The torment of a growing tumour

My swollen wound

Two weeks after removal of the secondary in my chest wall, it is healing well still a little swollen and sore. Next week I face a long session of R/T (radiotherapy), where they attempt to blast to bits the beast on the lung. Facing imminent death is discomforting. Though some may escape taxes, we all know we are born to die, but manage to live most of our lives as though it is of no relevance to us directly; we walk the path of existence with so many distractions we give no thought to the final destination. Now, although I enjoy many distractions still, it looms in my sight and is present in the painful twinges, my weakening limbs, increasing breathlessness, and deteriorating mind as I struggle to remember names or even words that hitherto flooded effortlessly into my brain.

Today, the oncologist at Addenbrooke's phoned again to give the results of the tissue they removed, confirming the tumour was present in the margins of the wound, and therefore still very active. They hope to try more localised beam therapy, with protons or electrons to reduce it, which sounds more like using experimental apparatus in the physics lab than standard hospital care; but Addenbrooke's is a major cancer research centre, so perhaps these treatments have just come out of the lab.

Happier Days in London

As always, it is poor Annie who suffers the raw impact and the burden of my disease, suffering all my moods but without our old distractions of visiting new places, or even going out to anyone more distant than Haverhill or Bury St Edmunds. Edwin cooked a wonderful meal last night, but other than this, we hardly go to a restaurant now, whereas we used regularly to go several times a week and always for Sunday lunch. Now, Annie prepares all our meals, ensuring I get a balanced diet designed to give maximum power to the immune system.  

Gone too are our relaxing weekends away, being pampered in hotels or even visits to the cinema or theatre, although we did enjoy one night away in London to see The Devil Wears Prada, an unexpected Christmas gift from Ed and Andre. We live in hope we may resume some activities once all the treatments are over, but at the moment it is a hope that seems to recede as quickly as the days are advancing. 

Confusion reigns

The familiar entrance to Addenbrooke's Hospital

I am including this picture of the entrance to Addenbrooke's Hospital to share what we are seeing just too often at the moment. The information from the hospital regarding the management of my cancer has changed rapidly like the storms of winter. In my previous post, I was told by the registrar that nothing further would be offered to me (Hope was but a timid friend -), but suddenly a spate of hospital appointments began to come through. On Saturday I was told to attend for a repeat scan the next day (Sunday) at 7pm in Ely hospital; on Tuesday I was given an appointment for 9am at Addenbrooke's for a surgical assessment; at 8:45am came a further appointment for the cardiac unit at 10am on the same morning; then I was to go for yet another blood test. I'm not sure what was found or discussed, but this morning came yet another appointment, presumably for surgery to remove the metastasis from the muscle in my back under general anaesthetic. I am now to attend the plastic surgery unit at Addenbrooke's Hospital on the 22nd of this month at 7am.

Needless to say, Annie and I find this incredibly confusing. I believe the plastic surgery consultant must have overridden the message from the registrar that "nothing further could be done", and in his wisdom has chosen to do something after all. It is not only me that is confused: we told everyone the glum news.  Now we are having to explain suddenly this change in plan. The surgeon himself had said there was only a fifty-fifty chance of surviving the op if it were done, but he looked bemused when Annie and I burst out laughing at each other and said that sounded like tossing a coin to see who lives or dies. I don't think many people laugh in his oncology clinics, where we more commonly see many oldies struggling on Zimmer frames or being pushed by a long-suffering relative, or unfortunate young women in head scarves to hide their hair loss, or cachectic children wheeled by distraught parents from the immunotherapy wards. No, the oncology clinics are not generally places of mirth but we feel that laughter, in the face of such imminent, potentially catastrophic changes, is the only weapon we hold to defend ourselves to defeat morbid speculation.

The Enemy Returns

Several unexpected events jumped into our lives this week. First to happen, the hot water system went off, discovered when Ann came down from a tepid bath. Our plumber said a valve had failed; he has ordered a replacement but is yet to return to fit it, so we are using the inefficient immersion heater as a standby. 

Then early yesterday, I was woken at 4 a.m. by a loud crash from the wardrobe as Ann slept peacefully on. Having listened in case it was a burglar, my guess was a hanger had given way and some clothes had fallen down, so I went back to sleep. Later, Ann came to tell be the whole rail had collapsed; all her dresses were in a heap, so I was out early to buy a new rail and fittings as Ann sorted through and reduced her stock considerably, to the benefit of the charity shops.

Afternoon tea at the Swan, Lavenham

In the afternoon, we are in Lavenham for an afternoon tea at the Swan, a splendid Tudor coaching inn at the heart of England's most unspoilt medieval town. The tea is a treat for Ann's birthday from Richard and Chris; it is over four months since the birthday, but the long delay is ours: the gift card was sent on time but we have been busy, and anticipating our delayed gratification in this splendid dining hall. We are greeted by the maître-d' in his elegant suit and waistcoat, who informs us to proceed to the desk in the restaurant whence we will be shown our table. At the desk, I am greeted again and give our names; "Yes sir, I know", he said. Ann whispers to me, "it's the same man, idiot!". He had raced through the kitchen and popped up at his other desk before we reached it, but I hadn't noticed. This often happens in our lives: Ann is far more observant than I, especially when it comes to people. Perhaps it's a woman thing; Ann always says women make the best spies. Little seems to escape their eye, and Ann certainly always seems able to read my mind just from my expression or body language; nothing escapes her. No wonder some women used to be considered witches; they appear to possess the ability of second sight.

A phone call from the consultant's secretary to ask when I will be free to speak to him sets alarm bells  clanging ominously. Sure enough, he phones to say my recent scan shows a recurrent growth on one of the lungs. I wait to tell Edwin, hoping not to spoil their holiday in Africa, but conscience beats back caution, as we have always promised to not keep anything from him, so I say that a cyst has been found on the lung. He immediately replies, "how big is the tumour?", for like his mum, he has great insight into people and events. I tell him "six centimetres diameter." He sends sympathy, and a fine picture of wild penguins bathing off the rocks on Robben Island. He is now at Victoria Falls, where I note there are such wonders as the Elephant Walk, Rainbow Hotel, Lookout Cafe, The Three Monkeys Restaurant, and Shoestrings Backpackers' Lodge. It all sounds very American commercial. 

Strangely, despite the recurrence, I feel fine with the little pain controlled with paracetamol. True, I get breathless walking up slight hills, but on the straight it is more the pain in my feet and legs that limits me, rather than the lungs. The future is clearly uncertain (well, the timing I mean; the outcome is all too certain!), but I continue to enjoy life, write this blog, and do as much as I can in the world. One advantage now is that major events seem to pass me by as I ignore the looming world catastrophes, for I will probably not be around to see their outcome.

Some really good news, and one small problem

One brilliant piece of news this week: Edwin posted: "Andre asked me to marry him, and I said, 'yes'." Edwin had had an onsite workday when Andre joined him so they could go to Tiffany's to select the rings. They were met by appointment and treated like royalty, with champagne and a full assessment of just what they hoped for. The rings were boxed and gift-wrapped, then they strolled across the Millenium Bridge when Andre went on one knee to pose the eternal question. They then followed the Brazilian tradition of wearing the ring on the right hand during the engagement, to be swapped to the left hand on marriage. Edwin's has a small diamond to tokenise the engagement ring, while Andre's is a heavier solid gold affair.

We were thankful for this wonderful cause for celebration as I, alas, have little news to celebrate otherwise. No one wants the gory detail but, in outline, my gut oscillates from constipation to diarrhoea like Balaam's donkey: it can't make up its mind. For three days, it went on strike refusing even to work to rule. I offered it more carrots or anything else it fancied, but it protested with bouts of severe colic until my body, in protest, spiked a high temperature. At that point, we decided to try to get professional help or support. The doctor's surgery of course just uses a metallic voice to announce: "If it's an emergency like a stroke or heart attack, phone 999. For anything else, phone 111." Ann duly phoned 111 and went through a complex series of multi-choice answers, half of which seemed to refer her to flow charts online, and others to sending her a text message. It is not easy switching constantly between screens on a small phone, or trying to retrieve texts, and Ann was finally abandoned in a labyrinth of complex, contradictory instructions. If this happened to Ann, who was a research officer and used to train students to use computers, what hope is there for lesser intellects; the whole complex business seems designed to deter people from using the system. Then, we thought, we have been given an emergency number for the hospice who are now supposed to be responsible for my care. Alas, it is a hospice where cancer only exists between 9 and 5; it was now 5:30pm, so another recorded message reported that the lines were closed. p

Ann had taken wine at lunchtime so was reluctant to drive; we therefore asked Edwin if he could ferry us to the Emergency Department (ED) at WSH, which he duly did, abandoning a dinner with Andre, their minister and his wife at which they were discussing wedding plans. That is true sacrifice. Ann came to sit with me, although a notice announced, "Wait for triage nurse, 2 hours. Wait for doctor, 4 hours." Later, that notice changed to, "Wait for doctor, 6 hours." It was therefore 01:30 a.m. when I was assessed with a provisional diagnosis of 'hepatic enlargement with possible inflammation of gall bladder and pancreas secondarily to hepatic metastasis of the melanoma", so the registrar decided to admit me to a ward for observations, and to await the result of a CT/PET scan I'd had earlier in the week. By 3:30 a.m. I had been waiting in a hard plastic hospital chair for 8 hours. Edwin too was waiting with me, having returned from his dinner and driven Ann home. Then three chairs without armrests became vacant to I moved across and tried to sleep lying on these. 

Waiting for a bed at 4:30 a.m. after 9 hours at WSH

By 4:30 a.m., the ED outpatients was filled with people dozing in chairs, also waiting for admission. My aches and tiredness had become unbearable, so I went to the front desk and announced that, clearly no bed would suddenly become vacant now, so I wanted to go back to my son's and sleep on his spare bad. The receptionist said, if I discharged myself, I'd have to go through the whole process again when I came back. I said, I wasn't intending to discharge myself, but after nine hours I couldn't stay on those chairs a moment longer, so I merely intended going out for some fresh air and a rest, but would be back in the morning to take my place in the queue for beds. After a moment's reflection, she said she would see what they could do, and led me through the ambulance entrance to the emergency assessment bays. Most were already filled with other people waiting beds, but she found one at the end still vacant, so I could finally get a couple of hours sleep in relative comfort on a trolley in ED. Edwin had brought a flask of tea with him, which was brilliant as no other drinks were available.

It is often reported that it is the elderly who demand hospital attention. But the ED at West Suffolk Hospital was mainly filled with young people; people who, as a GP, I would mostly have assessed to have minimal serious illness but wanting minor treatment or reassurance. Now, GPs are grossly overpaid for doing less and less work and minimal hours. GPs are paid according to the number of patients on their lists. My first solution to the resource problems of the NHS would be to change this scheme and pay general practioners strictly for each patient they attended, with double pay for out-of-hours consultations. This would immediately shift primary care back where it belongs: in the community, and it would relieve the A&E departments of much of the minor care they are obliged to provide now, most of which is neither accident nor emergency.  Despite this, care and professionalism by the staff at WSH was first rate. Doctors, nurses and ancilliary staff without exception treated every patient with consideration, care and respect: young or old, trivial or serious, drunk, depressed or moaning, or even handcuffed to police officers.

At ten in the morning the consultant came round who agreed with the registrar, but thought I should be returned to the dermatology department as they had organised the scan and could take over my management. In the meantime, I was to go back home and treat the pain with paracetamol. Yipee!!

Chronic renal failure - a textbook case study

I am going into pedagogue mode now, speaking as a medical professional to all who wish to learn about chronic renal failure (CRF) from the standpoint of the sufferer. So sit still and learn, or change channels now.

Anatomy. We all know they're somewhere towards the lower back part of the body, one on each side, and we know they must have little tubes connecting them to the bladder in some way. But when they're working and pain-free, no one knows where they are, and no-one cares. Only when they have a problem do we care - then the pain in the lower back on one or the other side points to their location in no uncertain terms.

Physiology. They do a lot of things we take for granted: they maintain fluid balance to prevent a build up of excess water; they constantly adjust the pH of the blood to be not too acidic nor too alkaline but "just right"; they maintain salt balance - not just the sodium chloride we shovel on our fish-and-chips, but all the other salts we usually ignore - potassium, calcium, phosphorous, and carbonates. They also bear some responsibility for regulating blood pressure, stimulating haemoglobin levels in the blood, and helping the immune system to cope with life's traumas and the nasties constantly trying to invade our bodies. Oh yes - on top of all this, they get rid of much of the toxic waste our bodies generate each day from burning food for energy ('good' waste), and breaking down all the rubbish we throw into our stomachs ('bad' waste) - especially from the evil meat, that palatable temptation of the devil to ingest poison in the guise of tempting steaks and succulant stews. Be not deceived - the stuff is poison as I have learnt to my cost. [Oops - I am straying from the true disinterest of the good medical text here.]

Clinical manifestations of CRF. These are the manifestations of each of the functions of the kidneys. Having many functions, it follows that there may be many manifestations. At the moment, I seem to have them all.
I have had erratic hypertension and been anaemic for some time. This leaves me tired; I would add irritable, but I think this is just my normal state, not the CRF. The toxic wastes and acidity of the urine makes it burn like crazy, and I need to keep running every hour or two (dysuria and frequency), or I won't make it in time (urgency), and there are horrid sharp pains shooting up my insides like knives. Last night I woke with bad nausea and had to sit downstairs sipping water with a bowl beside me.  The toxic products irritate the skin, and I now have red blotches everywhere, especially the back and legs, that itch like crazy and bleed easily everytime I scratch too vigorously (generalised pruritis). Additionally, a strong immune system helps prevent cancers developing, and the depressed immune system allows them to develop. I therefore blame the CRF for giving me two independent cancers (melanoma and bladder cancer), rather than the other way round.  In short - and in lay parlance - I'm a miserable wreck.

Management. I have to drink plenty and watch my diet. Basically, I must leave off all the things I like (bananas, tomatoes, oranges, olives and avacado) which have too much salt and potassium, and eat plenty of all the things I dislike (broccoli, cabbage, cauliflower and onions!). Also, I repeat, leave off the poison of red meat. If the CRF continues to deteriorate, younger men than me might be offered dialysis to rest the kidneys and remove the toxins, or ultimately renal transplant. Neither option is available for old men over the hill, so I shall have to continue on the downward slope.

The only other management options are to hope for a miracle (trip to Lourdes?), and be thankful for someone like Ann to put up with the grouchiness, and administer creams and drinks and manage my diet like an angel!

One down one to go

Some good news this morning - I had a scan of the lymph glands in my neck, to check for any spread from the melanoma of the ear, and they are all clear! The doc didn't even find one big enough to biopsy. So that front's looking good – one cancer down, just the bladder to go. As a second bonus, I love to listen to Bach Before Seven each morning, as an oasis of peace before the madcap day begins. This morning it was Céline Frisch playing the third of the 48 on the harpsichord, which is the best way they should be played. Absolute bliss, joy and beauty.

We have Ann's cousin Alan staying with us this week. He's always interesting to talk to, full of stories and usually they're about strange things that have happened to him. His current saga relates to his former second wife, Iris, whom he's trying to divorce, though without much success yet. Iris is from Trinidad, the larger of the two Caribbean islands comprising Trinidad and Tobago, and he and she both starred in a TV programme about retiring to a dream home, when they looked at a potential house on Tobago.

Iris seems to be intent on dragging out the divorce for as much as she can screw out of Alan. This seems to be something she is professional at, as it's her third marriage, plus a number of commercial interests she has sued. They were only married for four years, and the divorce looks like it will take longer than the marriage lasted.

Alan's new girlfriend is from Jamaica, and very strong on obeah, or Jamaican voodoo. We think he may be leaving the Trinidad fire for a Jamaican frying pan - she's already referring to him as "her fiancee". She has organised various exorcism rites to rid Alan of the evil spirits within his soul (meaning Iris). Now she has asked if Alan would like Iris "dealt with". However, Alan has said only if it resolves the drawn out divorce – but a definite no if it involves anything violent! As Iris was his second marriage, the way it's progressing, for Alan too it's going to be one down and one to go!

Hunting the lump that goes bump in the night.

I returned to the West Suffolk dermatologist this afternoon for my melanoma check-up. He is an abrupt, unempathetic Egyptian who usually just asks how things are, and is always satisfied if the answer is "fine", without wasting too much time checking anything in detail. Today, I mentioned that I thought a lymph gland might be a bit swollen below my jaw, and was uncomfortable at night. He poked it for a moment before saying there didn't seem much there. I added that I'd seen the oncologist at Addenbrookes on Monday, and I thought he might have written about it, so he checked through my record and found the letter.

Until then, he hadn't realised I'd had another cancer treated since I saw him last. Looking a bit abashed, he felt a little more thoroughly, then decided to refer me for further scans on my head and neck, to 'make sure', so at least something is happening, and I'm hopeful that I'll get reassurance.

On the news, all is Brexit. Against seemingly everyone on the cabinet and in parliament being opposed to her, she doggedly holds her course with persistent calmness and patience. She is beginning to win the sympathy vote for her plight, even from hardened labourites, and even from the public who think she has sold us a ribbon-wrapped turd. Yet those opposing her are too custard coloured to oust her, let alone offer any alternative with more than a pig's chance in an abattoir of getting it through Brussels.

The Fight of Two Cancers — Icing on the Cake

Two cancers, alike in power, fight for supremacy within my body. The bladder cancer  I have detailed in depth. It has been excised, and awaits radiation blasting. But the first cancer, equal in malicious intent, was the malignant melanoma of the ear. It has lain dormant since last year when this blog series started (see The Black Spot, The Spot Returns, and Watch this Spot). Now a couple of soft glands have reappeared in my neck, so the oncologist is returning me to the dermatologists for review at West Suffolk Hospital next Monday. It would be ironic if, after all the fuss and anxiety about the BC, it is the silent malignant melanoma that turns out to be the more deadly.

Icing the cake

Meanwhile, as Christmas approaches, Ann has made the cakes – a gluten-free one for herself and Edwin, and 'normal' ones for me, MA and the girls, and Robin and Yvonne, Sam's parents. They are heavy with fruit and brandy, and I am given the task of icing. Partly, because I used to ice my mother's cakes, but mostly because Ann's grip is still weak where she fractured her hand, and is unable to get great force to open bottles or wield the rolling pin.

The spot returns

The spot returns -
bigger than before.

A stressful day yesterday. I had to be on the ward at 7am, but they had given us an overnight room so it was just a brief walk. The waiting room was full and I was last there at 6.55, so was surprised by the nurse calling my name. "You're first on the list," she announced, and led me through to a single room. I just had time to text Ann before they took my phone as they stripped me off for their dowdy nightgown, and pulled tight elastic stockings over my feet. Then I was sat in a chair and wheeled away to theatre. Addenbrooke's  is huge, and I was taken to theatre 22; all the others looked busy already, full of bustling staff even then.

Old assumptions live on

They laid me on the table and passed the catheter into the vein, and I knew no more. There was no time for fear. They didn't even ask me to count to ten! I awoke in the recovery ward, dripped and groggy. They said I'd had a large haematoma which was drained well, and my oxygen was low, so a cylinder was pushed onto my legs with a nasal feed. Finally, taken back to the ward to be greeted by Ann and Edwin - a most welcome sight, but I couldn't sit up for them. I felt sick, dizzy and miserable, and could only manage sips of water. BP low, pulse slow, O2 down, but I knew I had to wee for them to let me go. Finally, I managed to stand and move to the toilet. After a long time, I squeezed a drop out, probably residual from the morning, but I could truthfully tell the nurses I had PU'd and they said I could go home, with a gash across my neck and minus half an ear.

I couldn't resist this picture of the nurse call. I think they must date back with the hospital to pre-equality days.

Watch this spot

My first visit to Addenbrooke's, for the pre-op assessment. BP, bloods and ECG, and groin swabs for MRSA. It used to be arm-pit swabs, but too many people now use deodorant which throws their cultures. A doctor marked the scar with a pen, then on to get a photo. The spot is back - but this time more like an indelible line.

A German boy, boarding in the UK, was in the clinic with a nurse trying to reassure him. "Lots of people lose their thumbs," she said. "At your age you soon won't even miss it. You'll stand out from the crowd and people will say, 'there's the boy with no thumb.'" He didn't look over-convinced and the bandaging looked serious.

Wives not allowed

Next day, Edwin left us at the hospital, to walk a long corridor for cream and a dressing to the ear to numb it, then an even longer corridor to the Department of Nuclear Medicine for my radio tracer injection. The technician was a burly man who seemed to take relish in giving me four separate injections into the tiny fleshy lobe. They contain Technetium-99m in a new colloidal suspension used in USA but new here. He said it would be too much for a single injection, but it stung like four wasp bites despite the cream. Then down to the radio-imaging department, and another long session waiting for the tracer to move to the nodes, with the rotating cameras brushing my nose to take 360 degree 3-D images of my ear and neck. The final images looked magnificent though, like an anatomy model of the lymphatics.

CT Scanner ready for the ear

Finally, back to the Plastic Surgery Unit, where an Irish trainee consultant moved a gamma-ray probe across my neck to map the hot spots. I asked about the drainage of the ear, and she went into a long spiel about the complex embryology of the pinna. I asked where she had trained. "Cork Hospital," she answered briefly. "Ah - I trained at St Thomas'," I rejoined, "but it's a long time since I learnt about brachial arch embyology." She looked sheepish then, and said, "I didn't realise you were a doctor. It should have been in the notes! I'm sorry I talked down to you." But she was much more sympathetic then, and didn't patronize me.
Now I've ended up with three more black spots for the surgeon to aim at tomorrow.

The Black Spot

This week is the saga of the ear, unless I am too ill to post a report. I am quite attached to this ear. I have had it for a long time, but now we must part company. Old pictures of me with the ear show the Black-Spot goes way back.

Black-Spot on the London Eye in 2003

The dermatologist discovered a melanoma on the lobe in January, and referred me to the plastic surgeons. I was seen by Mr Silitoe in February, and he operated on 10th March. He is a formidable man, solid in appearance, with one blind eye that I tried not to stare at, though I had read on line that he had been done for speeding in a Jag. He also had a huge swelling upon the wrist, covered with a little bandage, which hung before my gaze as he performed the op under local. My medical curiosity longs to know his history, but as a patient I must assume the role of silent acceptance. 

I could hear the knife slice through the cartilage, and the nylon stitches squeaked as they were drawn through to close the excision, but it was clean, quick and pain-free. He did a good job, that healed well with barely a scar, and little change in the profile.

Black-Spot exchanged for little scar

It had been a very small black spot on the lobe, that had been present for years, but had recently changed. It looked nothing at all, other than a cosmetic blemish, and at follow up OP clinic, I was certain he would tell me it had been excised, and other than routine check-ups, nothing more to worry about. But he didn't. "It's over 1.5 mm deep," he said, which is beyond the threshold for a Stage I. I was disappointed, and a little stunned by the unexpectedness of it. "I recommend having further wide excision, and sentinel node biopsy," he concluded, punching the words at me. I resisted the urge to ask him if he still had has Jag.

So now I am lined up for Addenbrooke's under the care of Mr Durrani, with the intention of losing more of the ear and a node biopsy. People ask, "how are you?", and "are you worried?" but the emotions are not of fear or distress (heavens, I removed enough small lumps myself as a medical student and surgical houseman in the old days). No, I think the over-riding emotion is anger. One sees the world going on as it always does (disturbing though it be in the UK this year), oblivious to one's own future or outcome. But the anger is not even against the indifference of the world - I think it is internal, to know for certain one's days are numbered. Even given another 10 years, it seems too little when still enjoying life and living, and wanting to do so much more. I am angry that the days close in, circumscribed by a wall we cannot climb. Angry at the time wasted and misused, even though probably I would have done nothing much or anything different. But in youth there is potential to do much. With age, even potential is stripped away by limiting time.