Chapter 6: Failure, and next steps

“A PET scan was carried out in September to find out whether the second chemotherapy had worked.”

5 October 2016  

Dear friends

Unfortunately Donald has not left the room but his power has been diminished and he might still meet his maker at the hands of a rocket man…

As you’ll probably know, I had a PET scan last week to find out if the June chemo had worked. Today I went in for the result. The imaging shows the tumour is still there although it’s much reduced in size. There is a possibility that it’s a false reading. But the haemotlogist’s opinion is that it’s still an active tumour and its best to proceed on that assumption. He was very straight with me and reminded me that I have a particularly aggressive type of Non-Hodgkin Lymphoma (NHL). Further chemo is not an option but radiotherapy is.

The radiotherapy process will probably start next week and treatment proper will start in 3 weeks. This will be 15 daily sessions over three weeks. The radiotherapy messes with the DNA of the cancer cells so much so that they’re unable to repair themselves and die. This is unlike normal cells that can repair damaged DNA. It’ll take until February to find out if this has worked. I’ve been told that there aren’t any survival rate stats, so I guess outcome is pot luck.

So not really the news we’d been hoping for but never the less cure (to use a word used by the good doctor) remains a possibility. ‘Cure’ is not a word used lightly by doctors- that is, when they use it they mean that this is a possible outcome. So where there’s life, there’s hope.

The 14th October  is the anniversary of my first admission to hospital when NHL was first diagnosed. How time flies when you’re having fun!

To stretch metaphors painfully thin, the dotard Donald may yet be nuked by the little rocket man that is radiotherapy.

Love

Nigel

Chapter 5: Another round

“Once the first chemotherapy had failed plans were made to try alternative chemotherapy. This process started in May.”

18 May 2017

Dear friends.

I have some very good news.

As  you know, I have been undergoing the first stage of a new chemo regime.  If my tumour was smaller at the end of this, I would go onto the next stage of treatment. If the tumour was not smaller, there’d be no more mainstream treatment and the prognosis would have been very poor. The chances of tumour reduction were 15-20%. I had my CT scan on Monday and this morning I met with the professor to get the results. And the tumour is smaller!

Very soon, I’ll have my stem cells harvested. Then I’ll be admitted to hospital for 3 to 4 weeks for intensive chemo (a procedure which destroys the immune system) and then the harvested cells will be transplanted to rebuild my immune system. The chances of cure are about 50% although that’s based on old data for patient groups that had less effective a form of chemo.  It’s heavy duty treatment which will take me 3 to 6 months to get over.  But the main things is that I’m in with a fighting chance. It is no exaggeration to say that the prospect of a death sentence that I have been living with is history for now at least.

Love

Nigel

3 June 2017

Dear friends

I now have a hospital admission date (22 June). Before then I’ll have my stem cells harvested, I will have a line inserted in my chest to take various infusions and through which blood will be taken and I’ll have liver, heart and lung function tests. I’ll also be taking medication to trick my bone marrow into flooding my blood with stem cells. That way harvesting can be from the blood (painless) rather than the bone marrow (painful). It’s clever stuff.

I’ll be admitted to hospital for 3 to 4 weeks for 5 consecutive days of chemo (a procedure which destroys my white blood cells and so the immune system). After chemo, the harvested cells will be transplanted to rebuild my immune system. I’ll be discharged once my immune system is up and running. It’s clever stuff.

I’m not sure when but I’ll have a CT scan at some point after discharge to determine if this treatment has cured me. The best available stats are that the chances are 50%. But that’s not a wholly reliable estimate as it is based on outcomes using an older and less sophisticated type of treatment. So the chances are probably better but no one knows by how much. So Donald has been impeached. Let’s hope he’s removed from office. Let’s hope it’s clever stuff.

Apparently it takes 3 to 4 months to recover from the treatment by which they mean I’ll be feeling pretty rough for most of that time. That’s not so clever.

Love

Nigelxxx

23 June 2017

Hello friends

Today is day two of my admission to Derriford hospital. I have a very nice, comfortable and sunny room with bucolic Devon views of the hospitals air con and central heating ducting. The staff are lovely and the food edible. Chemo started as soon as I was admitted.

They’re pretty relaxed in this first week about my movements – I can wander around the hospital and I can see any number of visitors. When the chemo destroys my immune system (in about a weeks time), I’m confined to my room and I’m allowed very few visitors. I should be out in 3 to 4 weeks.

Love

Nigel

6 July 2017

Hi Pam and Mairi.

I’m not inclined to send mass emails about latest developments as I don’t want to make a big deal of things. But if anyone asks please don’t treat it as a big secret.

These details are:

I have gastrointestinal mucositis which gives me very, very strong chest pains for which I’m taking frequent self-injections of proper morphine.

I’ve also got a hiatus hernia but medical opinion is divided about whether this is a big deal.

I’ve been running a very high temperature (over 39) but it has just come down.

You can tell those who know me a bit better that I’m shitting myself a lot too but I’ve got used to nurses dealing with this. I’ll be catheterised in a bit as I can’t pee and I have a litre of urine that needs to be expelled.

The doctor thinks I’ll be like this for days, possibly longer. It’s hard to predict.

I don’t want a fuss made of this. None of it is unusual and the medics are pretty chilled about everything.

Love

Nige X

20 July 2017

Dear Pam and Mairi.

Good news: I think I’ve turned a corner: the worst side effects seem to have gone, I’ve had sufficient strength to walk to the restaurant on the floor below to buy chips, although they were bland (as all food is at best) I ate them with pleasure or without wanting to be sick.

The appetite is still poor and many foods and drinks taste disgusting (which worsens my appetite). And, of course, my energy levels are still low. So some way to go.

I hope  I’ll be discharged in a week if not sooner. The doctors will first want to be sure that my infections are under control. I’m hoping for a time estimate from the doctors asap.

How’s you?

Love

Nigel xx

22 July 2017

Dear friends

After 4 weeks banged up at the NHS’s pleasure, I was released yesterday. The experience was gruesome – I won’t bore you with the details but the side effects of chemo and the stem cell transplant; the effects of the planned destruction of my immune system and bone marrow; and the symptoms of the infections that I acquired are not ones I’d wish on anyone, not even Jeremy Hunt. I wasn’t well enough to receive visitors, so please forgive any rebuffs.

The doctors and nurses were absolutely fantastic and I can’t even begin to describe my gratitude to them. They got me through a very tough time.

As for Donald’s fate, I’ll know in 3 months when I have a CT scan to determine if he’s left the room. In the meantime it’s a slow recovery from being super-knackered and very regular monitoring by the hospital.

With love

Nigel xxx

Chapter 4: Progress

“CT scans were carried out at periodic intervals to examine whether the tumour had reduced in size to establish whether chemotherapy was working. The first CT scan after the start of chemo was carried out in mid-January and a second in late March.”

19 January 2017

Dear friends

I had a CT scan on Tuesday to find out whether the tumour has changed size. I just spoke to Jan (the Macmillan nurse) who told me that the notes record a “significant reduction” in the size of the tumour and that there is less cancer in the lymph nodes. Also, the blood clot on the lung that appeared in December is going. So, Donald, you’re f***ed.

Nigel

24 March 2017

Dear friends.

Some of you will know that I’ve been unwell for a few weeks.  I’ve had (and still have) very unpleasant gastro symptoms which have left me exhausted. I’ve been too unwell to have my 6th and final chemo cycle.

I will be admitted to hospital sometime today for a laparoscopy – ie keyhole surgery for an internal examination and biopsy. I don’t know whether the surgery will be carried out today, this weekend or another time.

The reason for the surgery is that a CT scan I had on Tuesday found shadows which might be cancer. The surgery is to determine whether these shadows are cancerous as CT is unable to do this. I’m not sure whether/how the gastro symptoms and the shadows are linked but presumably the laparoscopy will help answer this. It’s possible I’ll also have a colonoscopy.

They’re not sure for how long I’ll be admitted and diagnosis/treatment/prognosis will depend on what, if anything, they find.

Obviously I didn’t expect to be here, especially after such a promising mid-point CT scan. To say the least, it’s disappointing and I hope the shadows aren’t cancer. It now feels like a very different game.

Love

Nigel

24 March 2017

Dear friends

Plans have changed. I just took a call from one of the haemotologists. Surgeons think the surgery is too risky so that plan has been abandoned. I will still be admitted today to get my general health improved (including the gastro problems) so that I can handle a different type of chemo regime. The doctor is not sure when that will start but probably next week. The haemotologist also told me what the CT found. This is that the original tumour has increased slightly in size but there are no shadows or intimations of cancer elsewhere. The doctor referred to this as a sign of the ‘progression of the disease’. It all boils down to 4-6 months of chemo and the hope of remission.

Love

Nigel

25 March 2017

Dear friends

I’m sending this text to a small number of friends to summarise the latest. I’m afraid I going to be pretty blunt as I’m not keen on pussying footing around. I’ll send a more detailed text to more people next week once I’ve checked my facts with a doctor.

I saw one of the haemotology consultants earlier today. He laid things very frankly on the line. Things are pretty serious. It all boils down to a)next week starting new chemo and stem cell treatment to end in June /July b)a 50% chance of living two years without cancer if there’s no tumour at the end of treatment and a fairly normal life expectancy thereafter and c)its curtains if treatment doesn’t begin to work after the first two chemo cycles or if there’s still a tumour at the end of the treatment.

It’s sobering stuff. We should hope for the best but be prepared for the worst.

Nigelx

27 March 2017

Dear friends

I was completely misinformed about the CT results when I was told last week that the cancer might have spread. I now know that there is no sign of cancer elsewhere apart from the original tumour. The problem is that the tumour has slightly grown in size from its reduced size in January. I’ve been told by  a consultant that this now means that matters are very serious. I’m going to be frank in this email in explaining developments, treatment and prognosis. Please forgive me if you find any of it shocking.

The keyhole surgery has been abandoned as the surgeons thought it too risky. But I was still admitted to hospital on Friday to help improve my health in readiness for new chemo and to have a colonoscopy tomorrow to investigate my gastro symptoms. If the colonoscopy doesn’t find infection or anything else untoward, what they call ‘salvage chemo’ will start this week.  This is a different cocktail of drugs to my previous chemo, it will be administered every 3/4 weeks and after the second cycle a CT scan will be taken. If the tumour is responding I have a third cycle. I then get a week’s intensive chemo followed by stem cell treatment.  I spend 3 weeks in hospital for this latter treatment after which a CT scan will be taken to identify whether the chemo has worked. This regime will be completed around June/July. The consultant also told me that I’ll need 3 or 4 months recovery as the treatment will leave me exhausted.

The most sobering issue is how my life expectancy has changed. If the tumour is destroyed after this treatment, my two year disease free survival chances are 50%. (The equivalent chances with the previous chemo were 75%). In Plain English, this means that I have a 50:50 chance of being free of cancer for the first 2 years after chemo has finished but only if the tumour is destroyed by the chemo. Thereafter, I can look forward to a more or less  normal life expectancy if I survive for these first 2 years without cancer. The prognosis  is very poor if the tumour hasn’t disappeared at the end of treatment.  The prognosis is also very poor if the tumour doesn’t respond after the first two cycles. By very poor, I mean its curtains.

In spite of everything, my spirits are in reasonably good shape – I’m focussing on positive outcomes, taking each stage as it comes and I give relatively little head space to the worst case. My health has improved since being in hospital to the extent that I have more energy and my appetite has improved (I even enjoy hospital food!).

That’s about the sum of it but feel free to ask any questions. And thank you for your support.

Love

Nigel

27 March 2017

Dear friends

There’s more prognosis news that hasn’t exactly got me jumping for joy.

My chances of responding positively to the second round of chemo drug injections are just 20%. (By positive, I mean the tumour must show signs of shrinkage). A positive response is needed to continue with the treatment as described in my previous text. I will have had the second lot of injections (known as a cycle) in about 2 months time.

If I don’t respond positively, I’m likely to be offered to participate in a clinical trial that has shown promising results. So it’s not definite curtains as I had previously said.

Love

Nigel

28 March 2017

Dear friends

I realise I’m giving you some stats information that to geeks like me are fascinating but to others might be less than clear and perhaps might easily be misunderstood.

At the risk of teaching you to suck eggs, it goes like this…

  • Doctors can not make tailor made predictions about whether an individual patient will respond to treatment or predict their life expectancy. The methods don’t exist to make these predictions.
  • They can only estimate a patients chances based on how patients in general respond to treatment or for how long they live.
  • These are called population estimates. So, for example, they know that half of all the population of patients given the treatment I’m about to receive with my type of cancer will live for 2 years without cancer. Cancer will return for the other half in these 2 years.
  • The stats they’ve given me and that I’ve passed to you are population estimates. They are not a prediction tailored to my specific cancer and as such are relatively crude. Never the less they are a very reasonable guide to my chances.

I hope this helps.

Love

Nigel

Chapter 3: A&E admission

“On 3 December I was admitted to A&E because of symptoms that I was a risk of having neutropenic sepsis, a potentially fatal condition caused by an immune system weakened by chemo therapy. I had a 13 hour wait on a trolley before a bed could be found. 

“I wrote to the Plymouth Herald about the A&E wait which I linked to bed shortages caused by inadequate social care funding. The paper turned this into a story which they published.  TV news outlets picked up on this story as part of the social care funding debate that dominated the news at the time.”

3 December 2016

Hi Pam and Mairi

After many hours in A&E, I eventually got a bed on the medical assessment unit mid-afternoon and I’m in here till tomorrow.

It transpires I was misinformed about or misunderstood the diagnosis earlier. A clot has not been diagnosed but they’ve treated me with meds as if I had one. I’ll be getting a CT scan at some point this weekend which is the only way of diagnosing a clot. A possible alternative is shingles but they can’t test for that. Meantime they don’t know what’s wrong.

Hope your weekend is more interesting than mine!

Nigex

21 December 2016

Dear friends

Some of you will know about my brief media flirtation about my A&E experience on the back of a letter I wrote to the Plymouth Herald –  they turned my letter into a story (see below). This led to me being interviewed this morning by ITV Westcountry news. For those who receive this program, the item will be broadcast either tonight or tomorrow night between 6.00 & 6.30 and 10.30 & 10.40. I’m told it’s more likely to be tomorrow. I’m not sure I’ve ever watched ITV before. Will I need a lobotomy?

Nigel

http://www.plymouthherald.co.uk/cancer-patient-has-unacceptable-12-hour-wait-on-a-e-trolly/story-29994461-detail/story.html [This link no longer works]

9 January 2017

Dear friends

You might know that it was a less than satisfactory experience being interviewed by ITV southwest news about my A&E experience. In spite of this, I’ve agreed to be interviewed about the same thing by ITV’s This Morning at about 10.30am tomorrow.

My interviewer will be Philip Schofield, the Paxman of breakfast tv. I  described him as Mr Beige to the journo collecting background info. She said I probably shouldn’t call him that on air.

Nige

10 January 2017

Dear friends.

This is self-promotion/ego trip text version 2. I’m on Channel 5 news tonight at 5.00 and 6.30. It’s about the usual bollocks. It’s a bit down market though. I want Channel 4 news!

Nigel

11 January 2017

Dear friends.

This is self-promotion/ego trip text version 3. Channel 5 news didn’t run my interview about my A&E experience on Monday as the cameraman had techie problems with editing. Instead they’ll run it tonight at 5.00 and 6.30.  It will be about 45 seconds long, so not much scope for banging on about the big picture about social care funding. At least the big picture is now getting decent media coverage and the opposition appear to have woken from their slumber. Apparently the local BBC now want to interview me.

Nigel

18 January 2017

Should you be so inclined, my last gasp of media attention is on BBC Spotlight tonight. Jenny (the journalist) has put together a special piece about the social care crisis. Spotlight goes out at 6.30.

Chapter 2: The start of chemo

“Once I had recovered from the surgery, chemotherapy could begin and the process for this started in early November. Six ‘cycles’ of chemotherapy were to be delivered once every three weeks. A cycle is the delivery of chemotherapy drugs administered over a few hours by nurses on each visit to the hospital within a specified period of time. R-CHOP cycles are three weeks each.”

4 November 2016

Dear friends

Apologies again for the mass text but I just wanted to update you following my first  oncology clinic yesterday.

The key take home message is that the hematologist’s intention is to cure me of the Non-Hodgkins Lymphoma. Mark, my GP friend who came with me to the clinic, told me that the wording of this intention in terms of ‘cure’ is a significant indicator of their expectations.

They haven’t staged the NHL yet – this is done on a 4 point scale to measure the extent of spread. The less spread, the lower the stage number and the higher the chances of cure. The odds are 50% if it’s stage 4 and better if it’s stage 2. Staging will be done once a radiologist has advised on whether my adrenal gland has been affected and so I’ll know next week whether it’s a stage 2 or 4 cancer. The cancer is not in the marrow which is good news.  No treatment would mean curtains within a few months, so obviously it’s worth a punt.

Next Thursday I start taking steroids for 5 days and the following Tuesday I have a whole day of chemo. Subsequent chemo will be 3 hour sessions every 3 weeks. They’ll use CT scans to measure tumor shrinkage after the third cycle and at the end of treatment.

So it’s a wait and see game of whether and when chemo works (and in what context*). I’m sticking to an optimistic view or, to be more precise, I’m not thinking about the odds very much and I’m trying to take each day as it comes. As the wise Seneca (one of the founders of Stoicism) said “The greatest obstacle to living is expectancy, which hangs upon tomorrow and loses today. You are arranging what lies in Fortune’s control, and abandoning what lies in yours…The whole future lives in uncertainty: live immediately”. Who would have thought I’d be advocating that sort of thing even a few weeks ago?

Take care,

Nigel x

*This is a geeky researcher joke which hopefully will be lost on most of you.

11 November 2016

Dear friends

Forgive the mass text. It’s not a very personal way of communicating but it helps prevent Chinese whispers.

I had another oncology appointment yesterday and the treatment plan has changed slightly. They have found a tissue mass around my adrenal gland but can’t tell if its benign or malign, so they will carry out a PET scan to answer this question. (PET scans can measure the metabolic activity of tissue). If its cancer, then I have stage 4 NHL, if not I have stage 2. Stage 4 means chemo will also be delivered into my spinal chord as well as on an IV line. So the PET scan is on Tuesday, steroids start on Wednesday and chemo on Thursday.

I have named my main tumor Donald. I’m told that when the steroids/chemo starts, the unwelcome little shit that no one expected will start to shrink straightaway and the discomfort will diminish. So my body has become a political metaphor.

To give myself something to look forward to, I’m going to give myself a good holiday when I am cured. My current destination  shortlist is Rome, Barcelona, Alexandria, Tallin and Middlesborough.

Pip pip (as Bertie Wooster would say)

Nigel

PS It’s just come on the news that Leonard Cohen has died. Sad. He’s a Bhuddist, so he will expect to be reincarnated but as what I wonder.

19 November 2016

Dear friends.

Yet another global text I’m afraid to update you on treatment.

This week has been the start of treatment proper: A PET/CT scan to nail diagnosis, the start of chemo and two subsequent hospital visits for routine follow ups. A mix of good and bad news, mainly good.

The bad is that it’s a stage 4 cancer meaning in my case it started life in my bowel and then spread to lymph nodes elsewhere. I’ve had post-chemo chundering and nausea which have left me feeling rubbish.  I’m told this is not at all unusual. And hospital visits have been very long either because chemo takes ages or it’s a long wait to get seen by a doctor(but this seems to be the norm). And abdominal pain persists but they’re not sure if this is post-surgical pain or the tumor being a pain in the neck.

The good news is that the mass around the adrenal gland is not cancer thus meaning no risk of spreading to the brain. This has also avoided the need for chemo to be delivered through a lumber puncture. In spite of being stage 4, four year survival chances are 80% and possibly higher. Post chemo blood tests have shown my kidneys are doing the tough job of handling the waste from destroyed cancer cells. No hair loss yet but I’m not counting chickens (if that metaphor makes sense). And the nurses and doctors are all very kind and competent. Thanks god for the NHS eh? So hopefully my Donald is being kicked hard in the balls much as we’d like to do the same to one elsewhere.

The stars of the week have been Ian, Mandy, Pam and Mairi for ferrying me to and from hospital and their patience in staying with me for very long visits. And Pam does a mean poached egg on toast. And thanks too for everyone else’s best wishes. Thank you guys, I’m so lucky to have your support.

With love

Nigel

Messages on the ‘big c’

[Postscript: Nigel Charles passed away in Plymouth (Devon) on the 10th July 2018, aged 56. This site is a lasting tribute to him and the hundreds of moving – and often darkly humorous – messages he sent throughout his cancer journey.]

I have cancer. In fact, at the time of writing this – late May 2018 – I’ve been given just a few months left to live. This website tells the story of my cancer journey through the 46 text messages and (lately) several emails I’ve sent in the nearly two years since I was diagnosed. 

From the start, the texts have been a semi-public journal: a way of updating friends and family on what’s been happening – the downs, ups and downs since finding out I had Non-Hodgkins Lymphoma. They have been terse and they have been mini-essays. They have discussed my many experiences in hospital, and my attempts to make the most of my time – from sculpting to driving down the motorway with the car top down.

Throughout I’ve wanted to put a light touch to these very dark issues – the best way of dealing with ‘Donald’ – the name I gave to the lymphoma early on. (No prizes for guessing where the name came from…).

Cancer scares some people. Many are cured of it, the Daily Mail seems obsessed by it as much as it is by house prices, and there are plenty of tiresome clichés about the disease – “so and so’s battle with cancer”, “the tragedy of [insert name of celebrity] fight with cancer”.

But cancer is not a battle or a fight. Battles and fights involve two sides – often with weapons of steel or word, with an expectation that both are in with a chance and an implication both sides have chosen to be there. Battles are attempts at annihilation or, at least control and domination, of one by the other.

A cancer patient does not have a choice to participate; they have no weapons beyond what their doctor chooses; the cancer patient cannot annihilate, control or dominate. That’s out of their hands and in the hands of surgeons, oncologists and haematologists. They’re spectators at someone else’s battle.

But how can you write about cancer without descending into tabloid cliché or feeding people’s natural fears about the disease – and what can you say that hasn’t already been said?

This website – and the texts captured within it – is an attempt to recount my cancer journey in full. It is a factual narrative of my diagnosis, treatment and prognosis journey as told by me to friends and family by using mobile phone texts. 

And as I wrote in a recent message (the first sent by email in fact), I don’t have a naff bucket list. My over-riding wish is to be creative and positive, and to be as sociable and solitary as I choose. I’d like to have these things without letting symptoms, medical complications and the stress of the prognosis get in the way too much. The biggest issues have been tiredness, pain that my routine analgesics don’t always manage, dealing with bad or disappointing medical news, and not always handling the prognosis with equanimity.

Other than to keep them informed about progress, I had no desire to reveal startling epiphanies about life’s meaning, or the paradoxical experience of good emerging from the dark.

But you might, just might, find that such stories emerge from the text. It is my hope that those affected by the disease can find something to relate to with my story or to have a better sense of what could happen to them next.

Anyway – I’ll let you start:

Thanks for reading,

Nige x

South Brent, May 2018

_DSC6252_E

Chapter 1: Admission and diagnosis

“On 14 October 2016 my GP made an emergency admission for me to hospital with severe abdominal pain. During the first few days of being in hospital various tests and examinations were carried out which established that I had a cancerous tumour growing in my abdomen.

“Through phone calls, texts and word of mouth news of my admission and the initial diagnosis got out to my friends and family. The first update by text was sent to my friends on 17 October. In the early stages I mistook oncologiy for haemotologiy which was the branch of medicine that dealt with my type of cancer.”

17 October 2016

Dear friends

Apologies for texting more than one of you at the same time.

I spoke to the consultant this morning. It’s all a bigger deal than I thought. There was so much info to take in that it’s all a bit overwhelming.

My notes tell me:

  • There will be an op this week to remove as much as possible of the tumor, to find out exactly where it’s growing from and to take a sample to find out the type of cancer.
  • Some (a lot?) of bowel will also be removed. Biopsy is too risky as the tumor is wrapped around the bowel and there is a risk of piercing the bowel.
  • The surgery won’t be a cure as some cancer will be left behind.
  • Post surgery treatment will be chemo but these decisions won’t be made till I’ve recovered from surgery.
  • Chemo will start at a minimum of 6 weeks post surgery.
  • I’ll be off work for a minimum of 6 weeks and possibly longer.
  • The exact post-op treatment and prognosis is impossible to predict as so much depends on what the surgery reveals.

I think they’re the main points.

Nigel x

18 October 2016

Dear all.

Apologies for mass text.

I’ve just seen the surgeon and there is a change of plan as they will not now attempt to remove the tumor. This is because the proximity of a main artery makes it too risky and it might not be necessary anyway. The surgery will be to carry out a bowel bypass. This will rectify the obstruction caused by the tumor. They will also take a biopsy. This will identify the type of tumor. If it’s the good news they expect, it’ll be a lymphoma which is likely to be curable by chemo and so surgery will be unnecessary.

The op will be this afternoon (if there are no emergencies that they have to deal with) or tomorrow. So if planning to visit phone me to find out if I’m in surgery. Also, if you give the ward staff the password ‘Clifton’, they will tell you if I’m in surgery if you phone them . I’ll also try to send a text to you all before I’m taken down.

Love

Nigelx

19 October 2016

Dear friends.

The surgeons did their job yesterday, so the next goal is to get up and about. I’m a tad sore, so this will be done slowly. Today will be visitor free while I get some energy back. Thanks for all your kind words and support.

Love

Nige xx

20 October 2016

Dear friends

I’ll sum up what’s happened and is  happening…at least as far as I understand it.

There was one apple sized tumor causing two problems. It was pressing hard on the bowel, effectively blocking it and stopping it from working. And the tumor is a problem in its own right because it might be part of a spread of cancerous cells.

Because the tumor is too close to an artery, it was too dangerous to entirely remove it. But a large amount was removed to find out exactly what type of tumor it is. This will determine the treatment that comes next but we won’t know the results for another 10 days. If I’m lucky, there are no other cancerous cells, chemo will destroy the remaining part of the  tumor and I’m cured. A bit less lucky, is not cure but destruction/control of cancerous cells and extended life. (This last sentence might not be scientific but it’s the drift). I don’t want to think beyond these options.

The blocked bowel has been rectified by cutting the bowel either side of the blockage and joining the two good ends together. But the bowel isn’t functioning yet. So for the next week or so, I’m fed artificially through my neck, saline solution goes into my arm, I’m catheterised and my stomach is drained by a pipe running from it and out of my nose. Plus there’s pipe work for being fed drugs and anasthesia. I’ve got more bloody tubes going into me than the Underground. I’m only allowed to inbibe sips of water and the odd boiled sweet. A functioning bowel will be indicated when I start farting (I’m serious). I’m not sure how long after that I can eat proper food but I hope it’s not long. The consultant has advised patience. He’s Polish, so maybe that has something to do with the amount of plumbing that’s been installed into my body.

It could be worse. There’s an old man opposite me who has barely opened his eyes, sometimes is in distress and the rest of the time he looks barely conscious. I’ve got my lap top and phone for tv and radio and books to read.

I never really knew what nurses did. But they’re amazing. They have such high levels of technical skills in operating complicated machinery and kit, administering a vast amount of drugs, dealing with patients in trouble and, I’ve seen it happen, advising the doctors how to do their job. And the best ones really care.

That’s the long and the short of it for now.

Love

Nigel xx

26 October 2016

Dear friends.

Apologies again for the mass text. Some of you have been asking today about progress, so I wanted to give you the good news. First, I’ve been discharged from hospital and I’m spending a couple of days at mums. Second, I was given the diagnosis today. I have the potentially curable form of lymphoma and chemo will start in 2/3 weeks. I had a bone marrow biopsy today (not a pleasant experience) which will establish whether the cancer is aggressive [ie has spread], so I’m not entirely out of the woods. First oncology appointment is next week.

With love

Nige xx