Letter from the North

Found the missing pennies, poo flowing like water, a lack of taste – 10-Feb-2018

This is not going to be a complete blog, I was so poorly that I wrote nothing for days and can only barely remember what happened, I will do my best.

Worse, it’s not going to have Teresa’s editing pass over it, she is mega busy decorating and I just cannot ask her to spend time on editing for me (much as I need it), so here we go, ….

Where is that Penny – Sat 10-Feb

A really bad night, back pain, stress, diarrhea, pain, uncomfortable.

Another diarrhea pill, popping them like sweeties, so no poo reports

We needed to go to Sainsburys, so I dragged myself out but I had to give up part way through and go sit for 15 mins while Teresa finished the shopping, I hate being so exhausted, hence considering the Electric Wheelchair

[Editor’s note: even now the penny hadn’t fully dropped!]

Back home, collapsed,

Tried chicken fillets with leak and cheese sauce. Load of tasteless cardboard. Forced myself to eat it but really!

4:30pm taken more anti- diarrhea pills and yet the bottom alarm went off and off I dashed. Yup, no time to hang around. Now the daily procedure is done I have taken another pill and hope all will be quiet for the night!

The penny drops at last, Sun 11-Feb

Still having a really rough time and decided to look into whether stopping taking Tramadol might be connected. Here’s what I posted to FB, apologies if you’ve already seen this

Did you know about Tramadol withdrawal symptoms. Even at my dosage (300mg a day) and time on it (2-3 months). It’s no fun. Opiod and antidepressant withdrawal in one package. I asked the GP if it was addictive – he said much less than ordinary opiods. If you google it that’s not the case and it certainly explains the hell I am going through at the moment:

Here’s a selection:

  • Insomnia – Oh Yes
  • Anxiety – Yup
  • Pain (muscle aches) – hard to tell most things already hurt!
  • Nausea – YES
  • Tremors – yes
  • Diarrhea – YES in literal buckets!
  • Cold or flu-like upper respiratory symptoms – somewhat
  • Sweating – Yes
  • Piloerection (hair on skin standing on end) – no
  • Restless leg syndrome – yes
  • Agitation – oh yes
  • Abdominal cramping – mildly
  • Yawning – YES
  • Depression – YES
  • Dizziness – yes
  • Mood swings – yes
  • Fatigue – YES, YES, YES

I’m going through virtually all of these and the bastard is, a lot of them are ALSO side effects of the Pazopanib, double whammy time. Hard to tell whether the Paz or Tramadol withdrawal is the cause (often both I suspect)

I came down from 300mg a day to 0mg over a period of two weeks. The withdrawal only really hit me once I reached zero.

I am sorry Teresa, the hell is going to last for a few weeks yet – BUT I am still going to that Lanyon exhibition no matter what!

p.s. what must it be like for longer and higher doses – HARD!!!

——————————-

[Editor’s note: NOW the penny has dropped in massive sack loads]

Right now the nausea is really bad, already had my ritual; retching at 11am. I can’t face eating anything. Yesterday Teresa made me a cheese omelette and that was OK. For lunch today, it will be much the same as I can’t imagine anything else. I hope this is a withdrawal problem and the nausea goes back to what it was a week ago, horrible but manageable. Right now I feel so awful I cannot describe!

Not getting any work done, not getting anything done, I’m just an empty shell 🙁

Mon 12th

Down in the depths of misery

Tue 13th

Down in the depths of misery but signs of light at the end of the tunnel

Wed 14th

Off to Treliske for the scan results, this did not go well, I did an interim Blog on this on Thursday 15th, so no need to repeat it, suffice to say, after all that withdrawal we would have liked some good news, we didn’t get any.

Whilst at Treliske, Teresa wanted to visit “The Cove“, I really couldn’t be bothered, but I have to accept, that if Teresa wants help or support from anywhere I need to support her, so, we went. A fantastic oasis, steps from the Oncology unit (Sunrise Centre), lovely people, lots of information.

RANT

I (we) are truly pissed off with the fact that at our first visit to the Oncology unit, being told I had terminal cancer, NOBODY suggested we pop along to the Cove. They have so much information, are so warm and friendly, they had time to talk.

There was really no excuse for not doing that and I will complain to our “team” that they didn’t do this. Add that to how they behaved at my scan results today and we are starting to wonder what is going on in this Oncology unit and whether they are “fit for purpose”.

I hate saying this, I have a lot of time for the NHS and I understand how totally overloaded they are, but all it took was ONE SENTENCE and we would have been massively better off in terms of understanding.

RANT OFF – but not, because I am still pissed off, they actually have the resources, freely available and did not bother to tell us that they even existed!

Have I turned the withdrawal corner? Thu 14th

Well, I feel almost human, had a double dose of readybrek, well almost. Managed 2 mugs of tea (well almost). Feeling as close to human as I get.

Poo department is screwed up, the diarrhea seems to be quiet (last time and pill was yesterday morning), but there are no signs of any production. Probably because I’ve barely eaten since last Friday. But, even so, I do so hope we are not now back on laxatives to kick start it back to normal.

Keeping fluid intake up and hope nature will take its natural course without going wild again!

So, I feel better and I know that lifts Teresa. She is busy decorating our bathroom. Teresa loves decorating and it’s just nice to see her motivated and getting on. Just now she came into my office absolutely bubbling over with how wonderful these new sugar soap cloths that she got from Homebase yesterday are. It was so lovely seeing her happy, smiling face, especially after yesterday. Things may look grim, but that’s not a good enough reason to not be happy! Is it?

Poo time

Tramadol withdrawal on top of Pazopanib (whether it’s doing me any good or not) was buckets of diarrhea. Not being able to eat for days resulted in a very empty body. I never totally stopped eating and I tried to drink a minimum, but, …

Yesterday (Wednesday) I took the last diarrhea tablet, since then I’ve eaten pretty OK, but I didn’t drink much yesterday. So, I wondered if I was going to need a laxative to kick start my system.

Well, half an hour ago my body declared it might have some ideas in that direction and would I please attend the loo.

A hell of a lot of wind and I thought that’s it, but no, it still had aspirations but was now feeling like full on constipation. Well I thought I can do some Senna tonight, but no, it wanted out, so I took my time. In the end felt like passing a rough-hewed rock, but once gone, the rest was normal. Ok I thought, going to be some bleeding, hopefully not much (there was and no it wasn’t much) and hopefully my body has now re-established normal bowel processes.

[Editors Note, really Bean, just how naive are you, this is bottom stuff, much more fun to explore yet, …]

It’s gurgling away at the moment as if to say, well, now that’s cleared out of the way, there’s so much more I can do and I’m hoping there isn’t a flip from bunged to free flowing. From past experience, best to try and let it find its own equilibrium over a couple of days and avoid any drugs to aid it.

Hey ho, the joys of poo, they are always with you ????

Lethal Farts

Too soon, all that gurgling led to the terror of Lethal Farts, when my bottom has got to go, especially if “loose” (as people put it, oh so politely), I pass wind (fart). Now I have always been a farter, but usually they are quiet and not very deadly unlike my cat Jane, phew!

NOW, oh no, I rattle the windows and the smell, cuts straight through any gas mask, the cats run and hide, it is awful.

I apologise, well I couldn’t hide being guilty if I wanted to and that’s not in my nature anyway, I take responsibility. I just issue Defcon ONE warnings to Teresa.

They are awful, if I am ever in your presence and get “hit”, my apologies, I will admit “up front” but don’t feel embarrassed to challenge me, if you manage to not pass out first. Loud and Deadly, oh well, REALLY feel sorry for Teresa she shares it every day!

We are sharing a sleeper to and from London in a few weeks for me to see Peter Lanyon’s Centenary exhibition, the sleeper is a very small enclosed space and we are in it for 8 hours or so, she may not survive the journey if my bottom decides to be upset!

Sleeper tickets – Fri 16-Feb

When we went to the Cove on Wednesday Teresa made an appointment to see the Nutritionist to see if there was anything we were missing on my nausea and taste problems.

We had our appointment and discussion. Basically, we had got the right ideas, but we hadn’t understood that “dry mouth” and “no taste” were so closely linked, they are separate, some tastes are gone, but others disappear because there is just no saliver. So, lots of sauces, wet food, “acid” based tastes to help stimulate things.

From the Cove we went to Homebase for Teresa to get more stuff then onto Sainsburys Penzance to do some shopping. I didn’t stir from the car for either, just too exhausted. We then called into Penzance station to book our sleeper tickets for the Lanyon exhibition, staff very helpful and found the cheapest way of doing it (but not at all cheep). Really looking forward to going though I expect I am going to suffer all the way up, there, back and for the following couple of days. Still, it really is, for me, a once in a lifetime’s opportunity and not one I am going to miss!

Bottom department much the same as yesterday. Slow but fine then woooosh! On the upside the farts are less lethal though just as long and noisy!

Postscript

This week started off in the hell of Tramadol withdrawal, it is amazing how many people say “yes it’s an awful drug and withdrawal is terrible” and yet TOTAL silence from the medical profession on prescribing it and even more silence when they know you are coming off it.

It continued to get better until the scan results. The results themselves were not great but how the “renal cancer” team handled that session was appalling and left us feeling that we were NOT getting the best treatment for this cancer.

The weekend finished with me feeling a lot better physically, but Teresa and I very down over how my treatment is being managed by the Oncology Unit and realising we were going to have to raise this (firmly) with the consultant, not something we want to do, but feel we have no choice and that pisses us off.

The days of “paternalistic” medicine (Doctor knows best) are supposed to be long gone in these days of “Person Centred Care”, apparently, it’s not and that is distressing. Fingers crossed the letter we are writing to the consultant has good results, but we aren’t holding our breath.

The Bean, Pendeen, Fri 22-Apr-2018

 

5 Comments

  • Kate Mole

    Dear Bean,
    This is all very distressing. I think you need to talk to someone about it all – now you have found The Cove, hopefully they will be helpful about this and find you the right person to address your concerns. You need more information, about the drugs you are taking and their effects and side-effects, and the information needs to be put to you in a suitable way – I know this is not always easy, and I found the same problem. But it needs to be pursued, so that you can understand precisely what your own individual case is likely to present you with, and how best to deal with it. The oncologist hasn’t got time, I suppose, to enter into a long session of this with you (I had an individual nurse who was good about all this). It does take time, and of course that’s what the NHS hasn’t got. I hope you can progress with this. I am sorry if all this seems like stating the Blindingly Obvious. But it has seemed to me, more and more, that in this whole cancer business, information is hugely important – especially the sort of information that is tailored specifically to you – and it isn’t always easy to get.
    Love,
    Kate.

    • Bean

      Hi Kate.

      It is distressing. The Cove is Macmillan and so “independent” of the Oncology unit, now we know they are there, they are useful for understanding, however they are not an interface into the Oncology unit. We do have a “nursing” team we can talk to but that is only about the what not the why and also you need to know the questions to ask (that can be where the Macmillan’s can help).

      We are STILL waiting to hear back from the Oncologist after writing to him a week ago, however we have to go to Treliske on Thursday to see the fracture clinic about my Collar Bone break and will call into the PALS office since Patient Liaison is their purpose and see if they can’t unblock things.

      At the moment our biggest problem is not being able to

      1) Understand WHY the Oncologist makes the decisions he does
      2) Influence his decision – he can decide I can’t handle a treatment option even though we are sure that I can, hence we potentially miss a better treatment because he made a decision without us instead of with us.

      This is what we find unacceptable – we want the BEST treatment I can cope with, not the best he is willing to offer without engaging with us. Being over 60 he is potentially making age based generalizations about me that are inappropriate/wrong.

      Bean

  • Kate Mole

    Dear Bean,
    Yes, I can see what the problem is. I don’t know how to get the answer, of course. In my (much less serious) case, I had to piece all the information together, from a variety of sources, including a friend of mine who used to work in a hospital and was able to research the drugs and their properties for me so that I could ask the oncologist the right questions. It was all a huge jigsaw puzzle….. but I got there in the end. There may not be any one definitive answer. But it is so important for you to have a conversation with someone about it – to find out the facts and to be able to place your confidence in your doctors. I can’t say more than Good Luck with it!
    Kate.

    • Bean

      Thank you Kate. We are going to push to get a response from the Consultant. However we also found out from our GP (and from one of the Cancer nurses when we said to her that we never get to see him) – if you ask at “check-in” they will put a mark on your file and the Consultant will see you, but you may need to wait longer! How we we to know that!!!

      Bean

      • Kate Mole

        Hmm. That’s part of what I meant by piecing it together’…… !!

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