No news day

Hi all.

Just stopping by to give you an update on Amanda following our latest visit to the hospital today.

- Met with the consultant neurosurgeon earlier. She was good. 

- None the wiser on what it is yet though. The multi-disciplinary team met at 

lunchtime to discuss the case today and reviewed the scans. Some said 

it could be a fresh tumour, some said it could be breast related. 

The consultant indicated that she thought it was related to her breast cancer 

but until they extract it, they won't know for sure. They still don't know 

100% whether it is cancerous.

- It will be removed but we don't know when. 

- Amanda is now on a "short notice" list so she could conceivably have the 

operation with just 48 hours' notice, but she will be operated on by mid-

June.

- Conversation was positive, and despite the obvious risks associated with 

operations in that area of the body, there was nothing to suggest that it's 

not treatable.

So although it is frustrating that we still don't know for sure what it is, we know it's a priority and we remain optimistic.

Thanks for taking the time to read as always.

Dean.

Husband of Amanda.

Life or death....

All.

Dean (husband of Amanda here).

This is a long blog entry. VERY LONG. I suggest you make yourself a cup of tea/coffee (other drinks are available) and have a look at the product of three hours of my time this morning trying to get to the bottom of our latest NHS battle. It's a bureaucratic battle which has us held captive by the decision makers at the NHS - and one that at the time of writing this, is still to be resolved.

The below correspondence has been forwarded to both our local MP and the MP within whose constituency our local hospital is located. Our local Patient Advice and Liaison Service (PALS) have been included in the emails too (they have contacted me this afternoon to say there's a 5-8 working day response time).

Here goes.....

*****************************************************************************************************
I am writing to share our recent experience of ‘treatment’ within our local hospital and GP practice. Apprehensively I use the word ‘treatment’ as I wish to record a catalogue of issues during the last four-week period. Once you have digested the information, I suspect that you will agree that this is at best appalling and at worst the most inept treatment of someone who requires the system to support her fully at this current period in time. Sorry for the length of this but I feel it imperative to share with you everything that has happened.

Firstly, I have put into bullet points below a very brief synopsis of information you need to consider when reading this submission.

• My wife, Amanda McDonald, is 42 years of age. She is very fit, tee-total, pescetarian and a non-smoker. She is also an Oxford graduate and business owner.
• Amanda is a chronic migraine suffer and has been since the age of 20. In all the times that she has suffered from migraines, she has visited her local GP multiple times, tried countless suggestions and has identified that there are only two forms of prescribed medication that help with the management of this condition.
• In December 2013, Amanda underwent an operation to remove a Triple Negative Grade 3 cancerous lump from her breast and underwent breast cancer treatment at the 'University Hospitals of North Midlands' in Newcastle-under-Lyme, North Staffordshire. Chemotherapy and radiotherapy completed in June 2014.
• Amanda underwent her review in December 2014 and visited the hospital in February 2015 after a minor alert after detecting a lumpy mass in the same breast which turned out to be nothing to be concerned about.

Timeline forming the basis of this submission

28th April 2015
Amanda experienced episodes at her place of employment, where she is MD of a creative agency in Uttoxeter. She simply forgot to do things that we take for granted in everyday life such as how to send a text via mobile phone, how to even make a telephone call. Simple things for someone who previously had no issues doing these things. Given Amanda’s condition from 2013/2014 she attributed this to “chemo brain”. (After cancer treatment, some people notice changes in their memory, concentration and the way they think hence the condition “chemo brain”.) This also developed into a migraine. She visited the GP – her practice is Trent Vale Health Centre, London Road, Stoke-on-Trent ST4 5NX. Amanda didn’t get to see her usual GP that day – the GP she did see advised her to keep the condition under review but that it was nothing to worry about and looked like migraine.

Monday 11th May
Again, while working, Amanda suffered the same symptoms as describe in the entry “28th April 2015” listed above. In addition, she experienced the sensation of feeling honey run from her eyes and seeing typed-out words fall off the computer screen on which she was working. She had a frustrating episode of pointing at a computer screen trying to say the same word over and over to a colleague without the word coming from her mouth. This was a disturbing development. Amanda came home from work early that day. I sensed something was not right. Her migraine persisted. We contacted the NHS 111 service via telephone at approx. 6.10pm-6.20pm (and were dealt with sympathetically and efficiently by the call handler). We were offered an appointment at the Staffordshire Doctors’ Urgent Care Ltd building on Campbell Road, Stoke-on-Trent at 7.10pm the same evening.

We attended this appointment, and we were fortunate to be seen by a GP who had visited Amanda at home when she was undergoing chemotherapy in February/March 2015. He was excellent, detected something was wrong and suggested either visiting the Emergency Unit at “University Hospitals of North Midlands” for an immediate scan. We visited the hospital at just before 8pm 11th May, were triaged at 8.20pm and were advised that there was a delay.

Tuesday 12th May
Amanda was seen around midnight in a private room. We believed the doctor she was seen by in the Emergency Unit was called “Napoleon”. He was excellent and we would like to record our appreciation to him. He administered a series of tests including sight and reflexes. His initial impressions were that Amanda was experiencing symptoms suggesting she may have experienced a mini-stroke, but he wanted Amanda to undergo a CT scan to get to the bottom of this. Amanda underwent her scan. A short while later, Napoleon returned to advise that there was a shadow on her brain, which was a cause for concern. The photo is attached below:

Whichever way you look at it, it’s not good and given Amanda’s recent 2014 experience with breast cancer, we were becoming increasingly concerned as an immediate reaction of seeing this that this could be due to the cancer spreading. Due to the pressures of space, we were asked to wait in a corridor while it was decided what would happen next. An assistant holding a booklet with ”Stroke” emblazoned across the front then took us into a storage cupboard to go through   nothing in particular. We’re unsure why exactly we were guided into this room (privacy maybe) but looking back, it was particularly insensitive and inappropriate. Amanda was then eventually provided with her own area (Bay B of the Emergency unit, bed 24) at around 2.30am. Other than regular blood pressure tests, there was no further developments until around midday. Amanda remained in that same area until she was eventually transferred over to Ward 121 at the same hospital, which we believe to be the Acute Medical Unit. There, it was explained to us Amanda would undergo a variety of scans, including an MRI scan to determine what exactly we were dealing with. Later in the afternoon, she was moved to Ward 122 (Short Stay Unit).

Wednesday 13th & Thursday 14th May
Series of scans took place. Of note at this stage that there was very little information provided to Amanda about when things would be happening.

Friday 15th May
Amanda was on her own when she was given the test results. The diagnosis is “High grade tumour in the brain, either primary or metastatic”. Amanda wasn’t asked if she wanted anyone else present at this stage. (They guy delivering the news later apologized for not offering this. He could not tell us anything further as the ongoing treatment of Amanda would now be elsewhere within the system). She was ultimately comforted by another patient when left alone with this news.

It was explained to us at this stage that Amanda would be discharged as there was nothing further that could be done until the treatment plan could be arranged and that we would be contacted about this. He advised Amanda not to drive and when Amanda asked about “Statement of Fitness for Work”, he advised that Amanda could self-certify for the first 10 days. So think about that. Amanda has found that she has a “high grade tumour in brain either Primary or Metastatic” and what we’re told is that Amanda can self certify for the first 10 days of absence!

We were discharged at 1.48pm.

The medisec reference number of the “Edischarded Authorised” document we were given was 3248215. This contains all the medical information about Amanda’s scan. The Discharge Consultant was M Edavaleth. The letter is signed Dr Sireesha Gonugunta.

We contacted our breast cancer nursing point of contact from 2014 as we were concerned and scared and also had no point of contact in the cancer team (this is because of current admission had been through the hospital Emergency unit, not via the cancer department) We did this because we wanted the Oncology department to be aware of what was happening. It transpires that Dr Brunt in the Oncology Department had requested we NOT be discharged but by the time someone was sent over to request this, we had already left. 

The contact, Julie Johnson, was very efficient and confirmed that although nothing would be done over the weekend, Amanda’s case would be dealt with on Wednesday by the multi-disciplinary team including Professor Brunt, Amanda’s oncologist (although she has only ever had one appointment with Professor Brunt). 

Monday 18th May
Having no other contact details for anyone at the hospital, Amanda contacted the breast care team on Monday morning at 9.20am to leave a message to enquire as to what would be happening next.

Amanda received a call from our contact in the breast cancer team, Lynne Scott, at 4.45pm. Her case, so we believed, was due to be discussed this coming Wednesday (20th May) by a multi-disciplinary team at the hospital. We were informed that due to a team "away day" this would no longer be discussed and would be put back by two weeks. At least.

The only suggestion that could be made by Lynne was for Amanda to ask for a GP referral to get back into “the system”. Now when Amanda was discharged from hospital on Friday, we were under the incorrect assumption that due to the medical reports mentioned above (Friday 15th May) that quite clearly stated "High grade tumour in brain", she would be placed directly "into the system" to be dealt with when in fact, this hadn't actually happened. So we were out of the system. Bearing in mind that during the delivery of Amanda’s news, little had been discussed about how quickly the tumour is growing so from our perspective, it could well be “life or death”, especially when you can clearly see the size of the shadow on the image detailed earlier in this submission. Amanda was utterly gob-smacked and explained to Lynne that it was impossible to comprehend that something of such incredible importance seemed to be treated so lightly. 

Amanda called her GP surgery (Trent Vale Medical Practice) at 5pm. We obviously needed to get Amanda back into “the system” as a result of what we’ve found earlier via the contact in breast care. Bearing in mind the breast care team aren’t responsible for this current case right now, it’s only by pure chance that we’ve stayed in contact with them that we have learned this information, otherwise it is likely that we would not have been contacted at all. The receptionist at the Medical Practice was not sympathetic at all (another story) advising that all appointments for the rest of the day and tomorrow were full. Please revert at this stage here to what is going through our minds – “life or death”. We actually drove to the Medical Practice and demanded to see Amanda’s usual GP. The receptionist advised that the message had been passed on, but was rude and insensitive, compounding an already challenging situation. It would certainly have not required any additional effort for her to be either polite or compassionate under the circumstances. We said we wanted to see the Doctor as it was a case of “Life or death” and went on to wait. 

We did actually get to see Dr Van Linden and explained the situation that we were having to come and pretty much beg for him to do a referral to get Amanda back into “the system”. On assessing the information we provided to him on what had happened and seeing what case notes there were on file, he said it was “preposterous” that this had happened and suggested that a “serious case review” would be required to investigate this further. He will speak to the hospital Tuesday 19th May and he hoped that someone would be in contact with us by 5pm Tuesday 19th May. Finally…as the NHS systems on which Dr Van Linden was checking hadn’t been fully updated, he actually did print of a “Statement of Fitness for Work” statement for Amanda. See the reason he has had to write at the top…”Headaches” 


So that brings you up to date.


We’re very frightened about Amanda’s position. She’s one of life’s organisers and needs a plan in place to deal with things. Unfortunately, the previous three pages detail shortcomings in the system, which have compounded the stress we’re currently experiencing many times over. We’re simply seeking any form of information as to treatment, prognosis and although the timeline above runs to just over a week which in isolation doesn’t sound a lot, we’re facing a situation where we feel we’re no closer to finding out any news, no one is seemingly taking responsibility for Amanda’s case and that we are “out of the system” too.

I look forward to hearing from you.

**Update Wednesday 20th May**

Consultant Oncologist Dr Brunt (who we dealt with last year) saw us earlier this morning. We have a lot of time for him. He wasn't able to tell us too much though, here's the main points

• We still don't know whether we're dealing with a primary or a secondary cancer on Amanda's brain. They need to operate to find out after which we'll know the prognosis.
• We'll now be passed onto the nureological team for them to supervise. - 
• They're all out at a team "away day" today
• The earliest this will be discussed is NEXT WEDNESDAY (27th May).
• The current medication that Amanda is on (to keep the swelling in check) means that a few days wait until next Wednesday will not make much difference.

We've also received contact from the local Patient Advice and Liaison Service who have filtered out to the relevant departments what we have submitted the above document.

Insane in the membrane. Our new cancer battle.

In black or white, it doesn't make for good reading

It's Dean here, husband of Amanda.

We have some updates.

Firstly, it's best to visit this link to bring you up to speed with events that have been happening this week: http://www.twitlonger.com/show/n_1sm6t8p

We've received the results today. I say "we", Amanda was spoken to on her own without asking if she wanted anyone (including myself) present.

It's here in black and white on a letter in front of me.

"High grade tumour in brain in either primary or metastatic"

Many things swimming through our minds right now (that is, what space there is for things to swim around in Amanda's brain given the 38x31x35 "intraparenchymal hyperdense" mass that's currently burrowed in there. See the photo at the bottom of this blog to see the ******* Amanda is now dealing with).

The worst thing today? (apart from the haphazard delivery of the news) was when Amanda's dad arrived. They've been through a lot throughout both their lives - that's another story for another blog sometime - but to see a man of his stature painfully reduced to a quivering wreck as Amanda told him the news will stay with me...and haunt me...for the rest of my days.

So what next?

Amanda was actually in hospital for something like 80+ hours and ironically was discharged from hospital after receiving the news. There's not a lot that can be done until the multi-disciplinary team in the neurosurgical department meet up and discuss the next stage. The doctor who delivered the news today said that the tumour was treatable...is he shielding us from what's around the corner? Watch this space. Anyway, we're likely to find out midweek how soon we can get this removed and deal with what is thrown in our direction next.

I've resurrected my "Wife updates" on Facebook, which I thought I'd put to bed last year when Amanda finished her radiotherapy post breast cancer. You can how I've been dealing with it here:
12th May (post 1) : https://goo.gl/nPXihv
12th May (post 2) https://goo.gl/mOu9Bl
13th May: https://goo.gl/UngAVs
14th May: https://goo.gl/MZl0YQ
15th May (post 1) https://goo.gl/ZddgXy
15th May (post 2) https://goo.gl/I8dQkZ

I may scribe some more ramblings soon.


Thanks for reading.

The CT scan taken in the early hours of 12th May 2015

My dear friend Amanda, there are no words to be said after hearing this latest development in the saga of Amanda and Deb. To say that I am devastated is an understatement. 

Never before have I questioned why? 

Never before did I feel angry at being diagnosed with breast cancer. I never asked why because why not? This time I feel very angry, this time I'm asking a big fat why? Have you not been through enough the last few years? Why you? 

We  were brought together through breast cancer, we will not be torn apart by this latest little b*****d!! 

We both have friends and family that have supported us throughout our diagnosis and treatment and I'm sure you love and care for yours as much as I do mine but you and I are something different. We've been there for each other through the darkest days, we've been at the other end of the phone when we've had our fears about the future, we've been there for each other in a way that nobody else can possibly understand. We just 'get each other'. I know your fears and you know mine.

I've shed bucket loads of tears since your recent diagnosis and as Dean said, seeing your dad a broken man has torn at my already torn heartstrings. In Amanda's dad's words, 'he simply can not live without his daughter'. Amanda's dad reminds me so much of my dad, the love he has in his eyes when he looks at her, the sheer adoration he has of his remaining daughter is quite evident to see. I miss my own dad every single day but I've said that in a way I'm glad he wasn't here to see me go through breast cancer. 

Amanda, we are going to take the positives from what you've been told and I know you will face this latest pile of s**t with the same courage and determination that you did before.

It's so unfair that you have got to go through this again but you know that you will always have my support and help every step of the way  because after all, nodody else 'gets it'.

Debbie

Returning to a new 'normal'

Life after breast cancer means returning to some familiar things and also making some new choices. 

The song says "It ain't over 'til it's over," but when you've had breast cancer, you discover that it's not even over when it's over.

After a marathon of breast cancer diagnosis and treatment that may last six months to a year, you can hardly wait to get back to a normal life again (what is normal?)

But the day of your last  treatment or chemotherapy infusion doesn't mark the end of your journey with breast cancer. Friends and family may expect you to get back to 'normal' now that your treatment is over.

Instead, you're about to embark on another leg of the trip. This one is all about adjusting to life as a breast cancer survivor. In many ways, it will be a lot like the life you had before, but in other ways, it will be very different. This is now your "new normal."

Everything changes,from your relationships with your family and your spouse/partner to eating habits and exercise. It will change your life in ways that last well after treatment ends. How do you fight lingering fatigue?

What should you eat to help prevent a recurrence? 

These are just a few of the questions that may nag at you as you make the transition from treatment to a survivor.

Almost 11 mths post chemo, my hair has really started to grow back. It's curly where it once was straight but it's hair. I have eyebrows and eyelashes again. So why am I still so tired? When will I really feel like me again?

You've been hit while you're down so many times: with surgery and anesthesia, perhaps with multiple cycles of chemotherapy, perhaps with radiation, ever likely it takes a long time to fully recover.

Luckily, I've done a lot of research and found that my constant forgetfulness, lack of concentration and general tiredness are all classic symptoms of someone who has had chemotherapy. How long the symptoms are going to last is anyone's guess or is this my 'new normal'.




Debbie

The C-word and a weekend of loss

I was saddened this weekend to hear about yet another young woman who has been lost to cancer, Rebecca Ellison, wife of Premiership footballer, Rio Ferdinand. In the same weekend, we were treated to the incredibly powerful documentary, The C-Word, inspired by talented blogger Lisa Lynch. I toyed with the idea of not watching it, but felt that quite frankly, I owe it to Lisa, and others like her who have used their not inconsiderable talent (that means you, Kate Gross, with your breaktakingly beautiful book, Late Fragments) to educate the world about this hideous disease. What The C-Word managed to do was to bring to life the real horrors of breast cancer. I loved it for its real, unsanitised truthfulness that accurately and gut-wrenchingly represented my experience last year. The physical rigour of having to endure forty-eight hours of violent vomiting; the unrelenting, agonising migraines; the diarrhea; constipation; loss of appetite; burning piles; thrush; a throat so dry and painful it keeps you awake at night; bloating; weight gain; joint pain that makes you cry out; feet so sore you can't even put them on a cushion; elephant-like ankles and crushing exhaustion that makes even going to the bathroom an insurmountable challenge. Then there's the loss of identity, of your hair (and no, I didn't want to try a new hairstyle, I loved my hair and I would love it back), my scar-free body, my eyelashes, my confidence, my strength, my belief in the fairness of the world and my hopes of growing old with my husband. There's the gripping fear that even though this chapter is tentatively closed, with my recurrence odds, there's a one in three chance that like Rebecca, Lisa and Kate, I may not make it. (And the horrible realisation that when the odds for something are 'one in three', people are really excited for you as these are "really good odds").

I feel that we should all watch The C-Word and read Late Fragments. If you've not been through it, but know someone who has, then watch it and tell them that you feel for them and know that what they went through is not easily forgotten. If you've never been through it, then watch it and be giddily grateful that it's them and not you. Either way, we owe it to these brilliant young women to share their legacy. Hopefully a legacy that will result in more women being aware that this is not a disease for old people, for smokers or for heavy drinkers. It's a disease that can affect any of us at any time, and only by being vigilant, can we prevent it claiming any more of us.

Amanda  

I also watched 'The C Word' but a few days after it was aired on tv. On my own.
The last thing Lisa Lynch had expected to put on her ‘things to do before you’re 30’ list was beating breast cancer, but them’s the breaks (her words). So with her life now on hold, and her mind close to capacity with unspoken fears, questions and emotions, she decided to start blogging about the frustrating, life-altering, sheer pain-in-the-arse inconvenience of getting breast cancer at 28.
It's an unflinchingly honest and darkly humorous account of Lisa’s battle with The Bullshit, as she came to call it. From the good days when she could almost pretend it wasn’t happening, to the bad days, when she couldn’t bear to wake up, Lisa’s story is emotional, heartbreaking and often hilarious. 
I pretty much cried all the way through it, on and off, when she was first diagnosed, when her parents were crying and at many other points during the showing of this brilliant portrayal of women like me. It was also very real life for me because she had the same breast involved as me and we both had the same operation (mastectomy & reconstruction).
I have secretly kind of hoped that my friends and family watched this and hopefully have a better understanding of what we actually go through. 
It was also strange watching this and feeling everything that Lisa felt because sometimes it still doesn't seem real and feels like it happened to someone else and not me. 
I was so impressed with 'The C Word' that i've told my husband that he has now got to watch it on his own too.

Debbie