My bed in hospital was next to the nurse’s station and one morning I heard those magical words…
"Bed Grey 6, Karen Williams, she is due for discharge today."
Of course I was excited and when the doctor’s did their rounds they confirmed the news, on the proviso that I have a CT scan and that my blood markers came back today all okay.
My porter arrived with the wheelchair to take me to the CT scan, she was a very slight woman but I think she must have been in a rush because we zoomed down the corridors, leaving doctors, nurses and patients in our wake. I clung hold of the arm rests of the wheelchair fearing for my safety and was very relieved when we made it to the scanning room intact. “Some one else will pick you up afterwards,” she informed which, which I was very relieved to hear!
I returned to my ward much more sedately and even had time to talk about the weather to my new porter.
I had my bloods done, after a lot of sighing and tapping of my arm to find a vein by the phlebotomist and the waiting game began and eventually in the afternoon they came back as fine. The nurse on the ward came with my prescriptions from the pharmacy, antibiotics in tablet form, steroids and an injection to thin my blood.
Wait, what? I was going to have to inject myself every night? I had the injection on the ward but the nurse did it for me. She showed me how to do it on a tester pad and I was okay at it, but that wasn’t going in my stomach, I was feeling very panicked about doing that every night for another two weeks.
The discharge procedure was fairly quick and soon Phil was driving me home the Thursday before Christmas. I rested when I got home, warily watching the clock as it speeded towards 8 o’clock, the time of the first injection. I disappeared in the bathroom and got the injection out, the needle wasn’t very long, so I pinched my stomach as I had been shown and injected into it, pushed the liquid inside and held it there for four seconds. It wasn’t as bad as I thought it was going to be and soon got into a routine of going upstairs and doing it.
Two days after being discharged I had to go for a MRI scan. As I was prepped to go into the tunnel, they asked if I wanted to listen to music as the machine was very loud, I chose what they were already listening to which was 70s soul. It seemed to take forever and it felt like being inside a washing machine. The last rumblings sounded like the final spin on a washing machine and I hoped it was the last round of x-rays, which thank goodness it was. It wasn’t until I got out of the scanner that I thought to myself, “Why didn’t I ask to listen to Abba? My favourite group of all time?” Note to self: next scan ask for Abba!
Christmas was a lovely family affair, we had two Christmases, one with Phil’s parents, our daughter, Amy and son-in-law Dave and the two grandchildren, Olivia and Harry and then another one on the 27th December with my son, Jack and his fiancée, Zoe, together with Amy and Dave and the grandchildren.
Our Two Christmases
After Christmas and New Year it was a bump back to reality with two meetings with the oncologist consultant, Professor Iveson and the surgeon, Dr. West.
Professor Iveson explained the chemotherapy treatment to me which was six treatments every two weeks, which would take three months. The chemotherapy used is called FOLOX and he told me the side affects which to expect to experience: throat spasms if I drank anything too cold, neurology affecting my fingers and feet if they got too cold, feeling hot or flushed, feeling dizzy. Luckily with this treatment I wouldn’t be losing my hair, just a general thinning of it. I would need to have a PICC line inserted which is a long thing tube which is inserted into a vein in your arm and passed through to the larger veins near your heart. I didn’t really like the sound of that, but it will negate my having to have cannulas all the time, so that was a big plus for me.
The meeting with Dr. West, the surgeon, was a bit of a shocker if I’m honest. He was very forthright and informed us that according to the CT scan it looked like the cancer had attached itself to my bladder, but on the MRI scan it showed that it might just be pushed up against it, but he wouldn’t find out until he operated what was actually going on. He told us that I would be having a new treatment called HIPEC (Hyperthermic Intraperitoneal Chemotherapy). From what we understood, it is a procedure that floods the area of the tumour with a chemotherapy solution over a 90 minute period. I have linked a video which explains it a lot better than I can!
Dr. West did tell us that we had a choice of whether to go ahead with the treatment or not, but warned us that if I opted for no chemotherapy or the operation then I would have about a year to live. So of course, we opted to have all the treatment! He did say that if the bladder was infected I may lose it and end up with two bags, one for poo and one for wee, but that’s just something I would have to live with, it’s better than the other alternative!
Both consultants stressed the need for exercise for both the chemotherapy and the operation, so I have been going out for walks with a friend, Lisa, about 3.5k twice a week and I walked the local Park Run, 5K, with another friend called Lisa and in between days I have been going out for walks by myself around our village.
As we were leaving the Dr. West appointment, he said to us, “Don’t forget you’re not alone, you’ve got a big team supporting you.” I knew what he meant, at every consultancy meeting there has been a Macmillan nurse there, in the background, but giving reassuring words when needed. Whilst in hospital I was visited by the stoma nurse, a physiotherapist, Macmillan nurses, doctors and nurses, all of which were so understanding and helpful, nothing was too much trouble. As well as the professional teams, I have had wonderful support from family, friends, Facebook groups and work colleagues, old and new. I will do a separate blog about support, as it is such an important part of this journey.
I have to admit that after the meeting with Dr. West, Phil and I went to the M&S cafe in the Southampton General Hospital and I was fighting to hold back the tears and Phil was visibly upset, it felt like we had just been told that I had cancer again. But at least now we are more readily prepared for what is going to happen in the future.
We spent the next couple of weeks visiting family: Amy and Dave and the grandkids, my brother, Frank and sister-in-law, Krys in Buckingham, visiting friends and having friends round, we even hosted a Burn’s Night, just to keep our minds off what was looming in the future.
So the next challenge was having the PICC line inserted and then the day after starting chemotherapy…. wish me luck!