A day in the life of a Royal Marsden patient ( UK cancer centre near London)

[Marieleb]

Sooooo... Yesterday was my appointment day...2 weeks ago it was confirmed my love affair with Palbo had come to an end and medical team imposed a 2 weeks treatment break to check eligibility for a clinical trial... and yesterday was THE day where I got to find out next steps.... Well I eventually got there but it took a little while. Now ,don't get me wrong I am a great fan of the NHS ( our free UK health system for our American friends ) and I know they are working under a lot of pressure , always expecting to deliver more with less ... But Having said that I still find the process a tad testing some days ( just like they send a newly junior Dr with no knowledge of my file to tell me back in April that my PET showed progression)...I will let you be the judge

Step 1: the now usual 40mn wait to have blood taken... Since they have streamlined the process ( printed labelled instead of handwritten) it now takes double the time... It's like the staff try to make up for the effectiveness gain by slowing the pace of everything else they do !

Step 2: The waiting room no 1... Then starts the waiting room stare... You are put in a room divided in 4 areas and housing probably 80/100 people... There you can't help but look at your fellow partners in sickness, wondering which one of the 2 of any given couple is the sick one ( not always easy to work out) and being slightly amused at nurses' attempt to call out names that people don't recognize at theirs...This is my " catching up with work, laptop on knees , coffee in my hand " time... After a few hours of this ( by then the clinic is on average running 45 mn to an hour late ) you get move to ( inexperienced patient often thing this move is it.... But you learn rapidly to manage your own expectations)

Step 3: The smaller waiting room. The Marsden ( our cancer centre not far from London ) has obviously extensively researched best queueing system of the world and decided to implement the Disney resort tricks of moving the wait to different locations , each making you feel incorrectly it is the last one... The wait in the small waiting room is an average of 30 mn... There you often recognize familiar faces to whom you smile rather awkwardly...You play absently on your phone , the time there is less predictable so you can't start anything that will need to be packed in a hurry as you will be expected to be ready to move pronto when you reach ...

Step 4: You get taken to a room ( a small one) generally with no signal so faffing on your phone to pass the time is no longer an option ... So you look around, you notice the curtains needs changing in sep 19 , the slightly old fashion flower painting in the frame needs straightening and they have run out of hospital gown in the " accessorize " draw... After anything between 5 and 15 mn ( feels like a century so) you get to

Step 5 : your Dr arrives... Well I should say "A" Dr arrives , or your Dr of the day arrives... You have a large spectrum of options on who this could be , a first year who only started his/ her rotation a few weeks ago ( and needs to get out of the room to check with someone else every time you ask a question), a cocky registrar who thought it clever to shortcut reading your file and thought it could get away with just reading outcome of morning multidisciplinary morning meeting ( and needs to get out of the room to read your notes when you ask questions), a consultant who tries hard to tell you they have all the time in the world for you but whose body language makes you feel that the clock is ticking loudly as she has another 5 patients to see ( and the clinic is running 2 hours late) , or and this was my case yesterday , a lovely Dr, who despite being overworked , tired and slightly less experienced will take the time to sit with you and make you feel like you count...

Now in my case sadly for her the message she had to deliver was a tad unhelpful as she had to admit that 2 weeks treatment break had been a waste of time as they had not checked properly and the clinical trial they wanted to consider for me was closed...

Step 6 : That is the step where you are expected to pretend that you are strong , level headed , altruistic individual understanding that things sometimes go wrong and you need to move an see the bigger picture.... I did not reach step 6 sadly I went straight into ...

Step 7: cried silently , grieving the loss of a chance with not getting a trial, thinking the damage caused by this f. Cancer in past 2 weeks break and realising I was now off sync with my 4 weekly treatment and this meant I had to either cancel my holiday in France or delay cycle 2 by 2 weeks....

Step 8: lovely Dr listens, apologies and empathise and reassures that break between cycle is not the end of the world...

Step 9: 90 mn wait for medecine prescription to come through

Step 10: on way home 6 hours later with new treatment in the bag!

[Red71]

How discouraging! It is much different than my life in my American cancer clinic. But the in the end you got your medicine and we will all hope that this is the one that works perfectly. Sometimes we feel a little cynical when we hope that, but it is truly the one thing that we all hope for. Hugs, Elaine.

[Marieleb in reply to Red71]

Thanks

[Marieleb]

I am now on Exemastane and Afinitor...And moved my holidays by a week... Didn't want to take any chances 😉

[Barb5 in reply to Marieleb]

I was on exemastane for almost 4 years Side effects were minimal gained a lot of weight tho but had no progression and until stopped working. Good luck to you ❤️

[Marieleb in reply to Barb5]

Just what I needed to hear ( well not about the weight gain but hey we learn to pick our battles don't we ;-))... Hope all is OK with you. Are you done with radiation?

[Barb5 in reply to Marieleb]

I have never done radiation

[Marieleb in reply to Barb5]

Sorry I meant radiotherapy ( SABR).. I am French and sometimes I get my English words wrong! Sorry

[Barb5 in reply to Marieleb]

No problem I have not had that either lol

[Marieleb in reply to Barb5]

Oups sorry wrong Barb!

[Marieleb]

Thanks. Canada just rocks!

[Pollingxx]

Exhausted listening to you xx

But we will do anything, take anything just to find the answer xx stay strong , ask questions and your tenacity will guide you through x

[GollyG]

Oh God, I totally hear you. Equally don't want to do the NHS down but whole process is so disempowering, seems designed to make you feel like your cancer isn't especially important, they're all so jolly busy with everyone else! Those consultation rooms are a joke. But, good news, you're on new treatment which has had great results with other patients. Enjoy the sun! Gill x

[BangorBelle]

So sorry you did not get on the trial. I hope the new treatment works. I go to an NHS hospital every week for Taxol and I know just how you feel(only add on a few hours to the time before you escape from the hospital). I made the decision to move to a smaller hospital and the difference in the atmosphere was incredible. Seats were arranged to encourage interaction among patients. I met so many friendly people. Another big bonus was that you could actually see outside instead of being stuck all day in unnatural light. There were only three Drs so they know everyones cases and the nurses new everyone’s name. Also lunch was provided. I hope it works out as well next week but I had a lovely positive experience.

[Rotagirl]

Hi Marieleb, that all sounds so horrific. So sorry you had that experience. The Royal Marsden has such a good name for research but perhaps is a victim of its success in that field. I am lucky , so far, fingers crossed. I attend Lingen Davies cancer centre in Shrewsbury Hospital, Shropshire. How long had you been on Palbo? I am on my 12th cycle but 2 new nodules have been found in my lung the rest ok! Watch this space. The scan in August will determine future treatment. So glad they have found a treatment for you that will clobber the f...... cancer. I never said the f word until this diagnosis but now use it regularly! Enjoy your holiday. Fay

[Marieleb in reply to Rotagirl]

They are the best for research and experience and this is why I take it in good humour ( well most days!) ...I never complain to them in the knowledge that when it comes down to it they have all the amunitions to fight the battles and they don't have the resources to deliver both an effective and caring service .. But it doesn't take away the fact that every 4 weeks I have to put on a strong and positive mask on and go through the day feeling like a battery chicken ... On balance this is definitely worth putting up with to get access to this mine of opportunities and expertise....And My motto most days is when they start being too personal and devoted I should probably start to worry as this would mean it is downhill from now! Doesn't stop the banter so as sometimes it just helped lightening up the mood!

My PET showed small bone Mets progression after cycle 9.. They chose to go for another 2 cycles. By cycle 11 the new illiac bone met had tripled in size ( 3x2cm) and PET identified new activity in vertebrae and significant increased activity in sternum Mets... Good luck for August scan!

[Mindysooty]

Oh Marie you sum up our NHS sadly with such accuracy. The endless waiting, the doctor/registrar lottery, the speed of the actual appointment - my last one was 10 mins tops and the onc asked the nurse to take me out to finish up. Not meant to be an NHS bashing post, there are many attributes and it mostly is down to funding but unfortunately this is our reality. Im at Weston Park in Yorkshire and your description could be there. So sorry you didnt get on your trial but hope the new treatment works. xx

[Marieleb in reply to Mindysooty]

Yes absolutely this is not a criticism of NHS , we are lucky to have free treatment and not have to worry about insurance like some of our American friends on here and I have no doubt all the staff do what they can and to their credit still deliver what is important , namely treatment .... Still therapeutic to have a bit of a moan from time to time so ! And the share the load 😉

[Mindysooty in reply to Marieleb]

absolutely. xx

[nstonerocks]

A very long and hard day for you. I rely heavily on the support I receive from my oncologist and would not feel confident in seeing a newbie or doctor of the day. While nationalized health care has its many advantages, I would not trade my private insurance for it. I worry about how the US govt would implement such a plan and I doubt it could approach the care I am now receiving. There is a big difference between routine well care and catastrophic care. I took a one month break from Ibrance and seem to be fine. I actually feel better than the 2 months before the break. 💕

[Marieleb in reply to nstonerocks]

Yes I can imagine my journey would be quite different if I was a private patient. My mother in France has a wonderful oncologist who has been following her for 16 years now.I reassure myself with the assumption ( hopefully correct) that at least the treatment is the same...

[Hidden in reply to nstonerocks]

I remember when I first moved to America and being shocked at how healthcare was treated as a business and learning that people had to pay to see a doctor. That was completely alien to me. The NHS was founded in 1948 in the UK and for the most part it works. It doesn't just cover routine care, but so much that it would take me a long time to mention it all! Cancer treatment is covered, which is huge. I can't imagine how much it would cost if we had to pay for all the different treatments and procedures we need. We can choose to go private if we wish, either on its own or in conjunction with the NHS. I am using NHS doctors and private doctors to get what I want and I am finding that it is working well for me. But as I often say we have to be our own advocates and make sure we are getting the very best care that we can.

[nstonerocks in reply to Hidden]

I’m any system we have to push sometimes to get things we need in a way that is timely and appropriate. Agreed care is expensive. If private insurance was nationalized here meaning you could buy health insurance across State lines, it would help keep costs down. Ibrance has been available here for about 5 years. I don’t trust our government to run healthcare. I will soon be on Medicare here and have to purchase pricey supplements. But I want to still have access to the highest level of care and new treatments as they come out. It is a problem. No perfect answer.

[Hidden in reply to nstonerocks]

Yes, you're right. We do need to push. I had to push to get the shingles vaccine recently. My oncologist and GP both agreed that it was a good idea to have the vaccine, but the rest of the team at my doctor's surgery were against it, as it's not licensed for people under the age of 70, even cancer patients. So I kept pushing and after three months I finally got it. I hope you can continue to receive the best possible care and not see that go downhill when you retire. Shortly after my brother-in-law retired my sister-in-law was diagnosed with colon cancer (they live in Colorado). We were worried about how they would cope financially, and offered to help, but they decided that my brother-in-law would go back to work for a while and they found ways to cut back on some of the medical costs such as receiving results over the phone free of charge rather than paying for an office visit. They were also allowed to pay their medical bills in instalments.

[Barbteeth in reply to nstonerocks]

I’m in the UK but have private health insurance...have for about 30 years

The problem with NHS is that it’s badly run as I have been treated by both systems...and because it’s free...some people abuse it...they pitch up at emergency centres with trivial problems that could be dealt with by a pharmacy ( would have to pay there though) or they cause trouble turning up drunk from being in fights and abuse the staff...there are security guards at night....I would have to be at deaths door to go to an accident and emergency place at night

The system was set up after world war 2 and was needed at that time but now it’s underfunded and people who do need treatment end up having to wait in overcrowded clinics ...I would struggle to cope with it the way I feel with this disease...we need to be cared for in a sympathetic way and made to feel that we matter not treated like a herd of animals

I know private insurance is expensive but I would rather have that than a new car or posh holidays etc....we all have different priorities

Barb xx

[nstonerocks in reply to Barbteeth]

We have a huge problem here with abuse of emergency rooms. Many treat is as a clinic for ailments that should be seen in a clinic or doctors office or not at all. Uninsured patients and illegals who have no other access to care use ERs for primary care. An ER here must treat the emergency and then refer you out for follow up. Of course drugs alcohol and traumas keep ERs overworked especially in cities. I worked in a NYC ER for many years. It was usually chaotic. In an ideal world people and governments would do their jobs and allocate and use resources honestly and fairly. I rarely see that happen, especially in a government setting where there doesn’t seem to be accountable for how money is spent, just keep raising taxes and cutting back on services. In private industry, CEOs get ridiculous compensation and the allegiance is to stockholders. So things like drug costs are through the roof. Our politicians take money from health care industries such as pharma and insurance, so the average person is stuck. It’s shameful, but there you have it. I have no quarrel with drug companies making a profit and recouping research costs. But does that really mean Ibrance has to be $500 a pill? Thank goodness I have good insurance. No one should have to be denied life saving drugs or go broke trying to stay alive.

[Barbteeth in reply to nstonerocks]

Oh it’s sounds just as bad as here

Ibrance was only approved on nhs about 18 months ago so there were so many women who didn’t get to benefit...just so sad when the drugs are out there but too expensive

Barb xx

[BangorBelle56 in reply to Barbteeth]

Hi Barb, are you saying you are having private cancer treatment in the UK? I have wonderful private insurance but I was told you have to use NHS because of meeting held to discuss patients.

Ruth

[Julie2233 in reply to BangorBelle56]

Hi Ruth, I was in the same position, I had good private health insurance but the breast consultant assured me that there would be no difference in treatment, so I stayed with the NHS.

When I was diagnosed with bone mets after a long period of poor care with the NHS, and then I discovered that I hadn't been allocated an oncologist after mine had gone on maternity leave and no one was bothered that there would be a twelve week delay before I could start treatment, I decided to use my private health care and it was a different world.

Unfortunately, after having a private policy for 20 years through my husbands employer, I lost it just before Christmas when he was made redundant, and I'm back in the NHS.

If you are in the uk and have private insurance, I'd make a few calls to investigate what they will offer. You generally have better choices for drug combinations, individual attention, you always see the oncologist and have access to his/her secretary, and no waits for scans and x-rays. I recently waited nearly 3 months for an urgent brain scan. I could have had it in a week if I'd been able to go private.

[BangorBelle56 in reply to Julie2233]

Thanks Julie, That is good to know. sorry you no longer have your private insurance. Good luck.

Ruth x

[Marieleb in reply to Julie2233]

I am a civil servant so I don't have private healthcare through work... Ironically I started to look at private healthcare about a year before diagnosis but from what I could see they either covered diagnosis or treatment and I couldn't work out which one I would rather have ( use private for treatment but take the risk to have diagnosis missed by NHS or get a potential diagnosis from private but then have to deal with NHS for treatment)... So I left it ... Obviously not meant to be!

[Barbteeth in reply to nstonerocks]

I’m having 5 weeks off due to radiotherapy...was a bit concerned about no Ibrance but apparently it doesn’t matter in the whole scheme of things...still taking the letrazole and still got all the hideous aches and pains so I’m sure the letrazole is the culprit !!

Can start back next week again...I sort of want to be back on it as I feel vulnerable without Ibrance as if I’m inviting cancer back in....if you can understand that

Barb xx

[nstonerocks in reply to Barbteeth]

Understood but look at it in a positive way you are giving your body a rest. When I switched from letrozole to faslodex I had not more horrible body aches or joint pain

[Barbteeth in reply to nstonerocks]

Yes a few ladies have said that about changing from letrazole...evil stuff

Barb xx

[Marieleb in reply to Barbteeth]

I totally get that. Only 2 weeks of meds and I was panicking... Wishing all the best... Have you got your outfit for the wedding yet?

[Barbteeth in reply to Marieleb]

I have....coral coloured dress and shoes...cream hat and clutch bag...very unbarb as I live in jeans and jodhpurs mostly!

Barb xx

[Hidden in reply to Barbteeth]

Please post a picture when you are at the wedding. I'm sure you will look lovely.

Sophie x

[Have-faith]

You are a wonderful writer! Your narrative of your experience felt like I was reading a page from a published novel. I am sorry that the trial was closed only because of the disappointment it caused you. Trials are just that - trials. Perhaps something more powerful then us wants you on approved meds. Stay positive. As for the break in your drugs - many of us have had to do a break here and there and we are still here! Sending you positive vibes from New York City! Faith

[Tam-56]

I hear you...

[Hidden]

Hi Marie,

That must have been so disappointing for you. I'm sorry to hear that you were not able to take part in the trial after all the effort you went to in order to get there as well.

Take care,

Sophie

[blms]

Wow! We are fortunate indeed with health care here in the states. I have had very lmited GB health casre experience many years ago, just a few hours, sitting in a long hallway with a ton of people, waiting to check a young child while on vacation. But under MBC conditions, and age, many things become untolerable. i am so sorry you have to endure this at this time in your life. We are all here for you.

[RLN-overcomer]

Sister/warrior you are yesssssss still standing, and what doesn't break you will only make you stronger. May the God I serve deliver you from this disease. Amen

[mariootsi]

Wow! Had no idea what you in the UK had to deal with. So sorry you had to deal with all that. It is stressful enough going to these appts. You must hsve been exhausted!

That is awful you can't go into the clinical trial.

I pray for success for you with your new treatment with no side effects.

Love,

Marianne.

[NPmary]

Marie, what a day you had! And that it's a very typical day except for the sad news at the end!!!

Hope you have your holiday and the best possible outcome of your treatment.

♥️

[Sandig1948 in reply to NPmary]

I also mix private with NHS.

I have been going to King Edwards, Windsor , specialist Breast cancer NHS unit’ The Parapet’ for almost 30 years, since they started the first one stop breast cancer unit in the Uk.

The staff from the oncologist down to the receptionist are dedicated and yes sometimes you have a wait but when it’s your turn they have all the time in the world for you.

We also have a dedicated breast cancer nurse allocated to us.

I realise how lucky I am to have this service on my doorstep and have welcomed the opportunity to praise this fantastic unit.

I wish you all had the same, it makes such a difference to be able to say, thank you. I am currently fighting brain mets in addition to MBC in lots of places but have every confidence in my team and know they are on my side.

I see so many people without the wonderful family and friends network that I have. 30 years having had 3 primary cancers, all with poor prognosis,

I consider myself lucky to have seen my children and grandchildren grow.

You are all such inspiring ladies. Love to you all.

Gigi

[Becca65]

I have gone through this here in the USA. When I finally got the referral to a world class cancer dr and hospital, I too waited. After waiting and pestering my home cancer dr for a year for the needed referral to get to Roswell Cancer Treatment Center and I think to see a HIPEC dr, but it ends up being with Dr O who is a world class Breast Cancer Specialist. So there’s a year of waiting. Next is the month that it took till they could get me in. Roswell is 2 + hours from my home - more waiting. I get there and still think I am going to see HIPEC Dr. I wait in a super busy community area for 15 mins to get called over to do my intake paperwork, give them my insurance cards and get my Green Roswell Card (your magical pass to all things at Roswell). When I am done doing this they send me upstairs to the Breast Cancer Clinic waiting room, where I hand over the pre appointment paperwork and wait for another 25 minutes even though there is only one or two other patients in this area and it is built for closer to 80 patients to wait. I finally am summoned by a nurse who weighs me, takes my blood pressure and seats me in an exam room with my son and daughter in law who have come for moral support and those ever important extra ears. Now this room is down a series of halls far away from the main waiting area. It is so far away and removed that once the nurse leaves you, you wonder if you are the only patient in the entire clinic. There is no noise except occasional announcements on the PA system. You can see no human life outside your party got at least a couple hallway turns. Just about the time you think you have been forgotten 20-30 minutes a young woman whom speaks with a heavy (I think) German accent and is way to young to be said marvelous world class HIPEC dr and is indeed an Intern for Dr O the dr I now am informed I have to see and be screened by before the HIPEC guy. Still thinking if I pass there muster I will get to see HIPEC dr today. So this intern has read my file from cover to cover and she has gone over with Dr O. He thinks I am receiving proper care and encourages me to get a drain installed in my belly so I can drain my ascites myself at home. I tell her about a study I read about mentioning the HIPEC and sell myself as the perfect candidate for HIPEC. I basically perform the best most coherent selling job I have ever done in my life. This intern then says okay you have sold me after about 20 minutes of interviewing she says I will get to see world famous Dr O. She then leaves and I think finally I am going to see a real dr any minute. I sit, my son sits and his wife sits waiting and waiting for so long we start getting punchy and are making bets on how much longer it will be before the Dr arrives. One hour passes - wow!!!! Then finally after another 25 minutes the intern arrives saying Dr will be there in just a moment ( we mentally prepare to wait another 20 minutes). We are totally surprised when a knock happens mere moments later and in walks TaDa - Dr O (no HIPEC dr in tow). He goes over my treatment past with me and again I am told I am receiving the standard of care and encouraged to get a drain installed. To me this is a challenge at this point. I don’t want to settle with the standard of care and accept that I will just be another standard patient being medicated until I die. I want a chance at a cure. I tell him this and sell myself even better/harder/stronger than I did before. All this happens in roughly 7 minutes. The fabulous Dr O lauds me for researching my disease and being so well informed. He says I am indeed a very good candidate for HIPEC if only he can sell me to said HIPEC Dr. as like all other HIPEC practices I have contacted via email or phone, (20 or so) we don’t work with breast cancer patients. He goes on to say and your insurance won’t cover the surgery. I am of a singular mind, my mental processes are clearer and faster then ever before in my life. I barely let him stop speaking when out of my mouth I let him know they will cover it if it is put through as palliative care rather then a cancer treatment. Dr O again stunned by my knowledge of my disease and insurance workings, says okay I will personally carry your case file and all scans to our best HIPEC guy and present him with your argument as to why you are a perfect candidate for this surgery. He starts to walk away and turns to tell me he will let me know at my next appt. I tell him I am not local and don’t want to make the 2+ hour trip if the HIPEC guy won’t see me. That I can get any other standard treatment at home and don’t want to waste my time and energy with a trip. I am after all still filling with ascites and the trip is hard and very uncomfortable for me. He is floored (in a good way)by my candor and that I feel my time is important too. So after all this waiting I sorta guess I will wait for weeks to hear from anybody. I am totally shocked the next morning, when I get a call right around 9am from the HIPEC Drs office. They want me to come in for an appointment in a week. THE HIPEC DR IS WILLING TO SEE YOU AND DO THE PROCEDURE ON YOU. I swear to god I hear the proverbial singing of angels at this moment.

I hope I made some of you laugh or smile or say gee I’ve been down that road myself for some treatment you needed.

Have a great day ladies!

Rebecca

[Becca65 in reply to Becca65]

Oh one more thing - my son and daughter in law were in awe and left almost slack jawed by my performance, clarity of mind and the intelligent argument I presented to the drs. Also I needed to say my son was closest to the correct time at how much longer we would wait bet so he won - he had to take us out to lunch!

[Sunnydaz in reply to Becca65]

Amazing, can you come with me to my next appointment please! 😉

[Sunnydaz]

It sounds exhausting, so sorry you had to endure such a long day and didn’t get to do the trial. I’m in the US and my days sometimes start at 8am and end at 4pm. I rarely see the same person although they say they are my “team”.

Everyone has a different opinion as to what I’m supposed to be doing. It’s so frustrating. I only see my Onc on scan day, every 3 months. I have had a second opinion because of this and I’m considering a third.

I hope you get many happy years from your new meds and can’t wait to hear about your vacation! xo