On the 5th of July 2019 our lives changed forever.
A normal day by any standards, I got up, ate breakfast, kissed Kerry and the boy goodbye and I walked to work. I knew I wasn’t feeling my best. Since getting home from our holiday to Japan I was getting progressively worse and worse.
A few hours into work I asked my manager (Deb) to be excused, I knew I couldn’t work, the pain was just too much and Deb convinced me to stop waiting for a GP appointment and get myself to the walk in clinic.
I am glad that I did.
For the last two years I would say I have been thinking that something isn’t right, I mean blood when you wipe is enough to stop anyone in their tracks. Add this to the fact you’re about to have one of the most embarrassing doctor’s consultations of your life may have delayed the process a little but I plucked up the courage to speak to the GP, booked myself an appointment and was sent home with the news. “Nothing to worry about… just most likely a haemorrhoid. Go away, use some Anusol. Come back if it doesn’t clear up.”
But… you do worry.
However, I do as I am told. It doesn’t clear up and fast forward the clock another 6-9 months and go again, pluck up the courage and this time I get a different GP. Another exam and yet again. “I can’t feel anything out of the ordinary, you should keep using the anusol and come back if it doesn’t clear up”
Except, it doesn’t clear up. In fact, it just keeps getting worse. Now what started as the odd bit of red when you’re wiping has changed, now it’s a lot, and it is every time I’m going, and now I am going some 10-15 times a day.
Now I’m actually scared to go to the toilet at all.
Now… Now it hurts to even sit down. Something’s not right here. I need someone to take me seriously, someone who isn’t my sodding GP.
I called Kerry on the 5th, I told her that I had asked to leave work early. We were bags packed, we’d already dropped Rupert off at the kennels and we were about to hit the road to Sheffield for the BMC Bouldering championships. The plans slightly changed, we were still headed to Sheffield except, I would go to the walk in centre at our local hospital A & E and wait however long it took, get checked out. Then we would head down together to the championships. Nothing happens at weekends anyways…
Oh how wrong I was about to be…
The walk in centre at the Queen Elizabeth Hospital in Gateshead is also the Accident and Emergency department. They triage everyone the same place, depending on your ailment you are assigned a different wait time. I had been prewarned it would be a decent wait, at least 3 hours. I had my phone, I had a book and a bottle of water. I was set, other than the fact I couldn’t sit comfortably. I was geared up for the wait.
They call my name, it’s merely for Triage, I get to see a lovely Nurse Practitioner. I explain the issues, she explains she’ll take my bloods, temperatures and BP. Then back to the waiting game.
I then get called in, the questioning begins. How long? How much pain? Could you rate the pain? I was then asked if I could be examined. I mean, yes of course. Surely that’s why I am here. However, this is where the mood completely changed and the questions changed too.
Now I am being asked Next of Kin questions, How did I get to the hospital today? How was I planning on getting home?
Then the doctor just comes out with it. It’s not good news he’s afraid, words like ‘Growth’ and ‘Mass’ are being used. He wants to call the surgeons from Ambulatory care. He understands it’s Friday night but there must be someone willing to take me on.
Wait… Like take me on? As in, Admit me? Okay… What’s going on here…
They ask when Kerry can get here for and I tell them she’s already on her way. I am to be moved to Ambulatory care for the surgeons to take a look at me. The doctor didn’t want to give me the news himself. He would prefer the on the spot secondary opinion. So I was transferred to that department. They turn up with a wheel chair to take me the 500 yards to the other department. I politely refuse and offer to walk to ambulatory care myself.
Kerry arrives, she’s putting on a very brave face for me. I can see that she’s struggling but we wait what seems like an ice-age for the surgeons to come and see us. When they finally do, we were ushered into a cubicle and this time Kerry is present for the secondary examination. She can see their reactions. It isn’t good. The words have now changed. They’re now using words like ‘Cancer’ and ‘Tumour’.
The surgeon and junior stand in front of Kerry and myself and deliver the news. Although it is early days and we need to perform a lot of tests. It does look like there is a tumour in my bowel. Very low down, close to the entrance/exit. Very rare in people my age but not unheard of. Sadly, something that’s becoming more prevalent. Due to the pain that I am experiencing, it makes sense to admit me. This way we can concentrate on pain management and perhaps we can get the tests completed a lot quicker.
I am admitted to ward 12 of the Q.E. This is a general surgery ward. Over the next 4-5 days I experience the NHS as best as can be expected. I will say however, the nurses truly are the backbone of the NHS, they kept me sane. I will be forever grateful for their help. Sometimes, just a smile and a offer of a cup of tea was just what I needed.
So as expected. Failed promises left, right and centre. Scans promised and then not forthcoming. Medical procedures cancelled at the 11th hour, being kept on Nil By Mouth all day for nothing. The usual NHS malarkey. The worst part of the whole ordeal is just the lack of information. You cannot ask a nurse a question that can only be answered by a doctor. You can ask, but you will be told. “I’ll ask the doctor for you” You only get to see the doctor when he’s doing his rounds, if you miss him/her, then it’s a long wait till you get to see him/her again.
Before I digress too much, over the next 4-5 days I have some standard X-rays, a CT Scan, a full body MRI, a colonoscopy and a total of 8 biopsies taken.
I was also asked to stay in hospital a further day so that they could have a meeting of department heads, discuss my treatment plan and then let me go home the same day. Could I arrange for Kerry to be at the hospital for 09:00?
When someone gives you an offer like that you’d be a fool to refuse it.
Because of the pain, because of my age, because of the size of the tumour they really did fast track this through. If you think about it this way:-
GP appointment (My GP practice, you’re looking at a 2 week wait for an appointment)
GP Referral (2-4 weeks)
Hospital X-Ray (2 weeks)
Hospital CT Scan (2 weeks)
Hospital MRI Scan (2 weeks)
Outpatient colonoscopy (2-4 weeks)
If I had been seen as an out patient, the wait time for all of the exams and scans I have had in 5 days could have taken 3 months. It’s crazy to think about, it’s all ‘What if’s’ but Kerry and I do have medical insurance as part of our employee perks with work.
I would have most certainly activated this quick sharp if I was to be treated as an outpatient.
I have now had the referral from my consultant Mr O’Loughlin to my NHS oncologist Mr Hashme, I have already met with him and discussed my current diagnosis and subsequent treatment plan.
I have also already had a second opinion with Mr Omer Aziz from Manchester’s The Christie hospital. He’s one of the top people in the country and at this time we are still waiting on certain results to see what type of cancer it is and can it be treated with a specific drug etc. Whether to use my private cover and whether it would expedite the process if any.
This next section I am going to be keeping up to date. Any new treatments or update to the diagnosis will be immediately updated here.
Please understand that I may have already answered the same question 10 times that day.
My Current Diagnosis: (what we know)
- I have a common type of cancer
It’s a Low Rectal Adenocarcinoma T3 N1 M1
- It has spread to 1 mesorectal lymph node in my bowel
- I have 3 nodules in my lungs, 2 on one lung 1 on the other. Suggestive of metastases.
- A possible tumour in one of my Seminal Vesicles.
My Treatment Plan:
- Starting with Chemotherapy Wednesday 7th August
Irinotecan with 5FU and folinic acid
This treatment is to deal with the Systemic cancers
- Complete Bio-marker testing to see if there is a potential for anti-EGFR Treatments.
- Radiotherapy once I have responded to the chemotherapy to reduce the size of my primary tumour.
- Operation to remove the cancer.
Complementary Treatment and Clinical Trials:
- Care Oncology Clinic
- Metformin / Atorvastatin / Mebendazole / Doxycycline / Flarin drugs to complement the chemotherapy.
- Paracetamol 100 Mg (2 x 4 times daily)
- Tramadol Hydrochrloride 50 Mg (2 x 4 times daily)
- Oramorph (Morphine Sulfate) 10 Mg/5 Ml
Update 24/10/2019 14:30 BST
I am no longer on Chemotherapy. I have been referred to NHS surgery to have the main tumour removed.
Update 20/01/2020 14:02 GMT
Referral to Newcastle based surgery was a complete disaster. My Surgeon had the bedside manor of a Tudor age executioner. They were only interested in the quick and easy method of removing everything.
When you rush things. You miss things. It’s basic science.
The Gateshead NHS Surgery team failed to notice that the tumour has spread to my left seminal vesicle. Or if they did know about it, they didn’t tell me and they would have removed this along with the other parts they’d planned on removing. Time for second opinions.
2nd, and 3rd Opinions later with two other oncologists (Manchester Christie and London Oncology clinic) suggested a new treatment of Radio-Chemotherapy should be the best way forwards for me now. 28 consecutive sessions of Radiotherapy over week days only. Taking Chemotherapy in pill form. Then a month to six week wait and a rescan to then discuss re-sectional surgery. However I am under no illusions that if they still need to take everything out then they will do so.
Update 29/01/2020 10:00 GMT
I am now on my new treatment under oncologist Dr Ian Pedley. as above 28 consecutive weekdays of Chemotherapy pill form and radiotherapy to my bowel.
Treatment completed. Hell on earth. Rest and Recuperation. Scans and meetings booked.
COVID-19 Happened and everything had to go on pause. It’s understandable. There are bigger things than me right now and I needed to go into shielding. March-June No Treatment received.
I received an MRI Scan and a CT Scan and currently waiting on the results.
Hopefully, straight to planning and get to the Christie in Manchester and start to get these cancers removed.
Mid June 2020
The results couldn’t have been any better, deservedly so considering the hell that I had to go through.
I no longer have any cancers taking up the isotopes in my bowel or abdomen showing on the PET CT Scan. This is amazing news. We can now start to concentrate on the metastatic cancers in my lungs. Although I fear it. It’s time to get back on chemo I guess.
Late June 2020
I was correct. Dr Pedley put me on another 12 week course of Irinotecan (5FU) but this time with Avastin. I’ll never be glad to be back on chemotherapy. But I know it’s the right decision.
30/11/2020 Chemo course complete, CT, MRI and PET Scan results.
Well the results are in, my bowel and my abdomen are still cancer free and all of the metastatic cancers in my lungs have decreased in size and have cavitated (Meaning they’re dying from the insides) and now we send off the results to the SABR departments
02/01/2021 and more – It’s a No from SABR
So the SABR departments say I am not a good candidate for SABR (again) and Dr Pedley refers me for Cyberknife.
Without doing another update, I get the whole of the Royal Marsden’s MDT opinion and sadly, they also recommend more chemo as at this time, I am not a good candidate for Cyberknife or Cyberknife with keyhole surgery.
29/01/2021 It’s back on Chemotherapy
Dr Pedley applies to Aviva for 12 sessions of chemotherapy. 6 a rescan and then 6 more if it’s needed.
It’s going to be tough.
11/05/2021 Scan results are in
Well, the scan results are in and they’re good, just not good enough. Dr Pedley has sent off my results to the Royal Marsden, but he expects that Dr McDonald and Prof Cunningham will give me the same answer as last time.
I have requested a break from Chemotherapy. Just a week or 3. I need to recover before I can do another 3 months and another fucking summer of chemo.
I NEED A BREAK!
23/06/2021 Back on treatment
Today I restarted treatment, we are on #7 of 12 and though I know I need to be on treatment, calling my oncology team and telling them I was ready was one of the hardest things I’ve done in a long while.
Dr McDonald and Professor Cunningham agreed with Dr Pedley. Results not good enough. Too many mets to deal with for Cyberknife, so get back on chemotherapy and crack on.
25/07/2021 Scan results are…..
Shite again, this is terrible news. 12 rounds of folfox left me with all the mets. They increased in size by 10% but they’re being resistant to folfox and folfuri. I am now to be referred for medical trials as the only other chemo being offered is palliative. I am referred to the Bobby Robson centre for cancer care to see if there are any other drugs, therapies that are specific to my own KRAS mutation.
November/2021 Bobby Robson Centre
I receive a letter inviting me to the centre to meet with Professor Plumber the head of medical trials.
Information given about the types of trials. They’re all phase 1 and 2. Nothing will be phase 3 with placebos. They will come back to me with an invitation to a trial they think will match with my mutation.
14/01/2022 Bobby Robson centre.
I was invited to meet with the Doctors who will be giving me care whilst on a trial. I was given the information that because the drug they were thinking of putting me on was similar to folfox and gives neuropathy. I am sadly not suitable for the trial as I have too much neuropathy already. However due to the last time I was on oxaliplatin. The plan is to put me onto a trial that has that based. I await for an update.
27/05/2022 Still at the Bobby Robson Centre for cancer care.
It’s been 4 months since I last updated the story. I had to wait a good 2 of them for…Well I am not quite sure what all the waiting is for. I’m now established on an unending trial of an Oxaliplatin only trial. The purpose of this trial is to infuse the patient in an hour rather than over 32-36 hours which when I have been it on it in the past has been the norm.
Members of the trial are getting it in different frequencies. I happen to be the one getting the largest dose. At 100kg they can afford to give me the largest dose but I am also on 2 week frequency. There are others on 3 and 4 if I remember correctly.
I’m now 4 doses in and completely bald thanks to the alopecia. Although the other side effects such as vomiting and nausea seem to have left me alone, the usual suspects such as fatigue have not.
I have to take a G-CSF drug to stimulate my white blood cells.
I’m currently 2 doses away from a scan. No break though. If it’s working we plough on. We only stop if it isn’t working.
However, we are now up to the point where merely slowing my disease is ‘working’