All I can advise anyone going through a cancer journey is don’t be afraid to change Oncologists, hospitals, Trusts or even countries if you feel you are not getting the best treatment for you! As the Professor I seen in the Royal Marsden said 9 times out of 10 the standard treatment works however there’s always that 1 in 10 it doesn’t work for and that’s when Drs have to step outside the box. If you Find yourself in the position like me With a Dr not prepared to do that for you then you need to say thank you for everything you have done for me but I need to go elsewhere.
That’s the situation I found myself in and in July 2017 I asked my GP to refer me for another second opinion in another Trust. I knew from recent research conducted on BRCA Breast Cancer that there was a new kid on the block which had shown positive results in comparison to standard chemotherapy in a trial for women with BRCA mutated Breast Cancer. As my oncologist had point blank refused to go down the Individual Funding Request (IFR) route which is a request to use a new drug which had not yet been approved by NICE* (the Government body who approve medicine to be prescribed by the NHS), under exceptional circumstances
*National Institute for Health and Care Excellence (NICE) provides national guidance and advice to improve health and social care
So that was the breaking point of our Doctor Patient relationship. How could I trust my Oncologist was doing everything within his power to help me if he refused to do this for me. This was the the straw that broke the camels back. Two years of going through what I had and every step of the way I had to fight for what was best for “me”! Thinking back I now realise if I hadn’t asked and fought for everything I know I would not be here to tell the tale, which makes me sad for all the women who could have been in that 1/10 category but didn’t know, have the strength or courage to ask as I’m most certain they are no longer with us.
Having made the decision I was moving hospitals and Oncologists I got my GP to write a referral letter and sent it to an Oncologist I had been recommended in another Trust.
Within a few days I received a phone call from his secretary to offer me an appointment a few days later.
So the day arrived to meet potentially my new Oncologist. When I was called in to see him I was nervous so I just got straight to the point with him and said “I know this appointment is to get your opinion on my treatment plan, However I feel I have come to the end of the road with my Oncologist who I am grateful for what he has done but just feel I need to get a new perspective on my treatment.” Immediately he put me at ease and said I was within my right to ask for a new Oncologist he said “you may even come to the end of the road with me too in the future but I will not hold any grudge”.
He confirmed what we already knew that the lump was cancer and it was in the lymph nodes in my neck and around my collarbone.
I told him I had researched the new drug called a Parp Inhibitor which although had not been approved by NICE to be given to women with breast cancer it had recently been published in a recent trial and had shown very positive results for women with BRCA breast cancer. I informed him that I had made contact with the company who manufactures the drug and they were prepared to supply it to me under compassionate grounds. (Many people do not know this however many drugs company’s will give a drug which has been trialed and has proven to work and May already be prescribed in other countries, however is not yet licenced and approved by NICE. This means the drug is free the only cost to the NHS is the prescribing and administrating of it!!!!
The other case when drugs are offered on compassionate grounds and was the case for me is when a drug has been trialed and licenced for the treatment of one cancer, this instance Ovarian Cancer however could benefit another type of cancer in my case breast cancer. Obviously we know this is a marketing ploy by the pharmaceutical company’s to get the NHS to buy the drug, but seriously it’s free there’s not much the NHS get for free, so why not take advantage of these compassionate grants.
A No brainer I hear you say …. but no no no not that simple in the UK although I’m sure you are not surprised by that.
All the hoops to be jumped through the ts to be crossed and i’s to be dotted means that consultants are very reluctant to go down this route. I suppose with the claim culture the UK has become their Risk Assessors are very much against this option . However I believe it should be the patients choice and if they know there are risks involved and sign a declaration which they do for any given treatment then there cannot be any come back from the patient or their family.
At the end of the day the people considering going down this route are the ones who have had all available treatments and now have no options left, so they might as well give it one last shot of something whether it is licensed by NICE or not.
Well my new Oncologist agreed that he would consider going down this route for me however it would take time to get the correct process in place and in the meantime he wanted to start me immediately on Carboplatin!!
Huh really? I asked him “just like that” I told him I had been asking for Carboplatin since being at the Royal Marsden but had been refused it. He told me that because I was BRCA and Triple Negative that it made sense to try it.
So I was booked in to start chemo for the following week. So I left the hospital that day a very happy person and a lot more confident that I had felt in a long time. It was like a weight had been lifted off my shoulders that I could concentrate on me and not spend every minute of the day researching the best treatment for myself.
The next 8 months of my life seem to be a blur to me now as Carboplatin was one tough cookie!! I think I had every side effect associated with it. I was now attending a new chemo clinic so had to get used to their regime and the surroundings.
Within a day of having chemo I had nausea which went on for days, this then lead to constipation, which prolonged the nausea making me dehydrated. So a week later I was admitted for a few days stay in hospital.
Round 2 was slightly better as they equipped me with lots of anti sickness tablets and dulculax, however I ended up back in hospital being Neutropenic which for any of you that is asking yourself what that is its when your white blood cells go below a safe level and you are at high risk of infection. So I spent 5 days in a side ward sleeping my days away as the fatigue I had was not normal.
On my third cycle I was offered a syringe driver with anti sickness meds in it which would deliver a steady supply to me and hopefully help with my sickness. It was arranged that the District Nurses would come out to me every day to change the meds. Thankfully this did give me some relief so it was agreed that I would get this prescribed every 3 weeks.
What I haven’t mentioned is that at the start of 2017 I had decided I was going to continue my fundraising however this time I wanted to raise money for the BRCA Research at the local University so having met the Dr at the lab who gave me a tour I decided I would organise a Black Tie Ball at a local tourist attraction which had a beautiful events room.
My very good friend offered to help me as well as a friend I had met in the Regions BRCA support group. So as a Project Manager in my past life I started putting my skills back to use and commenced the mammoth task of organising the Event. First I chose the Venue and set up a Facebook page. I contacted local businesses and asked friends family and ex-colleagues if they wanted to buy a ticket. As the tickets were going to be £100 per head I knew it was very expensive so wanted to give people ample time to decide if they wanted to go.
The planning took 9 months as the date was set for 13th October 2017. As you will have read in my previous blogs I had a few other things going on at this time too but I managed to do it. The night arrived We had managed to sell 33 tables at £1000 per table. The raffle and auction prizes and photographs taken on the night and donations made from people who could not make the Ball managed to raise £38,000.
I had my chemo 2 days before the event so I had my dress and wig on, I got my make up done and my syringe driver was in a wee clutch bag so was ready for the night!!
All I can say was it was fantastic everybody had a ball the food was fab, the music was brilliant, the blues band had donated their time for free I managed a speech I had a few other guest speakers and the compère was great craic. Everybody had a fantastic night and I was getting messages from guests for days afterwards saying what an amazing night they had. I think I managed to sleep for 2 days afterwards I was absolutely shattered but i was so pleased it went well.
I had a scan in October which showed the chemo was working!! my tumours were shrinking. It was great news and therefore made all the sickness and hospital stays worthwhile so my Oncologist decided I would have another 5 cycles of it.
The chemo cycles went on, however I started to need blood transfusions. I knew when I needed it as I got so tired and breathless I couldn’t climb the stairs without needing to sit at the top to catch my breath it was so debilitating. I had no energy and spent days and days lying in bed or on the sofa any small task left me exhausted.
One afternoon in early December I started to get pains in my legs. A few hours later I was shivering so thought I was taking the flu. A few hours later I was lying with blankets around me beside the fire. So I rang the chemo line which is a 24 hr line people in chemo can ring to speak to medical staff who then would often tell you to come straight to the ward which I was told to do. As my husband had my kids at football I rang my cousin who drove me immediately to the hospital.
After examinations xrays and blood tests which I barely remember as I was extremely ill at this stage had fainted and was shaking like mad. I was admitted to the ward, I had a bad night that night the pain, the fever, the horrors, drs in and out to me getting more blood. It was the next day I learned I had Sepsis which is a serious complication of an infection and can lead to organ failure. Thankfully I was given numerous IV antibiotics but told I would be in hospital for 2 weeks.
Over the next few days I really improved but would need IV antibiotics 3 times a day for 2 weeks. I had a Hickman line inserted into my chest due to collapsed veins which I had inserted for chemo in August it’s an IV line which is inserted into the central artery but a second line hangs from the chest. They had discovered that This was the source of my infection so I was taken to theatre to get this removed. I hated it anyway this had been my 3rd Hickman line inserted over the 2.5 years and I had got infections in the previous two although it wasn’t Sepsis. With this now gone I had no access to my veins. Believe me my arms and feet were black and blue as I had nurses, doctors, blood specialist and anaesthetists hoking at my arms trying to get cannulas inserted. Unfortunately I had to go through this every few days as my veins rejected the cannulas they did get in every few days.
There’s only so much hospital food you can take and when I’d got my appetite back the thought of the food made me nausea so thank fully my lovely friends and family brought me some home cooked food in. As I was feeling much better by the second week I was allowed to escape for a few hours between my IV antibiotics so I was able to get to my sons last carol service in Primary school and get out for a few hours to see my granny on her 90th birthday.
D day finally arrived and I was able to get home for Christmas. My Oncologist had agreed that I could get a break from chemo until the New Year and he would arrange for me to have a Power Port inserted in my chest instead of another Hickman line. A Power port (Portacath) is a similar device going into the main artery but is under the skin no outer parts which means there’s less chance of infections as it’s protected by the skin.
Well thankfully I was able to enjoy another Christmas with friends and family. I know you either love it or loathe it but strip back all the hustle and bustle and money being spent it’s that one time of year everyone really makes an effort to meet up with friends and family if you don’t then you should because a lot can happen in a year and for many it could be there last Christmas so if christmas is the only time families get together embrace it and enjoy it because you might not get another chance.