LIVING WITH CANCER

I hope that by telling you about my time with cancer in this format of a blog, goes some way to help at least one person. It is always a difficult thing to know where to start, so the beginning is probably best.

When I first knew that something was wrong was in the summer of 2020. I made lots of phone calls to my local GP surgery. The worry was compounded by the fact that my surgery was slow to respond and I felt they kept fobbing me off, time and time again, and phone calls that were promised never happened. By the time my rectal tumour was diagnosed, I had been through weeks of trying to get seen and this added unnecessary worry to me and my partner.

SEPTEMBER 2020 – MY TUMOUR NEEDS A NAME

I called my tumour Bob. Why Bob I hear you ask? Well my best friend decided that my tumour needed a name and Bob was what she thought would be best.

Bob was a rectal tumour, who had grown quite large. As my partner and I drove to my appointment at Ipswich Hospital I knew that, as I had been put on a two week list following my colonoscopy, that cancer would be diagnosed, particularly because the operator who had carried out my colonoscopy couldn’t complete it as there was an obstruction. However, until you actually hear it being said, you still have that little flicker of hope that it may not be cancer.

Following that appointment with Mr. Michael Crabtree, who was to become a very large part of my life, we went home and just felt quite sad, but I put my brave face on and decided that a positive mental attitude was the only way that I was going to get through the next few months. Those months turned into two years, but to get the best outcome things sometimes take a little longer.

My partner has been truly amazing throughout. One of the worst times was going to see my elderly parents and tell them about my diagnosis. It was so hard to see the pain in their faces and they had lots of questions that we could not answer at that time. So the treatment plan commenced from here. Mr. Crabtree arranged an appointment the very next day with Dr Liz Sherwin, an oncologist at Ipswich Hospital – that sense of urgency did start to prey on my mind and I slowly realised that this was pretty serious.

Following the appointment with Dr. Sherwin, it was recommended that I have chemotherapy, followed by radiotherapy to try to shrink Bob so I started going to Ipswich hospital to have the chemo administered on an intravenous basis, along with drugs to be taken at home. Good old Capecitabine – I am sure there are some of you out there who know the side effects of this drug!

I have to be honest and say that the chemo did make me very tired on day 2-4. I just had to give in and literally sit around which is not something I am really used to doing, but then the Capecitabine effects started to take hold and they were really brutal. I literally could not keep off the loo and had to stop taking them, as it was having a very detrimental effect on my health.

Then the PICS line was introduced to me – there was me thinking “oh I won’t have to take those tablets now” but the lovely Dr. Sherwin had other ideas so a PICS line was put in which was a very strange experience but the drugs were put through this line on a pump basis every two weeks, which meant lots of hospital visits for chemo, pumps, cleaning of the PICS line, and getting bloods before chemo. Then one of the nurses asked if my partner would be happy to clean the line and take bloods from it too as this would save so much time. It does literally take over your life and I was still working at the time too, so it all got very complicated. Then there’s the basics of how I was to shower with a PICS line, so we purchased a sleeve cuff which almost cut the circulation off in my arm but it had the desired effect and kept the PICS line dry.

My partner came for lessons with the nursing team and it was suggested that he could complete all these duties at home, which is so much easier so if you get the opportunity for this please do ask. Just while I am in this area, the nursing team on the Woolverstone Ward are among the nicest, most positive people you will come across. If you must attend this ward, don’t be afraid – they will sort out any fears you may have and make you feel very comfortable too.

IT APPEARS I’LL BE GETTING A STOMA

Around the same time Mr. Crabtree, my colorectal surgeon, started to speak about a stoma. This would enable my bowel to rest. This came as quite a shock to my system as I had no idea what a stoma was and how it operated, but I could see the logic of what was being explained.

FEBRUARY 2021 – IT SEEMS I’M NOT IMMUNE TO COVID

However, time marched on and then came Covid. This interfered with my treatment plan as I managed to get Covid in February 2021. I am unsure how this happened as I did as I was told – I isolated at home, only visiting my parents fortnightly and completing shopping on a click and collect basis, literally not getting out of the car, just driving there and back to get out of the house!!!

Like the rest of us, lockdown happened and we had to stay at home, although we did go out for walks to help the mind and body. I had to wait 30 days for my next Covid test to be negative and eventually I managed to get my stoma formation completed May 2021. When I woke up and saw I had a stoma bag attached, it felt very odd. I now realise that this has helped to save my life along the way and I have no problem with my stoma. I don’t actively try to hide it and it’s in the clothes that I wear or the activities that I do. I have been away on holiday abroad twice and yes, I do have an active sex life, just in case you were wondering! Body image is something that we all get very hung up on but, trust me, strength of mind and a positive attitude to yourself and what you want to attain are far more important.

Mr. Crabtree did also, at this time, talk very gently about referring me to St Marks Hospital in London and the amazing team headed by Elaine Burns, who is a Consultant Colorectal Surgeon. He explained that my cancer was quite complicated (of course it would be) and felt that a referral to Elaine would be a good course of action. During all of this time, I had many CT and MRI Scans with the teams here asking “have you had one of these before” and then they actually started recognising me- how scary is that?!

DECIDING WHETHER TO HAVE LIFE CHANGING SURGERY

After many thoughts and discussions between myself, my partner and the team looking after me (Mr. Michael Crabtree and Dr. Liz Sherwin included in this), I decided that a visit to Elaine Burns was the way that I needed to go – for my treatment and longevity of life. We travelled to London, to St Marks Hospital in Harrow, and had a very lengthy appointment with Elaine and the team, with many details of an operation to explain pelvic exenteration to us (surgery to treat cancer of reproductive organs). This also included an amazing 3D image of my pelvic region, showing each organ that Bob the tumour had touched – it was a bit of a shock to see how extensive this was to be honest with you. .

OCTOBER 2021

Michael Crabtree (my Ipswich surgeon) wanted to send me for a PET Scan. I am sure there are those amongst you who are aware of this procedure. The reason for this was, as you may be aware, that the scan can show any “hot spots” and because of this scan it showed I had two of these so-called hot spots. Michael decided a biopsy was the best course of action. The first hot spot was a polyp which was removed and the second was the root of the tumour which showed abnormal cells or high-grade dysplasia. It was, at this time, agreed to “kick the can down the road” as there were no cancerous cells present in his biopsy. It was agreed that four more sessions of chemotherapy would take place and these were completed thankfully the week before Christmas 2021.

MARCH 2022 – I’M GOING FOR THE OP!

At this point we went away to Gran Canaria for about five weeks and on our return, I had a second PET scan which Elaine wanted me to have. This showed a hot spot and Elaine wanted to complete her own, larger and deeper biopsy which was completed in London at Central Middlesex hospital in March 2022. This was followed by an appointment with Elaine in April 2022, to get the news that, in her experience, it was high-grade dysplasia cancerous cells that she had found. She highly recommended that I have the pelvic exenteration which was a huge decision to make. As we came away from Central Middlesex Hospital, Elaine said she would start the process of me having the operation, but I was to let the team know when I had made my decision to either go ahead with the operation or not. Elaine and her team also re-assured my partner and I that this was a normal operation for them, but they completely realised that for us it is a daunting prospect.

If I am to be honest, we didn’t discuss my decision that much together as I think we had talked about all the “what ifs” so much before. I had emphasised to Elaine that I wanted her to do all she could to save my vagina and bladder as I still would like to be able to have penetrative sex and not have a bag for my wee, as lets face it one bag is enough to manage!!!!

Elaine had, at our appointment, given us a graph which showed that after diagnosis you are obviously not feeling that great. After chemotherapy and radiotherapy you do start to feel better, mainly because tumours are shrinking so to actually send an email to Elaine to confirm that I wanted this operation, when I was feeling quite well, felt very strange to say the least – lets face it, is life changing surgery. I almost immediately received a reply from Claire (Macmillan Nurse) who had been involved in all our appointments, to say that the whole team felt this was the best decision I could make.

IT’S TIME TO UP MY FITNESS LEVELS

Everything then started to swing into action, and I was advised to get fitter than my current level. I am quite a keen cyclist, completing a couple of rides a week of around eight miles and walking with my best friend, alongside my own walks. However I upped the ante, having spoken to the wonderful physiotherapist Alice from Central Middlesex, who sent me a set of exercises which I completed faithfully every day. I rode my bike at least three times a week, getting my miles up to around fifteen and walked on the other days completing at least three miles. If you do find yourself in this situation with any diagnosis and are recommended to get fitter, then please please do it. I have been told so many times that all my hard work, pre-operation, has really helped with my recovery, and I do feel that this is the case. In fact I would say that this is a crucial part of the whole post op recovery and will speed up your recovery from any major surgery.

We say at home, time and again, how lucky we have been with all our friends around us, keeping in touch and checking in on us. My best friend has been a tower of strength, listening to all my worries and making me feel “normal” (if that is possible) with a strange life in-between scans, hospital visits and then getting on with a normal life too.

THE DAY DAWNS FOR MY OPERATION

Today’s the day. We went to Northwick park hospital by train for my admission for this huge operation, and to be honest everything felt very surreal, as though it was all happening to someone else. But it was not happening to someone else, it was happening to me.

I had packed a huge case of clothes and stoma supplies and loads of other stuff – none of it was needed and G had to take it all home on the train on his first visit to me although he did leave me the stoma stuff and night clothes.

AUGUST 10TH 2022 – A DATE ETCHED IN MY MIND FOREVER

I’ll never forget this date – I didn’t feel very nervous and I had a very strange calmness come over me. I was taken down to the theatre suite very early and had several chats with nurses and the anaesthesia team who told me the operation was likely to be around twelve hours. We were expecting eight so I promptly rang G and told him not to expect a call until very late. The lovely Elaine came to see me, she said “so Elizabeth we are here at last”. I agreed this was the time and she said “see you on the other side”.

I had the epidural and anaesthesia but I can’t remember that part as I was fast asleep, but Elaine rang G at 11.00 pm that night. It wasn’t a long conversation as she had been with me for over twelve hours (I expect she was a bit bored with me by then!) but she told G that everything had gone well and I was in ICU and would not be woken up until the next day as they wanted me to remain calm and not move basically. Oh Elaine you know me too well! I can’t remember very much over the next four days but I know I had 24 hour, one to one care and those two nurses were amazing at all times. I did try to ring G and my parents but I couldn’t make my fingers put the code into my phone – it was a very weird sensation. However, I did manage to get hold of them with the help from the nursing team.

On day five I was moved to Central Middlesex to a private room which all sounds very nice but I got so lonely. I understood the reason for it though – I needed to be kept calm and quiet, but I am a social butterfly so I really hated this and I asked to be moved to another ward. Thankfully I was allowed to be moved and I got to know my fellow inmates – we all struck up really nice relationships as we were all in for the long haul! Most of us were in for three weeks. The food was not brilliant so one of the visitors, who I got friendly with, was getting me food when she shopped for her mum.

This time was really tough as I was only allowed to sit or lay side to side and only out of bed for five minutes a day. I really struggled at this time – and a catheter too – yuk! Concentration was very lacking and reading was out of the question. We all tried to keep each other happy, and I had so many messages from friends and family too, but I got so very tired. Worse than that the chemotherapy wiped me out and I could only manage to reply to two messages a day but I was very lucky as my friends all understood.

MONDAY 29th AUGUST 2022 – I’M OUT!

Finally, I was signed off to come home today. WOW what a journey home. Thankfully there wasn’t much traffic on the road, but being in the back of an E-zec medical ambulance, I was being bounced around and it was hell, although the crew were lovely, Walking into my home made up for it so much though, I just can’t tell you how much. I washed my hair for the first time in three and half weeks, had a shower in my own shower and got into my own bed with my lovely incontinence pads on! These stayed on for about four weeks while I gradually owned my bladder again.

I spent all of September and October inside the house, my amazing man went shopping and almost attended to my every need – I should have got a bell! Then in November I started to get stronger and went for little walks in the garden. I was like a butterfly emerging from a chrysalis – well not quite, but that’s how I like to describe it. I went shopping with G – big mistake as it knocked me out for the rest of the day.

I found my rhythm slowly and worked out that I couldn’t do everything at breakneck speed as I usually do and I needed to rest. My best friends visited me at home, for which I am forever grateful.

DECEMBER 2022

I am so much better although I still can’t sit for long periods, but I have my independence back at last. Being so reliant on others, no matter how much they love you, is very hard. I can go shopping with G, slowly, and go to see my parents in Bury St. Edmunds at last. I couldn’t travel for three and a half months and this took its toll on us all and even more so as my father wasn’t well and unfortunately he would pass away on 1st February 2023.

So my recovery slowed a bit from 25th December when dad was hospitalised as I was travelling to Bury St. Edmunds every other day to see my parents.

During December I had the now obligatory CT and MRI scans. I had quite a giggle with the radiologist when I was having my scans as I said there’s not much to take a photo of down there! She came to see me afterwards and laughed and said “you were right, there wasn’t much left!” My posterior pelvic exenteration had taken away my womb, my ovaries, my anus, my rectum, I had a new end colostomy built (don’t tell Michael Crabtree but I prefer the look of this one!) BUT I have a reconstructed vagina. Work is in progress on this one for its usage so slowly does it! MOST IMPORTANTLY my scans showed no cancer was detected following our appointment with Liz Sherwin.

LOOKING BACK AT THE BIGGEST FIGHT OF MY LIFE

So, in the face of huge adversity, I am here to tell you all that you can do this. You can beat the Big C – I still struggle with driving and journeys in general and I still can’t sit comfortably, but these are small things to have to deal with. I do sometimes sit and think how awesome our bodies are, that we can withstand such a huge operation and get out the other side – I’m back to what is now my new normal.

I am now enjoying life, my G, my mum and time with my inherited grandchildren, along with all of my special friends. If I have helped one of you out there who is worrying, or has symptoms of rectal cancer, please get it checked NOW!!!!!

Much Love

Elizabeth X

(Cancer Campaign in Suffolk would like to thank Elizabeth for her candid and honest account of her cancer journey. She has shown such positivity and resilience and the whole team at CCiS wish her well for the future)