Tag Archives: macmillan

Support: Emotional, Financial and Mental

I wanted to start this blog with a shout out to the person who has been with me through this whole journey, accompanying me on every appointment, taking on the household chores without complaining, cooking meals, giving me a hug and words of encouragement when I’m feeling down and that’s Phil, my husband. I know when we exchanged wedding vows we said, “In sickness and in health,” but when you’re young, you don’t think that will apply until much later in your married life. I know it’s hard for him to take in what’s going on but he’s dealt with it so wonderfully and I don’t think I could ever repay him.

My best friend

Support comes in many different ways, emotional, physical, mental and financial and I have been overwhelmed by the level of support I have received from family, friends, healthcare professionals, neighbours and work colleagues.

Family is an important support system and my family haven’t failed in this respect with lots of messages of support, flower deliveries, visits and even a handwritten letter through the post! It’s lovely to know that they are all thinking of me and sending me get well vibes.

Friends are another important part of this journey, whether it’s having a cup of coffee in their house, going out for a drink, going for a walk with them or just messaging words of support and checking in to make sure that I’m okay. I have one particular friend who battled breast cancer and won, she is an inspiration to me and she kept a blog about her journey…

Click picture for link to Me, You, Us and Breast Cancer blog

Apart from friends and family, there’s also the professional support from the Macmillan nurses, district nurses, consultants and organisations.

At each consultancy appointment there has been a Macmillan nurse in attendance, always there to provide information when we’re not too sure what is being said, nothing is too much trouble for them. When I was in hospital Phil went down to the shops and Hannah, a Macmillan nurse saw that he was looking distressed and immediately went over to him and had a chat with him, even though it was her lunch break.

Phil is a keen runner and has ran numerous 10K races, so he has entered himself for the Bristol 10K on 14th May, 2023 and is running to raise money for Macmillan.

Click to donate to Phil’s 10K run

There is a place called Maggie’s at Southampton General Hospital which provides free cancer support and provides all sorts of information, workshops, therapy and even financial information. We visited there before a consultant appointment and were very impressed by the work they do there. We sat down and had a chat with one of the staff, it was a very relaxed atmosphere and you could have a free cup of tea or coffee.

Whilst at Maggie’s we wanted to speak with the financial person. I am self employed and so as such am not receiving any money whilst I am having treatment, so we wanted to know what we could apply for and how we go about doing it. Unfortunately she was busy with another couple so we left our contact details being assured that she would contact us in a couple of days.

Meanwhile I set about seeing what I could claim myself and after perusing the Bowel Cancer Support Group UK, which is a great group to find help and advice, I discovered I could apply for ESA (Employment and Support Allowance) and PIP (Personal Independence Payment). I am now receiving the ESA payment, but am waiting on the decision regarding the PIP payment.

True to their word, the financial lady from Maggie’s phoned me and she asked what I had applied for, when I told her I had done the ESA and PIP she said that that was the main ones, but had I applied for the Macmillan grant? I replied that I hadn’t known about that and after asking me for my bank details she then informed me that £350 would be in my account next week! She also said that if I get refused the PIP payment then make an appointment to see her and she’ll fill out the appeal form. So I would definitely recommend a visit to Maggie’s.

Mental wellbeing is a tough one. I know that positive thinking goes a long way to help with the process, but sometimes I’m not in that headspace and the slightest thing can turn me into a blubbering wreck. But I have learned that on the good days, you need to take advantage and as I love all things creative I try to do a bit of art work, whether it’s with polymer clay, watercolour paints or just drawing. I watch YouTube videos of people creating art work and that inspires me to try myself, so the other day I made some polymer flowers, which I was quite pleased with. It made me forget about the word, Cancer, and get lost in an artistic bubble.

Polymer flowers

Of course, writing these blog posts does a lot of good for my mental health as it is quite cathartic and it reminds me that I have a lot of love and support and that I’m not alone in this battle with bowel cancer!

Coming Home for Christmas

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.

MRI Scanner

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!

Two Weeks and One Day in Hospital

(Not that I was counting!)

Waking up the next morning after my eventful night with the leaking stoma bag, I felt like I had been punched in the stomach. I wasn’t keen on looking at my stomach and so kept the blanket firmly over my tummy.

A visit from Dr West, the surgeon, during the morning rounds confirmed that the operation had gone well was welcome news and I laid back in bed contemplating what had happened in the last 24 hours.

It was a female ward and the lady opposite quickly made herself known to me and introduced herself as Christine and I thanked her for her help during the night in getting the nurse’s attention.

My course of treatment was basically antibiotics to heal the tumour which were administered through a cannula. Well, so began my love/hate relationship with cannulas, so much so that I ended up with bruises all over my hands and arms in the many attempts to get a needle in.

I was allowed a beef broth and ice cream for lunch and tea, which the beef froth I became a little addicted to, which was just as well as that was all I was allowed to drink for another few days.

There were still Covid regulations being followed so I was only allowed one visitor for an hour a day, which was obviously Phil on most days, but during my stay I did have a couple of visits from my daughter, Amy, and two friends came for a visit which definitely broke up the monotony.

A stay in hospital if you’re not in particular pain can be very boring, but you do get used to the routine of hospital life. You learn what time they wake you up to take your blood pressure: 6:00 AM, breakfast is served at 7:00 AM and the doctors do their rounds at 8:00 AM. Drug run is after that and then not too much goes on unless you have a particular professional coming to speak to you. Lunch is at 12:00 AM and then visitors can come after 2:00 PM. Dinner at 5:00 PM and then the night drug run starts at around 8:00 PM.

I had to have antibiotics three times a day and it was a time I became to dread because it wasn’t given by a drip but by a pump and because the cannula I had used a small valve it blew it out and I would then be in unbelievable pain. I must have had a new cannula every day with the same result until I begged that they give me the antibiotics orally, which I was told was not feasible.

I got myself into a state, crying and saying that I couldn’t do it any longer, when the matron turned up. She gave me a hug and asked if she could try, I shrugged and said, “You can have a go if you want to.” Well, she found a vein straight away and this cannula stayed in until I left hospital, I was a very happy patient!

Halfway through my hospital stay I moved to a lower dependency ward, although at first I wasn’t happy as I liked where I was, it ended up being much nicer.

There is a standing joke between our friends that Phil knows somebody wherever we are. It even happened a year ago, we were walking along a dock in Barbados to board a cruise ship when we hear someone call out his name – it was an ex-police officer who was now working on security on board!

Well, you can guess where this is going – there was a new lady who joined our ward and as soon as Phil walked into the ward, he said hello to her. She works in one of the units which Phil is in charge of! It was nice to have somebody to talk to, we shared our stories and gave words of encouragement when feeling a bit down. It was quite sad for me when she was discharged, but I was very pleased for her!

There were also some characters on the ward, one who decided to discharge herself the day after she had had her operation, got dressed and simply left the ward. Another one who had nightmares and hallucinations during the night and every morning asked me if I had heard the ghosts in the corridor… I didn’t.

Ghostly picture…

All the time I was painfully aware that Christmas was approaching and I definitely didn’t want to be in hospital during that time. So it was a huge relief when I was eventually discharged on 22nd December, 2022, I was going to see my family at Christmas!!