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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’.

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.

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?

Non-Hodgkin Lymphoma | Ask Hematologist | Understand Hematology

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

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’.

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.

Lost E-Cig

Cripes. In my last post, at the tail end of last year I had given up smoking. I have still given up smoking, not one cigarette has approached my lips. According to my quit app it is now 252 days, since I last smoked and I have saved £1,889. The app is good, initially. It really helped me in those dark, shakey days, seeing the money I had saved. It does nothing now, I can go for weeks without accessing it. The not smoking has become easier, the habit is obviously diminishing, but I still miss having a cigarette. On holiday recently there were a lot of people smoking, and now all packets of cigarettes look the same the old familiar pack sits there, a metre away, tempting you with that instant relax.

Years ago I bought an e-cig, a Neo. Sleek, black, perfectly balanced. No strange little bottles containing flavoured liquids for me. I had tidy little cartomisers, beautifully presented in smooth, clear, perspex containers.

My Neo resided in different drawers, I never got round to quitting and then, years later, it was put into use. It was my companion. Rarely used, but always there should a hit of nicotine, an exercise in inhaling, be required. Being a born worrier I thought I needed a spare. Supposing the battery broke, or I lost it. I wandered into shops enquiring into the possibility of purchasing a new one. All to no avail. Discontinued. One shop had a couple of cartomisers, I bought them. A stash. Then it happened. My Neo disappeared. I had it at the village society summer fete. I think I took it to the pub. High low, in pubs, in cars, handbags and drawers I hunted. I looked at other e-cigs. Oval, triangular, flat, not right. Then I found one, a Blu, it looked right. Hurrah. I went to order it and a supply of cartomisers. Strawberry, menthol, no tobacco. Alarm bells. This is something about to be discontinued. Back to hunting. Then it happened. Went out for a wander with Hubby, Daisy the cat decided she should accompany us. Not something to be encouraged given her predilection for rolling around in the middle of the road so we headed back home via a footpath we rarely use, and there it was. My Neo. Lying on the footpath.

Recharged, new cartomiser. It’s there. My spirit has lifted.

Moving forward

Staying alive

Well, I go away for a year, come back and WordPress has changed. Blocks?? I will be interested to see what it looks like.

My life plods  along. I’m still a Parish Councillor, just. I don’t do bureaucracy. I know that is a surprising statement from someone who was an NHS employee for 3 decades but the NHS was NOTHING in comparison to local government. A fence is in desperate need of painting. Residents offer to paint it, using a good quality wood paint, the same colour as it is at the moment. NO. NO says the Chair. Not before you have completed this risk assessment and answered this extremely insulting to the intelligence, poorly written email. Following on after 2 similar experiences the residents rounded on the council and told them to paint it themselves. The Chair also believes that they have the final say over everything, and that unless they want it to be discussed, it will not be discussed. It would be so easy to step away and leave them to it but I will not give in. I signed up to act in the best interests of the residents and that is what I shall continue to try to do.

The residents association is a reality now. It became official in January and is going great guns. They have resurrected the fete on the common, complete with live music. After an interesting exchange with the Parish Council (no you cannot put a tree on Parish land) they have erected a Christmas Tree on private land and will be having a public switch-on event. 

After 12 years of no contact with my Father he agreed to see me again. Contact involved me doing everything he wanted, the puppet master was controlling my life again. I was not permitted to ask why he had chosen to have no contact with me, or my children, for over a decade. The one occasion when I tried he gave a performance worthy of an oscar for ham-acting, much clutching at his head and wailing, however, no explanation. After helping him move home 3 times, and 3 years later, I have given up. He is 97 years old. He could die at any time but he could live for a few more years yet. Why have I decided to close the door on our relationship? I have realised that he really couldn’t care a jot about me, or my family. The reason he agreed to contact again was for his own interests. He was running out of friends and other family, so he decided that I was better than nothing. Our relationship is toxic, having contact with him makes me unhappy, very happy. It is a constant reminder that my Father shut me out; that he wasn’t there as a Grandad for my children, their other Grandad died when they were babies. That, although he must have known that his Grandson was terribly ill and close to death, he made no attempt to contact either of us. I have tried to talk to him about this. I felt that if we could speak about the history, that if I could understand why he had shut me and mine out, we could begin to establish a happy relationship. He blocks this, I have no idea why. I feel sad that he will take his side of the story to the grave with him but it is now obvious that this is what will happen.

Staying alive. That is me. I have given up smoking. After 40+ years I have not had a cigarette for 3 weeks. My quit app tells me that I have regained 1 day and 21 hours of life; that I have saved £143 and that I will gain 3Kgs in weight. Hmmm. The money is worth it, but the weight gain? Not so sure.

Other health news is that I have changed GP’s, and that I appear to have been put on a drug that has banished my restless legs. Yes. Rather than attempting to mask it with codeine, I am now taking Ropinirole, and it’s working. I can sleep, all night but, if I can’t sleep I can lie in bed. I can just lie there and relax. It’s all good in the hood.

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.

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.