When life gives you lemons, throw the bas***ds at the wall!

Its now been 5 months since my 2 failed surgeries. After seeing my consultant I have been waiting for a referral to Cambridge University (Addenbrookes) to have more investigative scans. In the mean time I have come off all medication for the diabetes inspidus, meaning it was a transient side effect of the surgery. That means after 3 surgeries I am luckily to have a fully functioning pituitary gland, even if it functions wrong.

However, I have since felt my body and brain deteriorate. My knees constantly hurt, some days it feels like I have tried to run a marathon, they feel heavy and stiff. I’m tiered no matter how much or little sleep I get. I get days where I just want to flop on the bed and not move, I just want to rest- fat chance with 2 small children and a business to run. The aches and pain in my body seem to be at a constant now, they feel weak and this does get to me. Constant pain is frustrating particularly when there doesn’t seem to be any end in sight, I just have to push through and ignore it as much as possible.

In the last few weeks I have noticed that my muscles have become hard, like they are retaining water. I had bloods to check my kidneys and other renal systems were function and they came back clear. This is one symptom I never had before, and not sure if this is part of the Cushing’s or not. When exercising my joints and muscles sometimes go into such a stiffness they feel like they are going to cramp or my skin might split. It’s horrid feeling, knowing that by exercising I can help to mange some of the symptoms but at the same time it hurts and can leave me feel exhausted afterwards. It’s a catch 22.

After four months my referral to Cambridge came through. I was to have a PET CT scan and a PET MRI scan. They will make a radiation compound that will be injected into my blood stream to help highlight where my body is over producing cortisol. This would then give a better idea for a surgical target or give a better idea of the treatment I need. They would also take bloods and take a 24 hour urine cortisol and midnight saliva test from me. On the day of the scans i had a canular fitted, painful and difficult as usual due to my narrow, movable veins. On the way down to the scan room the nurse had the phone call to say the radiation compound had failed the quality control test and so couldn’t be used.

To say I was disappointed is an understatement. I was crushed, more bad luck, more failure. More time waiting to get well. While she and the endocrinologist looked for another date, I took myself into the nearest toilet to ‘let off steam’. Anger, disappointment, sadness, frustration and loneliness were some of the emotions that came to the surface.  Needless to say I haven’t cried as hard since the second surgery was deemed unsuccessful.

When I finally went back into the waiting area I told them I was unsure if I wanted anymore treatment or tests. I had had enough. I still feel that way mostly. Having been ‘ill’ now for 15 months and seeing my body get worse, not knowing what comes next or when is getting too much to deal with. I can’t make any plans too far ahead because I don’t know what might happen or when. I can’t plan for treatment because I don’t know what it is they will want to do or how I might be afterwards. I’ve been living in limbo for months and now when I thought that time might finally be over, I’m back to square one. I have to live with this disease for longer. I feel like my quality of life is compromised, I hate my body, how it looks, how it feels but I can’t do anything to help it. I constantly worry about my children, I don’t have the strength or stamina to play with them as much as I want to. Not only that but I may have to leave them again whilst I have treatment or worse see me ill during or after.

Part of me is ready to draw the line and just the let the disease do its worst, I could ask for hormone suppressants and refuse all invasive tests and treatment. No more waiting no more being poked or prodded. I could move on and do things without the worry of not knowing what comes next. I know the drugs could make me feel worse and its never going to cure me, but at least I could take back some power over the disease. I could have some control over whats happening to me. So far I have had to put a training course on hold and I had planned to open my own fitness studio in September but now that looks like I might have to put that on hold too.

I hate this situation and how it makes me feel. I’m lost and at my lowest so far. I know that I will probably end up going for the scans again on the 13th July, but for now I feel defeated and down and out. All I can hope for is that my body play ball and I can enjoy my two week holiday with my children.

2 months post op

It’s now been two months since the last operation. I feel like there is some normality back in my life. Returning to work has helped take my mind of treatment and given me something to focus on.

I saw my consultant after 6 weeks and she has referred me to Cambridge for a very specific type of PET scan. They will inject me with a drug that will hopefully show where my body is over producing the cortisol. This is the only place in England that does this scan. The alternative is a full body CT scan. I’m still currently waiting to hear if I’ve been accepted but I think these things will take time as it’s not a straight forwards case.

We also discussed what ttreatment I might need depending on what they fine. Essentially there are three options. If there is an obvious target then I will have another operation. If there are targets but sugery isn’t an option then it will likely be radiotherapy/surgey. Apparently the risks and side effects arn’t always as bad as thought and I might not be that ill. But cross that bridge when I get to it. The third and final option would be to potentaily take out my adreanal glands to stop cortisol porduction altogether. This would leave me with needing life long hydrocortisone and possible andreanal failure, so more medication. I don’t expect to come away without needing some form of medication or support from any of the procedures this time.

On a positive I have stopped the desmopressin which goes to show the skill of the surgon as he has managed to preserve what appears to be all of my pituitary function. Amazing man indeed!

In terms of how my body is and how I’m feeling, I still suffer with sleep. Some nights I can be awake for hours just able to sleep, I also tire easier than normal. I definatly have some muscle wastage in my legs, walking and going upstairs can make my knees hurt and feel weak. It doent help that I havent been able to exercise for months But I am going to try and change that. I’ve noticed my body hair seems to grow quicker and darker now too. At clinic I had put on 3kg in 3 months so I’m piling on the pounds. I also think blood pressure might be on the up. It’s anywhere near dangrous and is well within the acceptable range, but it is higher than is normal for me. Some days I feel very down about myself, hating how I look and how weak I feel. I wouldn’t be supprised if I’m starting to get a little depressed.

However, after all I’ve been/am and will be going through I feel I have to be strong. Not just for my sanity but also for my children. I saw a quote from Stephen Hawking yesterday whch was quite fitting and put things into perspective. “However difficult life may seem, there is always something you can do, and succed at. It maters that you don’t just give up”. Hell if he can defy doctors and live the life he had for so very long, then something like Cushing’s disease is nothing. i can get through this I will and no matter the consequences I am determind to live my life how I want it and enjoy my children.

6 weeks post surgery

Finally the day has arrived that I can blow my nose- and what a relief it is! I can also lean forwards and start doing more, its almost as if I will have my life back! Until the tests start up again. I see my consultant Friday and I really hope she will give some clarity as to what she thinks my body might be doing and what will be next. My gut feeling is a few scans to my kidneys and bloods, followed by another MRI to my brain. I’ll need the MRI anyway to compare surgery.

How do I feel? I get asked this a lot. Physically I still feel like there is a slight pressure behind the top of my nose, which gets painful if I’ve had my head down for too long. I did a good 4/5 hours on the lap top over the weekend and hurt afterwards.  The tiredness seems to be getting better, I don’t feel exhausted come the evening as much now. I’m also starting to sleep a little better too. There was a good few weeks where I would wake every few hours and then stay awake unable to fall asleep. I know that my brain has a lot going on at the moment so I’m going to put that down to stress.

It’s funny isn’t it. My body is in a permanent state of stress, and the one thing I need to do is not be stressed to keep those stress hormones down. Part of me just wants to go bananas for a few hours! When I’m fit enough I shall be asking a very good friend to get out the old boxing pads for me for sure!

My body still feels weak and my skin is defiantly thinner and bruises easy. I also still look 6 months pregnant and I can see the fat on my neck has increased. I haven’t weighed myself and I don’t see the point in keeping an eye on my blood pressure. Possible stupid I know but I want to ignore this for a little while longer until I have to be officially ‘ill’ again.

I still find friends and family don’t grasp the magnitude of what I’ve been through and what lies head. This won’t go away on its own. It may not get worse but it certainly won’t get better. The prospect of having a whole gland removed or radiotherapy/surgery isn’t a pleasant one. I have to try my best not to dwell on these things. They may not happen but I fail to see the alternative if it is my pituitary gland that is making all this cortisol. I’m not sure I want to take medication to suppress hormones if thats not an actual cure. But hopefully the consultant might be able to shed some light in a few days.

In the mean time I have actual work to do.

3 Weeks post op

So three weeks in. The cold is clearing and so now I can finally,mostly breath through my nose. Night seems to be the worst and I end up still breathing through my mouth now and again. I still suffer with headaches so regularly take paracetamol to help control them. I would still describe them as more sinus pain than anthing else. The tierdness is slowly improving, I still feel drained by aroun 9:30 in the evening and getting up early in the morning to feed the baby is still tough but the lightheadedness is slowly going.

I had a call with the endocrine nurses just to check how I was doing from a surgery point of view. She was happy that so far I seem to be fine. I’m managing the diabetes fine and there no cause for concern with the pain. I should be fine to drive short distance next week too. I think I will just attempt a trip to the shop first!

Physcially I’m definatly getting stronger,,energy is slowly getting there and pain is subsidding.Just in time to start investigating again! Next week is one 24 hour urine test for cortisol and the following week will be the second and the saliva test.I’ve done one of those so will be something new at least!

Emotionaly I have been having more bad days than good. Mostly I think I’m dissapointed that I won’t go back to ‘normal’ as I’d hoped and I have to come to terms with  how my body looks and feels now. Mostly I know its just a vanity thing but the other part of me is very aware that I could actually be starting to feel depressed. My first plan of action is to try and fit some exercise even if its a walk or 10 minutes of light exercise. At least I will feel like Im doing something about it and not just feeling sorry for myself.

 

Two weeks post op

In typical fashion I’ve had a cold. Ouch. After finaly being able to go home last week, I am full relief at seeing my family. I’ve been sent home with an emergency kit of hydrocorisone just in case. It’s highly unlikely that I will need it but its there just in case I become very ill or faint unexpectidly i.e not from heat. My sodium levels have sorted themselves out. I had to have a blood test to check the day after my realise. It was the compromise for letting me go. I agreed that I would and decided to go to the central hospital (BRI) as I trust them to a) find a vein that will bleed and b) get my bloods done in the time frame needed for cortisol.

I won’t lie, its been very hard being home. I’m not sure if thats down to having a cold, which has sat quite nicely around my sinuses, or being post-op. My head feel foggy a lot of the time and is accompanied by a headache of varying degrees of painful. I’m tiered a lot of the time and find my energy decreases very quickly around mid afternoon before getting a second wind and crashing about 9/10pm. I feel guilty for not getting up in the night to feed our 5 month old. But I’m so foggy and often feel awful physically. I have started to try do the 6am feed and even that is hard. Don’t get e wrong its no song and dance getting up in the middle if the night to feed a baby anyway. I just don’t seem to have the energy to do it but feel bad as my husband still has to go to work.

We have had his mother stay with us but she has now gone and I’m on my own with two kids. Its tough. I can’t bend down- well not supposed to but catch my self leaning forwards throughout the day. I’m also not very good at resting- the though of washing sitting in the basket drives me nuts and again I don’t want to put everything on my husband I want to contribute.

One of the hardest things I’m dealing with is accepting what I look like. I see this peson in the mirror and I don’t recognise them. I hate my round stomach and puffy face. I’ve never been super skinny but my stomach is two sizes bigger than normal. I work in the fitness industry and the thought of having people look at me and judge feels me with dread. I feel like I look like Im still 6 months pregnant, I don’t want people to think that I don’t practice what I preach. I want to hide my body away in baggy clothes as much as possible. Im also worried that because I have to have more treatment, I could be deemed as unreilable or not worth investing in if I have to take weeks of again. I have to go back to work, I’m self employed so no sick pay and Im out of maternity leave. I also enjoy my job and want some normality in my life, and able to contribute towards bills ect.

Cushing’s isn’t just a simple disease, it’s very complicated and the impact of a body that no longer does what it should or looks the same is a hard one to adjust to. At the end of the day, I know I will have to pull on my big girl boots, suck it up and fake all the confidence I have to stand in front of people and instruct them on how to use thier bodies whilst fighting with my own.

Days 15 and 16

Day 15.What  a night! After admitting I did actualy feel unwell and my blood coming back with low sodium I decided to hit the sack early. Typicaly my desmopressin decided not work. I ended up doing several arge outputs of urine every 3 hours. This ment at 3:30 the nurse called the dr who thmen came in and turned the bloody light on! I mean really?! Only to ask me if I felt ok and to see my tounge. Then at 4 the lovely nurse came in to give me another tablet. Fine. Then at 6am she wanted to do bloods. 2 attempts later I can go back to sleep. 6:30 time for obs from the nurse. Fine. I just get up and wait for breakfast.I am not expecting to go home today. I think I can deal with this.

My nurosurgeon who sees me when my main is out came to see me. Im glad because I wanted to see her before I went. First she appologised for not seeing me over the weekend, to which I tikd her not to be silly she was busy it was just the off chance! We then had a brief chat about  what might happen next. If my consultant thinks it worth they may explore my adreanals and else where in my body. This is usualy done by utltra sound or scan- easy peasy I can do that, mch nicer than bloods. The sugeon is lovely and I’m very greatful for her care in my main consultants absence. I’ll miss her, especaily as she will try and get me discharged without seeing the endo team who are more likely to keep me in due to the low sodium and random wee last night. She thinks my body will just do things like that as it trys to rebalance its self post 2 surgeries so isnt really concerned.

Next up is the endo nurse specailist. More blood to test cortisol. 2 attempts later! she is nice tho so Iet her off and its late in the day and there no phlebs so we need to bleed! We went through how and when to administer the emergency hydrocortisone if needed. Basically if I feel very unwell as if i have a very case of flu, suddenly faint, have a sudden shock or trauma such as berivement or accident, I may well need a shot. I’ll get a call from the girls in 2 weeks to check how Im doing and healing.

So next I’m waiting for these sets of bloods to come back, we also did another sodium to compare as the 6am was also a little low. Aparently thats not normaly the case with diabetes insepidus- usually it goes to high. But hey who likes to be normal right?!

Finaly its the endo guys and its the gentleman I like. We have a chat about what next when I see  my consultant ect. He askes how I feel about staying in an extra night. I reply Id rather go home. His compromise is I can go if I can get my sodium tested tomorrow, I agree to go to the BRI. I’m going home- finally!! I also just need to keep an eye on my fluid intake and output for a week, but agrees that it could just be an adjustment period and again isnt concerned.

The thought of seeing my children is the best news I’ve had all week! Emotionally I am much better today- my head is clearer and I feel like I can again take what is delt to me next. My children will give me the strength I need.

Needless to say they are very happy little boys to have mummy home! A curry to celebrate indeed.

The night was again a long one which wasn’t helped by the horrendus wind-  knocking over bins ect. never mind. Again emotionaly I feel better for sure. My main focus now is my family, my work and finishing my uni course. I can control each of these things, and they will help give me a sense on grounding and focus whilst my health is in dissaray. I cannot spend the next 3, 5, 12 months waiting to know what may or may not happend and the choices that come with that. I need to carry on with life as normal and when I know more I can address that task at the time. I will take each day as it comes with my health. Today and last night the desmo has worked fine no major unrines or sudden iincreases in output. Fingers crossed this carries on and hopefully soon my body can restore this function itself.

Physically, my nose is driving my nuts. What I would give to blow my nose right now! I just seem to have snot sat at the top of my nose that wont drip out. I sound like I have a really bad cold all the time! My head feels ok, a little woozy at times and I have to keep reminding myself not to bend forwards to pick things up. I feel tiered but having hardley slept for two night Im not overly suprised! I’ve noticed my leg/knee hurts, particularly my right one. Im going to put it down to being very still the last few days so just not used to actually walking and moving any more!

Bloods done again today, no follow up call so guessing they are fine.Next due next week for the same. I also need to email my consulatant to ask when she wants my urines in  next. In the mean time; eassay to write over the weekend and hopefully sleep to catch up on!

Day 14

Today i feel a little bit more able to takle things. There was talk of discharge and so this helps.

Ill be sent home with hyrocortisone in the form of an emergency needle in the event that my cortisol levels drop and I become very unwell. There is a very small chance my cortisol could have a delayed response to the surgery and drop on its own in a few weeks. There is only about a 10% chance of this so im not hopeful. BUT if it does I could avoid further invasive treatment.

I was set for discharge this afternoon until my sodium levels came back far too low. Admittadly I have been feeling headachy, dizzy and sick most of the day so staying in to make sure I dont collapse is probably sensible. However Im now very ready to go home and live my life before the next stage.

I will probably have a few weeks of not having to see anyone apart from having my bloods taken and urine tests. I want to use this time to be with my family and start back working.

But as my body seems to like to obsticles in my way we shall see.

Day 13

D-day today. It wasn’t what I was hoping for that is for sure. My cortisol levels this morning were still up. The surgery has failed.

I’m crushed, angry, upset, frustrated and feel helpless. I’ve not wanted to see anyone bar medical staff. I need to get my head around the severity of what has and is going to potentaily happen. The endronologist suggested further options may include radiotherapy or full andrianl removal as disscussed with my surgon. My frustration comes in that I now have to wait to be discharged and sent back to own consultant to start essentialy start again. I don’t like the sound of either option and am at a stage right now where I would happily refuse further treament. I feel like human pin cushion from all the bloods being taken and having to be poked and prodded more feels me with dread. I know that I’m probably going to need more blood tests, scans, appointments as an out patient on top of check ups and management for the diabetes. Trying to look after two small children, run a buisness and have somewhat of a ‘normal’ life seems like a slippery fish that I just can’t grasp. I see myself as a fairly resiliant person but even I have my limits and this seems too be reaching them.

All I want is cure and to live my life, not spend children’s youth in and out of hospitals going through tests and not being able to give them 100% of me. I’m emotionaly drained and have allowed myself several outbursts of tears today.

I’m hoping they will discharge me tomorrow, but they need to sort my medication for the DI so chances are I will still be here until Wednesday. I’ve contacted my consultant and asked to see her as soon as I can. I trust her and she knows me, it makes a big difference in the rationale behind my treatment options.

For the time being I have a bag of chocloate buttons and mini eggs which I intend to eat.

Day 12

So midnight blood test it was! luckily my nurse was pretty skilled and found a ‘new’ vein,hurt like hell but he got blood result. After that I had a fairly good nights sleep, waking only for obs at 6 and breakfast at 7:30. Feel less ill as such but like Im run down with a cold. Still very tiered and slight headach tho.

I have also been given hydrocortisone this morning- i assumed this was because the corisol ffor then night was fairly low. Was ready for a nap at 10am this morning. I still feel up to going for a walk and the neurosurgon said it may take a few days before I feel better. I still the desmopressin asI still pass a lot of urine  frquently if untreated.Ive been told it may mean a tablet twice a day.

The Dr has also asked for my morning hydrocortisone to be taken at 10am tomorrow so they have a ‘true’ reading of my morning cortisol. i had had the tablet at 8 am then the bloods taken after so it had to be disgarded. Could have saved myself another needle!

Tomorrow will hopefully be the day that a plan starts to form. The endocrine team are back in and will look at the bloods and decide what action needs to be taken- meds and home with blood test once a week and see if levels drop or they may be happy that they have settled to ‘normal’ range and will just monitor. They may want to wait until Tuesday or Wednesday before they make a decision to be sure thou. we shall see. The fact they hvegiven me steriods gives me some hope the surgery was successful and home is in sight.

Day 11

This morning I felt very lathargic, getting out of bed is an effort. I still have a headache, and I almost feel ‘floppy’. typically the nurses wouldn’t believe me when I said I had difficult veins and the blood nurses ( phlebotomist) are the best people to try and take my blood. My nurse tried twice and failed leaving a huge bruise on my hand, she then got another nurse who went in my wrist, ontop of the bruise left by the artirial line. she managed to one vile but the cortisol one was small. we have to hope there is enough in there to get a good sample.

I’m definalty not feeling well today. My head hurts, I’m really tiered, slightly dizzy, waves of nausia. Lets see what happpens..

So they couldnt process my bloods and obviously have missed the window until tomorrow. I’ve no idea what my cortisol levels are doing expect that I’ve stayed in bed all day. My head still feels light, and my weak. I’ve slept a lot this after noon and just feel like I need to lay down sitting upright to type is hard work. I really hope this is the start of a fall, if it’s not clearly I just have cold. Unfortunatly I wont know until at somepoint tomorrow- providing the nurses asks someone more experienced with taking bloods to try!