I had posted my last blog and was eagerly ready to start the next stage of the story from 7 years ago in January 2014 but things didn’t work out as planned.
My phone beeped with a direct message… ‘Ive found a lump in my neck…’
Its always shocking news to hear something like that, especially when they’re a friend, even a twitter friend. Understandably, she was shocked and upset, then had to then go through various scans and checks with her Specialists. I automatically checked my neck…
In between Christmas and New Year I again checked thinking of my friend and then found a lump. There was a piece of gristle and then a very small pea sized hard lump. I then found 3 other lumps. I already had an appointment with the ENT specialist on the 13th Jan as in Summer 2013 I had 4 episodes of recurrent chest/sinus infections and 4 lots of antibiotics to help clear this. I’ve had sinus issues since in my 20s. I had my tonsils out age 21 due to recurrent infections. Since then I had 2 sinus washes which relieved the problem for a while then it always came back. It seems to be my weak spot and I pick everything up that goes around and my children had. I also suffered with migraines. I took a steroid spray every night for the sinus issue. It’s got to the point where I take 2 packs of tissue when I run as my nose runs and I’m constantly blowing it.
Rewind to September 2013 and I went to see my breast cancer Specialist as I was worried that there was an underlying problem with this even though I’ve always had these recurrent problems. Cancer makes you paranoid of everything. She sent me for a chest X-ray (I’d had one the year previous due to the same issue) and also ran some bloods with cancer markers. Thankfully she told me everything came back OK, normal, she assured me that the Radiologist was very good at picking up anything and the bloods showed no signs of cancer. She said the problem was an ENT issue. This was why I was referred to the specialist with the appointment on 13th January.
After finding the lumps I rang my breast cancer Consultant’s Secretary as I knew I’d get referred to her from my GP anyway. The Secretary said seeing as I had appointment I should mention this to the ENT consultant as they could well be linked.
Meeting with the ENT Consultant and he didn’t think that they were linked to my previous breast cancer as they were on the left side and my breast cancer was on the right side. He checked all my neck, underarms and said he didn’t think it was something to worry about (phew!) but this needed investigation, I should have an ultrasound and biopsy. If they were unable to get the sample they needed then he may have to call me in again to remove the node. He said it was definitely a lymph node and he’d like to get this done urgently.
I wasn’t unduly worried after what he’d said but due to the urgency, I’d not heard anything the next week so rang the ENT Consultant’s Secretary to check if an appointment had been arranged. The lady I spoke to was unaware of the urgency and even the appointment. She said she would get back as the Secretary wasn’t there. The Secretary returned my call and said she had a word with the ENT consultant and he had said that I would be able to come in the week after. I marked the date and as I’d already been given a follow up appointment for Monday 27th then this was only a few days after the biopsy would be done. It played on my mind and a few days later thought I’d better check with them about the appointment due to the short turn around to get results. I spoke to the Secretary and agreed she didn’t think this would be enough time so again she’d speak to the Consultant. She came back and said they had cancelled my appointment on the 27th and also I would be delayed a week having the biopsy… And put the phone down. I put the phone down and thought ‘why have they done that?’ I had no explanation as to why… I rang back, the Secretary had gone home. I explained the situ to another lady and she said they’d ring me the next day. The explanation the next day was that I was on the wrong list and the consultant was unable to fit me in. I put the phone down and ended up ringing back as I was now getting more and more anxious about this. I asked to get the secretary to ring me the next day as I would like to see if I could pay to go private to get the biopsy done quicker. They advised that it wouldn’t be any quicker but he’d put me back on the list for the previous week and instead I would have a node removal therefore would need to be there for 7.30am.
Two days later I had a letter through the post saying I had an appointment the same day for a ultrasound and fine needle aspiration (biopsy). I rang the Secretary telling her that the consultant had said it was one or the other NOT both procedures. She said I had to attend both.. Well by this time I was sick of going backwards and forwards and just said right fine.
Pre op was done a few days earlier and got to day surgery 7am that Wednesday morning. The Anaesthetist came to see me then the ENT surgeon came. He asked me why I was having a node removal… ? He said as he’d said previously it was nothing to worry about and he thought ‘I’ had confused the Secretary so I’ve ended up with two appointments… No ‘I’ tried to advise them about this but no one would listen to me, I said. He cancelled the surgery and sent me for the ultrasound and needle biopsy which was the original plan. The specialist doing the biopsy was specific for head and neck issues.
No numbing, he said it would be quicker to do this without and I felt like he was using an apple core to take the biopsy. Over with, the results would be available in 7 to 10 days. A week went by and I received a phone call from my breast Consultant’s Secretary to ask me to come into see them 3 days later… I broke down in tears on the phone to her. I just knew what this meant but she was unable to say or discuss anything with me. ‘Are you OK?’ She asked, clearly I wasn’t…
More restless nights and worry. We got to the appointment and didn’t have long to wait long before seeing my Surgeon and I heard the words ‘we’ve found a very small amount of cancer in the lymph nodes’ rang around my head. I went through how I found it and she said that there wasn’t enough from the biopsy to have a definite result but it was ‘most likely’ to have breast cancer cells in it. She thought that this ‘could’ be secondary breast cancer. I quizzed perhaps it could be a local recurrence? I would have to go through the normal procedure of tests. My worst nightmares had emerged. I was devastated. They immediately send me for another mammogram (I had one only 6 months previous) then 5 minutes later I was having an ultrasound on my boobs, underarms and neck area. I broke down in tears. The lymph node which was biopsied was the one that they were concerned about. I had bloods taken. It took 10 attempts as my veins in my left arm are just hard from last time. I was sent to phlebotomy where they eventually found a vein.
I went back into see my Consultant and she discussed the results and then said that it could be in my bones, lungs, liver or brain… Or all. She told me to be positive (!) but in the same breath she said that ‘it will get you in the end’ (WTF!!!!) How do you process that? How can I be positive hearing that? I’ve never felt so scared since being diagnosed with breast cancer but this is different, this changes everything.
Talking to the Consultant she discussed issues with the breast care nurse that was in the office with us for the appointment. Something clicked when her name was mentioned again and I asked her surname.. It turned out that this was the breast care nurse that was horrible with me who visited me at my home nearly 7 years ago. She said ‘oh I was very new and ‘green” – ‘yes I could tell’ I told her, ‘do you remember me? You were horrible to me when deciding on my reconstruction’ I said. I could tell she knew who I was, my Consultant looked a little embarrassed and said ‘if you want we can change to another breast care nurse, don’t worry about it people do that, they don’t get on or something happens’ I said it wasn’t a problem at first and the more I thought I said ‘yes’ I want someone else. The breast care nurse left the room and I locked the door so she couldnt get in and explained what had happened. She said that she would have a word with her about what had happened and I was introduced to a younger and more suited breast care nurse. Did she really think I wouldn’t remember her? I will never forget.
A bone scan and CT scan were ordered and I had to wait for the appointments to come through. The MDT (multi disciplinary team) would discuss my case and if I needed and MRI scan.
How do you continue life when you’ve just been told this? I’ve found that week so very hard, I’ve been to very dark places. I didn’t feel like I’d ever be able to be happy again. It’s felt like a death sentence and I’m a ‘dead man walking’. It’s horrendous to have to even think about your future, what future? My children and my husband are my life and I’m devastated for them. I don’t want to leave them, I don’t want my children or my husband to have to live without me. I have to be here for them and to see my children grow up.
I started having panic attacks – felt like I couldn’t breathe, heart pounding, felt a whooshing of blood around my body, feeling light headed. I was an emotional wreck, feeling sick and angry. I’m angry with everyone and everything. I’m angry with Jeff. I’m angry with life. I’m angry with the whole world and I’m angry with anyone who is happy. How dare people be happy and laugh in front of me? I get to bed late and wake up with that awful sick to your stomach feeling of realisation of what has happened and what I’ve been told.
I was scheduled for a biopsy. On the day the Surgeon came to see me and I was shocked that he asked ME ‘which node are we taking?’ It doesn’t give me great faith in a surgeon when he asks that – you can’t make it up can you. I told him what had happened and his response was ‘oh dear, dear, dear’. I felt he’d given up on me – dead man walking again. I was so scared and frightened and ended up on a cocktail of drugs to knock me out under general anaesthetic as I was so scared, crying and shaking. I went home sore and completely spaced out.
Results back and it is HER2+ in my lymph node. I was advised that no major organs are affected which is a positive… If you can take a positive from a situation. We discussed possible treatment and what was going to happen next and I would need to discuss my treatment with my Oncologist. I was given a Zolodex injection straight away which you have every 4 weeks to give you an early menopause. I was given Letrozole tablets which is for post menopausal women (well I would be in a menopause now) and this would literally suck any oestrogen left out of my body.
Funny thing was when I was on Zolodex last time Letrozole wasn’t prescribed? Why not? And I said I wants my ovaries obliterated to stop the oestrogen production. No I wasn’t able to have this done due to being told i would risk getting heart problems with an early menopause. Makes you wonder if they’d not done this that it may not have returned?
Two weeks later I had a meeting with my Oncologist where we discussed the results of the scans and my treatment. I was to continue with the drugs I was prescribed and would start Herceptin. No chemo? I would have a scan in 2 months to ‘see how it was going’ and if things didnt go to plan then would think about chemo. I couldn’t wait for that! I was quite surprised to hear that this could be controlled with just a few tablets and Herceptin every 3 weeks. She said she would look to see if any trials or recommendations on this so wouldn’t rule out chemo but not just yet & wants to keep it on reserve. I had also been having migraines which was a major worry so it was suggested that I have a head MRI scan to check that everything was ok. The stress and a combination of hormone treatment, pain in the biopsy site & drugs could be causing the migraines but obviously it needed checking.
I had asked some questions to my Oncologist via the breast care nurse and she hadn’t answered the questions specifically. To me it seemed she didn’t want to answer the questions. I had lost all confidence in what she had told me and there were things that just didnt ring true and were pointed out to me from what her course of action was. So I had to get a second opinion. I had already thought about seeing another Oncologist and my friend who had been treated by the same professional mentioned about going to see him. I discussed my diagnosis and planned treatment with him and I set the ball into motion. Before I had this meeting I had discussed treatment with my sister in law who on her last diagnosis of a local recurrence, wasn’t given the opportunity of chemo but after asking for it she did. I had the second opinion with another Oncologist who again believed the best way to deal with the recurrence would be chemo. He didn’t need to convince me it was the best way to deal with this. I guess it’s like going to the doctors and they give you some tablets and they don’t work, then you end up going back and they give you something better. I couldn’t afford to wait. It made me think about what I possibly needed to do as I felt like the way to give me the best chance for a remission was a course of chemo. It was still a hard decision to make the change from one Oncologist to another – this is your life they are dealing with, there’s no rehearsal – there’s one chance, is it the right decision? I was worried sick.
A few days later a major tipping point came when I went to have my Zolodex injection with my GP. I have a very good relationship with him, completely trust him and wanted his view on what I had been told. He was the ONE person I knew I’d get a straight answer from – So after a hug from him, a few tears and ‘how have you been’, his answer was.. ‘Look, as a friend and if you were my wife then I’d throw everything at it. The chance of dying through chemo is minuscule (thanks) but you gotta hit it with everything Jo, if you don’t and 2 months down the line just Herceptin and Letrozole isn’t successful then you will kick yourself. You got one chance to go for it.’ There’s the confirmation I guess. It was what I needed to hear. Chemo here I come…
The plan was to have 8 cycles of chemo with an antibody which works with Herceptin. My Oncologist suggested a chemo I had first time around and I had an allergic reaction to this so suggested another which was specifically for patients who had an allergy. I was told that this was an opportunity to get into long term remission. I had to think about my life and what was best for me and my family. I didnt like change, I had been with my oncologist for 7 years and I was loyal but I couldn’t take a chance which is why I needed the confirmation from my GP. After chemo we would discuss whether radiotherapy was also an option. My Oncologist advised he had other patients who were in long term remission and this was again just what I wanted to hear. I needed confidence and I needed to hear positive things. That’s what he gave me. He gave me hope.
I was going to be awful telling my children as now I would loose my hair and there’d be no hiding from the fact that I had breast cancer again but I had to do it. No wonder I ended up with a migraine. I had all this going round in my head.
Thankfully the results of the brain scan confirmed I have a brain (some friends dispute this) and thankfully the brain scan was normal. Thank god that’s one less thing to worry about.
The next step was to see my Oncologist’s Registrar for bloods, history etc and I would start my treatment Monday 24th March. So 8 cycles every 3 weeks. I wanted to continue exercising and my Oncologist gave me the go ahead to do this. He totally agrees with me about keeping my fitness level up and just what I tweet about and try to promote to other patients. We talked about ‘peripheral neuropathy’ in hands and feet so I have to wear socks & gloves like the cold cap to stop damage to the nerves. It’s scary stuff when you start thinking about it and reading about it.
Aside all this of course were friends who knew about my diagnosis and then friends who didn’t know who I needed to tell. We live in a lovely friendly village community with the school and know lots of people. I found it hard to tell people face to face and couldn’t tell them individually as there were many so I ended up sending a text message explaining the situation to them. I hoped that it wasn’t rude and hoped they understood why I had to do this. It ended up like a press release on a Friday night after school had finished. I had been into see the head teacher and the children’s teachers that day to explain what had happened and that we were going to tell the children that night about my diagnosis as chemo was planned for Monday so we couldn’t keep it quiet in case something happened and I was ill. It again makes it all the more real the more people you tell.
That night we had to tell the children. We sat them down. It was the hardest thing that I’ve ever had to do. I explained about my neck and that the doctor had found some cancer there. The children were so upset. Faron sobbed for about 20 minutes as we consoled them but she was so upset and when I asked her was it about my hair, she said yes. I had mentioned that I would have to have it cut and I would have medicine that would make my hair fall out. Heartbreaking to even have to discuss this with them but again there was no denying this would happen now so we had to tell them. Of course it was a basic explanation and just so that they could come to terms with what was happening and ask us anything that they need to. They were very clingy that night and lay with me on the sofa whilst I stroked their hair and they intermittently asked questions. We somehow got through the weekend.
Monday came around quick and it was a long day. I was in at 8.30 am and got home 4.45pm as I had to stay in 6 hours to make sure there were no reactions to Herceptin. Here’s me hooked up with my VERY freezing cold socks & gloves on to stop neuropathy whilst having chemo..
All was going well and I cycled 18km on the Thursday after chemo and then ran 8km on the Friday. Unfortunately, I started with some skin reaction on the Friday night which went worse over the weekend, in my hair, on my face and chest. I finished the steriods on Saturday and Sunday was Mother’s Day. We went for a meal with family and then as I got home I ended up ill with an upset stomach, sickness, killer headache, sore throat and the shivers. My temp had gone down to under 36 deg. I checked a few times before we had to ring the chemo hot line. I ended up in Christies Monday morning at 1am. My sister, Lisa, took me in whilst Jeff stayed at home with the children so he could take them to school in the morning.
They kept me in just in case but bloods etc were all ok. Lisa went home at 3am and I tried to sleep. The nurse gave me some ibuprofen and said I had to have this with milk.. I knew what would happen. I was sick again around 5 am and woke around 8 am. After breakfast and tablets I felt much better. The nurses on the ward & Doctor on call were absolutely lovely – so caring.
I was moved to another ward and the Doctor said I could go home. Before I left a lady came into the room who’s job was to clean the room and wipe areas. She was literally on the floor and under the bed. The Christie is very obsessed with cleanliness and it shows. Everywhere is spotless. Anyway I chatted to this lady and she thought I was waiting for a patient! No I was the patient! She thought I looked too well to be in there, it caught people out as I still had my hair so didn’t have the look of a cancer patient. I chatted openly about my diagnosis as per usual and she told me that she had had a skin cancer under her eye and recently had to have treatment for. Thankfully she was all ok. She was such a lovely warm lady and when we finished chatting she walked over to me and give me a great big hug. No matter who you talk to at The Christie, that is exactly what it gives you, a great big hug – professional or not, my experience is that everyone is very very caring and considerate. I wouldn’t want to be treated anywhere else. No wonder they are recognised as a centre of excellence – the people make the hospital what it is. Anyway, I felt much better and my headache had virtually gone so home I went.
Back home that night my headache went worse. Through the next day I was sick, couldn’t keep meds down even codine wasn’t working, no food and little water, its a vicious circle so I ended up having to ring the chemo line again as my temperature had dropped again. Lisa had to come and sort the children out and Jeff came down to the hospital with me at 4pm. Anti sickness was given by IV & ended up with an allergic reaction and it tracking up arm. They put an IV up with saline and paracetamol which eased the head a little. I had to stay in overnight and the team would see me the next day. I had a terrible night with no sleep, I was tossing and turning and the lady across snored very loudly and the ward lights made me feel more sick. It’s funny as you notice things on wards and every time the nurse came to see me I would smell her perfume. It wasn’t cheap it was probably very nice but when I have a migraine smells really really affect me and can trigger them as well as light. The night seemed to drag on forever and I had 3 lots of morphine with increased dosage which didnt shift my headache whatsoever which I found really worrying. I then found out that the anti sickness had caused a double whammy migraine effect and which was why the morphine didn’t work? Finally I got some relief after a different antisickness was administered the codeine started to work.
I slept and woke with a start at 10am. The staff had left me to sleep as they felt so sorry for me after having 2 nights of no sleep. First thing I thought was had the Doctor been round and not seen me with the curtain drawn round! Thankfully they had not been yet so I hadn’t missed them, phew! I saw the team just after lunch and I was told I could be discharged.
I had a message from a friend saying that another friend was at Christies so I messaged him. Chris had been seeing his Oncologist for results after scans. He originally had bowel cancer then ended up with it in his liver. He had two liver resections last year in a short space of time. It was lovely to see him when he came into the ward but it was obvious that he’d not had a good meeting. It emerged that he been told that he had it in his lung and back in his liver. I remember talking to him on a tweet up I had arranged ‘Octoberfest’ (yes i wont forget buying that awful Jaegermeister!) and him saying he wouldn’t have chemo again. I asked him what his consultant said and it was possible that he may have to have chemo again. It’s hard to know what to do but when there’s a opportunity to get into remission then you take it with both hands. Were both back on the chemo train and I hope he gets to his beloved Glastonbury like he did last year. It’s on my list of ‘things to do’ aswell! I hope we can take our children for a once in a lifetime experience. Music is a big part of our life aswell.
I was told I could go home after 6pm as they needed to change my prescription for a different antibiotic so had to wait for that. Unfortunately my prescription got lost and I waited until 8pm to get the drugs again! I was so relived when I got home to bed.
I picked up really quickly as my white blood cells must have been on the up so I had a good week. I was back to see my oncologist on the Thursday. Bloods were taken and everything went OK. It was just a case of tweaking the meds to stop me feeling ill so next time I would be on GCSF injections, a migraine tablet, an antihistamine and an antisickness. My Oncologist went through everything with me and he was very through explaining everything and showing me my scans etc. We had a good talk about everything. I still had two lots of antibiotics in case I had another water infection or throat infection. I also had a pre op for my portacath which was to be done the next day.
Friday I got there early at 8am. The nurses on the department were absolutely lovely and caring. I was prepped and a mark put on my neck and assessed. The portacath would be put on the right side and an ultrasound had been done the day before to check that the vein was good. I was led to the Radiography room and lay on a bed. The nurse scrubbed up and prepped the instruments ready for the minor op. I had to lie still and look to the left side whilst she numbed the area with approximately 6 injections on my chest and my neck. She then made and incision and a pocket in my skin to put the portacath. She then made and incision up my neck where the tube would go. Then the tube was fed down towards my heart. To make sure that it was in the right place she took an image of where it was. Cut to the right length and inserted it was sewn up and butterfly stitches placed over the device. It was a bit of a weird feeling pushing and pressing and pulling thinking that this device would be accessing your internal jugular vein. When they finished a pad was put over it to protect it. It felt weird and I could feel a metal type lump under the skin. I didn’t want to move my neck and felt frightened in moving my head but was told to carry on as normal. I had talked to friends who had this done and they said after a while they didn’t feel it was there. Somehow I couldn’t feel that this would be the case with me but time will tell. I really needed this to be done as it was getting more and more stressful every time I had a cannula in my hand as the veins in my arm were completely hard by the chemo 7 years previous. I didn’t want to continue them using the veins in my hand and this was the best solution especially as I can still run and cycle with it and continue my life as normal.
I guess you could say I’m lucky as if this wouldn’t have happened with lymph node and my friend contacting me then I wouldn’t have been picked up and wouldn’t have checked my neck. She has very possibly saved my life and I’m eternally grateful for that.
So ill wait for my next poisoning. I’m already wishing the Summer away and can’t wait to get to the end of treatment and back to some sort of normality. My Mum always said that she would drink poison if it made her better…