Secondary Breast Cancer in the time of Covid - a Rant

[Lancashire Lass]

It goes on and on. I had a nine month wait for a telephone consultation with my cardiologist, two weeks before it was cancelled and I was told they didn’t know when they’d be able to offer another! This is now medical negligence, so I have requested my case notes and consulted a legal team. Not after money just need that hospital to get its act together and provide a proper service. It’s quite disgraceful. 
I do believe it’s not entirely each hospital or doctors fault. The government has been running the health service down for at least 15 years and bringing in private services by stealth just like they did with dentistry. One day they will sell it off wholesale and guess who the buyers will be. Ruddy Americans. Watch out Britain our precious health service is under greater threat than you realise.

Another rant I’m afraid!

[ep]

Hi. It’s not just you for sure. I found a rash with small lumps a bit before Xmas. My gp wasn’t sure but since it was at the same site as my previous tumour referred me to the urgent breast clinic. Nothing. I followed up but nothing. They said they have a huge backlog. I’m lucky that I could pay to go privately. (Though that can’t last). Even with positive biopsy requiring surgery I couldn’t get into the nhs without a long wait!  This is disgraceful I think. 

[Lancashire Lass]

Not to worry Micky, I don’t look on this website everyday. I must correct myself I said it was my oncologist who self isolated because of asthma, I should have said cardiologist. My oncologist is a lovely lady who actually caught Covid in the line of duty in 2020. As a result she’s back for three days a week but she is amazing and answers all emails really promptly. She even moved me from one chemo unit to another because I was so unhappy with the one at the big district general.

Oh dear I sound so ungrateful which I’m not. So much has changed in nursing and medical care  in the past twenty years and not for the better and I find it difficult to come to terms with.

At the moment I’m doing OK on the current chemo, I hope this lasts until Christmas.

LL

[micky140]

Hi Lancashire Lass, been having password problems so couldn’t access to reply!  I am so sorry you have had bad experiences at the Christie.  I had radiotherapy there in 2000 for primary, and my lovely oncologist extended all his patients check ups from 5 to 10 years.  

I felt very very safe when I was referred back thereafter 3 nightmare months at a local Nightingale, every appointment stretched to, and sometimes beyond, limits, not told about appointments and the. told off for not turning up, overcrowded clinics, went from Stage 3 to Stage 4 in 3 months there.  So I was, and am, very relieved to be back under their care.  I, too, am aware how underfunded and understaffed our NHS is, we cannot afford to lose it and should fight every move in that direction.  

take care

Shocked first time around at how full the waiting rooms are there, but it has been like a ghost town during the last 20 months, busier this week.

And you (all of us) are entitled to a rant!  

[Lancashire Lass]

Hi Micky,

Im so glad someone is having a positive experience especially at the Christie. 17 years ago I was treated there for my primary and it was an experience I wouldn’t like to repeat. Hours of waiting for chemo with the chance they’d not have time to fit in! A waiting area like an airport departure lounge with HCAs bawling people’s names out across acres of space (so much for patient confidentiality) After the initial consultation with the arrogant oncologist didn’t see him again until I requested an appointment. He arrived 3/4 hour late having been out to lunch! I was seen only by a research nurse who was as much use as a chocolate teapot. The breast care nurses were notable by their absence. I have such a phobia about the place it makes me feel sick just driving past.

Fortunately I no longer live in Manchester so that doesn’t happen often these days.

I am so glad they’ve got their act together and doing better by cancer patients than they were.

You are certainly very fortunate perhaps it’s because the Christie deals with cancer and only cancer and were not inundated with Covid patients like our local hospitals were. Our cardiology department essentially closed down and telephone consults were all you got, if that. My personal oncologist self isolated for three months because he has asthma. Apparently that makes you incapable of using a telephone. All the while my breathlessness was getting worse and nobody suggested it might be something unrelated to the AF, no suggestion of a CT or X-ray. Our local surgery, which has only female GPS working part time, closed its door. There was certainly no evidence that they were working harder. Trying even to get a telephone consult was a nightmare and then being asked to send photos of the offending organ. How does a photo of an ear help in anyway with earache! Ridiculous. Our GPs still prefer to give telephone consultations and maintain that we the patients prefer them. Where they’ve got that idea from who knows

Never was the NHS postcode lottery making itself felt as much as it is now.

My husband and I were clinicians in the NHS for forty years each so we do appreciate the stresses and strains placed on the service. The lack of staff is entirely due to government cutbacks in their austerity drive, the quite abysmal training given to doctors and nurses who come out of university unprepared for the job and the ever upward rise of the bureaucrat. The country needs to come to its senses and appreciate that the NHS is under threat and start fighting to save it. It’s all very well clapping and cheering our appreciation but we really need to look how it’s funded and be prepared to pay more. I could go on but that’s enough of a further rant. 

Lancashire Lass

[micky140]

I’m sorry to hear about your experience Lancashire Lass.  Mine has been completely different.  I had my first face to face diagnosis of incurable Stage 4 sbc in March 2020, right before lockdown, at the Christie.  After that it was monthly blood tests and 3 monthly CT scans in a very safe and almost empty Christie followed by thorough telephone consultations, with time to talk and ask questions, plus e mail and telephone contact with the consultants secretary and thé MacMillan staff when I was concerned about anything.  After a bad reaction to a bone strengthening infusion thé consultant saw me face to face once.  And I was invited to an Christie annual sbc presentation, on line for the first time in 2020, where 6 hours of presentations  were made by the consultant, MacMillan, dieticians, Maggie’s, and 6 women with sbc - and questions could be submitted and were answered.  So much information and an amazing effort from them, really helped me and my husband.  

 I am lucky in both my GP and dentist, they are both wonderful.  My GP responds quickly to any Ask My GP requests, and has seen me face to face once for a recurrent earache.  I  always make  sure that they  are thé practioner I see or contact when I need to.  I have also, in the past and during the pandemic, let them, their practices, and the Christie know how grateful I am for the NHS, the training they have done and the service the particular practioner gives.  I do know I am extremely fortunate, but I have also used what controls I have in my choices to make it the best for me.  I know that’s not possible for everyone,   My only difficulty was being unable to see the dentist for about 6 months before I could have a bone strengthening injection.

 It hasn’t been good not seeing practioners face to face but we should remember that they have also been at risk of covid, they have worked in hospitals during the pandemic, they have opened their surgeries for covid jabs, mine is doing weekend blood tests to help the local NHS hospital, they  have had increased workloads due to covid, and there is a huge shortage on NHS staff across the board.  

I am almost 2 years on, stable mets, cancers shrunk significantly, still incurable but very grateful.  If you can do anything to change your experience to a more positive one please try it.  One of the best pieces of advice on a forum was to take control of what you can, and that has served me well. 

[Steval]

Hi there,

just seeing how you are getting on 

Steval

[Lancashire Lass]

Hi Jaybro,

I knew it couldn’t just be me! I do wonder if it’s known how many people nationwide are going through cancer treatment not to mention those with COPD, severe asthma etc. The country needs reminding that there are vulnerable people in society, yet another failing of this government. Why isn’t the tv and internet being used more to keep people informed.

I agree that consultants don’t talk to one another. I don’t think there’s been a conversation between my oncologist and the oral surgeon, both pretty good in their field. The mouth cancer is “on hold” until we see if the TBNC can be held in check. The next move there would be to remove a chunk of my lip! I don’t fancy that when my immune system has been knocked so hard. How long would it take to heal? But have they discussed that, no? As for my heart condition, I have to constantly remind people, amazing how it can be top priority one minute and completely forgotten the next. Cancer it appears trumps everything.

Great idea with the summer house. Is it a solid one or a gazebo type? Thinking about it last night I’ve suggested to my husband that with a bit of manoeuvring we could put the awning on the caravan and I could see my pals there. It’s hard when the rest of the country is getting some semblance of normality back.

I’m going for my booster later this morning but it was pretty easy to organise, although I’ll have to use Google to find the venue. In west Lancashire they’ve been giving the two jabs at the same time although I’ll pass on that. I have to say this area has been extremely efficient at doing the vaccinations and has always been ahead of the game.

How is your eye? I can’t imagine how unpleasant that must be. Has it had any treatment? Like you there’s no way I’d have made a connection with a sore eye and breast cancer. It must be extremely rare. My mouth is an entirely different cancer, as resistant to chemo as TBNC appears to be.

It was good to have yesterday’s rant, I’ve needed to say that for ages.

Chin up girl, we plod on doing the best we can.

Helen aka Lancashire Lass

[Jaybro]

Hi LL

I completely get it. I was in regular phone contact with oncology throughout the pandemic because we were trying to sort out long term side effects (primary chemo attacked my tendons so my joints were so painful and I couldn’t do simple things like pull up a weed or wring out a flannel). But could I get hold of a GP?? I dismissed my early symptoms as unimportant in the pandemic (never occurred to me that a red eyelid was a symptom of cancer) but, once they’d got noticeably worse, my GP showed no interest. It was ringing the nurse here about something else, about 4 months further along, that took me straight back to oncology, in person, the next day. It was still another three months before SBC was diagnosed and another month to establish hormone-receptive or TN. Unfortunately it was the latter. So, like you, secondary bc was spreading during the pandemic with no easy way to get a diagnosis, let alone treatment. In fact, it never occurred to me it was BC again!

I’ve found no consultant seems to want to interact with another in another field. My cancer is in my eye socket. It was left to Ophthalmology to sort that out. They found the cancer and passed it back to Oncology and, despite saying they needed to see me every 2 months, I’ve not heard from them because I’m under Oncology. Equally, Rheumatology doesn't want to know, let alone Neurology which I was referred to 2 years ago!  Oncology RULES! That’s probably right because, without treatment, we wouldn’t survive, but other things do need attention and it’s bloody frustrating.

I’ve resolved my socialising by getting a summerhouse with folding front doors so there’s plenty of air-flow and a bit of shelter. I need to find out how to heat it now! But I’ve been shielded throughout, have been advised to continue shielding till I’ve had my third vaccination (and what a palaver that was. It’s now on Thursday) and my flu jab (impossible - all the pharmacies are booked till December and my GP practice has no further supplies!!). I’m so looking forward to being back to some semblance of a life but there are so many obstacles put in our way. I don’t think the emotional side of SBC is considered much at all by GPs and hospitals. We need to educate them!

Rant over. I hope you see you aren’t alone in your frustrations xx

[Lancashire Lass]

Hello Everyone,

Is anyone else finding this on going pandemic making our already bad situation even worse. How many of us I wonder are victims of Covid without ever having had the virus? I feel I am. I have atrial fibrillation and tended to get short of breath. During the pandemic during our daily walk I felt the breathlessness was getting worse. I told my cardiologist over the phone but was “reassured” that it was due to the medication. Then he took himself off to self isolate due to asthma with no one deputising for him. The hospitals pulled up the drawbridge and GPs closed their doors. I needed to see a dentist and once they started up I went to see mine. I can still see a dentist quicker than my GP! A small lump in my mouth turned out to be malignant so I was sent for a CT of my chest. My lungs were full of metastases and it took 8 weeks to get a biopsy which revealed it was secondary TNBC. My oncologist ( yet another phone consultation) prior to this hadn’t been worried about my increasing breathlessness either. This was after a recurrence 3 years earlier! When my cardiologist phoned (still no face to face) and I told him the diagnosis he couldn’t get off the phone fast enough! The next appointment with him was for 8 months later by phone, I think he hopes I’ll be dead by then.

Treatment eventually started in May 2021, with no sparkling results but all the side effects. With a much reduced immune system I know if I get Covid my days will be numbered so to all intents and purposes I am self isolating. I imagine other people in the same boat are having to do the same. So the rest of the world now thinks the pandemic is over and the young ones particularly are oblivious to those of in society who are still vulnerable. Why can’t they wear masks when in shops and is it so hard to keep social distancing? I love socialising and seeing my friends, it perks me up no end but now we can’t meet in the garden that happens less and less. I think my mental health is suffering as a result.

How does everyone else feel and how are you all coping in these strangest of times?

Lancashire Lass