What next?

We returned from holiday, kids went back to school and I finally got an appointment to see Mr S in Leeds, more scans needed as he hadn't received anything from Calderdale after chemo. Had the scans then went back for the results but Mr S wasn't there we were told they would discuss the scans in MDT and get back to me so we had another agonising wait, the pain in my leg came back so started to worry then bad back ache on and off. Tues 26th nov we went back to Leeds. Good news is the cancer has not spread it's just the mass in my pelvis, the consultant is in a position where he wants to operate BUT until he's actually in there he doesn't know if it can be removed also the fact that it's by major blood vessels, he asked what my thoughts are 'is it going to be worth it' was my reply, he shrugged his shoulders, I cried. He wanted us to leave and think about it and return in two weeks with my decision but I know I have to go for it, so I agreed there and then but requested we hold off till after the new year. This could quite possibly my last option so I had to go for it I'm prepared to do anything so I can be here to see my children grow up but the thought of the surgery scares me. Next thing is trying to get on top of the pain I'm not sleeping and nothing I take seems to help much so back to the doctors next week for stronger pain relief. That's all for now I wish you all a merry Christmas and happy new year, cherish every day. Thanks to all my lovely family and friends for all your support over the years, I love you all very much xxxxxx

August 2013

We were finally off on the holiday I so wanted, we had a brilliant time the kids were so excited and happy, they've been through so much in their young lives, I'm so proud of them both I will keep fighting this for them I will never give up I want to see my children grow up into adults I want to be there on their wedding days and want to be grandma to their children, the things i fear may never happen every time I hear bad news. I LOVE YOU both and my husband xxxxxxxxxxx

Round 3

After an appointment with my oncologist i agreed to further chemo in the hope it would shrink the dam thing, she did warn me how utter shit I would feel with chemo (her words) hmmm she wasn't wrong only trouble this time was the big issue with my veins,trying to find a vein had become a nightmare so it was decided I would need a PICC line it would be in my arm and stay there all throughout my chemo. The day came for the PICC line Chris had to work so my mum came with me, after several attempts by the nurse and lots of crying and screaming from me we had to stop, what now? I asked. The following week I went into theatre to have a Groshon line inserted into my chest, I was sedated so the procedure was simple. Next day if was first chemo session FOLFIRI & bevacizumab the plan was every fortnight for 12 weeks so 6 sessions then a Scan . The main problems i had with chemo this time was stomach cramps, sweating, sore mouth, sore eyes and SICKNESS. I had good days, bad days and very bad days, Chris worked while my mum came to help with the kids and do my housework as I didn't have the energy to do anything just as I was starting to feel ok it was time for more chemo! One of my good weekends 26th April me and Chris travelled to Birmingham to see my 2nd love Chris de burgh! Amazing amazing amazing we rocked the arena. We got to chemo number 6 to be told my oncologist wants me to carry on to 12 grrrrrrrr how would I get to 12 each one was getting harder and harder. Great news came in June with the news that chemo was doing its job and the alien was shrinking dr J was do pleased it had shrunk by 25% finally good news to cry about. We changed the plan slightly as I was desperate for us to have a family holiday so the plan was go to 11 get the line out then go on holiday.....

Getting back to normal

While I was in hospital I had a CT scan I never got the results. The weeks that followed I got stronger  we went on out annual trip to light water valley with my brothers, sister in laws and nephews, such a fun day as always. Out of blue came a letter re CT scan it had a shown a lesion, panic mode again. Went to see mr s in Leeds where he basically said its scar tissue or things just haven't settled down after surgery, phew but he was WRONG. Another scan in late November 2012 then another long wait for the results I had to go through Xmas with the not knowing but I started getting pain in my leg real bad pain, I was worried. Results day early jan mr S said I needed a PET scan as he wasn't sure what it was WORRY. The PET was the following week then the results a few week after, confirmed pelvic mass utter devastion again but this time was different he couldn't operate as the mass was growing in my pelvis right next to major blood vessels and sciatic nerve, now we knew why I was in so much pain! Next plan.....

Sepsis

If your all wondering what sepsis is then google it! I had never heard of it either. Saturday nurse A came to do my dressings, I felt ok and we decided to take Jess and Adam out bowling and some lunch , we had a lovely day until we got home when I started to feel unwell, I went to bed but didn't get much sleep in the morning we waited for nurse A she said I needed a doctor so she got on the phone within minutes there was an ambulance outside I was rushed to hospital with flashing blue lights my mum and dad followed behind in the car, I can't really remember much of that day I was so very poorly. That evening I was transferred to Huddersfield royal and put in a critical care bed hooked up to all kind of machines I thought that was it I truly thought my fight was coming to an end but with IV antibiotics I once again perked up over the next few days, that time in hospital I shouldn't of been in hospital, me,Chris,Jess and Adam should of been on our holiday on Crete I was so angry so sad I should of been on a sun lounger not a hospital bed! After a week I was allowed home yipeeeeee

The following weeks!

I remember coming home and going straight to bed I slept about15 hours, the district nurses came in the morning to change my dressings, they took photos of the wound one of the nurses had been a nurse 8 years and she had never seen anything as severe as it was, I didn't look at it I always covered my face up while they cleaned and packed it! Day 2 at home nurse A brought my GP with her I was do weak I had no appetite do I was given them horrible nutrition milkshakes. Every day the nurse came I seemed to be getting stronger then it was a Wednesday and I felt unwell Chris called 999 for an ambulance I was taken to hospital, I seemed to perk up, they said probably picked up a bug so they let me home....

The days after

Waking up after surgery I was in so much pain I had epidural but once again it his no affect luckily I was given morphine, I was away with fairys! It was late when I was taken back to the ward, the next day I got to see Chris,mum and dad. Mr S came to see me to tell me everything went well,always words I like to hear. The next few days I was taken of the morphine that's when I went downhill, my 29cm wound was ousing green smelly puss! Nice, I developed a high temp and constantly sick all the signs of infection, the decided to remove the staples and I was put on IV antibiotics, now my wound was a massive open wound that needed packing and dressing 2/3 times a day. A few days after that I got to see Jess and Adam by this time they were 14 and 9 years old I managed to see them I think half hour but I was in so much pain Chris had to take them home. I was in hospital for 3 weeks then one morning unexpected they allowed me to go home yipeeeeeeee

My stay in st James

Thursday 7th June I had to wait in all day for the phone to ring to say a bed was available for me, that call came around 330pm, we dropped the kids off with family that was hard saying goodbye to them I wouldn't see them for a good few days. On arrival at hospital I was shown to my bed, then given the bowel prep...on no I really struggled with drinking it! It's RANK! Not long after Chris had to go, I was so upset I wanted him to take me home with him. The team came round and explained all what was going to happen then after surgery I would be taken to HDU. I didn't sleep much that night. In the morning I got my theatre gown and stockings on then the sit and wait till they came for me, didn't have long to wait I remember seeing Mr S before they put me to sleep I simply said to him 'please look after me' he promised he would then I went off to sleep!

Bowel cancer signs

Before I continue I would just like to make you aware of the signs that I had although never thought I was dealing with cancer, weight loss. I had severe lower back pain and diarrhea luckily my doctor referred me straight away I was 28 YOU ARE NEVER TOO YOUNG

Round 2!

Results day....May when we went to see Mr S in Leeds results recurrent rectal adenocarcinoma with a pelvic side wall recurrence. No words just utter devastation. The plan further extensive surgery including en bloc resection, hysterectomy, BSO, left ureteric implantation, ultra low hartmanns with a positive resection on the left side. Left ureteric stent. OMG sounds horrific and it bloody well was!. Luckily surgery was planned for 8th June so I still got to be a bridesmaid for my dear friend Clair aka Mavis!....

The bloody thing came back!

2011 while waiting for more surgery to repair yet another fistula, I had the longer wait this time due to NHS cut backs they had to approve the surgery to go ahead the fistula repair kits cost £700 suppose it's like a more expensive version of a puncture repair kit! Luckily I got the oh ahead in the meantime it was scan time again. I went for pre assessment ready for surgery then a few days later it was Chris birthday 31st January when the nurse phoned to say there's a change on the scan from the previous scan, area of concern, mr A wanted me to have a PET scan they only do these at specialist hospitals so off we went to st James in Leeds I was injected with a radioactive tracer this then travels to any disease in the body then you go in the scanner. After a few weeks we had not heard anything I had returned to work then on my birthday 1st march the phone call mr A wants to see me, a few days later we went to HRI we were told yes there's something there were not sure scans are inconclusive we can't do anymore for you so referred me to a professor in Leeds Mr S. My case was discussed in Leeds at their MDT, Mr S called me he wanted me to have a MRI scan then go see him for the results in May.....

2010

June 4th this year our wedding day, perfect day it was, off we went on honeymoon then returned to more surgery another fistula but also this year another Clear scan things were finally looking up. Still had lots of hospital appointments mr A wanted to keep a close eye on me as the cancer was advanced therefore a higher risk of it returning within 5 years...hmmmm he was right

More surgery!

Throughout the year I was back in hospital for more surgery, iliostomy reversal then discoverd a fistula so more surgery this was due to damage from radiotherapy in and out of hospital but it didn't bother me after all I was all clear of cancer and busy planning our wedding. The dreaded scan appointment came through the post, every cancer patients worst nightmare, had the scan didn't hear anything then 2 week later I was alone at home and my nurse phoned the results were back and this time something suspicious had shown up on my liver, can't explain how I felt I was looking forward to a happy cancer free future with my husband to be and my children. She informed me mr A wanted me to have a MRI scan ASAP so off for the scan I went 90 mins in the scanner then another wait for the results. Waiting for results is TORTURE it was 18th December when we went for the results ALL CLEAR the aliens on my liver were not aliens after all but cysts.....phew Happy Christmas 2009

T3 G1 V1 N2

Roughly two week after surgery my colorectal nurse came to see me the pathology results were back and lymph nodes were involved as we thought so the next step was 12 cycles of adjuvant XELOX chemotherapy, once again i was terrified, not about the chemo but the thought of loosing my hair, I could cope with the sickness and all the other crap that goes with it but the thought of loosing my hair  terrified me, luckily I didn't have any hair loss phew! Biggest problem with oxy poxy as it's known is neuropathy and boy did I suffer, I can only describe it as drinking a box of drawing pins that's how painful it was, I couldn't go out not even to pick my kids up from school as the cold weather made it ten times worse. It was decided by cycle number 9 to stop as it became too much for me. Then the dreaded scan....it was new year when I went back to see my lovely oncologist Jo and the scan was ALL CLEAR....time to celebrate xx

Surgery

The day of surgery I was on the afternoon list, just my luck. I remember waking up in recovery it was 6pm that's the first thing I asked when I woke up 'what's the time' i was comfortable, morphine is great plus the epidural that I had before they put me to sleep. I returned back to the ward, Chris was waiting but I couldn't keep my eyes open. The day after mr A came and he said surgery went very well,and the mass had actually shrunk from the treatment but for some reason the scans had not shown this. The next few days were terrible the pain was horrendous I was sick sick and more sick but by day 7 I was starting to feel much better eating and drinking and the day after I was allowed home yipeeeeee

Treatment

It was decided to have 5 weeks of radiotherapy and chemotherapy (tablets) 25 sessions. Started radiotherapy in May a long tiring trek to Leeds everyday for 5 week, must admit it was a lot easier than expected. After the 5 weeks it was scans again we hoped that the radiotherapy would reduce the size of the mass but was devasted to receive a letter to say no change of size of mass after treatment. What a bummer all that for nothing! Next was a break and we so needed it our children then were 10 and 5 so young, we went away for the weekend,looking at photos now I looked so thin! Next step surgery in august I was admitted day before surgery I was given the bowel prep the most disgusting thing ever,I tried to away with not drinking it, I had most of it bug the last bit I had to get rid off I couldn't face it, there was nowhere to pour it so I went for the option of pouring it into my trainer! Sleepless night ahead......

From that day forward!

Beginning of April results day... We arrived at ward 10 to be seated in the day room, mr A was running late he was still in surgery, the 1pm time dragged on and after a while he appeared with a colerectal nurse, he didn't need to speak we new we were about to be given bad news. Mr A asked if we knew what he was about to say, my reply was 'yes bad news' he just nodded, the next part was a blur, didn't really want to hear what he was saying to us. We left the hospital now we had to go back and tell the family. 😂. A few days later we went back to the hospital to discuss treatment at that point I was then told I needed a kidney ultrasound as the scan had showed something suspicious. The following week went for the ultrasound,kidneys were clear phew what a relief......to be continued x

The very beginning!

So where to start,been thinking of writing a blog for such a long time however not got round doing so  and with all that's happened over the last 6 year it would take me forever to write! Let's start from the very beginning the very best place to start (sound of music). December 2007 started feeling unwell, lost weight had concerns so off I toddled to the doctors, routine blood tests showed I was anemic next step colonoscopy and scans, after the colonoscopy a doctor said he was concerned at what he had seen, started to worry by that time it was March had the agonising wait for the results.....