ANOTHER BUM DEAL 2013 ….. MY PERSONAL JOURNEY
The reason for ‘Another bum deal’ is simple. I read a blog from a young lady which she called A Bum Deal, and this amused me along with her sense of humour throughout her Cancer from which I believe she is now ok. ‘Another’ comes from the fact that this is my second bum deal this year as you will understand as you read on.
I retired from work 2 years ago at the age of 64 to care for my husband Kenny who had Vascular Dementia and needed a little more care than I could give him whilst working.
Sadly, he had a major brain haemorrhage on the 1st June 2013 and passed away on the 6th June 2013. I was devastated. I am still grieving for him, as are my children Eating and sleeping were not an option and I was constantly shattered and tearful. We got through the funeral and went on the family holiday which had been planned since last year. It was strange without my Kenny there but we soldiered on.
Now the follow on: The reason for writing in full detail the experiences I have been through is because no matter how much I researched the internet for people’s reactions, emotions, thoughts and feelings when diagnosed with Cancer and during treatment, I felt they were always ‘flowered’ a little and my emotions and reactions seemed to differ somewhat with others. Also, I could not find anyone who mentioned the actual reality of going through Chemo and Radiotherapy and what it was really like and what happened to their body and inner emotions and I was very curious because no matter what the Oncologist says to you they only tell you the bare minimum. Me being me, I pushed him for the full facts which are detailed later on in this blog.
I went to see my GP 29th April with a lump on my anal entrance which was a little different than the usual haemorrhoids and very itchy. I had what my GP had described as a fissure at the anal entrance of my bottom and he referred me to the local hospital. My appointment came through for 12th June which I cancelled because it was too early after the date of Kenny’s death. My appointment was rebooked for 15th July 2013. I saw a Registrar who also said the lump was a fissure. Being non-urgent he suggested I have my summer holiday and then he would put me on his list for surgery. I asked to be put on the cancellation list as it was a day case surgery and would like it over with before my holidays because it was causing me major discomfort. This he did but no appointment came through before my holiday.
So I went on my family holiday, as did he, and upon his return he would get me in as a day-case to sort out the fissure and band the haemorrhoids I had. I was assigned 21st August for my pre-op with the operation scheduled for 4th September 2013. I requested to be put on the ‘cancellation’ list, yet again, because the discomfort and itching from that area was very distracting and making me feel weak and upset.
Upon returning from holiday Sunday 11th August my family and I chilled for the evening and on Monday morning I received a phone call from Blackpool Victoria Hospital to say they had a cancellation and could I go in Wednesday 14th August for the operation. I went for my pre-op assessment on the Tuesday and my daughter Lesley and granddaughter Lucy came over to stay with me and take me in for the operation Wednesday. I was in serious pain around the bottom area by then and was very tearful, the pain was dragging me down and the grieving for Kenny was still very prominent in my mind, also I was a little afraid of having a general anaesthetic. After the nurse had finished with her questions and blood pressure tests etc, she could see what a state I was in and my Consultant Mr Linn came in to see me. He was surprised that I was in so much pain from a fissure and took a look at my bottom area. He immediately said that the lump was not a fissure it was something more sinister. The words did not sink in with me and I got dressed and sat back on my chair. He sat in his chair looking at me without saying a word so I spoke first and asked if I had Cancer. He said yes, he thought it was Cancer of the large bowel. He said that he would do a thorough exploratory and take some biopsies from the areas affected to see if it had spread to my Liver and Lungs. So my operation was not to ‘rubber band’ haemorrhoids and sort out my fissure, but to take biopsies from me instead. I was then asked to go back to the waiting area. I went to where my daughter was sat and nodded for her to come outside this area where I told her what had been said. I was called in a couple of more times and Lesley came along to listen to what they had to say. Lucy, bless her, just sat in the waiting room probably realising that things were not as they should be.
I went down for the operation early afternoon and when the Consultant/Surgeon came to see me in recovery he brought whom I understood to be a Macmillan Nurse with him, Nicky. He talked about an ulcer inside my rectum/bowel which was sized as being 12noon on the clock to 5pm. Most of what he said just went over my head, all I could see was a ‘Macmillan Nurse’ stood at the side of my bed and to me this was a death sentence. Terminal Cancer.
My whole body shook, went cold and my mind went blank. I was horrified. My Consultant said he is arranging for a MRI and CT Scan and briefly explained what the procedures were. I had a chat with the Nicky the Macmillan Nurse who gave me her card and asked me to call her if needed!
I went home, numb, in disbelief. It was like an out of body experience. It was not happening to me, I was looking down at someone else going through it. I was in deep shock (a feeling I have never experienced in my life before) and weak, my legs were very weak and I took to my bed.
Lesley went home and my son David and daughter-in-law Su, came down to stay with me, along with my youngest granddaughter Rebekah. They stayed overnight to look after me.
Friday afternoon 16th August : I had not surfaced from my bed since Wednesday. I felt that my body had given up already! I got myself out of bed and ready for my dear friend Rita to come to take me for my MRI scan. 45 minutes in the Scanner whilst they scanned my Liver and Bowel areas. Not a painful experience but nevertheless not pleasant, especially if you tend to feel claustrophobic in confined spaces. When it was done at 5pm I was absolutely wiped out and could hardly walk down the corridor to the exit. Rita took me home and I went straight to bed. Dave and Su were still at my house and were staying for the weekend. Major yawns, completely lifeless body, eyes shut but could not sleep, mind working overtime. Did sleep on and off during the evening, night and got up Saturday morning 8am feeling slightly better. Did not last out of bed too long before I was back there. Dave or Su kept bobbing up to see if I was okay. If anyone mentioned food, ate in front of me, or attempted to cook something I heaved like there was no tomorrow. I could not stand the smell of anything. I tried to get out of bed one teatime and as I was going down stairs Lesley and Su bounded into the front door and announced that they had been to the chippy for chips to eat with the home made Beef Bourguignon Dave had prepared. I have never moved so fast upstairs heaving so hard I honestly thought that this time I was going to be sick and went into the bathroom until my body had settled down.
My only explanation for this 5 day reaction was that my body closed down for a while to absorb the information I had been given and to help me get it sorted out in my mind.
I stayed in bed until Monday 19th August spending most of that the time sleeping and drinking water and when I woke up on the Monday I was feeling a little more composed and strong enough to attempt getting out of bed. I had not eaten since the Wednesday previous. But, it was an absolutely horrendous time for me and my children. My friend Shirley called on me during the morning, it was very nice to see her. Lots of hugs! I chatted with her about what was happening to me before she went off to a meeting. Lesley had phoned my GP that morning and asked for a home visit because of the state I had got myself in since Wednesday. My GP called late morning and came through to see me. He actually said, I am not too sure why I am here Wendy, so I asked him to sit down beside me and asked if he had received any paperwork from BVH. He knew nothing! So I told him about how his fissure diagnosis was actually Cancer of the anal, rectum and large bowel, and his reason for being here was to prescribe something to help me through the rest of the week whilst I wait for biopsy, MRI and CT results. We chatted for a while, he was very shocked when I talked to him about his misdiagnosis and was very kind and caring toward me and re-assured me that I would be put on red alert at the surgery and should Lesley or anyone phone up regarding me and need to speak to him they would be put through. He gave me a further supply of the pain killers I was issued by my Consultant and 2mg diazepam if I felt the need. Diazapam was to be taken if I was so upset that I could not function. I was reluctant to take this medication but he explained that 2mg was okay when needed and there was not enough of it for me to become addicted to them. Lesley also managed to get hold of Nicky and explained how I had been over the weekend and Nicky and I spoke. Again, she was very reassuring. And promised to phone me each day for a chat.
During the day I seemed to be able to function slightly and managed to eat half a tin of tomato soup at lunchtime, and at 6.20pm that evening I was taken by Lesley for my CT Scan. That was an ok experience. Lesley and I called in on my friend Rita and her hubby Patrick for 30 minutes for chat and cuppa before going back home.
Tuesday 20th August. (Kenny’s birthday) Another good night’s sleep and feeling good when waking up. Diced Melon for breakfast, soup for lunch, what more could a woman ask for. Woop woop. Taste wise it was all I could handle. My sister Lyn was coming up today and stayed until Friday. When she arrived Lesley went home and Lyn took over. I was quiet but feeling not too bad during the day. Soup for lunch and a couple of carefully chosen yoghurts during the day. Lyn sliced a cooked chicken up and I ate some with some other oven roast veg and sliced roasted potatoes that she had cooked for me. Only a small amount, but very tasty. I felt excited that I had managed to eat some food. Was a bit robotic today, did not function too well. Nicky and I chatted again, she was so reassuring I felt good.
Wednesday 21st. Bad night’s sleep. Got up early morning, felt low. Drank some milk and watched news on TV. Nicky phoned early and I broke down on the phone. I talked to her about what I thought my Consultant had said to me in the recovery room and how I gave myself a death sentence when he introduced her to me as a Macmillan Nurse. She seemed a little shocked and told me she was not a Macmillan Nurse but a Stoma/Colorectal Nurse working at BVH. She also re-iterated to me what my Consultant had told me after his exploratory, which was a little different to how I had remembered it. I felt much calmer after that chat and felt there was a little light at the end of the tunnel. Even if I was terminal, some kind of treatment would take place to help prolong my life somewhat, whereas I was convinced that I would be told that I was terminal, nothing could be done, go home and enjoy what life you have left. Nicky said my Consultant could not be too sure where the Cancer started, it was either in the bowel working its way down to the anal canal or at the anal canal working its way up. Friday will be the knowing day. Lyn and I went for a walk around the ‘block’ today which was a good feeling.
Thursday 22nd. Slept ok Wednesday night. Felt good this morning. Watched morning news, ate some melon and Lyn dusted and vacuumed around for me. Got showered and dressed and Lyn and I went out to Lytham St Annes for a walk, the weather was beautiful. We had some lunch in my favourite coffee house ‘Fancy That’ then went into my favourite shop ‘Hidden Jem’ where I bought 2 loose fitting tops in preparation for chemotherapy sessions and radiotherapy sessions and the fact that parts of my body may swell somewhat. Got home for 3pm ish. We both enjoyed our time together today and Lyn also bought a new top.
We sat in the garden for a while doing crosswords then realised we needed milk so walked to the local Booths and got some, also picking up some fresh salmon for tea. Together we prepared tea which comprised of, everything in the oven. Sliced potatoes, wedge red onions, pepper wedges, baton carrots all roasted with salmon. It was very tasty and I was so proud of me for eating most of it. We chilled outside in the garden on the swing bench reading mags and doing crosswords for a while whilst having a small glass of white wine. In bed for 10pm.
Friday 23rd, D-DAY : This is the day I get my diagnosis by phone around 4pm ish. Reasonable night’s sleep. Up by 6.30am. ugh! Glass of milk, morning news on TV and updating my ‘another bum deal’. My brother and sister-in-law coming over to see me today to be here for the results (They live in Kent). Lesley is also coming down this morning and Lyn my sister is going home. All change….. My stomach is already moving up to my throat, legs getting jellified and breathing slightly laboured. It is only 7.45am. I have the rest of the day to get through before the phone call. Stoma Nurse, Nicky, phoned late pm to say I had a Squamous skin Cancer at the anal canal entrance which has moved into the bowel. Also, it has spread into my Lymph Nodes in the groin and there was something in my Liver which they were unsure about. Ok, shock but what can be done to help me.
Another MRI Friday 30th August to re-scan the Liver for a more detailed view as there are some spots in it which they hoped were only cysts.
Got through the week, with family and friends support, few tears, but mainly now accept that I am living with Cancer not dying from it (although I will not know for sure until I see Oncology). Even had a few days out with friends. Great.
Friday 30th August. Went for 2nd MRI only to be told they were scanning from the top of the oesophagus down to the end of the liver. Oh boy! My daughter Lesley was allowed to sit in the room with me for support. Luckily, I took a Diazepam which my GP gave me and this helped tremendously, in fact, after the ‘breathing exercise scans’ I fell asleep and was woken up for the last breathing session and then removed from the machine. I could not believe that 45 minutes had gone so fast. I was on a ‘high’. Diazepam wonderful when used at the appropriate time and for anyone who gets claustrophobic in the MRI machine, highly recommended. Not used it since. No need, decided to allow my emotions come and go as they want. Another week to wait for results of this MRI then off to see the Oncologist.
Friday 6th September. Results revealed no problem with Liver thank God and no Cancer in the actual bowel area. WOW! (After the biopsies were taken I was told by my consultant that I did have bowel Cancer as well as anal Cancer and a squamous skin Cancer on the outside of the anal canal). But, a swelling was found in the Pelvic area which needed further investigation. Consultant has now decided I need yet, another scan, this time a PET Scan, which was booked for the Friday, yet again, another week to wait for scan and a week after that for results, oh boy this is getting tiresome, and the weeks are flying by, whilst the Cancer continues to grow. The PET Scan will reveal all hot spots for the Cancer and also confirm exactly where the Cancer is located in my body. Why could this not have been done at first!!!
Monday 2nd September. Appointment with my GP. Have a nasty, sore rash all over the bum area. Dr said it was ringworm and gave me some cream to use and to call back 1 week later for another bum check.
Monday 9th September. Appointment with my consultant. My two daughters Lesley and Jane came along. We were there 2 hours throwing questions at him. I did persuade him to arrange an earlier appointment for my PET Scan so that results could be given the following Friday rather than yet another week to wait. The Stoma Nurse managed to get me in for the following day which was excellent news and they have arranged my appointment with the Oncologist for Thursday 19th September, rather than wait for results and after that arrange the Oncology appointment which could have run into October. I think they realised they are dragging their heels a little too much with all the delays and waiting. I am so, so grateful that they listened to me and my girls and our concerns.
Bum cream not working at all, still very sore and painful. Difficulties sitting down. Went to see GP. He changed the cream to a steroid one. Obviously need to be very careful with this type of cream when handling it so used surgical gloves to put it on.
Friday 13th September: You will not believe what my Stoma Nurse told me on Friday 13th! – NO CANCER ANYWHERE EXCEPT in the anal canal and the squamous skin Cancer lump on the outside of the anal passage. Fists in the air, hurray, after all the earlier information I was given I felt elated. No benefit in questioning why the earlier stuff was told to me. That was what they thought in the beginning and, so be it! I do feel however, that it would be better if Consultants did not play their ‘guess work’ games with diagnoses. If they had not played guess work games with me at the beginning I am sure my reaction would have been more of acceptance rather than sheer panic.
Monday 16th September. Off the see GP again for a 3rd bum check. I must say the steroid cream has worked wonders on the ringworm and it is healing up nicely and sitting down in no longer painful.
Thursday 19th September. Off to see the Oncologist today to talk about Chemoradiation treatment and any other options open to me.
Option 1:
Week 1 - 5 day stay in Royal Preston Hospital l whilst I have full-on 24 hour radical Chemoradiation and Radiotherapy daily.
Weeks 2, 3 & 4 – Daily visits to RPH for Radiotherapy.
Week 5 – Another 5 day stay in RPH whilst I have full-on 24 hour Chemoradiation and Radiotherapy daily.
Week 6 – Depending upon how I am coping with the treatment 3 more day visits for final Radiotherapy or they may keep me in for those 3 days.
Just imagine, having to travel 30/40 minutes each day for 3 weeks to go for Radiotherapy and then 30/40 minutes travelling back home. The treatment is happening in the most tender part of the body, the anal area. How does one sit? How does one cope when driver goes over a bump in the road, or has to brake suddenly? The first few sessions will probably be okay but once Radiotherapy kicks in, there is no chance – my ‘layman’s’ interpretation of what the Oncologist told me about the burning that will happen is that of putting a warm iron in that area and leaving is there for 15days. 1st degree burns, blisters, peeling skin…….!!!
Option 2:
Go for surgery where they will remove my anal canal, my rectum, part of the large bowel, and vagina and fit a permanent stoma (colostomy bag) for life.
Took 30 minutes with my 2 daughters, Stoma Nurse and a cup of coffee and biscuits to decide it was a ‘no brainer’. My body and state of mind, I didn’t think, were strong at that time and I did wonder whether or not my body would cope with the trauma of Chemoradiation without packing in on me. Chose Option 2.
Thursday 26th September: Appointment with Surgeon at RPH to discuss operation and whether he will do it or not. Jane and Dave came with me. Absolutely great chap, extremely knowledgeable and well experienced working in the anal, pelvic area explained everything very clearly, even drawing a diagram. Said he would do it and it would involve a little more than I was previously told. He would remove Squamous lump from the outside of the anal canal, the anal canal, the rectum, a section of the large bowel and also because the vagina is so close to the area a section of that will also be removed. Then!!! They will remove some muscle and stuff from my stomach area for the plastic surgeon to use to rebuild certain areas. A major, major operation. (10 hours I believe under the knife!!!) My cut will be from the top of the bottom right down and up towards the belly button, plus he will need to cut flaps further down towards to pelvic area. Of course, if a little Cancer is left behind then Chemoradiation comes into it. Oh boy! Pitfalls of this operation, obviously risk with general anaesthetic, possibility of DVT’s and infection from wounds. I was given the option to think about it. So my daughter, son and myself went home for a discussion. After much deliberation of the pro’s and con’s of the 2 options I decided to go down the Chemoradiation route. I know I will be poorly for quite a while opting for this, but although there are consequences and risks I thought they outweighed the risks of the operation. That’s not to say that if the Chemoradiation does not give the desired result an operation involving a stoma will be necessary, but that is another bridge to cross on another day.
Friday 27th September, took a friend to another friend of mine who was holding a Macmillan Coffee Morning at her home. Nice to get out again. Tired after 1 hour or so, I think, at this moment in time, I am unable to cope with too many people in one room chattering away. I seem to need one-to-one with friends and quiet times to clear my head. Time to reflect on the year 2013 and all it has thrown at me. Friends came down later that afternoon and we sat outside in the beautiful sunshine and had coffee and cakes. Lovely. Then off to my GP in inform him of what has been happening, as he still has no info from the hospitals.
Monday 30th September: Off the see the Oncologist at RPH to sign consent form and discuss the treatment.
Thursday 3rd October: Oh Boy! Up almost 3 hours in the night with Thrush down below. Cold compresses which kept getting hot so more needed. Finally, exhaustion kicked in and I slept for a few hours.
Friday 4th October: Off the see GP for Thrush medication. He checked me over as my legs were on a colliwobble [very weak-it was the fear of what I was facing in the near future and how I would cope – I was scared]. All fine, just stress and nerves for what is ahead of me.
Tuesday 8th October: Blood tests this morning and off for Pre-Op CT Scan and tattooing so Radiotherapy is given in the right place. Consultant said I would be starting my treatment 21st October with first week as in patient and I would be having Chemotherapy 24 hours for 5 days.
I was so excited that I finally had a date to start treatment. Up and down days during the wait. Family and friends kept me occupied during the days ahead. My friends arranged a get together at Anne’s house 15th October after they had finished work and I was a guest of honour. Wow! I have been overwhelmed with the support I have had from these lovely people and we had a good time and some laughs whilst there. 2 friends brought me home and came in for an hour and we chatted non stop about everything.
Friday 11th October : My new GPlan chair arrived, it is so comfortable and extends into a day bed for the days I need rest and don’t want to be upstairs in bed.
Dave and Su and the children spent the weekend with me. Lovely. Cooked for me and we laughed and it was a great weekend.
Monday 14th October : What a day! Cried all day long with deep thoughts of Kenny and how much I was missing him, also the Cancer, the constant pain from my anal area was dragging me down. Jane came down and comforted me and Rita also came down and comforted me. It felt good that someone was with me.
Wednesday 16th October: Lesley coming down today, need to sort out the things I am taking into hospital with me.Colliwobbles in legs and stomach continuously, making me feel lethargic, with nausea kicking in as well. Oh Boy, someone give me a break, please….. this feeling continued until Monday 21st October. Could not shake this feeling off at all.
Monday 21st October: Jane took me to RPH for 12.30pm where I was admitted into the Ribblesdale Ward in preparation for my treatment. Bed finally available 8,30pm that evening!! However, they started the Chemo treatment at 5pm whilst I waited for a bed to become available.
During my week’s stay in hospital there were a few ups and downs during the first couple of days whilst I settled in (last time I had a stay in hospital was over 40 years ago when I gave birth) and myself and the nursing staff got the measure of each other. I was having 24 hour Chemotherapy for 5 days and Radiotherapy for the 5 days as well. A little bit of nausea came now and then and the staff gave me anti-sickness tablets which worked a treat. Also got ‘thrush’ on the tongue and vagina which was also dealt with appropriately. Cannot fault the staff, they were very pleasant, patient and cheerful during my stay. They soon got the measure of my cheerfulness and also understood when I broke down crying. Food was not up to much and consequently I did not eat much and my stomach was painful a lot of the time. When I was weighed at the end of the week I had lost 2lbs whilst in there. Did not get out of hospital until Saturday, early afternoon due to the delay the previous Monday starting treatment.
Dave and Su picked me up from hospital and took me home. Ahhhh! Home …. Sweet … Home. They spent the weekend with me and cooked and vacuumed the place for me.
Monday 28th October: Still feeling ok. Sore throat and very dry mouth, thrush still hovering around the vagina area and slight fatigue. Lyn, my sister, coming up today and staying until Thursday am. She will do the hospital daily run whilst here to RPH for my Radiotherapy treatment. 6th Radiotherapy today. 21more to go. Very sore mouth, swollen tongue, thrush on tongue, inside cheeks feeling rough and sore, ulcers on sides of tongue and on my gums. Temperature taken 3 times a day by myself, reading 36.2c. Spoke to Chemo team for advice. Half litre boiled water in a jug with 1 teaspoon salt and when cooled down, gargle to help mouth until I see Doctor at RPH Tuesday after Radiation treatment, when he will check mouth out and give me a prescription for a special gargle. Eating and drinking okay although food put into mouth in small pieces at moment.
Tuesday 29th October: Saw Oncologist after radiation treatment, and he gave me some Nystatin to coat on my tongue and around my mouth, and Difflam as a mouth wash.
Wednesday 30th October: Day 8 of Radiation. Few blisters in vagina area and anal area. Itchy and painful at times. Barrier cream given to me to use. Seems to help a little whilst on the toilet. Mouth still sore, ulcers around the edge of the tongue, but tongue not quite as swollen today. Finally, today, I got my discharge medication after going up to the Ward daily since my release Saturday the week before. Hurray.
Wednesday 6th November: Same old … same old. Radiation every day, During shower a few days ago, I noticed the squamous skin Cancer lump had shrunk considerably and seemed to be the size of an overgrown pimple now. Wow! I trust this is good news and that all is shrinking. Time will tell. Whilst in the house I am not now wearing panties because it is too painful and the air will help with the healing process. District Nurse called today to check me out. Been advised to use sea salt in a bath or a bowl and sit in it several times a day. Will be doing this. Been put on anti-biotics for the infection from the anal area. Using Dry Nights sheets on the bed now and they are great, enabling me to sleep without panties with just a sheet over me, which keeps me cool, which is good. Having tried several types I found Tesco Mums the best.
Thursday 7th November – 17th November: Serious ups and downs during these weeks. Serious 1st degree burns from my front passage through to the anal canal area and upwards, also the inner groin areas. Used Aqueous cream during my time at home before going in on the 18th November and found it good to use and it did the job of keeping everything soft and lubricated which was necessary to avoid tightness of the burnt areas and it helped avoid split skin. Stopped using toilet paper, too harsh in the area. Used Simple baby wipes, after rinsing them under warm water to remove the solution in them. They are great and I put them in baby nappy bags for disposal.
Went into RPH 18th November for final week of Chemotherapy and 5 days of Radiation. Although the staff are all very pleasant, they are all, sadly, overworked and consequently, I felt a little neglected during this week. eg:
a) I needed to sit in a bath early each morning to relieve the pain from down below which built up during the night and was very dry and tight and areas split and bled. I could hardly walk because of the pain I was experiencing and very little help was offered. I was also quite wobbly on my feet. eg: let Nurse know I was going to run a bath because for the very first time I needed help getting in and out of it and could not bend far enough down to dry lower legs. She said she would be 2 minutes. When I went into the bathroom the bath base was full of dried pubic hairs and dried skin … ugh! … I put the plug in and added a little water and waited for the Nurse to come, 1..2..3..4..5 minutes went by so I proceeded to clean the bath out myself as my body had started shaking with pain and I was getting cold (I found cleaning it out a disgusting task). Still waiting for a Nurse, even though red button was pressed earlier, I filled the bath for myself, turned the red button off and pulled the red cord again and waited. Eventually with great trepidation and care I got myself into the bath. When finished, still no Nurse, got out of the bath and pushed the red cord again and dried what I could and waited. This whole procedure took me over 30 minutes and my legs dried themselves. Guess what! a Nurse came in and asked quite curtly what I wanted. She left hurriedly when I told her she was too late and lucky I did not fall whilst struggling in and out of the bath. Now it was 7.45am and I went to my bed.
b) Red button again, and asked for help with treatment down below. Got told that it would be in 5 minutes or so as she was dealing with another patient. Ok, I’ll stand until then, pain too much to sit down. After persistent requests 11.45am I got the help I needed. Morning cup of tea had been taken away whilst I was in the bath, boo hoo, so had some water. What I have described above was a very traumatic ordeal for me and I broke down into floods of tears. No room around my bed for the Nurses who turned up to see what was upsetting me. Is that what it takes to get attention?
c) Whilst in for the week they changed me from Aqueous Cream to Optilube active syringe anaesthetic gel with Intrasite Conformable gel pads as the pain increased, which a Nurse or helper needed to administer because there were underneath areas I could not reach. Again the waiting time for someone to become available was, at times, unbearable. These proved very successful when administered!
d) I remember one evening during visiting time my Chemo tube started to leak down my thumb and wrist. I pressed the red button and proceeded to wipe the liquid from my skin whilst waiting. 7/8 minutes later someone came and ‘checked it out’ saying there was no leakage. Myself and my visitor both confirmed that there was but I was told everything was ok. When I woke up the morning after I had a massive burn running down from my thumb onto my wrist and once again pressed the red button. When someone came I showed them the burn and almost immediately a Nurse arrived, removed my canula and proceeded to fit another one on the back of the other hand. I was given a special cream to treat it but told it would burn, scab and peel just like the rest of my skin.
I could give several other incidents where I needed help and it was not happening. Having said all that, although the leaking Chemo was serious and I should have been taken seriously in the first place, the nurses, as mentioned before are run ragged with patients, consequently, attention was not there and there was always something or someone else on their mind that they knew needed looking after.
I was allowed home for the weekend and went back in for 3 days for the final Radiotherapy treatment. Those three days were manic in the wards. The bedrooms/bays were completely full with some very poorly people needing a lot of attention, consequently the likes of myself had to try to fend for ourselves. Luckily I could get out of bed and potter about a little and maybe I misrepresented how sore and tired I was so they thought I was doing ok. I was always cheerful and smiley except when I was crying through frustration due to lack of care. Even when I was walking around with my back bent because I could not straighten up and waddling like a penguin I kept smiling. On the Wednesday morning when I was due to go home a young doctor asked me to stay in as my blood pressure was too low, I said no and insisted on going home, where I would be cared for as and when needed, so off I went. As happened during my first week’s stay in hospital, no medications were ready for me to take home, although I was told the Friday previously that they would be ordered that day and definitely ready for Wednesday. Ha ha, no such luck. Wednesday 26th November : home for good. Wow, lovely.
The following 5 days my burning got more severe. By Sunday it was at its worst and unbearable.Monday 1st December: Woke up as usual, waited a few seconds then decided to move a leg to assess the pain. Wow – less pain than experienced before. Took my morning medication then went down stairs and waited for my daughter Lesley to arrive to help me bathe and dress. Felt a little better than I have felt for 2 to 3 weeks. Good day, pain a little easier. Stopped using the Optilube Active Syringe because it was extremely painful when being put onto my skin. Decided to use the Intrasite Conformables for the time being, they seemed less painful to use although needed removing after an hour or so as they started to dry up. Back to the Aqueous Cream which was equally as good and far less painful.
The rest of the week, daily, got better and better and by Friday I was almost walking straight, using Aqueous cream only. Still not using toilet paper though. For the first time this week I was able to have a pee without cream on and no burning sensation, what a good feeling. I have turned the corner and on the mend at last.
Saturday 7th December: This morning decided to put Sea Salt in bathroom sink and use baby wipes (pre-washed out) to cleanse the area. Worked wonderfully. Feeling I have taken another step forward today and am going out with family this afternoon for an hour or so before fatigue sets in.Sunday 8th December: Slept through until 10.50am. Felt great. Seem to have taken yet another step forward today. Family round for a few hours. Not up to going out today though.Monday 9th December: Lesley down, Christmas Tree put up, decorations out and placed around the house. House looks lovely. Feeling good today, but I have to say, fatigue is a bit of a nuisance. Limits what you can do.
Friday 14th December: My 1st degree burns have reduced at last and the skin around that area looks almost normal. It feels like new skin except it is still tacky even when I come out of the shower before I cream it up. It must still be maturing.
1st January 2014. At last, 2013 out of my life. Nothing much to report during December. Christmas and New Year went rather well considering the circumstances. My children and grandchildren made it rather special which I very much appreciated. It much have been as hard for them as it was for me. We drank a toast to my Kenny, their dad and granddad and we laughed about the high jinks he got up to and what a wonderful upbringing they all had with him and what a wonderful, loving husband he was to me. December was spent just slowly recovering and trying to cope with the fatigue. Went to see the Oncologist 27th December and he said my Tumour had reduced from 5cm down to 1cm which I hope is good news. Of course, I was hoping he would say it had all gone – no such luck. He doesn’t want to see me now until 3 months after my last Radiotherapy treatment which takes me to March. I will have an MRI scan end February and have an appointment to see him 14th March 2014. My daughter Lesley who with her fiancé Steve are still waiting to set a wedding date but refuse to commit until I am truly fully up and running again. I feel so upset for them because the original wedding date was 29th December and this was postponed last August when I found out I had Cancer. Skin still a little tacky in the lower area but it is doing good. I have been lucky enough to get through this without one infection in that area and put that down to my constant diligence and vigilance in that area with cleansing and creaming regularly. Very restricting and time consuming but staying in my home made it quite easy, I had all I needed by my side. Thank God.
All sorts of minor hiccups since I last wrote such as shrinkage of the bowel, bladder and vagina. This causes some problems at times and I am slowly learning what I can and cannot eat to keep bowel stable. Trial and error all the way. Haha. I have never been short of visitors during December and what a lovely bunch of friends I have. Started to drive a little now so long as the bowel behaves itself and I am not too far from a toilet!!
25th January 2014 :
Just a brief catch up to say all is going well, driving now. Bowel movements causing problems (no warning) so I did some research on line and found that Tena Lady Panties were the solution. When getting caught short they hold it all in whilst I find a loo. I would recommend disabled toilets for this purpose because of the space you need to move about whilst taking care of yourself. I carry the necessary equipment to allow me to cleanse myself and make myself respectable again. I had several ‘accidents’ around the house before Tena.
Not much more to report now until 14th March after seeing my Oncologist. Just making steady progress and trying very hard to put back on the 2 stone lost since Kenny passed away last June and my health issues. Although eating has been a major problem during the past few months because I have no taste buds I am forcing myself to eat a little more eat day. If I can put just 1 stone on during the next few months I would be happy. In the meantime safety pins are very useful when trying to keep skirts around the waistline. Trousers are no use, they just look stupid on me at the moment, I have lost my shapely bottom. I have also had to buy a few smaller sized bras, what a disappointment, haha.
I am having a lot more laughing and positive days now and only a few days during the week when I am too fatigued to do much.
Tuesday 25th February 2014:
After months of treatment, lots of up’s and some down’s, especially during final section of treatment when the serious burns kicked in, mainly good thoughts for my future but occasional scared thoughts and nerves kicking in as today is an important MRI scan date. Having said that, I feel positive regardless of the outcome although I am sure it will be a positive result because of what my check revealed last December when I saw my Oncologist. Went for my MRI Scan with Rita, my very close friend, which will reveal final responses to treatment. I phoned my Stoma/Colerectal Nurse at Blackpool after the scan and she said she would try and fast track it for the Friday meeting that week and, at my request, would phone me with results later that day.
Going out a lot more now since Tena Lady pants being worn and bought some smaller trousers and skirts to wear. Just a few though as with a bit of luck I should soon start putting a little weight on.
Friday 28th February 2014:
Stoma Nurse phoned and told me that they could see a small amount of scarring and a ‘smidgen’ of something within this scarring and my scan now had to go the Royal Preston Hospital meeting Thursday of next week when my Oncologist and Surgeon will be in attendance.
Monday 3rd March 2014:
Phoned my Stoma Nurse at Royal Preston and told her what was happening and requested she phoned me on the Thursday afternoon or Friday morning to discuss with me the outcome of this meeting. She phoned me on the Friday morning and said that they want to take a biopsy of the scarring and the ‘smidgen’ within the scarring to ensure that nothing is lurking within!!
Tuesday 4th March
Meeting with dietician today and had a good chat about my concerns about my weight. Gone from 10st. 12lbs down to 8st. 8lbs since June when Kenny died, most of it disappearing since my Cancer diagnosis. She suggested that I concentrate on maintaining the weight I am and the rest will come with time. Makes sense to me so I will continue with my eating as I am at the moment. She said I was eating the right foods so I went home a happy lady.
Friday 14 March 2014:
Appointment with my Oncologist this morning for final results and decisions. Weigh-in showed that I had gone up from 8.8lbs to 9.3 lbs and I am so excited about that. My Oncologist said I had responded marvellously to the treatment. He told me about the scarring and that an appointment would be made with the Surgeon at Royal Preston Hospital who would examine me and then re-call me as a day-case for biopsies to be taken, as a precautionary measure. This appointment could take up to 6 weeks to come through. Maybe I am being too optimistic but my understanding of my meeting with my Oncologist is that I am possibly Cancer free now. OMG! I feel like the luckiest lady in the world at the moment. I cannot stop grinning to myself, although it has not quite sunk in with me yet and there is, of course, in the back of my mind the little niggle that the Surgeon may find something, and, if he does, it should be so small that there are several options to remove it.
I now continue with my life, just decorated my son’s hall, stairs and landing with him and Su, his wife’s assistance. Good job done. Looks fantastic.
Monday 31st March:
Met with my Surgeon at Royal Preston Hospital. After an examination of my anal canal he seemed happy. Said I will be having biopsies taken every three months for the first year and will be under his care for the next 5 years and if all is well after that time I will be referred back to my Oncologist for the final 5 years. The first scan which will take place at the end of April will be the ‘telling’ one as it will reveal if there is still any Cancer in the scarring I have and if there is a further discussion will take place regarding what to do about it.
In the meantime, started to repaint doors downstairs in my house as they are looking a little to creamy, so brilliant white is called for. That will keep me busy for a several days no doubt. And then, back to doing the ‘ladies that do lunch’ saga which I thoroughly enjoy and the shops are hit at the same time. Whoopie.
Tuesday 29th April:
After spending yesterday taking Moviprep to clear the bowels (wow what an unpleasant experience, but a better way than having an enema on the Tuesday morning). Under general anaesthetic had biopsies taken. Home by mid afternoon feeling ok. My surgeon said he would see me in a month for results. Me being the impatient one, of course, waited a couple of weeks then contacted my colorectal nurse to see if she had access to the results. She advised me that there was a little scarring and the ‘smidgen’ within in that area was in fact an inflammation. No Cancer, remission calls. I have an appointment with my surgeon 19th May and he will advise whether or not anything needs doing in that area, and hopefully confirm that I am in remission.
Monday 19th May:
Saw my surgeon today who confirmed that the Cancer in the anal canal had gone and that he would refer me back to my oncologist. Back now to putting weight on and trying to live a normal life (or as normal as it can be considering what has happened to my body over the past months).
Wednesday 16th July:
Today I went for a full body CT Scan to check whether or not my Cancer had matastified somewhere else in my body, before my appointment with my oncologist.
Wednesday 23rd July:
Being impatient as I am and not wanting to wait until 1st September when I see my oncologist I phoned my colorectal nurse today for results of my CT Scan. She advised that there was no Cancer showing anywhere in my body.
I have now put about 1 stone on in weight and now fit easily into a size 12 so I am pleased with myself.
Each day since treatment finished I have taken one step forward and occasionally 2 steps back. Now almost 9 months since diagnosis and 7 months since treatment started I am 2 stone lighter (a little too skinny)and working hard to increase the weight. I look and feel good now. My face has filled out a little and the dark shadows under the eyes have almost gone.
My taste buds are not completely there yet and some foods have no taste to me. Having said that they improve daily and I have managed to eat a fillet steak and tasted every mouth full. However, chips are tasteless at the moment. I have to be careful what I eat because of the bowel reaction and have learned that fibre is not good so that has been but on the back burner for now. Also certain vegetables and fruit cause me bowel problems.
I still need to wear tena lady pants which are very comfortable and easy to change when I have a mishap.
A strange thing has happened to me and since the middle of May uptodate - I have had 8 swellings around my mouth, lips and tongue, all of them large and needed to call the paramedics twice and had one overnight stay in hospital because the swelling would not go down. Although these swelling looked kinda funny the concern is that if they had hit my throat it could have been very serious. I have an appointment at hospital for tests to see whether or not I have an allergy to (I have never ever had an allergic reaction to anything in my life before). My notion is that as my immune system is not fully there yet there could be reactions, and although I have monitored everything I have eaten, even eaten the same thing twice on the run after a swelling to see it was the food and it wasn’t. I also stayed out of my garden for several days, having spent a lot of time gardening etc; but that was not the reason for the swellings. We will see when I go to my appointment on Monday 28th July.
Monday 28th July 2014:
Consultant said my swellings were Oedemas and not allergic reactions to anything. Gave me antihistamine tablets to take daily and will see him in a month.
March 2015:
Been seeing my oncologist on a monthly basis. All clear each time I go.
Now is the time to get my life back on track. Applied for voluntary work at our local Hospice and enjoying it thoroughly. Also joined the Little Marton Windmill Society as Treasurer and the committee members are a great crowd. We have so many laughs. Still seeing my friends a lot for lunches, teas and retail therapy. Getting to be a very busy lady one way or the other. Great. And, most of all, on reflection, I feel like the luckiest lady in the world having been given my life back to me.
August 2015:
I see my oncologist 2 monthly now and he examines me. My next appointment will also include the surgeon because my bowels will not close properly.
Although my bowel sphincter does not function correctly I am learning to cope and control the bowels a little. Tena ladies panties worn as a precaution.
The last 2 1/2 years I feel I have been dragged through a prickly hedge face first.
14th November 2015: Oh boy, how my life have changed this year. Still cancer free. A few months ago I had a coffee with a gentleman known to Ken and I for 30 years and his wife passed away from cancer 1 month before Ken did. We were alone, members of the same golf club and got together for a coffee. The rest is history. We are very much together, and we both feel that our lives have been turned around. We are so happy together and we laugh at the same things often (laughter is something I forgot how to do). We have both had some real 'belly laughs' together and we both feel that our lives are beginning again.
Having said that, I know I and not 'out of the woods' yet. I have just started to see my Oncologist once very 2 months whereas up to now, I have been seeing him every month. I am high risk I believe for the first 5 years of the cancer coming back, but in the meantime, life is rich in love, joyful and full of adventure.
I truly cannot believe how lucky I have been to have recovered and am now moving forward with my life.
