I am quite happy to blog into the ether, basically talking to myself and trying to make sense of what has and is happening to our family on this journey. If it helps with anyone else that’s a bonus. It’s not straightforward as I write though.
In late September my husband let slip at the dinner table that he was feeling some discomfort in his stomach and had been for few months. I had noticed a change in his eating for a few weeks, but he just fobbed me off saying he was eating too much or it was indigestion. For him to admit he was in pain raised all sorts of alarms. This is a guy who would stagger into work with a herniated disc.
I pushed him to go to the doctor and he got an appointment at the end of October. The first GP thought he had IBS, took bloods and put him on a Fodmap diet. 10 days later a second GP rang. He stated that the bloods were fine except for his sugar levels. They were a bit high and it looked like he had Type 2 diabetes. Hubby asked was that the reason for his tummy pain? “ What pain? “asks the GP. Hubby explained that was the reason he went to the doctor. The second GP made an appointment to see him. This was the start of December.
I went with him to this appointment as I wanted to be sure if Hubby was giving all the information or the missed information was with the GP. The doctor could see he wasn’t in great shape by this point and I was able to give a clearer picture. Loss of weight, lack of appetite, reduced food intake. Concerned with this information and the pain for a few months, the GP referred him for urgent investigation and referral to the GI Consultant. He had a CT scan in the week leading up to Christmas. The next day the first GP rang to say that the scan looked good, some shadows but no cancer. Happy Christmas! She said they would send him for an ultrasound for further clarity.
He went for the ultrasound two days before New Year and we got a call within two hours from the same GP. The pancreas looked distended and oddly shaped, there were some suspicion spots on the liver that didn’t look like cysts. Cancer was the likely diagnosis. Not Happy New Year ! Another urgent referral to chase up the consultant.
The second week of January we go to that appointment to see the registrar. He was unhappy with the scans and reporting. He believed it wasn’t cancer but pancreatitis and commenced him on Creon (pancreatic enzymes) to help him eat and digest food and ordered an MRI. This was starting to be like ‘diagnosis Hokey Cokey’! Two weeks later we get a call for an appointment with the hospital. Hubby took the call and thought it was with the dietician.
I wasn’t going to go but we thought as I do the shopping and cooking, perhaps I should. The appointment was actually with the Specialist GI Nurse who proceeded to tell us the results of his MRI showed it was definitely pancreatic cancer, secondaries on the liver, inoperable, referral to Clatterbridge, consideration for chemo. I almost fainted at this point. The nurse asked was I surprised. I said yes, considering we’d been told it wasn’t at the last appointment. I told her we thought we were coming to see the dietician. I was expecting to hear what to get him to eat! Hokey Cokey - well and truly shaken all about.
Referrals for more bloods, MRI for some leg pain, liver biopsy to confirm the type of cancer, MacMillan nurses, district nurses, dietician…So much information. Lots of phone calls and meetings with these agencies and the wait to see the oncologist. The worst couple of weeks by far. Hubby was not eating properly. He was fed up of milky Ensure drinks. Changed to juices, but too sweet. Eating less and less. He was still going to work against my advice.
He then got a DVT three weeks ago and ended up in A&E. So then I am sticking needles in him for anticoagulants and testing his blood sugars for a week and he finally got his appointment with the Oncologist two weeks ago at a Saturday morning clinic they put on. I was expecting to hear nothing could be done, but it was surprisingly positive. Chemotherapy was the plan. The secondaries in the liver were tiny. The MRI for the leg pain showed nothing cancer related. So he was to stop the anticoagulant therapy last Monday, attend Clatterbridge Liverpool on the Thursday morning to get a Port fitted and then go to Aintree for his first chemo. And then it all went pear shaped again.
On Wednesday afternoon I got home to find him asleep in the front room, which has been his routine. But he was very warm and I couldn’t get him to eat or drink and his blood sugar was a bit high. I got him to drink a bit of water and he cooled a bit but still wanted to finish his sleep. When he woke an hour or so later he still didn’t want to eat and was hot again with higher blood sugar. I called the Clatterbridge out of hours who said get him to hospital. I called 111 and they sent paramedics. It was a long wait though.
We were in A&E from 1 am and they did bloods etc. They were concerned with the confusion at this point and did a CT scan and chest X-ray. Then the kick in the teeth. He’d had a stroke. So we spent the night in A&E on their ward. He was admitted to the medical ward at tea time yesterday while they awaited a bed on the Stroke Unit. He can understand everything we say and can speak clearly. But he forgets or can’t recall some words. He can move all his limbs and walk, but he has some peripheral vision loss. I now cannot visit him because of Covid. He also has a water infection.
Clatterbridge assure me his chemo will go ahead, but it will be rescheduled. There are Clatterbridge Oncology nurses based there and they are seeing him and taking part in his care plan. He got transferred to the Stroke Unit yesterday evening. Part of me is glad he is in hospital as he will hopefully get his nutrition sorted. However with his communication issues I will need to sort out access to bank accounts. I may need to get a power of attorney. Most of the bills are shared between us, but some he gives me extra cash to pay. It’s a nightmare. I work, but his loss of earnings has put a huge strain on me. I’ve had to get signed off as I am overwhelmed.
So the journey so far has been one step forward, two back. This weekend I can do nothing, so trying to look after myself for what is to come. Difficult to face time or call him as communication is frustrating for him. He is being cared for and his treatment and rehab are on the go. I speak with staff every day, morning and evening and tell them to let him know I’ll come as soon as I can and that I love him. I’m mentally and physically exhausted.
I have son at home who finished Uni last summer. He’s been working with his Dad to save up to share a flat with his mate. My daughter is in her second year of Uni. They are not sure what to make of everything. My sister is a great source of support and advice. I know it will all work out but not sure how at this point.
