Hi all,
I posted back in Nov/Dec last year following my partner being diagnosed with T4 oesophagus cancer at the G junction.
He hadn't been ill at all, just started to feel uncomfortable when eating, feeling the food was getting stuck. When this didn't ease, he contacted his GP and a endoscopy was arranged leading to a diagnosis.
That was 05/11/24. He continued working, feeling mostly fine until mid Jan 2024, when he started chemo. Following his first round of chemo, the first few days he didn't feel too bad, but then he started struggling keeping food and drink down even the smallest sips of water.
He phoned the emergency number Christies had given him and they told him to go in. He was admitted and first thinking it was sickness caused by chemo, they gave him anti-sickness and fluids. When nothing changed over the next few days, they arranged a swallow test that revealed the tumour had grown bigger and there was no real gap for food or drink to get past hence why it was coming back up.
They fitted a feeding tube and he was hooked up to large bottles of brown sludge for 18 hours per day. Once he'd been on them a few days and they'd shown him how to change the bottles he came home. He was soon readmitted as he then developed an infection called C-Diff. He was put on intravenous antibiotics and put in a room on his own to prevent spreading this infection.
There was then a breakout of COVID on the ward so he was also being tested for that daily with restrictions on visits and mask requirements on the unit.
This resulted in his 2nd round of chemo being delayed until the infection cleared. Our 16 year old son was sitting his GCSE mock exams at this time so I was working full-time, going visiting my partner straight after work, getting home late, helping my son revise for a while, making tea late, trying to unwind for a while before going to bed and repeating the same the next day.
After his 3rd round of chemo he got C-Diff again and was admitted into hospital again with his 4th round postponed again.
Upon completing his 4th and final pre op round of chemo, scans showed no real benefit from the chemo. He remained on the feeding tube but started being able to eat and drink somewhat again, so chemo must have shrunk the tumour a little, but not enough to be reclassified as a T3.
His surgery was then postponed as the specialists wanted him to put a little weight back on and rebuild some of his strength so he was going to prehab gym sessions.
His operation was set for 22nd May. The plan was keyhole surgery first through his abdomen to remove most of his stomach and form a sausage shape link with what remained to bridge the remaining oesophagus to the small bowel and then to go through the chest, deflate the lung and remove the lower oesophagus.
On the day, having mentally prepared and having taken time off work myself, having arrived at the hospital, been admitted, talked with researchers, the anaesthetist and the surgeon, gowned up, had his cannula fitted and bloods took, we were then informed they had to cancel the operation due to a huge power cut and needing to use back up generators for emergency operations only.
Nobodies fault but obviously a huge blow with uncertainty when they'd reschedule. Fortunately it was only further delayed by 2 days
2 days later, we arrived again at 7am and I left him at 9am as he headed into theatre being told the surgeon would phone me after the operation. 12 hours of surgery later I got the call from the surgeon informing me he was out of surgery, it had been successful but they'd ended up having to do open surgery due to the size and position of the tumour and they'd ended up having to remove the entire stomach due to seeing lesions they were worried about (that turned out to be nothing but we understood it was better to be cautious than potentially leave something concerning).
The surgeon also said they'd removed surrounding tissue and paused the op for 40 mins whilst the tissue was analysed in the lab and they'd got confirmation they'd reached healthy tissue.
We thought the worse was over. My partner was in hospital for 2.5 weeks and mostly recovered well, looking alert with colour in his cheeks sat in the side chair the following morning when we visited on the high intensity intensive care unit. He was up walking short distances with physio when they wanted him to. He did get a wound infection on the left side of the incision that ran across his entire abdomen meaning they had to take out some staples before they were due out to drain the infection then dress the wound. Then when the staples were due out, there was a small tear on the right hand side leading to 2 further small wounds. Then he also got a line infection so needed all his IVs in his arm removing and replacing and more antibiotics.
But he was discharged after 2.5 weeks with dressings for both wounds and told district nurses would come daily to change the dressings.
His recovery continued to go well mostly, except for the 2 wounds. The smaller ones on his right side joined together to become a bigger open wound and both needed packing with a special ribbon containing silver and special dressings that no pharmacies had in stock and needed ordering in resulting in some initial stress as we'd been told they needed changing daily and that the district nurses didn't carry any (turned out they did carry an emergency supply after I'd drove around several chemists panicking as none the hospital supplied at discharge were left).
Work gave me 2 weeks paid carers leave but I ended up taking a further 2 weeks off sick as felt too overwhelmed to return to work after 2 weeks. Our son's schools exam officer applied for special consideration resulting in a 2-3% increase to his marks due to the difficulties whilst he was doing his exams.
The wounds weren't really healing, the left side one became infected twice leading to my partner being prescribed 15 antibiotics per day over 2 weeks courses. The community tissue liability team authorised expensive specialist Pico dressings that have pumps attached that generate new cells to promote healing and only need changing twice per week instead of daily. Many times though, the district nurses didn't come out on the days they were due for changing with us phoning them towards the end of the day to be told they'd cancelled by the admin team due to being short staffed even though each time the nurses said the dressings had to be changed on time and he was a priority case that shouldn't be deferred. So often we had to argue this resulting in the out of hours team being sent (on one occasion one arriving who had never been trained to change PICO dressings so couldn't do it).
He had his follow up appointment with one of the surgical consultants where he was just asked how he was feeling, what he was eating and the open wounds checked. As he was eating well, but still losing weight, it was determined his pancreas wasn't producing enzymes that absorb fat from food so he was prescribed medication to rectify this.
Then he had his first post op appointment at Christies to discuss his post op chemo. This was about 6 weeks post discharge. The Dr we saw then was the first Dr to tell us that because cancerous cells had been found in 5 of the 42 lymph nodes removed at the time of the op plus the size of the tumour there was a "very high likelihood" that the cancer would return and chemo may help delay the return from 12 months to 18 months but if it did return, treatment would be palliative at that time.
We were devastated, none of the Drs he'd seen daily including his main consultant on some days whilst in hospital had said this nor the Dr he'd seen the week before for his post discharge check up. Yes we knew he'd remain under the team for 5 years and yes we understood that was because the initial 5 years following a cancer diagnosis and treatment were risky for reoccurrence but at no point had we been told it was highly likely and if it did only palliative care could be given.
We had lots of questions but the chemo Dr said they were questions for the surgical team/main consultant (whom we'd seen the week before). We were also told that the post op chemo would be delayed due to the open wounds so as not to risk sepsis. They gave an appointment for 11 weeks post op and booked the chemo for 12 weeks post op saying that was the max window of time post op that chemo would still be effective but if it couldn't go ahead then, there'd be no merit in having any.
We contacted his named Macmillan nurses when we got home regarding what we'd been told and how upset we were with lots of questions. They arranged an appointment with them the following day and spent a long time with us explaining everything, but the upshot was that despite the high risk, they wouldn't do routine 6 monthly CT scans to monitor unless he had symptoms - we came away deciding to either pay for private CT scans or for him to say he had symptoms even if he didn't in order to keep a check and at least access treatment asap if there was any sign of anything coming back.
In the end though, Christies said they'd do CT scans as part of their aftercare (,it was the surgical team who said they didn't do them as standard unless there were symptoms despite saying he was high risk).
When it was time for his first post op round of chemo, both open wounds had healed sufficiently for the team to feel ok going ahead. However between the first round and him being scheduled for the 2nd round, the right side wound reopened and became infected again (the district nursing team repeatedly not coming on the days the dressings were supposed to be changed no doubt didn't help) so his remaining 3 rounds of chemo were cancelled altogether.
He had a CT scan that was clear and was told they'd send for him to have another in 6 months time. That was in September.
In October, he found a lump in his arm, he saw his GP who said he didn't think it was anything to worry about, that the location didn't suggest cancer, but due to his recent history would refer him for an ultrasound to check it out. Over the next week he found further lumps in his groin and buttock. He went back to his GP who updated the ultrasound referral to urgent but still said he didn't think there was anything to worry about.
I advised my partner to contact his Macmillan nurses and/or consultants secretary as they may be able to arrange quicker scans with him already being under their care. They arranged a CT scan. He had both scans within 3 days of each other. Both came back inconclusive so his GP referred him for a MRI scan and his cancer team referred him for a PET scan and ultrasound guided biopsies.
He had the PET scan on Tuesday 12th Nov and the biopsies on Tuesday 19th November. The Dr who did the biopsies told him the PET scan showed the lumps were swollen lymph nodes, but this didn't necessarily mean it was cancer as it could be an infection or other cause ,(presumably not being a cancer specialist he hadn't been able to interpret the PET scan).
Two days later, on Thursday, without the biopsy results yet being back, his Macmillan nurse team phoned him asking him to attend an appointment with one of the consultants on Friday and to bring a family member.
We knew it was bad news, as when previous scans he's had revealed nothing more than they already knew, they told him over the phone as they'd also done so regarding the inconclusive CT and ultrasound. Plus telling him to bring a family member was a first.
We assumed the cancer was in his lymph nodes in various locations throughout his body and he may need full removal of all lymph nodes. We looked up if that was possible and found it was but the person would be at high risk of infections and of infections spreading. Not great but it also said consultants would advise how to minimise this risk, so we thought he'd be unlikely to return to work and we'd have to be cautious and disinfect etc a lot, but that it would be treatable.
Unfortunately when we went yesterday, we were told the cancer had escaped from the main tumour site but had been too small to detect previously, and had grown and spread throughout his whole body both in the lymph nodes and outside of them in all organs and inter muscular. When we asked what that meant, the consultant who was very upset and apologetic said it meant he'd die and only palliative care could be offered. When we asked how long he had, we were told months rather than years.
They're referring him back to Christies for chemo and/or immunotherapy, but only to try to add a little more time.
We're so, so devastated. We're both heartbroken. I can't begin to imagine how he's feeling. Telling our son who has only just had his 17th birthday was awful and he couldn't stop crying for ages and couldn't even lift his head off his knees. I'm going to get him independent professional support.
My 2 older children who my partner has brought up with me since they were 9 and 10 are devastated and he has a older daughter from his previous marriage he has to tell on Sunday.
His parents are devastated and wish it were then instead of him and my family are upset.
My partner is only 51. He didn't fit any of the risk factors for this kind of cancer - not his age and he doesn't smoke, only has the occasional alcoholic drink when we go out for meals or on holidays or special occasions (and hasn't had any since his diagnosis) wasn't overweight, went to the gym in his workplace 3 times a week, ate a decent diet.
Yet this has still happened. He's a decent person, I know cancer can't detect personalities and natures when choosing who to affect, and so many other good people are impacted by this horrendous disease, but my partner and I work in the criminal justice field, he's been a prison officer for over 25 years working in the offender management unit of a cat A prison helping keep us all safe. Rightly or wrongly we just can't help feeling angry that there's paedophiles, murderers, abusers, terrorists etc that live to an old age : it just feels so unfair.
The future feels so bleak. I feel selfish even thinking or saying that about my own life and being without him as at least I have a future whereas he doesn't. I just don't want to be without him but know I can't think like that. It's just he's my best friend and supports me with all my flaws and insecurities and I can't imagine navigating this world without him.
Then there's all the practicalities which we just don't want to think about but have to. The thought of working full time during whatever limited time he has left just feels impossible as I just want to spend whatever time we have left together with him. I know work would support that, but I'd only get paid for 1 month then another month (or maybe just 2 weeks I can't remember) on half pay and the bills etc still need paying.
He's still on half pay until Feb , he'd planned on going back to work in January, but won't be now. He gets the max PIP award but we won't get anything else as we have savings (which again, I know we're very fortunate to have as I know there's many in this situation who don't have savings).
It's just so hard to take in at the moment, not just because we've only just found out, but also because he's not ill. You'd expect someone being told they only have months to live to be ill, but aside from some neck and shoulder aches which he thought was due to the weight he's lost and his bones being more in contact with furniture with no body fat cushioning, he's fine. How long that will stay the same though.
Sorry for the long and negative post. I know many will come on here looking for stories of positive outcomes to give them hope. I certainly did a year ago and had hope after reading about people being back at work or running marathons etc. We haven't given up all hope as miracles can happen, but we also have to be realistic and prepare for the worse.
His Dad had cancer in his kidney 10 years ago which spread throughout his body to his pancreas, spleen, lungs, oesophagus, spine and maybe liver as well. He was told 3-6 months and only had radiotherapy. He's still alive with the cancer only remaining in his kidney pretty much dormant/slow growing to the extent they've said something else will kill him before the cancer does. He was referred to as a miracle case- something to do with his blood. We did mention this to the consultant, but he said my partners was a different type of cancer and in the most minority of cases particularly well suited to the individual chemo/immunotherapy drugs can give 1-2 years rather than months, but it's extremely rare. So it's not optimistic that he'll repeat his Dad's remission. But we haven't totally given up.
If you're going through any kind of cancer or supporting someone who is, make the most of every moment and never put off seeking medical advice for anything unusual whatsoever xxx
