My journey with Neuroendocrine Cancer started 20 years ago. I wasn’t aware at the very beginning that it was a NET that had made me ill.
I was 29 weeks pregnant at the time and have to admit it hadn’t been the easiest of pregnancies. From the beginning I had suffered with high blood pressure throughout, but I started to get toothache, this caused me to act like I had drunk a couple of bottles of whiskey. I had lost the ability to talk and do motor skills. I was unable to touch my finger to my nose and was showing symptoms of pre-eclampsia hellp syndrome and went into early labour. I was admitted to my local hospital and monitored until the early hours of the morning, when it was decided that I needed to be in a more specialist hospital and one with an intensive care for me, and a neonatal bed for my baby. I was rushed by ambulance to Aberdeen Royal Infirmary and had an emergency caesarean section and my daughter was delivered (who is now 20 and in her 3rd year at university). My Calcium was 5.87mmol/l at the time of admission to ARI, after my daughter was delivered they treated my calcium with Pamidronate. My calcium fell to subnormal levels which then meant I now needed calcium and vitamin D supplements for 4 weeks. We had many meetings with lots of consultants and I remember one Professor saying that “he had never seen anyone alive with calcium that high”, meaning I probably should not have survived, but right place right time and an endocrine specialist looking after me. I spent 3 weeks in hospital and had all my calcium flushed out of my system so went from high to low and my daughter spent three months in intensive care, it took a while to recover and was a tricky time as I was so poorly I didn’t get to spend the first days with her. In fact I didn’t get to see her for the first 5 days so never had that initial bond. It is tricky to be a mum when you are not capable of doing anything for yourself.
We got her home and things started to feel a bit more like we were a family and we started to bond slowly and surely. My calcium quickly rose again and stayed high. I had more treatment with Pamidronate to keep it down, lots of tests, even having calcium to see what my body would do if we added more, it flushed it out, what I quickly was discovering was that my body was not acting how we all expected it to. It took about 18 months of tests to discover what had actually caused it to remain high all this time. I went for a full body scan which showed up a 9cm mass in the tail of my pancreas. I was then sent for a specialist scan that had radioactive dye added to it. The growth took up the die which was called Octreotide proving that the tumour was indeed a NET. The tumour was secreting PTHrP, so effectively knocking my thyroid gland out so not allowing it to control my calcium levels, this being why the levels would not settle back to normal.
The next step was to have surgery to remove the tumour which happened quickly after the confirmation that it was a NET. It was removed and they had to take my spleen out at the same time as the tumour and the tail of my pancreas. Having my spleen removed meant that I had now had my immune system removed and would now be on life long antibiotics. This was not an easy time with an 18 month old and a full time job to hold down. I was in the fortunate position of being in the RAF and they were very understanding and supportive of my situation. The tumour was removed, everything went back to normal and my calcium levels stayed normal. I had very little follow up checks after this treatment and moved from the north of Scotland to Lincolnshire.
When I left Aberdeen the consultant gave me the names of a couple of consultants in my new area in case that I ever needed specialist treatment again. It had now been 5 years since the removal of my tumour and thought that it was probably a good idea to get a 5 year check and be sure that all was clear and no recurrence of cancer was present. I went to my GP and asked if we could run some tests, we started with some blood tests and tested my calcium and thyroid levels. When the results came back it showed that my calcium levels had increased again, so I was referred to Nottingham City Hospital and by chance saw one of the consultants that I had been given. I was sent for a CT scan and the results of this showed that I had multiple tumours in my liver. The multiple tumours were causing my calcium levels to be high again, it was decided that I would start on octreotide injections to suppress the tumours secreting and hold the disease at bay.
This recurrence came as a massive shock and was a huge blow. I thought life would go back to being normal after the first tumour had been removed. By this time I had left the RAF and started a new job and to add to the pressure my marriage had started to break down. This was a very hard time for us all to go through and I suppose the only constant was going to the hospital for the injection every 28 days. I got sicker and my calcium levels would not stay down so I started to spend some time in hospital to have infusions of saline to flush the calcium out of my system.
My friend took me to be admitted for one of these stays and we chatted about what my life expectancy would be now that it was back in my liver. I had never felt the need or want to know my life expectancy with this illness, I suppose believing that I would always get better or if my time was up then that was my hand that had been dealt. I always just took it all in my stride and tried hard to get on with life, but really deep down it was affecting me and making me angry and a bit aggressive unintentionally. I think I had probably just not wanted to know or was not ready to hear it but was something that really did need to be discussed. The consultant came and we discussed this with him and he advised that at this stage I probably had 3-5 years to live. This obviously was not good news and came as a massive shock to both myself and my friend, we hadn’t expected this news. We did ask if there was any other treatment that I could have including a liver transplant but they said that they didn’t do this for cancer patients, and that we would just carry on with the current treatments and maintain my health and keep me pain free.
We carried this on for years and my time in hospital became more frequent so we decided that we could try some chemo-particle-embolization, this is where they pass a tube through a vein in the groin, in my case up to the liver, they then put a shot of chemotherapy directly into a tumour then put a little plug in the vein to stop the blood feeding it so that it dies. We did this on one lobe of my liver. This unfortunately didn’t have as good an effect as we had hoped for and my calcium levels continued to be very high. So I continued to spend time having infusions to flush it out. At this point my marriage broke down and I left with my daughter to go and stay with my friend. Also we decided to see if we could get a second opinion on what alternative treatments were out there that may prolong my life expectancy.
To do this we asked Cancer Research to find a consultant that was a specialist in NETs, the lady we spoke to had never heard of NETs but said she would find out some information on any specialist in this area. They did as they said and rang back with the name of the leading team in the UK at the Royal Free Hospital in London.
Unfortunately the fact that I asked for a second opinion upset my consultant and he didn’t want to refer me to see the other consultant. I had to get my GP to do the referral to see this doctor and went as a private patient for my first consultation. Now this might seem a little crazy to travel from Nottingham to London but when you have a 7 year old daughter and want to see her grow up you have to give anything a go. Now I have to admit that had I still been married I would not be alive today, and without my friend’s grit and determination and belief that a child should not grow up without a mother, I would have not looked for a second opinion, so for this I owe her my life and will always be grateful to her and can never thank her enough for what she did, not only letting me move in but also being at the hospital every step of the way on the next part of my journey.
So we went down and saw the consultant one evening, and he asked lots of questions about what test I had to confirm what the tumours in my liver were, what blood tests and scans I had had. Other than the initial set bloods and CT scan to confirm I had recurrence I had not done any other tests. Now I am not sure at this point what I should have had, but the consultant requested that we had lots of bloods done and several scans to confirm what the tumours were secreting and if they were the same as the previous tumour in my pancreas.
So after the consultation in London I went back to see the consultant in Nottingham to discuss the requests for additional tests, I was anticipating that he would carry out the tests but I didn’t get the response I was expecting, he unfortunately said that he knew what the tumours were and that he didn’t need to complete these to be able to treat me and keep me stable and comfortable. So in essence he refused to confirm my diagnosis. So at the point in my life when you want the very best treatment to give you the longest life expectancy and future the very person I was relying on to give me this was refusing.
Following a long and drawn out discussion with the consultant in Nottingham over many appointments and looking at options for treatment, including a liver transplant, and my practically begging him to carry out the tests to get a proper accurate diagnosis, he still refused. This unfortunately was not the best news and only being 31 and having a 7 year old daughter a decision had to be made as to how we get the tests carried out so that every option of care was looked at.
My friend had heard that in exceptional circumstances you can ask for help and support from your MP to request that the tests are done. We spoke to him and he did get involved and got the tests carried out including the radioactive scan to see if the tumours were taking up octreotide to confirm if it was an exact recurrence.
Unfortunately the tumour wasn’t taking up octreotide which meant that the tumours had mutated and would be reacting slightly differently, although it was proven that they were secreting PTHrP which was still making my calcium high. After all these test had been carried out we went back to the RFH to see the consultant again and show him the results and discuss what the best options were.
Now I know I have spoken about a liver transplant and the request for one but when the consultant said it was my only option to live, I can’t lie, that was a massive realisation and shock that I was actually going to die and didn’t have long to live. This was a very difficult time to come to terms with this and I did struggle with this emotionally and mentally. I found it difficult to talk about with my friends as we had a different of opinion on this matter, I thought this was a really bad thing that the only option was a liver transplant to live, they thought it was a good thing. But to me it just made realise how ill I was and I had not allowed that thought to get in my head until now and it scared me.
Very luckily for me the consultant in London accepted me as an NHS patient and I started to go to see him regularly in clinic and he continued to say the transplant was the best option. This always made me scared all over again and frightened for the outcome and my future. The consultant was having meetings with the Liver Transplant team to see if I could go on the list, this in itself was not an easy decision for them to make as my consultant in Nottingham had said they don’t transplant cancer patients, and the prognosis is not known and doesn’t have good statistics for survival rates. The consultant from RFH believed that they could transplant my liver and would give me a new life, he had to prove that all the tumours were on the inside of my liver so that when they took it out they didn’t disturb cells and they spread into other parts of my body. The only way we could do this was to scan me over and over again to show that there were no tumours on the outside.
By this time my body was exhausted and my calcium was always high. I had to give up work which also didn’t improve my mood as I now had nothing else to be doing but think about it. It made me angry and not the best company to be with, when you go to the RFH there are specialist NET Nurses and they are the most amazing people in the world, they are on the end of the phone to talk through your symptoms, rant shout and cry at whenever you need and that route of release is invaluable.
We carried on scanning every month for nearly a year and having follow-up meetings to discuss the results of the scans, the appointment was on the same day as the MDT meeting to discuss if I could go on the transplant list. Unfortunately the answer was always no and so we repeated the scans and carried on. I was spending more and more time in hospital often for a few days at a time. In the November we had a meeting with the consultant and then the liver transplant nurses, it was a scheduled meeting and I went with lots of questions about waiting time, rejection, life expectancy and recovery time. I had some serious reservations about going on the list and wasn’t sure if that was more scary than having the cancer. At the end of the meeting I was offered to go on the list and after serious consideration and the realisation that if I didn’t I would not be alive for long, and would never see my daughter finish school let alone graduate from university and have a family of her own so accepted gratefully.
By the time I got home I was on the list. Silly as it seemed the only thing that I couldn’t handle was waiting for the call, being nervous that every time my phone rang, would this be the one? So my friend agreed to take the call, she ran a business so had calls all the time from numbers that she didn’t know.
So now the waiting game started and looking to the future could finally begin. The list doesn’t go without some criteria and I had to go into hospital for a weeks work up to ensure I was physically and mentally strong enough for the operation when it came. This I passed and cleared fit to have the surgery when it came, they discussed with you about when the call came what you had to do and about arriving at the hospital, how long you had to get there and where to go.
My friend and I had decided to go to London for New Year as a treat to cheer me up, which we did, it didn’t go quite to plan. I deteriorated rapidly and when we returned to the hotel I was slurring my words and bouncing off the walls, we had had a drink but not enough to mean that I was out of it. When I got up in the morning I was struggling to talk and had jaw ache, reminiscent of the original symptoms, we contacted the RFH and was advised to head over to A&E and get admitted. Wow what a way to spend New Year sat in A&E then being admitted to hospital for 7 days. My calcium had risen to be dangerously high and so we needed to get it down. I had some embolization to kill off some of the tumours whilst I was in hospital for a week, this helped control the level of my calcium, which makes you feel better, having constantly high calcium just makes you feel tired all the time and my body was by now just exhausted, constantly fighting the cancer in it.
I would say this was the lowest point mood wise for me; I was angry all the time and was constantly living in fear of my future. The strangest thing about it was that despite having all my friends and family supporting me the over whelming feeling I had at this time was loneliness. I think this was due to a couple of things, I wanted to be seen as being strong and coping with it all and it not affecting me, so I put a front up. This was to be strong for my daughter, I felt I needed to hide the reality of how serious my illness was so that she could carry on as normal and see that I was ok, but I was far from it. In fact in hindsight I handled this badly and have not helped my daughter deal with this, there was not enough talking about it and still to this day its not really been spoken about at great length. The second reason was because friends and family were almost scared to talk about it in a serious way in case it upset me, but I think that they were scared of the subject and upset themselves. I feel sad looking back at that time because I always thought I was a bit of a talker and quite open and shared how I feel, but when it came to hard difficult and painful subjects it’s not as easy to open up as you think. I think you also notice that it hugely hurts other people around you and so you stop talking about it openly because you hate to see the people you care for and love hurting because of something you have. It was spoken about but in a comical way so we laughed about it and acted like it wasn’t important or serious but this was the way we coped with at the time. It is a horrible thing to have to explain to your parent that unless someone dies and their family donate organs your child will die.
My mum found the whole thing very difficult, it was bad enough the first time I was ill but to have to go through it all again, I cant imagine how I would feel if my daughter was going through this. I haven’t got the closest relationship with my mum so it was difficult to gauge how she actually felt, I suppose this is because she doesn’t really talk about her feelings which explains why although I thought I was open I wasn’t really. But I was fabulously lucky and only had to wait 6 months before that call arrived to say that a donor had been found.
It is a day that you never forget and is a surreal feeling to realise that you are about to get the one thing that will save your life whilst knowing that someone has just lost theirs. It was about 2 am on a Sunday morning, not just any Sunday but Easter Sunday. My friend received the call and came into my room to tell me that the hospital was on the phone, I spoke to the coordinator in a little bit of a daze, although you are on the list you are never fully expecting the call to arrive, she gave us the instructions of what time we had to be at the hospital at 6am. My friend had to collect her daughter to come and stay with my daughter before we could head off. I went into auto pilot and got dressed and packed my bag ready to leave… I was meant to have a shower before we left so I had to go do that and start over with getting ready.
We left and headed down to the hospital, at that time of the night the roads were very quiet and we made good time and arrived at the hospital about 5 am. We went to the ward. You are a bit in limbo because even at this point you are not certain to be getting your transplant; you have to wait until the donor organ has been retrieved to confirm that it is fit to transplant, I had to have blood taken and go and have a chest x-ray prior to surgery. I had all that done and waited for the transplant coordinator to arrive, she arrived about 9am and had been confirmed that the liver was compatible and good to use. I had not let anyone know that I had the phone call until it was confirmed that it was going ahead.
I let my family know now, I rang my mum and sisters and told them what was happening and that I was due to go down to theatre about 11am. They were all very pleased and happy for me and wished me well. I had to let my ex husband know so that he could collect our daughter and look after her whilst I was in hospital, I had left a card and present for my daughter for the day that I got the call so she had something to do and take her mind off the enormity of the day. I spoke to her on the phone and told her what was happening and that I was getting my new liver and I was going to be well soon. Whilst you are sat waiting to go to theatre the nerves really begin to kick in and emotions go from fear to excitement and back again, you are happy to be in the position that you are but very aware that a family are going through the hardest day of their lives having just lost a loved one, this makes you think of what an enormous decision someone has made, and you are about to benefit from their generosity, you are so grateful and looking forward to feeling better.
You are terrified at the same time that it will reject or something will go wrong, it is a massive undertaking to go through and you just want to have it all go well. The transplant nurse came to tell us it was time to go down to theatre and the porters were on the way to collect me.
My friend came down with me but they only allow them to come so far and we got to the corridor of the theatre and she had to leave me, this is the point I fully broke down over the enormity of the operation and what was about to happen. I guess it gets to you as it means everything to you. So I went off into the theatre and got to meet the team of surgeons and anaesthetists who would look after me for the next few hours. They work like a whirlwind and get you hooked up and put to sleep making you feel at ease as they go, so I went to sleep under general anaesthetic.
I woke up in intensive care later on that night ventilated and with tubes and drips in feeling really quite groggy and not with it. They told me that the surgery had gone really well and that they were happy with everything, it had taken about seven and half hours to complete the operation, longer than they had anticipated due to scar tissue from my previous operation. I spent the rest of Sunday and Monday in intensive care gradually having things disconnected, my family had been on the phone to the nurses and one of my sisters had asked how I was, the nurse told her I didn’t like the ventilation tube or the line in my neck. My sister told them it would be a good idea to take them out before I did as if they annoyed me too much I would just try and take them out myself. I wasn’t ventilated for long and when my friend and her partner came to visit on the Monday they were shocked to see I was sat up in bed breathing on my own and talking to the nurses.
I went up to the ward on the Tuesday to start my recovery, when you go back to the ward you are pretty much useless and not able to do anything for yourself, you leave any dignity at the door and have to let the nurses do everything for you, they get you up out of bed wash you and dress you. They make you sit out in the chair which is not very comfortable when you have a massive cut down you stomach. They don’t want you staying in bed but up and trying to move, by the end of the week I was up and a bit more mobile. I still had not had a shower or my hair washed properly, my friend was coming down at the weekend and I was allowed a bath or shower with her help. We got to go and use the shower and discover that I had the biggest bruise in the world it was pretty much all my stomach and down to my knee on both legs. There is something amazing about having a shower and washing your hair to make you feel better but it really does tire you out. I fell asleep pretty much straight after I had done this. My daughter noticed that my eyes had a tinge of green and that my neck looked a bit red and inflamed at the line in my jugular, we had the nurses come and look and took the line out and get the doctors to come and look at me to see how I was, my bile duct had blocked and I was going to need to have a procedure to unblock it, this is called an ERCP they put a tube down your throat under sedation to clear the blockage.
Now you would think this would have been a straight forward procedure to do at the RFH but on the Monday there was a technical issue with the equipment so they had to send me to UCLH for this to happen, they tried to book an ambulance to take me but none was a available so we made the decision that I would go in a taxi (10 days post op) now this was not going to be a good day as my stomach still hurt a lot and had clips in still. I went and had the treatment under lots of sedation and with lots of pain killers this was very painful journey and had not felt pain like it when I got back to my bed.
My friends had arrived to visit me and got to my bed whilst I was away so went into panic that something had happened to me, funny now but at the time they didn’t find it so. My recovery was progressing quickly now and I was starting to feel well and looking forward to getting home and back to normal and start living again. It took me 3 weeks to be well enough to go home, this was a massively big day and a bit scary to think that my safety of being in the hospital knowing if I felt unwell I just had to call someone. I recovered faster than I expected and continued to get stronger at home. I had follow up scans a couple of months later and the results showed that I was now cancer free.
It is really unbelievable how the body recovers and it soon bounces back. I spent a bit of time recovering and got fitter and started running and just getting back to work and some sort of normal. It was still a very emotional time coming to terms with having someone else’s organ in you and accepting that you have to take tablets for the rest of your life and that you now have other conditions such as type 1 diabetes. You have to take anti-rejection medication to prevent your body attacking the new organ and causing it to reject, I have been really lucky and had little or no rejection and brilliantly now it is just like it’s my own liver. I moved on and had got to the point where I believed that I was going to carry on being well and go from strength to strength, I had a new job that had potential to be an excellent opportunity for me with prospects to show my ability and skills and make a difference. After the transplant I did well and was monitored very closely with MRI & CT Scan every 4 months to make sure I stayed disease free, this was the case for several years, 6 ½ in fact.
I had gone for my scans as usual and there was a spot that showed up on the wall of my stomach so I was sent for a gallium scan that confirmed that this was another recurrence of NET. This came as a huge blow and was upsetting to think I had to go through all this again, but this time I kind of just went onto auto pilot and focussed on getting better. The auto pilot was very much a front this time and even though I had a good job and that side of my life was doing well I think I had gone into a bit of depression and was not as in control as I thought I was, life had actually just got harder being ill again new job and home life to juggle, the last time I was off work, so didn’t have that responsibility to think about whilst doing my recovery. The plan of attack was to do a wedge resection of the tumour from my stomach, which we did quickly. Back I went to get my already scarred stomach cut again, I remember that this was happening on a Friday and I was admitted on the Thursday night so that I could get my diabetes under control by going on a sliding scale and an octreotide infusion. Now as luck would happen I was last on the list that day and was waiting a long time for the surgeon to take me down. I waited all day until about 3pm and the nurses came to say that the operation was cancelled, heartbreaking as this was when they told me it was cancelled because of a liver transplant I quickly changed my thoughts on this and just knew that someone like me was getting the opportunity to move on with their life. Having been fasting all day the first thing you do is go and eat something after finding out what the plan for my surgery was. I fully expected to be sent home and the op scheduled for a few weeks later, but as I had travelled so far to have the surgery they said they would do it on the Saturday morning, the relief was unbelievable.
They don’t normally do scheduled surgery at a weekend so I was very privileged to be able to have this treatment that day. The anaesthetist that was looking after me on the Saturday morning was a really nice lady anaesthetist and when I went down to theatre to have the operation we had a bit of a joke how on a weekend they used Gin & Tonic as the relaxant whilst they gave me a spinal epidural, I said I much preferred a champagne cocktail, the NHS don’t stretch to champagne was her response. Certainly made a very tense moment more relaxed I was very nervous for this operation and having a bit of a joke was good for my nerves. The surgery went well and I woke up in intensive care, this was standard procedure due to my transplant and the seriousness of my surgery on the stomach.
I had a gastric tube in my nose and was not allowed to eat. My friends and daughter came to visit me on the Saturday afternoon in intensive care it was a bit of a shock for my daughter to see me so soon after surgery with all the tubes and machines connected to me. They had always planned to come on the Saturday but I would have been 24 hours post surgery and not looking quite as bad. I stayed in intensive care for 24 hours and was moved onto the ward on the Sunday, similar to after my transplant you have little or no ability to do anything for yourself as you have tubes drips and have a bit of a cut that makes it difficult to get up and move about. I can’t lie I absolutely hated having the tube up my nose and not being allowed to eat, anyone who know me knows how much I love to eat! This stayed in for about 4 days until my stomach had had a chance to heal again, the problem you have is that handling your stomach and intestines can cause them to go to sleep which would cause you to vomit if you ate anything. But quickly your body bounces back and you start to recover, because I live in Nottinghamshire and have my treatment in London I didn’t get many visitors, my housemates partner lived in London and came to visit me every day and had done every time I was ever admitted to hospital, I cant say that every visit was a happy event because on occasion I spent most of the time wishing he would just leave, now that sounds very ungrateful as it could take him nearly 2 hours drive to visit me then the same back again, he was massively negative about everything in life moaned constantly about the traffic and everything in general; definitely a cup half empty type of man. That is really hard to be around all the time when you are struggling with ill health, emotions that are all over the place and being told that everything is bad all the time. It wears you down and when you are already feeling pretty low with me it manifested as anger at him, you spend time in hospital and look around at all the people there and soon realise that you are not by far the worst of there. It was more frustrating that he moaned all the time and was making a bad situation harder by being like that, it was at this point I started to realise that being around such negativity was having a bad effect on my mood and attitude to life. I got home after a week but had to have 6 weeks to recover from the surgery before I could return to work. My job had been warehouse based prior to surgery but in my period of absence we had closed the warehouse and I had a new job to start in the office, exciting times going forward.
The results of the surgery showed that the tumour had been removed with good clear margins so again it was said I was clear again, we had done this operation in the February and I went back for routine scans in June and a Gallium 68 DOTA scan and to my absolute horror I had 2 areas that took up the Gallium, 1 in my left breast the lesion had been noted previously but was insignificant, it had grown to 2.3cm.
It also showed up a 14mm lesion in a lymph node near my liver. Talk about really getting a kicking in one day, 3 recurrences in a year wow! I never expected it to come back quite as many times and certainly not in a year. I cried every day to and from work after this bit of news. It was my only alone time and I spent it thinking way too much about what could now actually be the outcome and for a few short weeks my usual strong positive outlook appeared to have upped and left. I had to let my work know that I had to have more surgery and treatments after only just coming back to work and getting the job. I was referred to the breast team to discuss the options for the lump in my left breast, I was given an urgent appointment and had a mammogram to confirm the lump whilst I was there I had a biopsy under ultra sound of the lump.
The results confirmed that this lump was not a NET but was just pure unadulterated breast cancer, it was decided that as it was a small lump the treatment would be a lumpectomy with removal of the lymph node in my armpit to confirm no spread. By now my daughter was just finishing her GCSE’s and I wasn’t sure if she had picked any of this up but my surgery was due to happen on the day she was due to go to Morocco on a school trip so I never told her about it until the last minute so she couldn’t worry about it and wouldn’t consider cancelling her trip. It was an important trip and she had raised the funds to go herself as it was a trip to help a school out there for 1 week then the next week to have a bit of trekking and a look around. The surgery was not a big op and I was home the day after it, and results came back that the lymph node was clear and they took a good margin of clear tissue. Now what we also had to remember was the silly little lump of my pet NET that was in my lymph node next to the liver. We allowed my body a month to get over the anaesthetic from breast surgery before we removed this lump. Again I went into hospital the night before to control my diabetes. The treatment this time was taking a bit of a different turn and the consultant decided that we would do a bit of Chemotherapy and Radio therapy after surgery to give me as little bit of extra protection of recurrence. The surgery as always went smoothly and I recovered quickly after a night in intensive I was back on the ward I got home after a week and had follow up scans scheduled for 4 weeks later, and an appointment to go and meet the oncology team to discuss the chemotherapy schedule.
My friend and I went to get the scan done early in the morning and were due at clinic a bit later on that morning so we went and got some breakfast before heading up to clinic. So when we went to clinic there was the oncologist and another doctor and my specialist NET Nurse in the room with us, we started the conversation about the chemotherapy whilst the consultant pulled up the results of the scan and haematology results from the tumour removed in August, the results of the tumour took us all a little by surprise as it had come back as benign (not a NET or cancer) we took that as a good thing and looked to proceed with the chemo plan. The consultant then said the devastating words that the tumour was still there and had grown slightly. Now that came as a massive shock to all in the room immediately. My NET nurse looked at me and just said we will fix this. The team and I decided that at this point we would hold off on the conversation about the Chemo and decide what the best plan would be. Now I would have quite liked to just have the chemo as the next step of treatment as my body was battered and broken from all the surgery.
I was devastated with this news and really did just want to run away and hide from it all, but the nurse did as she always does and reassured me that I would get through this in the same way I always did with a strong positive outlook on life. I knew that my consultant would want the tumour removed and so we arranged for me to go and see the surgeon to arrange for another operation to remove the little pest that wanted to stay in me. At this point I do need to just let you know that at no point was I angry that the wrong bit had been removed, the surgeon was absolutely devastated that it had happened and couldn’t apologise enough because he knew that I didn’t like the idea of having more surgery.
I was disappointed that I needed more surgery but I always knew that the Multi- discipline team that work out my care plan would do the very best for me to make me better again. I have had the very best care in the entire time I have been in hospital, the nurses, doctors, care teams, ward staff and consultants are just brilliant in every way. They worked really hard and sometimes deal with horrible sad and devastating things on a daily basis but whenever they came to see me or help me the care was first class. I can not praise the NHS enough and the way they look after everyone with such respect and dignity they are just an amazing group of people. Without the NHS I would most certainly not be here to tell my tale and see my daughter graduate from university and for that I will be eternally grateful.
So back to getting rid of this little lump and moving forward to getting better. I went back into hospital in September to have the lump removed, same plan as previously, admitted the night before and an intensive care bed required for the day after surgery. All went according to plan and the surgery happened and the lump removed, my recovery was unremarkable apart from one small area of the wound that got a bit infected and my whole stomach reacted to the dressing and was red and inflamed from the dressings. It had to be packed and redressed until it was completely healed this meant that I was unable to start chemo as you are not able to do that with an open wound.
The weird thing is having chemotherapy and radio therapy made it feel like real cancer, now I know that sounds like a stupid thing to say but it was how it made me feel. I know I had had cancer and it was real but this form of treatment had always been my fear and I suppose as long I didn’t have anything like this, then it was like I was just having a cyst or a wart removed, and looking back now that I think is why I had taken it all in my stride. Don’t think by me making that statement I didn’t care about what I went through because I did and I hated the fact I had had cancer 5 times by the age of 41. You go through every emotion you can imagine whilst you have got cancer, hate, upset, fear, unbelief and depression, life is scary whilst you are going through this. It was a feeling of fear of how the chemo was going to make me feel and what it would do to my body. I hated everything about this part of my treatment. My chemo was a 3 week cycle and consisted of 3 different types of chemo during each session that lasted about 6 hours at time. It was called FCARBOST (Fluorouracil, Streptozocin and Carboplatin) given intravenously, my first session was in November and my friend and I drove down that morning. We had to be there for 8am to have bloods done then go to clinic and have it confirmed you were fit and well to have the chemo, which I was.
We went round to the Chemotherapy unit, you have to wait for them to order your chemo as it is made to order and patient specific, and it only has a certain life span so has to be started before it expires. My friend’s partner came over to sit with us and we did make the best out of a bad situation, we played cards, chatted and had some food and drank tea all day. My friend’s partner was still being negative about everything, he was on occasion aggressive when he felt things were going to slow and didn’t like how my treatment was going. On occasion I felt that I was not in ownership of my own illness and I was being told how I should feel and act and that my feelings weren’t real or correct, this started to make me argue more with him and I was realising that I could not carry on with this negativity in my life. I needed to get this negativity out of my life but unfortunately it was not as simple a thing to solve as it sounded I was still sharing the house I owned with my friend. At the same time I was having my treatment he also required some treatment for a heart condition and was unable to come to my treatment, when I first moved in with my friend her partner was just brilliant and couldn’t do enough to help me during my early treatment, and was good fun to be around.
After the first 2 sessions of chemo and us driving up and down on the same day it wasn’t just exhausting for me but also for my friend who was doing the driving, I at least got to just sit and recover over the next couple of weeks but she had a business to run and still had the job of caring for me at home if I got sick…. And oh I did that in style a couple of times, sugar levels through the roof that needed a day in hospital, and on boxing day fainting after a bout of diarrhoea and then having a temperature, an ambulance was called and I was then taken to hospital and spent a few days in. They suspected the form of sepsis you get from chemo, but luckily I didn’t have it and just had a bit of a bug. From session 3 the hospital put us up in a hotel the night before and night after the treatment so that we didn’t have to travel and my friend could get some rest. The night before we used to go into London and have a little cocktail and some nice food and do a bit of shopping so we made the best of a not very pleasant day ahead a bit more bearable, and to take our mind off what we knew was to come the next day it was a little treat for us to have a bit of normality in our very chaotic life.
On treatment day you are given a lovely cocktail of drugs (not as nice as the cocktail from yesterday) to stop you feeling sick and steroids to help you tolerate the poison that is going to be pumped into you. The chemo is great for killing off the cancer that you have but it also just kills off all the rest of your blood cells and just weakens your body. This was by far my rock bottom and I hated every second of the entire 6 sessions and for all I knew it had to happen, I never want to have to do it again. I never lost my hair and after about a week and a half from chemo day I did start to feel a bit better and could do a bit of work from home, without that I think I would have gone completely mad as I had now been off work since July, having surgery and chemo, it was now February and it was beginning to feel like forever, I was really lucky that the company I work for are very understanding especially as I had only just got that new job exactly a year ago.
I had a scan half way through to check that all was still all clear and again at the end and the good news was that I was showing no disease which was a great relief. My blood tests had improved and I was cleared to go back to work. But as we know I was still not finished my treatment and still had radiotherapy to have for breast cancer.
I went back to work as soon as I was able after my chemo which was about 3 weeks from the last session. I then started my radio therapy that had been planned to take place at my local hospital. I was to have 15 sessions over 3 weeks, each session was only a few minutes a day which meant I could go to work everyday, the hospital was close to work so we scheduled each session at the very end of the day so I just finished early and went home afterwards. It was tiring and it burnt my skin on my breast but this was not as bad as I thought and had been told it could be. The team at Nottingham City Hospital who do the radio therapy and the breast cancer team that looked after me throughout the whole time again were just brilliant. 3 weeks after starting treatment, I had finally finished this monster time of surgery, chemo and radio therapy, this in 16 years of having cancer on and off was by far the longest and hardest period I had ever had to endure. I was at my lowest point physically and emotionally, I was at my heaviest and that made me miserable, but I was unable to do anything about it yet as I had no energy. However my positive outlook on life had come back and I was beginning to get to know my new colleagues and settle into my new role.
It was a great feeling to start to function again and have a purpose in life again, when you have been incapable of doing anything for so long you do start to think that you don’t have any purpose in life, you aren’t contributing anything to the world and you are just sucking all the goodness and kindness from the people you rely on the most. The people who have done the most for you will never know how much it means to you, all the sacrifices that they make both in their personal lives and work lives are just unbelievable.
There is a test that can be done for the BRCA cancer suppressing gene mutation and because I had had cancer six times and I believed that this was a possibility, I wanted to be tested. So I went to see the genetics team to discuss this possibility. In the event of my test being positive I could warn my daughter and other family members of the greater risk of cancer enabling them to have early regular screening.
Initially the result came back as negative but after further research, however, subsequently after another test, it came back positive, another blow, which now meant my daughter, mum, sisters and their children could also have it. I rang my sisters to tell them and get them to tell my mum as I knew she wouldn’t understand what it was and what it meant. My sisters didn’t know about the gene either and they said they would tell my mum and see what had to be done. My eldest sister (50) and mum (79) went to get tested straight away. The results came back showing my mum was negative but my sister was positive. We couldn’t get my dad tested as he had passed away 25 years earlier of a heart attack.
My sister moved quickly to get the treatment and had her ovaries removed and a double mastectomy and reconstruction in September 2017, she is recovering well from this. The bit she is finding hardest is her eldest daughter is positive at the age of 26 and she has decided to have the double mastectomy and reconstruction, as she poignantly says, nobody wants to watch their child go through this and make such difficult and literally life changing and possibly life saving decisions. My eldest niece is planning to go for her surgery early next year for her mastectomy, but won’t have her ovaries removed until later as she is due to get married and wants a family.
My other sister (47) initially didn’t seem to want to have the test and almost ignored the situation, everyone copes differently and that’s how she was dealing with it. After my eldest sister was proven positive she decided that she would have the test – luckily for her she is negative, this sister has 4 children and at least we know that they are all safe now and will not be affected by this. I think my sister feels a bit bad that she doesn’t have the gene and we do. It’s not her fault that we do and she doesn’t, I am the one who feels bad for having to tell my family that they may have this gene, but I tell myself that this is bad to go through but makes them aware and more observant to any changes.
As my dad had passed away and so had all his brothers and sisters by the mid 90s, we couldn’t have any aunties and uncles on his side tested. They all died of various things, heart conditions and some cancer, we do have cousins on his side of the family, and my eldest sister has been in touch with them to let them know so they can decide if they want to be tested or not. As far as I am aware one has been tested and is negative but the others I’m not sure about, their choice and I can’t make them do the test, I have given them the details and what to do it is now their responsibility.
My daughter (20) does want to be tested but has not done it yet, we discussed it but ran out of time here, I would like her tested at home so I can go with her and be there for the results. She knows what the risks are and is now an adult and the decision when she is tested is hers. Her entire life she has had to go through my illness and that’s not how a child should have to grow up, she has watched me go through serious illness and fight back, a lot of the times at critical points in her school life, but amazingly she has come out of it a brilliantly clever woman, grounded and with a goal in life. Her resilience and determination is outstanding and I am very proud of what she is doing with her life.
For me with the positive BRCA gene I am not able to have the treatment my sister has had, I wouldn’t want the mastectomy as I don’t want to have another major operation, this may seem reckless but I have faith in my team that the scans will catch anything else in my breast if it returned. My breast team would recommend I have my ovaries removed, but I am not allowed to have HRT and too young (44) to be pushed straight into full menopause!! So my consultant in London has said he will drop my MRI scan to cover my pelvis and capture my ovaries. There is not a specific and accurate test for ovarian cancer so this is the best option for spotting anything early.
Following my radio and chemotherapy for breast cancer, I began to realise that all of this had had a massive affect on my friend emotionally and with her business and relationship with her partner, she had started to struggle with anxiety and depression that was now beginning to take hold, her business had moved in so many directions and things were really starting to take a downturn. We were struggling to meet all our financial commitments for the house, so we took the really difficult decision to sell, and luckily enough the housing market had just had an up turn and the house had just come out of negative equity. We put the house on the market on the Friday and sold it on the Saturday.
Things had deteriorated badly between myself and my friends partner to the point that I couldn’t stand to be near him or talk to him, he just made me feel angry all the time and that he was trying to control everything about my life and my friends, he was angry that we sold the house. We moved into a new house that was rented. Around this time my friend’s partner had a massive row with her and just turned off his phone for weeks on end and this nearly broke my friend emotionally. I had classed him as a friend, not always a good one but a friend, so I tried to contact him to mediate, he responded after a few weeks and immediately started with anger and aggression and negativity, at this point I decided that I didn’t need this type of person in my life and told him so and just cut him out of my life totally and forever.
I had not noticed how this had been affecting my own mood and I soon found my voice and started to learn who I was again. Home life was now becoming very difficult, I had got rid of negative and aggressive behaviour but was still living with someone who suffered from depression and had grown to really dislike my daughter.
This was having a really bad effect on my mood and was bringing me down, it was like living in a war zone some times, they wouldn’t even speak to each other at times, it was making me really sad and felt torn between the 2 people who had always been there for me throughout my illness. This was all happening at the time when I was given the all clear and I was starting to recover and get strong again. I had put quite a bit of weight on over these years and that also was getting me down I was beginning to hate what I had become physically and emotionally. My work was the one stable and it offered a great sense of therapy as I would discuss these issues with my colleagues and they would assure me that I wasn’t cracking up and that I needed to do something to improve my life and be happy. Enough was enough, I was fat, unfit and unhappy with my situation, so what could I do? To start with I couldn’t move out as an instant fix but I could lose weight and get fit so this is what I did. I joined a slimming club and the gym and started my long haul to get back in shape.
This is not an easy thing to do but I soon started to see results and was getting comments and compliments about how good I was looking not just physically but I was getting my spark back and it was starting to improve my mood. I think my point with this is when you feel at rock bottom and think you are stuck in a rut you can turn your life around, exercise is the thing that by far gave me back my positive outlook.
I have always had a positive attitude about all my cancer treatment and prognosis but it waivers sometimes as to be expected. My daughter had gone off to uni so apart from the summer and Christmas home life was a little more palatable and all was good with my health, follow up scans showed that I had no recurrence of disease.
So I managed to get the final bit of my life in order and moved into my own house just under a year ago and it was the very best thing I have ever done. I have a great job, brilliant friends who support me and just are there whenever I need them, we do silly things together and they are just a great support. So you would think that this long story had now come to a happy end and life was good in every way. But oh no that’s not my luck……
About a year and a half ago the MD team started to watch a little vascular spot on my liver, they had said it was not anything to be concerned about, but in January I had my follow up scan and when I went back to meet with the consultant the little spot had grown, so it was believed the best thing to do was have a Gallium 68 Scan to just check and see what was going on. I had this in May and went to get the results in June, I had not only got all my life in order I also met someone who had the potential to give me that final piece of happiness( this was not to be, the word cancer changes people). I went to clinic for the results and sometimes you just get a bad feeling about things, clinic was running really late this day either that or I was put to the end of the clinic. When I was called in to see the consultant it was specialist NET Nurse who called me in and I joked with her it must be bad news today but she just laughed and said don’t be silly.
We got in to the consultants room and I had been given a consultant rather than one of the registrars that I had been seeing. We all sat down and the nurse stayed and sat close to me (the nurse had looked after me for over 10 years) so it gave a strange feeling to me that it was bad. The consultant started to talk and explained about the spot we had been keeping an eye on, she said “it has taken up the Gallium so we have to now call it a NET and so therefore you have a recurrence of cancer”, those words hung in the room for a few seconds kind of like in a void that no one could get to. The consultant said “she has taken this well, better than I thought” the nurse looked at me and said “no she has gone”. At this point I had broken down in tears and just couldn’t believe that I had got cancer again for the 6th time in 20 years, life is crap at times and why oh why did I deserve to get such a kicking again? It’s not fair, it’s cruel and it hurts, not just mentally but physically. You go tense and numb all at the same time. I hate cancer but I love life and it will not take my life away from me. I was an emotional wreck in shock and just didn’t know what to do with myself, the guy I was seeing had come with me on this day as support , blimey this was not what I wanted to be having to tell him so soon into a relationship. The nurse took me into another room to discuss the treatment plan and talk to me, she told me that the whole team were devastated and would do everything that was needed to take it away again.
We got me cleaned up and so that I didn’t look like something from a horror movie with eye makeup down my face. The plan was to have an injection of Lanreotide 120mg every 28 days and we made a date for the first injection to take place.
The nurse had been asking what I had been doing to look so good and healthy, I told her it was running, she said I was allowed 24 hours to wallow in self pity then I had to get back to running and use it to clear my head and get my anger and frustration out.
I left the room still in a daze and with disbelief that it was happening again and now had to drive home with a guy I hadn’t known all that long, I told him as soon as the nurse left me in the waiting room with him and we drove home with me sort of just crying and talking, well not talking just going round in circles about it happening again. It was nice to have someone there for the drive home, but part of me just wanted to be on my own and not have to face people and real life. I had a couple calls on the way home, my mum who I told everything was fine and I was just on my way home, the other call I ignored was a guy from work he could wait until the morning. One of my friends was texting me, I ignored the texts for several hours but eventually I had to tell her to stop the texts coming. I struggle not to tell the truth and I remember ignoring the first text and the next one asking if I was ok! We got home and had some chips, sleep was never happening that night and we just talked about how it was rubbish and crap that I had to go through this again, I knew it would change his attitude to me and it did, the sympathy came out almost immediately, now I don’t do sympathy from anyone. It makes you feel like you are the victim and I’m not that, I’ve just been dealt the worst hand of cards. I didn’t wallow in self pity for 24 hours I went to the gym the next day and had a really good training session. Anger is great for pushing yourself. I then went to work and told my boss – she thought I was telling her I was leaving, they couldn’t be that lucky.
I had told most of my friends but 2 of my best friends went on holiday the day I found out about the recurrence, but we decided it was best to let them enjoy their holiday before dropping the bombshell.
I had my injection date scheduled and I took the time off to go and have it but when I got there we couldn’t do it because the nurse had forgotten I was diabetic and had to be an inpatient for the first one. My daughter had come with me so she could hear what the plan was and how the cancer would behave and that they believed I would get better. We discussed all of that and put my daughter at ease and gave her a bit more understanding of the treatment plan. A date was arranged for me to go in the week after for the injection and I let work know that I would be off for a couple of days, nothing goes to plan with my health and we did 4 small injections to make sure I tolerated it well, the next day we did the big one and I was monitored as it can affect my diabetes quite badly and it sure did that, it crashed to the floor. I found this time in the hospital quite upsetting and frustrating and I broke down with a new NET nurse that I had not met before, good test for her to cope with me as a blubbering mess, it doesn’t happen often, but it does and I hate that it can make me feel like that.
I was stronger mentally and physically this time than I had ever been to deal with all of it and the fight had just begun. I saw my consultant whist I was in and his ideal plan was that we did surgery to remove the tumour and he had arranged for me to see the surgeons.
It was decided that I would carry on the injections for 6 months after surgery; I would do them at home myself. This is not easy as it is a beast of a needle and takes a bit of an effort to stab yourself with it.
It came as no surprise to me that we should take it out, it was upsetting knowing I was having surgery again, but I know that the best treatment is to take it out. Surgery was planned for two months time. The operation was to be carried out by the same surgeon who had done the previous operations which gave me confidence that he would do the very best and look after me, and ensure that he took away all the cancer. We knew of one bit but suspected another small tumour in another part of the liver. The surgeons were going to have a look at it closely whilst they were in, and carry out an ultra sound to help them confirm what it was and remove it if they felt it was anything suspicious. I had another injection before surgery and the next was due the same day the operation was due.
I had my bed for surgery confirmed for the night before and made my way down to the hospital. I got the train down and had bought my ticket a few weeks earlier and it wasn’t until I arrived in London that I noticed they had issued it for a month later than I asked for! It was a lucky day indeed that I had got down even with my ticket being checked twice and not being charged again. Have to admit my heart sank a bit when I couldn’t leave the station as my ticket wouldn’t let me out; fortunately the staff just opened the gate! It was a bit of a funny moment in hindsight and just made it seem real in a bizarre way. It makes me smile now to think about it and how lucky I was. When I arrived it was early evening and I thought I would have a bite to eat and watch the world go by before I was then held captive for a few days.
After having some dinner I went on up to the ward and got checked in (or as my friend called it booked into the Ritz) and had all my observation and bloods taken. I was then hooked up to an Octreotide infusion and sliding scale for my diabetes. Whilst I was having this done I had a phone call from my friend, sorry I mean a face time call with her dressed like she was going to a wedding – hat on an all, the lovely young nurse was in hysterics at this and had never known anyone do that before. Something like this helps to make a bad situation funny and pass the time away.
The next morning the anaesthetist and a member of the surgeons team came to see me, they told me I was second on the list of 2 and would go down to theatre mid morning, they were just waiting to have my intensive care bed confirmed. I was really calm and laughing and joking with the staff on the ward, I put this calmness down to my new found happiness with my living arrangements and job. My friends and I had a little wager on how long the surgery would take; we ranged from 4 hours to over 5, so now the clock was ticking who was going to win. When they came to take me to theatre I still stayed really calm and had no nerves at all, I was chatting with all the theatre staff and passing the time by talking about the bet we were doing, they all thought this was funny. I did nearly kick the anaesthetists in the head at one point, whilst they were putting some pain relief in my spine my leg jerked and very nearly took her head off, I was shocked at this and was told it is a common effect and it was fine. Whilst this was being done I noticed that I was getting warm on my bum and they told me that the trolley was heated and it was getting warm, this was a fabulous feeling.
Now I know that I am far from normal but this will probably sound weird – I really like the bit when they put that magic white injection in…….(anaesthetic) so when that started I was feeling happy relaxed and ready to get rid of the cancer again. I went to sleep on my nice and warm heated theatre trolley and woke up in intensive care. I had an NG tube in my nose much to my surprise, and this made me feel sick, it was rubbing on the back of my throat and I felt very uncomfortable with it in.
The anaesthetist rang my daughter to tell her I was finished and awake and doing well. I always feel a bit of a fraud being in intensive care because I am talking and alert whilst others around me are unconscious. My main concern during the night was that no one seemed to know about my anti-rejection tablets so I was not given them for 24 hours. I was given them just before I went up to the ward the next lunchtime. We needed to get an extra line in my right arm so that we could take my main line from the jugular vein, they were unable to do this, it was taking too much time and they needed the intensive care bed. To solve this difficulty I decided that they should use my left arm despite having had a lymph node removed previously, this meant I was not to use that arm for lines. I don’t like lines staying in my jugular because I’ve had a clot there before and the line gets infected, so I like them removed as soon as possible to reduce the risk of both happening again. I got a very nice surprise the first day on the ward, my friend came to see my from Norwich, I had no idea she was coming so it made my day to see her, it’s moments like that which make it all bearable as you go through some rubbish stuff and your mates go that extra mile for you.
My recovery was quicker than expected; I had surgery on the Wednesday and was home on Sunday. I was home on the Sunday but the funny part of that was, I was told on the Friday it was likely to be Monday or maybe Sunday, on Saturday morning they came and told it would be Sunday if my bloods were ok, so I arranged for friends to come on Sunday to take me home, but on Saturday afternoon they came and said I could go home now. Anyone else would be over the moon at this option but for me this posed a real problem!! On a Saturday we have grumpy hour at our friends wine bar- so I knew this was not going to be possible. In fact just after this had been said they face timed me having grumpy hour, they really do know how to keep you going at a low point. On Sunday three of my friends came to collect me which was really good of them as it is a 2 ½ hour journey each way, the friend who face timed me arrived in her wedding hat, this just amused my nurse that day and got some strange looks as we left the hospital, but again all it was about cheering me up and making light of the crap that I was having to deal with. For that I love them all to bits and we laugh and joke about it all the time, but I know for certain that if and when I need the serious shoulder they are also there in a shot. We left the hospital and went to get some lunch en route, by the time I got home after a little detour for a sneaky glass of champagne to celebrate my release I was aching from laughing. Physically it seems to have taken longer to get strong again, but this should be expected as I have had surgery on my abdomen 6 times now and the healing process is slower and harder for your body to mend internally. The wound healed really quickly and I had my staples removed after 9 days, so it was the insides that took the longest.
Four weeks after surgery I attended clinic to see the surgeons and find out what had been done and the outcome.
I learned that he had removed the confirmed NET from section two of my liver and checked the suspect in section four, which was confirmed as nothing and was undetectable whilst they had me open, the surgeon confirmed that he had removed a bit of section three that he didn’t like the look of and he was pleased to confirm that it wasn’t anything, but was better to remove it rather than leave it to chance. The best news is that all the disease has been removed and the surgeons have discharged me, he did joke about the bet and asked if I won, but no I hadn’t although I could have rigged it and told them the time was my bet, but I am too honest for that. It is a great feeling to be clear again and as I type this in October 2017 I have not gone back to work from this operation but will be back in about a week and I can’t wait to get back at life.
My friends and daughter have been fantastic, taking me out for lunch, coming to see me and helping out with shopping and just keeping my spirits up. My daughter was home when I got home but had to go back to university a week after I got home, I suspect this was a difficult for her as it was for me – I have always taken her back to university and I was unable to this time so her dad did the honours. This has felt very different from the rest of the my illness, maybe I have finally grown up and am more relaxed and mature or maybe I am just in a better place to cope with whatever life throws at me better now and am more accepting that it is what it is.
My recovery is nearly complete and I should be back to work any day soon and will be back to the gym, going and doing exercise is a great mood lifter and gives you a great boost, I choose to go early in the morning so that I am feeling good and positive for my day ahead. Life goes on and at this time I am clear and will continue to have follow up scans every 4 months to confirm that I have no recurrence of disease again. Unfortunately I believe that the disease is likely to come back and my team have indicated that this may be the case by saying that we will deal with this as and when it happens. This is not the best news to have but as long as I am monitored regularly and having the knowledge that my team have confidence that they will be able to treat any future incidences gives me comfort. It is not an easy thing to accept that you are likely to have cancer again at some point, but knowing this also helps as you can be prepared.
I have to put that bit to the back of my mind and remember how well I am and that we can treat it, or at the worst manage it and keep me well and be able to live a full life.
What can I say about having had NET cancer 5 times and breast cancer once? A positive attitude goes a long way to get you through it, find some humour in it and talk openly about how it makes you feel. It is a very difficult thing to go through cancer once let alone 6 times and you never become complacent about it, in fact it makes you realise that it is everywhere and you never know what is round the corner, but it certainly makes you appreciate life to the full and not put off doing things today as you never know what tomorrow holds. This will not beat me and hold me back, life is great and I can’t wait to watch my daughter graduate in a couple of years that is my first goal to see that happen. BE POSITIVE AND KEEP A SENSE OF HUMOUR!