Perhaps that should be what a year. It all started back in May when my bike was stolen. A week later, Mrs L was diagnosed with terminal bowel cancer. She had been experiencing abdominal pain from about a year ago. Treatment with antibiotics seemed to have an effect and it was looking increasingly like ulcerative colitis. Then that week, I had to take her into the out of hours GP with severe pain and they got her into the hospital whence the final diagnosis was made.
It is here that I found myself up close and personal with the NHS machinery and to say that I have been underwhelmed would be an understatement. Firstly, they prevaricate and avoid direct answers. Upon diagnosis we were told that they had discovered a blockage and were “concerned”. What they meant was, she had stage four cancer and had months to live. They told us that with treatment, she could expect two to three years. What she got was nine months. I challenged the hospice nurse over this and she replied that these prognoses were based upon averages and therefore they cannot say for certain because they simply do not know. My response to that was why didn’t they just say that back in May. Had they been brutally honest, I would have cleared my diary – even more than I already had – and we would have gone on the trip to Ireland she wanted to make. As it was, we decided to wait until after the chemotherapy. Well, that went well, didn’t it? Even during our last trip to Oncology, the oncologist was dancing around the matter – even suggesting that if she picked up a bit, they might resume treatment. The reality was, she had a matter of weeks left and it was obvious to everyone in the room, so why not tell the truth? Indeed, we were aware fairly early on in the treatment that the prognosis was way off and she made plans accordingly.
The funeral is going to be just short of six grand. As she was sixty last November, she decided to take out the maximum lump sum from her pension so that her death wouldn’t leave me financially destitute. So that’s it. She spent a lifetime paying in and in the end, it is to pay for her funeral and she will never enjoy a retirement. Bitter? Damned right I am. The bloody NHS were even talking about us having to pay for care at one point. We’ve spent a lifetime being robbed blind by the state and then they wanted to take away her nest egg. Yes, I am very bitter and my loathing for the state and its apparatus has magnified during this experience. That said, most of the individuals we dealt with were fine. Especially the Hospice and district nurses.
Then two days after her death, while I am in the middle of trying to sort out the bureaucracy that goes with a death, I got an urgent message from my oldest sister telling me that my mother was declining rapidly. I picked up my younger sister and we dashed down the M5. We didn’t make it.
She died half an hour before we arrived. And, because she died in A&E, there has to be a coroner’s report, so my father can’t do anything yet about the stuff I’ve been dealing with because he has to wait for the medical certificate. So the two of us are wading through the aftermath of huge loss. I’m planning on the two of us getting away on the bikes as soon as we see some decent weather. The TT has already been booked and planned, but he wants to see a photographic exhibition in Luxembourg, so we’ll take the bikes and go. Friends and colleagues have been great and one or two have expressed concerns that I might do something stupid. I won’t. Dad and I are survivors. We will grieve but we won’t be doing anything daft. Who will feed the cats, after all? And Mrs L would be furious. Even as I was losing her she told me that I have so much to live for. It’s just that at the moment, it doesn’t feel that way.
What a shitty, shitty week. Then it fucking snowed.
A big manly hug from me.
Don’t really know what to say.
All I can say is you have our condolences and we are thinking of you at this time.
Good luck and best wishes.
I can’t add anything more meaningful than Lord T’s comment, so I’ll just endorse it.
Life is cruel my friend, but for you this week it has been especially cruel, and just when you thought it couldn’t get any worse, it did, and then it fucking snowed. I can understand your frustration with, and hatred of the State – we’ve all been there. They manage to make even the KGB look humane sometimes.
I can only echo what The Jannie said – a big manly hug from me too.
My contact with the NHS has been a little more positive but then I have not been so seriously ill, I have type 2 diabetes and have recently had a mild heart problem. The medical staff that I have come into contact with while having ECG tests and various scans have been excellent and very professional. My main gripe is the slow motion way that the NHS machine operates. I first went to the Doctor very early in the New Year, almost two months later I have just had an ultrasound scan and treadmill test. I’m now waiting to see the cardiologist to discuss the results and I’m really not holding my breath.
I am currently awaiting my three month follow up for my prostate problems. That was last May…
I salute you from Denmark. To think that I have it tough. Just visited my mum in Arizona, she’s 84, and in spite of recent knee surgery, she’s got the energy and drive of a tornado – she wore us plum out. I sure hope your bike tour goes well. Take care
As usual, there are no words that won’t sound trite. I will say a prayer regardless.
But don’t you know it is the envy of the world?
So why is no one emulating it? No one can ever answer that question.
Because sadly, there is much better elswhere. I can’t say anything more than has been written here but as I have said if you want to travel south…………..
Sadly, that is precisely what Cyprus is planning to do…
Now I know the cancer location I can comment. Had it in 2008.
Doubtless you’ll know the bowel’s a big place and the location of the tumour is vital. Mine was 90cms up and the tumour had blocked my tubes. Was the gas build up (trapped farts) that would have killed me. And yes the pain was indescribable.
I’m going to go out on a limb here and assume your wife’s tumour was much closer to the anus. Those are hellish difficult for your average GP to detect. Add to that the fact that few of us want to talk about issues connected with our bowels. Also the symptoms are very similar to Irritable Bowel Syndrome.
Knew a lady who had exactly that. It was so advanced they didn’t bother removing the tumour. She spent the final years of her life with a colostomy bag.
I had to go thrice to my medical centre before they sussed out that my having to vomit diluted faeces – made all he more remarkable by the fact I was only living on liquids – prior to attempting sleep was not a good thing.
In my case it was an emergency admission. CT the following day, operation the day after. It was classed between two and three; the tumour had cracked, there was localised blood but it had not split and the blood had not gravitated to surrounding organs nor my lymph glands.
My surgeon said I had less than 24 hours to live. Likened it to wrestling and anaconda. I told him straight, 24 was way too optimistic, more like 6 to 12 IMO. He didn’t argue.
I have great sympathy with oncologists. They see people every half hour with a variety of cancers – and telling people they’re going to die is very, very stressful. Equally they do come across people who defy the odds and live on for years.
The last thing they want is to be pinned down, to have someone with a recording of the conversation – and worst of all have someone sell their story to the tabloids.
I’m with you on everything you say. My main beef were the people on “job share” – they were the most vague. And the fact I seldom saw the same person twice.
Respect for you sharing this with us. No point in doing something stupid.
1) You’ve got royalties to collect on your books.
2) Trick Dick’d be ecstatic.
I have some sympathy with oncologists. They are constantly dealing with dying people. However, unlike their patients they have chosen to be there. All we wanted was some frank honesty. And if “I don’t know” is the answer, well, tell us that. I can understand.
From what I could gather, the tumour was where the colon bends on the left side.
None of us are getting out of this hotel alive, and you seem to be handling it better than most. Good for you.
Being a rider, and if you’ve got the money, you might think of:
https://www.youtube.com/watch?v=qXctJutz80A – Not my tour but I went with Juergen, the guide, to many of those places 4 weeks ago.
I’ve convinced him to go to Mazatlan for the 2019 version of https://www.youtube.com/watch?v=L-W5wSpLq-Q. I was last there 10 years ago and I’m dragging my 65 year old corpse-body for one last trip.
Cheers, best wishes, I’ll buy you a Pacifico if you show up.
I feel your pain mr L. I lost my Mum to the NHS late last year, after they had promised that Mum would be coming home on a Friday (this was Monday) they put her on ‘do not resuscitate, nill by mouth’, on the Wednesday. It took 8 days for her to die, slowly dehydrating and starving; painful to watch, and feeling helpless.
Couldn’t fault the ward staff at all, they were wonderful.
I blame the bean counters in management; after researching QALY’s, Quality adjusted life years, it seems that if you run-out of credit then they give up on you, awarding you a ‘0’ rating -dead- such that they will ignore their own guidelines, from NICE, regarding Dying with Dignity, until they have the desired result.
My thoughts are with you.
My old dad used to say that ‘things improve when the funeral gets out of the way’.
Sounds harsh, and in your case with two to deal with, nobody deserves that sort of grief.
But of course, you will soldier on, won’t you!
Keep going young man!
My daughter is a superintendent radiotherapist with MacMillan. She outlines the treatment plan after the diagnosis is delivered.
Often its best guesses and constantly changes as treatment progresses so while I understand your feelings it’s often not that straightforward.
Doesn’t make it any easier for you tho’…
And that was all they needed to say. Not give us a misleading best guess.
Good grief Mr L That’s awful. I’m so sorry.
Hang in there.
What the others said.