Friday 7 October 2016

When the chronically ill wish they had cancer

Yes, That Heading Really is a Thing
I often hear people with chronic illness comment on how they almost wish they had cancer, so they could receive some real medical care and at least a doctor would take them seriously. It's usually more so the chronic illnesses that there is no actual, specific testing for (like fibro, ME, and so on) and so sufferers are made feel like they are making it up or that no one cares. They don't mean this statement in badness, and maybe I just understand it better from both sides as I, well, have lived it from both sides. Sure there are tests and assessments for dysautonomia/ POTS, joint hyper-mobility/ EDS and hip dysplasia, and the related issues that I have, but it is a fact that society as a whole cares far more about cancers than any other diseases. I'm not taking away from that, that's not a bad thing. Cancer can be deadly, after all. Some forms are even preventable, everyone knows someone who has had cancer or passed from cancer, it has so many forms and truly is an epidemic of great proportions. So naturally enough it is high profiled -and so it should be.

But to those who suffer from chronic illness and other diseases:
I get the frustration of being told -
"There is nothing I can do",
"I'm not qualified for your case",
"I'm sorry, I can't help you",
"Have you tried paracetamol?",
"You're wonky, you should be in pain"

I get it, more than most people.

And so when I was diagnosed with cancer, sent to specialists who were able to help me, had a team of people looking after my care and side effects, I was honestly elated beyond belief. I remember during chemotherapy getting a really bad rash on my hands, very raw and dry. Pretty normal with chemotherapy. When the nurse saw it during one of my sessions she said "why didn't you tell me??" and gave me some cream to soothe it. I was stunned. Why hadn't I told her? I realised I wasn't used to being unwell and someone being able to help me... That just hadn't happened before. Over the years I had stopped telling doctors things, partly from the trauma of my youth. Being told, "crying won't make you in any less pain", and so on. It made me stop talking about it, especially to doctors. I was so happy by this minor gesture, that I wanted to cry and felt overcome. It was a simple thing but a huge realistion. My whole treatment was like this. I received the best of care and help with all side effects and issues.

I breezed through chemotherapy and radiotherapy with a happy attitude (my chances of survival were high, so that helped). It was often even a joke with my radiologist -she laughed at me in appointments saying I was her easiest patient to date. Never complained, never had issues I couldn't handle. The chemotherapy nurses thought I was great too, and I used to laugh with my hematologist who also seemed a bit stunned by my upbeat attitude and eagerness for any treatment they suggested. Do chemotherapy and radiotherapy have side effects? Yep. But only the healthy are so privileged to be stupid about treatment that is life saving. I was simply elated to receive medical care for something -the fact that it was cancer should have brought me down, but I was honestly really happy.

That's not right. Someones general medical care shouldn't be so bad that having cancer was almost a relief. In hindsight I realise how horrible that sounds, but I just truly appreciated having regular doctors and ones that could help me.

So to everyone out there who has posted a meme in many of the chronic illness groups that I'm in, about how you almost wish you had cancer instead of the illness you do have -I get it. You are, obviously, in TOTALLY bad taste, lol, and you should reeeeeally know this. But I get it. I also get bad taste though, in fairness.

Oh boo-fucking-hoo.

In "Remission"
Once you get those good results, the ones you should be happy to get of course, there is a massive slump. A gaping hole which was once filled with regular appointments, assessments, tests and people caring about you. If you have any friends left at this stage (you are super depressing to be around when you have cancer, it's just human nature, no grudges) they won't understand.

You should be happy. But the reality is there is no "going back to normal" after cancer. You aren't actually in "remission", they won't say that word until the magic 5 year survival time, you're just "cancer free". Everything has changed, you have changed -you may not have any idea who you even are. Even your thought processes and views on the world may have changed, and not always in the hippy-dippy, happy-sappy kind of way of appreciating every day, that many associate with cancer patients. I've spoken about this in posts before, but I have been previously asked things like: "did cancer make you appreciate life more?", or "did you realise what you wanted to do with your life and just go for it?" -well, no. I was very happy with my life when I was diagnosed with Hodgkin's lymphoma is 2013. I was unwell with my joints but on my way to finishing my degree (I knew my body was becoming increasingly worse and so I would hopefully finish my degree just in time), I was living with Bicky and our lovely animals and volunteering when I could. In a lot of pain but managing, and planning for the future. Having cancer simply took a year out of my life and halted everything, including college. I appreciated life just plenty before having cancer -I felt incredibly lucky, every single day. I had to take time out from other appointments -I was on a mission to get fully diagnosed with ailments I had since childhood (Ehlers-Danlos syndrome), but naturally enough I came off waiting lists while dealing with the Hodgkin's lymphoma. Cancer did not help me one bit in this way.

Even without the added crap of being sick with other illnesses and going back to receiving zero care, most suffer from a tremendous, overpowering feeling of fear when finishing treatment. Torn by guilt for not feeling grateful, consumed by survivors guilt, and simply feeling lost and bewildered -But everyone is different. I've said it before and I'll say it again, I can not do this subject the full justice it deserves. The after feeling is one so individual to everyone that it's indescribable, even to other ex cancer patients.

Cancer After Care, or Lack Thereof

You're promised aftercare -but then two consultants diminish to one, then that consultant diminishes to zero, and you're seeing some temp for five minutes who doesn't specialise in cancer and is only at your hospital for the day. No lovely chemo nurses, or social worker, or anyone who even knows your case. So please, to all those who wish they had cancer instead of whatever you do have -remember this. Nothing lasts forever. You either die, or get better and are back to receiving very little healthcare. Just remember that next time you wish to share a related meme.

As you all probably know, since finishing cancer treatments I have regular hematology appointments. Right now I have them every 6 months. They do bloods, check for physical, noticeable swollen nodes and ask me some questions. The point of these is too access how I'm generally doing -with treatment side effects and to tell if the cancer is ever making a come back of course. Unfortunately at this stage I never, ever see my old hematologist -the lovely guy I dealt with when I had cancer. I actually never see any one regular doctor. Drogheda hospital is built up of temporary positions, in most departments, as I'm sure locals will all know too well. This has led to no accountability in specialists actions. A result of budget cut measures, and the norm in many hospitals around the country. Apparently it actually costs more money than having regular, long-term employees on the books, but how and ever -It's not the Lourdes hospital's fault at all, or the staff employed there.

So with that is mind, I see a different person each time (similar to the disaster of the days when I visited neuros in Beaumont) who never have previous notes about me, or who simply do not have time to read them in between cases. Over worked, probably underpaid, and they'll be in a different hospital soon enough anyway. For those that do not know, hematology covers all blood disorders, so the young temps that I see don't necessarily know anything about cancer, or have any experience with Hodgkin lymphoma.

When I've brought up issues before they either ignore me, mumble, or say "oh yeah that's normal after cancer". There are a whole list of common side effects, including the breathing issues that I currently have. We just joke that at least I gave up smoking (I can't physically inhale enough to smoke, so gave up with absolutely no will power necessary) and they offer me no support what-so-ever. I think it's just a touch of asthma, and I use Bicky's inhaler which really helps -I know, I know. I should tell my GP that I'm still having issues, but I rarely see my GP and I hate having new complaints -I'm going to do a further health up-date on that in couple of days.

A very, very, VERY common side effect of having radiotherapy to your neck is developing an under-active thyroid. It's really not a huge deal -a simple blood test shows it and you go on meds. Now, as I'm traveling to a HEMATOLOGIST every 6 months to have BLOODS taken for CANCER related stuff, one would assume they are checking my thyroid -it being so very common to develop after treatment. And I assumed this. My bloods are like the only after care I am receiving from having cancer, so I'm sure they are on top of that at least. When my fatigue built up to the level of passing out and Bicky brought me to Beaumont A&E, I'm pretty sure the first bloods they did were thyroid and they were ok back then (I think they checked them, I'm honestly not sue, but 90% sure). But I've been to my cancer appointments since, and told them about my extreme fatigue (which can be a sign of thyroid issues) and assumed they tested for it.

Even when the nurse at my GP office rang me and asked me to come is as I needed my thyroid checked every six months, I told her, "I'm sure Drogheda are checking it". She sounded unconvinced, but simply said "Oh yeah, maybe... I would just like my own records". So I got them done, and promised to pop in again in 6 months... well that was over a year ago. Bad me! And bad me for not asking any of the temps if they were ever keeping an eye on it in the Lourdes. I recently had one of my amazing hematology appointments and when I mentioned my fatigue, the lady who was temp of the day seemed pretty concerned. She was like "why didn't you ring us?" -I was stumped. For what?? I explained I had told them in my last appointment... Again the issue of temps not understanding how the department works as they have only just started in the job. But at least read my notes, goddamit. I should have made sure someone listened, sure, but not my fucking fault no one would listen in the department YOU are working in. Not me. I have no control of how I'm treated while there; do not make this MY fault. FFS.

She wanted me to have a PET scan, and left the room to talk to my consultant. I laughed, knowing my old consultant hates unnecessary PET scans and only does them if physical lumps are present. This is like the one thing everyone know about him, so I laughed and laughed -she clearly had never met the man. She comes back in saying that he doesn't think I need one.

So she ends the appointment by saying, "We're going to keep a closer eye on you", and "I'm making an appointment for 6 weeks", AND "We really should get your thyroid checked" -So there was the bombshell, me realising they hadn't been doing that one thing... I'll be honest, I missed the previous appointment as I've really had enough of these ridiculous appointments. Usually part blaming me, promises they can't keep, or plain rudeness. A couple of them not really knowing anything about cancer or the side effects I'm referring too. They are a waste of my time, and theirs.

Nurses Are the New Doctors

Long story short -I receive an appointment letter, dated for 6 MONTHS, not 6 weeks. The usual appointment. I decided then to write a letter and explain I will no longer be attending appointments and please forward details to my GP nurse about whatever aftercare I need -something I should have done a long time ago. I ring the GP nurse to get my bloods done and low and behold, I DO have an underachiever thyroid. My last bloods a year ago were actually slightly off (I didn't ring for results like I was meant to -my own fault). Apparently early days, but with my history they know it will only get worse and don't want to take chances. I'll be starting on tablets soon to control it. I had put on some weight but with sleeping so much, I was being so inactive as you can imagine, so partly put it down to that. I'm quite angry that I had to endure extra fatigue the last year due to the complete incompetence of the hematology department.

I really wish nurses could be in place of doctors more often, making decisions. Like if I could just have a nurse instead of a regular doctor or a specialist, that would be awesome. A big bualadh bos to my nurse for doing an amazing job of taking care of me, even though I don't visit the surgery regularly -heck, to all the nurses out there. You have always been the more reliable side of Irish health care.


  1. I'm so frustrated for you. Sending you love. Xx xxxxxx

  2. Interesting perspective. I've never thought of it that way. Thanks for sharing.

  3. That is so crazy right yet not far fetched.