuck’ was what he said.

Volcano

Our journey goes on. The chemo finished in April 2021 and husband had a PET scan.

Now, this Non-Hodgkins Lymphoma is a tricky little bastard. A sufferer is never cured. What happens is remission. A person with NHL, who has achieved remission, is a dormant volcano. All their nodes, lumps and bumps are non-active, there are no active foci on Positron Emission Tomography scan. Excellent news, we had seen off the beast. Now there would be 2 years of maintenance treatment using one of the chemo drugs. A quick visit to the hospital every other month.

I’d love to report that life returned to normal. It didn’t, I’m not sure if it ever can. Covid is lurking, ready to pounce if we relax. Back in January he caught the dreaded Coronovirus. The NHS responded amazingly. Positive LFT, positive PCR and 24 hours later the local hospital phone and invite him in for a monoclonal antibody infusion. Husband has now had 5 vaccines, still we don’t feel ‘safe’. It really doesn’t help that to go on holiday we will have to pay £300 for single-trip insurance. What should be the time of our lives, the reward for a life of working, is turning out to be the worst time of our lives.

Can it get much worse? There is a global economic down-turn, Russia has invaded Ukraine and I have suspicions that the UK is being governed by a lunatic. Six weeks ago husband complained that his back was hurting. He has an impressive history of back issues, compressed disk, nerve damage, foot drop, loss of sensation. He diagnosed pain due to compression of the sciatic nerve. Oh yes, Dr Google has nothing on my beloved when he has his white coat nearby. I was delighted that he had an appointment up and coming with his consultant because me, the harbinger of doom, was suspicious that it was the pelvic mass on the move. That there was a shifting in the magma chamber.

Lights on and door closing

Christmas looming and husbands birthday. Strangely I wasn’t feeling terribly festive approaching Christmas 2020. My close relationship with my family had been erased due to lock-downs and bubbles and my husband had been diagnosed with non-hodgkins lymphoma and had just started chemo.

Sometimes I think I may have manic tendencies. Having said that we wouldn’t be having a Christmas tree or decorations I decided we would amalgamate husband’s birthday and the Yuletide spirit, only I wouldn’t tell husband of my plan. Basically on his birthday the family and a couple of friends would be invited round, to stand in the front garden, and we would switch the decorative lights on and celebrate his birthday.

I ordered lights, stationary and flashing, coloured and white. Strings and shapes, 3-reindeer pulling a sledge. Not content with that I purchased a waterproof, bluetooth speaker and copied all our Christmas tunes to i-pod. I couldn’t help husband knowing I was putting up a miniature Blackpool illuminations but I kept the music, friends and family a secret. I did warn the neighbours though. Everything was on timers, at 7pm husband stepped through the front door, all the family, plus friends were standing waiting, if this was his last birthday it would be one for us to remember. The lights went on, the music played, we toasted Christmas, Birthday and Chemo.

Goodbye Dad

My Dad

Two days after celebrating my husbands life, my 99 year old Father died. He had suffered a stroke 2 weeks before, gone to hospital, developed Covid-19, and been started on the end of life pathway. There is so much I could say, so much turmoil, distress, sorrow, regret.

On his final journey only one person could be with him, and that couldn’t, wouldn’t be me. Due to Covid-19 and a CEV husband who had started chemo I was advised I shouldn’t be there. I have a much younger sister. We had always supported each other, she had to face this alone. I could be at the other end of a phone, but not be with her. My relationship with my Father was dysfunctional. There were questions I had which he had never answered, now I would never know the answers. I could never say goodbye. The door would be firmly closed but the story not have a satisfactory ending. The worst thing though. Not being with my sister. His final hours were marked with my sister and I talking on the phone, her describing to me what he looked like, what his breathing was like. Then, he died. I had no idea what to think, what to do. I stood looking out of the window at a clear night sky. Suddenly a star moved across the sky. The logical part of my brain knew it was co-incidence, the emotional part believes it was a sign. It was my Dad leaving this world but allowing me to witness his final flourish. Goodbye Dad.

R-Benda

Should he enter the trial, should he just go on the traditional route? He read, we read. Hmm. The big thing, for both of us, was that traditionally, once in remission (more on that later) patients go on maintenance therapy. The research wants to decide if maintenance and or PET scans is the best way forward and to assist with this you go into a blind study. Basically this means that you may be given the maintenance, rituximab, or sterile water, you don’t know which, and then they see how many remain in remission and how many have a recurrance. The PETReA study was at a hospital 40 miles away. Husband decided that 1) He wanted to know he was having maintenance 2) The journey for his treatment would be easy. It was now November and he was worried about adverse weather affecting travel.

He opted out of the study.

Gosh. Haematology, oncology don’t hang about. He was given 2 days the following week when he would be starting chemo. The chemotherapy he would be on would be rituximab and bendamustine. Laiden down with information we walked out of the consultant’s office.

Would that life in 2020 were that simple. Coronavirus, COVID-19 was there. Lurking, ready to strike at anyone but especially if you were a grown-up, with pre-existing medical conditions and even more so if you are immuno-compromised. Husband looked to be the viruses favoured target.

Straight Talking

The doc may be small, but she doesn’t believe in small talk. The facts are itemised.

It is Non-Hodgkins lymphoma, follicular.

It is demanding treatment, no Watch and Wait for husband.

The pelvic lump is bulky, and there are signs of NHL above and below his diaphragm, and on opposite sides of his body it’s Stage 3, bulky.

Chemo.

Would that it was that simple though, there is a study. PETRea Do you want to take part? Here is the information. Read it and decide. We will see you in 2 weeks and proceed from there.

Oh yes. Don’t catch Covid, you will die. What? We had covid right at the start of the pandemic. We are immune, he is immune. Well, actually it turns out that he might not be as blood cancers can destroy your immune system. So what does this mean? It means that he must ‘shield’. That he must avoid people. Socially distance. Be Mr Very, Very Careful. That wasn’t the worst news though, I was included in the advice. The message being, you can’t die but you can kill him. You are also in social isolation. CEV. My husband is propogating acronyms. He has NHL and he is CEV, clinically extremely vulnerable.

‘Thank you’. Yes. That’s what we said, ‘thank you’.

Cancer in the time of Covid

We were summoned to see the haematologist, not an oncologist. Lymphoma is classified as a blood cancer. That made us feel it could just be masquerading as a malignancy. That it’s less serious, less of a cancer. Is this just the different ‘label’ or that the GP had planted in our psyche, that this NHL was a good cancer to have. Is it just that we are choosing to believe that this a fake cancer?

The day comes round to see the consultant. We are greeted at the hospital atrium by two people at a trestle table. Hand gel is promoted, masks are required and then the persons ask where we are going. We tell them and they decide I can’t accompany husband. We show them the letter which states I am expected to be there. They are adamant. Then my strong, unemotional husband grabs my hand and tells them he is not going anywhere without me. They make a phone call and I am ‘permitted’ to go up to the clinic with him, and we sit there, and sit there. No one else waiting, chairs all socially distanced. The whole hospital is like this. An environment which is usually busy and buzzing is virtually deserted. Areas which usually have a strange mixture of seating, all pushed up together, peopled with an assortment of humanity is now silent. The chairs solitary and only a couple of lonely attendees waiting, waiting for something, someone to acknowledge their existence. The usual sense of urgency has dissipated.

Just as we were giving thanks for the fact that parking charges were no longer in effect a small lady appeared before us and indicated that we should follow her. What is the protocol? We can’t get too close and we mustn’t pass too close to others. We mustn’t lose sight of her though. I felt as if I was participating in Alice in Wonderland and I was trying to keep up with the white rabbit, or was it the Queen of Hearts and she would suddenly shout ‘Off with his head’? Then we had manoeuvred into a room and were sitting staring at a pair of eyes. My headmistress, a nun, said to me that the eyes are the windows to the soul. I looked into this doctor’s eyes and I saw her soul, or I saw something that told me we were not about to discuss a fake cancer.

Non-Hodgkin’s Lymphoma

Recap. Painless lump. Transient, itchy rash. Breathless. Scan. Biopsy.

The escalator increased it’s speed and an appointment to see an haematologist flew in. A face-to-face appointment was issued and, despite Covid, I was invited to attend. Meanwhile I had sneaked a look at husbands medical record on the GP patient portal and there were the result of his Computerised tomography, CT, scan. Yep, there it was , the lump in his axilla. Hmm. The 9cm one in his abdomen, pressing against the major arteries supplying his lower limb came as a surprise to me, and an even bigger one to husband. He had been totally unaware of anything alien lurking in his abdomen, especially an intruder bigger than a grapefruit. It did explain the difference in leg colour though. There was a mention of the pancreas but all seemed not too bad really.

The waiting in the scheme of things was very short, but I have to say it seemed like an eternity. Information but no explanations, we had no idea where it was going. Our friend had Non-Hodgkins Lymphoma (NHL) 14 years ago and she had ‘Watch and Wait’ for a year. NHL is a weird old beasty. It can be several different types (see below) It can be quick or slow. The GP said that if you have to have cancer then it’s the one to have. Our friend had a round of chemotherapy and has been well ever since so it all seemed quite positive really. Husband was told by the GP that it was Follicular Lymphoma. That was the same version as friend had. All good.

We made the decision not to share any of this with the family, how can you share something which is still gradually revealing itself to you? We were finding it difficult to sit on our hands, not read too much, not anticipate and not get ourselves tied up in knots. Why inflict that on others?

Husband finds a Lump

Back in March we both came down with Coronavirus. Recovery was slow but we just felt pleased that we were gradually feeling slightly more like ourselves. Yes, we were both breathless, husband more than me, but so what.

Life was returning to a new type of normal. We were socialising more, masks had become a fashion item, hand washing and sanitising part of ending every activity, of entering and leaving every shop. Everyone was walking, footpaths grew wider and wider. Farmers appealed with walkers to stick to footpaths. People would keep their distance. It was socially accepted that if you were walking down a pavement you would step into a driveway or into the road to ensure that social distancing was maintained. People would smile at each other, even say thank you, conversations would start up. The world, locally at least, became a far more friendly place.

August came and husband told me about the painless lump that he had discovered in his armpit. After 3 weeks it was still there, perhaps slightly bigger. He also developed this rash. Very itchy. He decided that it was a sweat rash. I wasn’t sure so gave him some Fucidin H to try. It helped. The H is hydrocortisone, a steroid. I noticed that his legs were different colours. One was paler than the other. I suggested he consult the GP. He wasn’t keen.

After a couple of weeks Husband must have been worried as he made an appointment to speak to the GP. The phone call, GPs don’t automatically see patients anymore as Covid has affected everything, led immediately to a face-to-face. The face-to-armpit led to a scan. The scan led to a biopsy. 3 weeks from phone call to biopsy.

Off we went to Cornwall to stay with our friends. On the 4th day we went to a beautiful little port, Portscatho. Standing, admiring the view over the bay, Husband’s phone rang and our lives took off on a different path. It was the GP, ‘It’s cancer’.

As I took this photo Husband was on the phone receiving the news that would decide our lives for at least the next 10 months

2020 – All to look forward to

My last post had bemoaned my troubles with my knee. After a letter of appeal to the Local Commissioning Group my operation was approved. 2019 was ending with a positive. Second week of December I went into hospital and had my op. All terribly lovely. The NHS locally are using a local BUPA hospital for some procedures and I was a lucky one. Wow. Loveliness surrounded me. I came round from the op and my lovely surgeon came to see me. Yes, my operation had gone well. My knee had been tidied up but, I have grade 3 arthritis and need a knee replacement. Whoops. Elation to depression in one sentence. My joy with my excursion into private health continued on a positive note. The aftercare was great, especially the physio. I declined the offer of a knee replacement believing there would be time a plenty for that ‘big deal’. The surgeon was unhappy with my decision. we made a date to see each other again in 3 months when I had had time to realise how painful my knee still was. I wasn’t though. Well, in comparison to how much pain I had been in this was nothing. Okay. So my knee was painful, I couldn’t run but I could walk without limping or crying. I could live without constant analgesia.

In the news there had been talk of a virus in Wuhan, China. Apparently it had come from bats and pangolins into the human population. It was a coronavirus and was killing people. At the hospital there were polite notices asking that you inform staff if you have returned recently from China. It was obviously causing illness in China, some experts were warning about the risk of epidemic, of it spreading but we were all pretty complacent. We took our lead from our leaders. They didn’t seem concerned. Travel carried on. The rest is history. Pandemic and millions of deaths.

In our little world. We entered March and it was obvious that our comfortable existence was about to be disrupted. There was talk of lockdown, shielding, isolation. Social distancing, washing hands became part of everyday life. I was aware that the vulnerable in the village would need support so I started Village Aid. I approached one of the local churches for support, don’t even allow me to say what I now think of this particular ‘Christian’ group. In fact, as time went on I lost my faith in religion. I still consider myself a believer, but I certainly am not a supporter of organised religion. So disappointing. I had started a village society 3 years ago so I spoke to them and hit the ‘risk management wall’. Excuse my language but bo****ks. I did it. I designed and printed. With the support of the local sports association I was able to distribute leaflets for volunteers to post through every letterbox. Thankfully the Parish Council helped out with paper and printing. Email address, WhatsApp group, Facebook page, posters and we were off. By the time lockdown happened Village Aid was up and running, and still is.

Last week of March and Husband and I were unwell. Temperature, slight cough, complete loss of taste and smell. We have still not completely recovered. We thought we both had ‘long Covid’.