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.

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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’.

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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?

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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

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Funding refused

Back in December I had a fall. Smash I went. Knees first onto concrete. I couldn’t make a fuss because I was playing at being a secret squirrel. Hubby and I had decided not to buy each other presents for Christmas. Long story short, FB market place, new digital camera, waited ’til other half out drinking with his mates, sneak off and get camera for him. I kept quiet about swollen, bruised knees and difficlty moving. Stopped my aquafit, balletand determined walking. Allied with smoking cessation my inactivity lead to weight gain (and unhappiness).

Move on to April. Tried increasing walking effort. Knees, especially left one, protested. Employed personal trainer once a week to tailor keep fit sessions for me. Took part in a colour run with duagheters and grandaughters, and that was the last time I lived day to day, and night to night, without knee pain. I did all the right things. Ice packs; anti-inflammatories. I contacted a private physio, she refused to ‘touch my knee’. Walking was extremely painful. Climbing and descending stairs was awful. Nights were interupted with intense pain, I gave in and consulted the GP. MRI. Complex meniscal tear. Bakers cyst. Medial, collateral ligament sprain. Start hoop jumping. See NHS physio. Refers me to surgeon. Surgeon recommends arthroscopy. He evn gives me the op date, 5 weeks away. Off on annual Portugal holiday first. Cannot walk, cannot even get on and off a sun lounger. Feeling quite low, but hope the op will sort me out.

Home. Phonecall to say that funding for my op has been refused. Why? I dont fulfil the criteria. ‘Which criteria?’ I ask. I haven’t been using conservative treatment for 3 months. What?????? Appontment made to see consultant, again.

Well, that was a waste of time. The consultant sat there. He had no idea why the funding was refused. There were no clues in my notes. He is going to reapply. How he is going to appeal, as he has no idea why it was refused, I cant begin to fathom. Where did the 3 month rule come from?

To say I’m low does not actually describe my mood. I’m hanging on in here, waiting the result of the ‘appeal’. My life is rubbish. I gave up smoking. I knew I would gain weight but I had my exercise. Had to stop my exercise. Weight starts going on, and on. Not good for damaged knee. I tried. I am caught in a horrid circle. I am living on anti-inflammatories and analgesics.

I know there are many, many people with life threatening illness, far worse off than I am. I keep pulling myself together, smiling and hobbling along. Currently though, I hate my life.

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Too true

I could never understand how the retired could say they had never been so busy, I can now. Last time I posted I mentioned that I was a Parish Councillor, The Vicar of Dibley, on a smaller scale. It is often so like this excellent parody. I am the youngest member of the Council, and often find the attitudes of my fellow councillors frustrating. So, so blinkered. Acknowledging their reluctance to immerse themselves in village concerns myself and another councillor thought that establishing a residents group would be an idea. How simplistic was our vision? Nothing is that easy nowadays. In my naivety I thought that getting villagers on board would be the hurdle. Not at all. We advertised a meeting. 500 leaflets through letter boxes. How vicious are some letter boxes? My nails really suffered. So did my ears with one stroppy resident. He did not want to know anything about the village apparently. ‘Sod the lot of us’. That first meeting, being optimistic we hoped for 30 attendees. OMG. 150 villagers turned up, the village definitely wanted a village society. I was really emotional. Blame it on the menopause! Cripes, we were in business. There were meetings; coffee dates; discussions with District and County representatives. Arm twistings to encourage people to be on the committee. Putting together the constitution. Reassuring the Parish Council that there isn’t a conflict of interest. Nearly there now though, then I step back. Always the midwife. Be there through the pregnant part, delivery, early days then, leave.

My forray back to ballet continues. One of the grandchildren snuggled up to me a couple of weeks ago, we were talking about my ballet class. She took my hand and gazed up at my face. ‘Are they kind to you Nanny?’ Just about sums it up really. BMI = overweight. Age = Late middle-aged. What on earth does she look like pretending to be a ballerina? Refer to Dawn French, again!

Well, not content with ballet I’ve now taken up aqua-aerobics as well. What a laugh. I love it. An amazing release. I’ve spent the last 15 years hiding my body. The burkini is nothing new. I have been wearing swimsuits with skirts for years, attempting to conceal stretch marks, flab and cellulite. I have always believed in miracles! Two other 60+, fun-lovers convinced me to plunge into the local pool and cavort to music. Along I went, swim dress flapping around my thighs. What an eye-opener. Do you know,  not all women at the municipal baths are golden brown, toned and young. They are mostly middle-aged and all make-up free, except for one hussy who looked pretty streaked by the end of the session. There is superfluous, blindingly pale flesh everywhere, and no one gives a damn. I went home that night and ordered a swim suit, nothing too daring or revealing, but a distinct lack of a skirt. Who would have thought that aqua-aerobics could be such a confidence builder.

Life is good. Busy, but not stressful.

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Retired

Back in the spring I took the plunge and entered the next phase of my life. I retired from midwifery.

I had been an NHS midwife for over 20 years. For as long as I can remember I had imagined being a midwife. When I was a young child, in the ’50’s, my Mother was a District Nurse/Midwife in the East End of London (shades of Call the Midwife). I have memories of being transported around on the back of her bike. Of being in strange peoples front rooms, coal fires, hearth rugs and lino. I would be sitting there with anxious men whilst my Mother was busy ‘working’. I would be given glasses of Idris orange juice, fall asleep and then be woken, to be wrapped up and positioned in my seat on the back of her bike. Later we moved and then I would only be exposed to Mum’s work during school holidays when I would sit at the back of chilly halls whilst she demonstrated how to bath babies. As I grew up I would ‘help’ out at antenatal clinics, collecting urine specimens and changing the sheets on couches. In our house the bookcase had a shelf dedicated to obstetric books. I would pull these large dull looking tomes out and secret myself behind the sofa. There I would turn straight to the black and white photos, all gruesome images of specimens in glass jars, preserved for posterity in formaldehyde. Pictures of births demonstrating adverse outcomes, for women and infants. In Mum’s bedside cabinet she kept her RCM journals. I was always an early riser, and apparently an early reader as well. I would steal into her bedroom and pull a magazine out, absorbing all aspects of Midwifery.

At 18 I started my SRN nursing, the only entry into midwifery at that time. I never wanted to be a nurse but until I was in my 30’s that was as far as I got, children intervened! Once my babies were old enough I undertook my midwifery training, worked in an obstetric unit for a few years and then fulfilled my career ambition, become a community midwife. Lucky me. The family I had always desired and my chosen profession.

In 2004 the next phase of my life commenced, I became a grandmother and by 2012 I had 8 of the little Rugrats!

In the course of my midwifery career I have been a hospital midwife; a teenage pregnancy midwife; a community midwife; a specialist VBAC midwife and a birth reflections midwife.

To the present day. In order to retire we had to sell the family home, we had lived there for 26 years, and down-size. Very traumatic, but always part of our plan. We have moved to a village and into a smaller house (not a problem), with a much, much smaller garden (big problem for me). We still live close to our family and I still participate in childcare. I didn’t want to ‘rest on my laurels’ so now volunteer at the local charity shop and am on the Parish Council. I have gone back to an activity from my youth, ballet, and I love it. I have about 30 years on all other participants but they are very kind to me!

Do I miss midwifery? Oh yes, every day. Legally I am now prevented from exercising my skill. If I had been a hairdresser, car mechanic or most other trades I could still help people out, as a retired midwife, no longer employed and with no insurance I cannot, I should not even check a pregnant woman’s blood pressure. One of my delights was to help out friends and relatives by providing their antenatal care or just being able to check everything was okay if they were concerned. My practical midwifery skills were just deleted earlier on this year, and I grieve for them.

I don’t miss the bureaucracy, the idiocy and the stress. It is these aspects I shall continue to comment on. I still have many threads connecting me to the maternity services and I have every intention of remaining up to date.

That’s it for today but I shall return. Soon.

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The 11+ nightmare

Yesterday daughter came to collect her offspring and told me about her nightmare. This daughter is not given to sharing her dreams, in fact I can’t remember her ever doing this before. I listened attentively. The narrative was short, but it revealed so much.

In her dream she, and I, were in a hall and the 11+ decisions were being read out. It came to her daughter’s name and the outcome was non-selection for Grammar school. In her dream she cried hysterically, berating herself for not signing up to the coaching culture. She cried so loudly that she woke herself. Daughter described this experience as a ‘nightmare’, which to her it was.

I am no expert in dream interpretation but there are so many bits that leap out if I analyse. Grandaughter will receive her 11+ decision, result, today. She and her parents had made the decision not to go down the coaching route, unlike the majority of her classmates. AJ is bright. Her literacy skills are excellent, her numeracy is average and, she loves school. The central core of daughter’s dream is that she will blame herself if/when AJ is not selected for a grammar school. Her error will be not insisting AJ be coached.  Parent’s, but especially Mothers, do this all the time, throughout their children’s life they assume responsibility for every outcome. I find it interesting that I am with daughter. Is she sharing the ‘blame’ with me, or am I there as her support? Whoops! Now I’m doing it, assuming degree of responsibility for her anguish.

Daughter herself only attended grammar school for 6th form. We had made the decision to move her to another, non-selective school prior to what was then the 12+. Is the ‘nightmare’ revealing that she felt sadness at not having the chance to go through the election process? Her distress is now becoming mine as well. Luckily though, I can look back and know that the decision we made nearly 30 years ago did not, educationally, have any adverse repercussions.

This afternoon AJ will come out of school clutching an envelope which will reveal which school she will attend from September. I think I know what it will say. I would love to believe that natural ability will overcome the 3 years of coaching  that the majority of her classmates have undertaken. It would certainly reinstate my faith in the original concept of the 11+. Whatever the result AJ will know that it was honest and that we are proud of her.

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Dear Dave

Still current. Perhaps even more pertinent now.

A Midwife's Muse

Dear Mr Cameron

I know that you, your government, the country, need to cut spending. I would know that because my wage packet has already been adversely affected, I accept that and don’t believe that public sector workers should be immune from ‘cuts’. Please note that I have said ‘public sector workers’, not ‘the public sector’.

I can’t comment with any degree of authority on the majority of publicly funded institutions but ask me about the maternity services and I can go on for hours, if not days, perhaps even weeks, you see I’m an NHS midwife, and have been for many years.

At this point I could make lots of self-invented comparisons between the effects of cost-savings within education, policing, parks etc., and the maternity services but they would be trite and not substantiated so, I shall just go straight to the heart of the matter, if you adversely affect the budget…

View original post 831 more words

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Crossing the picket line

NHS workers went on strike today, and the weather certainly wasn’t helping those on the picket line. This midwife didn’t strike, not because I didn’t agree with the action but solely because I had already, pre-strike call, made an arrangement to meet with a pregnant woman. Midwives were supposed to have badges to wear if they were working but supported the industrial action,unfortunately the RCM ran out almost as soon as they were available, so I just contented myself with telling people I saw that I should have been on strike.

Last night son of my loins phoned me for a chat. During the meandering conversation I mentioned that I should be striking today, however I wasn’t. ‘Good’ was the response from son. What followed was an in depth breakdown of why he felt that NHS employees should count themselves lucky and not expect a pay rise. He works for a company within the private sector where employees, specifically members of his ‘team’, have not received a pay rise in 3 years. He has received a pay rise. I started fairly low key and asked to what professional body his ‘team’ belonged, they don’t. So their annual fees have not increased by over 300% then? Hmmm. How much do you pay to park at work darling son? Well nothing, it’s a company car park. Really love? Well the cost of my parking permit has risen by over 300% in 3 years and is set to rise by another 50% in February. Hey son, when you have to spend the day out of the office who ultimately pays for your food, your sustenance? ‘It’s expenses’ he murmured. He was, by now, remembering that I spend all day, every day out of my ‘office’ and don’t receive any contribution toward food or drink. Hopefully he also recollected that, should I be working in the hospital, I receive no discount on their restaurant food. 3 years ago I did. Incidentally, my daughter, who also works for a private sector company, pays a minimal amount for her meals and if she has to work away from the office receives vouchers for food and drink. ‘You have excellent pensions though’ was the riposte. Well that I’m not totally sure of that, my pot doesn’t seem to me to be that great, but I let him have that point, but not without reminding him that my contributions have increased by over 3% recently. Another deficit in my salary has been the local Trusts decision to abandon the cost of living supplement, that’s over £20 per month. This fact was communicated to son as well. He still didn’t appear to be impressed or feel that I should be protesting about the loss of a recommended 1% pay increase.  Oh well son. Sorry you are comparing to my role to those of your ‘team’. How many lives to they have in their hands. How many times a day do they have to make important, possibly life-saving clinical decisions? How often are they showered in bodily fluids? How often do they work almost around the clock, struggling out of their homes, their beds, to drive to an unfamiliar destination, possibly in adverse weather/road conditions, to be greeted by an emergency situation, totally unsupported? Discussion ended as he remembered the times when ‘Mummy’ would say ‘goodbye’, whilst lugging heavy bags out of the house, just as he was going to bed. Did Mummy receive ‘plumbers rates’ for turning out for hours in the middle of night? No. Mummy received time and a quarter.

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