Too scared to enter the room. DVT

6 minute read time.

I am too scared to go into the room…..if I kicked the door too hard, it would either come back at me twice as hard or just kept going round and then send me flying into the room….splat…  I need to stay upright for now!

Thursday was a really BAD day…..to come out of hospital after a 6 hour regular check up appointment to news that a friend has committed suicide, aged 41…..why they call it the icing on the cake, there was nothing sweet about it…..sorry for doom but I have to get that out, so desperately sad and such a waste of a wonderful person.

So, the day started not much better.  I had read my appointment letter loads of times….but really just the appointment time and date, well, the Royal Marsden is the Royal Marsden, based in Fulham……so off I go, early from home as I hate the panic that I may be late….miss a bus so sit and goodness knows why but read my appointment letter….from the beginning.  Your appointment is at the Royal Marsden, Sutton…WHAT, SUTTON is a good 30 minute DRIVE away (no bus needed here)……panic….run back home, up the stairs, find car key, jump into car, find Satnav and can’t find out how to switch from a map of France to UK….ahhh….wasting time, panic starting to set in….breath.

Get to the right Royal Marsden, find a parking spot….phew, still with time to spare.

I know that you can’t be too choosy about what work you do these days and we are lucky to have a job at all etc., but seriously, if you are the first person to greet someone when they come into the building, you attempt a smile do you not….give the person walking in a chance that they could be quite nice, may not be about to complain, give you a sob story etc….?  Obviously not.  “Yes”……”YES”…oh, sorry, are you talking to me because you are looking at your computer. 

I have got it wrong, I can’t see them before I have registered…so off along the long and deserted corridors to register as a new patient, back along and the same greeting as before….”I’m back”!  Am sent to sit and wait “if you can find a seat” – the floor wasn’t that comfy and also I didn’t think it appropriate to practice my crossed-legged sit….however, it wasn’t for long…..oh, not because I was called for my appointment…..a seat became available…..phew….it was a long wait.

I have to say it was a very depressing  2 hour wait before I braved the dragon receptionist to enquire quite how behind the consultant was and the rest of the team as I hadn’t even had blood tests taken so how on earth can he then tell me if I am still on watch on wait?  I am beginning to get angry now but purely to stop myself from crumbling into floods of tears…..pure emotions just running wild. 

Before I know it I am called to the consultants room and left alone to wait…and I can’t hold the tears in anymore….I always do it…I am fine, fine, fine and they crumble….I can’t stay strong when I most need it.  Anyway, he enters and claims he doesn’t bite…..and I claim I am fffff….hhuuuhhh…iiiinnnnnnn…hhuuuuug….sniff….eeeee?!!!  And then I am…fine….and then a bit of frowning as I realise that he hasn’t’ even read my notes…..the ones that I tracked down between Poole and London as the first lot went missing.  He brushed it off as he wants his own histology anyway so CT scan being booked…in London….and also bone marrow biopsy to confirm staging.  Bit scared about that bit….the biopsy, not the staging, at the end of the day, I still have cancer!  This new consutlant seems a lot more bullish into getting on with treatment.  Tests first, deal with “what next” later.

I mentioned how well I feel but a few night sweats over last few months and a bit concerned about left leg swelling up.  I put it down to the move to London and travelling on tubes, humidity etc., but it did blow up to at least twice the size at the end of the day……and he turns round immediately and confirmed that my wait had just got longer…

Off I go along the long, deserted corridor, past reception and back along a mirrored long and deserted corridor.  I find a random desk and announce that I am here for my ultrasound.  “Has your doctor called ahead?”  “I don’t know, has he?  Are you expecting me?” No” …..that’s it, tears again, I am not going to be their boxing bag for the admin shortfalls. 

I have my ultrasound and am relieved that they find a deep vein thrombosis that is partially blocking a vein as it gives an explanation to the swelling and can be resolved.  So back to the consultant, how has now gone home, but meet his second in command.  Blood tests, urine samples, more waiting….oh, plenty of seats to choose from now as most others have gone home now too.  Back in to doctor and get a prescription that I need to go and collect and then return once collected…..so back along the same long and deserted corridor, prescriptions….hand in mind that says VERY URGENT all over it….why they bothered I am not sure as VERY URGENT may have said, take as long as all the others and in fact, this one can wait longer than all the others. 

Whilst I am waiting I see a lady that starts crying at the window of the prescriptions out….I look at her friend and tell her that seeing her cry wants to make me cry and I am sure she will be fine.  The friends says that she won’t, she had just found out that she was terminal.  But she looks SO well and healthy…..and she actually was OK when I spoke to her – I had been praising the Mac online community so her friend mentioned it as she came towards me….she was so super positive…..I have all fingers crossed that she has a long and happy few years ahead of her. And if you are reading this, hello, you are one amazing lady amongst many others on here.

So an hour and 8 minutes later, back along the long and deserted corridor and to the waiting room and I have a choice of all the chairs….whoopee, only I don’t want to sit down, I am not prepared to wait long enough to sit down.

I find a nurse and tell her she needs to show me how to inject my tinzaparin……so show me she does…easy…when you know how?!!  One injection a day for the next month.

And then wait…..I need to get results of blood tests etc….and the doctor comes out…yes, bloods are all fine and you are good to go…..AAARRRGGGHHH, finally.

So off I go….slowly…..knowing now that I have a DVT that could be fatal, it makes me slow….but it’s weird….I am fine still….and until this day I was still jogging, tennis, running up and down stairs, parkfit……oh, up an incline to my car in the car park….slowly…..do I feel that…no not really!  And what goes through my mind is that I still have to keep going as I have my Move More blog to do for another  2 weeks….well, I could do stomach exercises?  But in fact, for once my spare tyre has come in very handy when I need to pinch some fat to inject into…..back to the drawing board.

So I feel free after 6 hours in hospital….I feel exhausted from my emotions being all over the place.  I feel a bit stressed about now having a long drive home in rush hour traffic.  And then I turn on my phone.  A text.  Thought you should know…..jumped from the Forth Road Bridge.   Crumble into a ball in the car for a while. 

I need to get home, I need to get to see my husband who will be desperately sad to hear the news.  I need to support.  I need to find my “be strong” again.  I need to carry on and just keep going. 

 

Anonymous
  • FormerMember
    FormerMember

    Dear Clair, I really don't know what to say. The way you were treated at that hospital is so alien to my own experience here in Wales, although I must admit it took the receptionist 3 days before I was greeted by name as I entered the building. It makes such a difference.

    I know only too well that panic in trying not to be late for appointments; the fact that we are told not to worry or take risks in order to get there on time. I was once two hours late for my appointment - I had read the wrong time on the letter - and was told Oh it's OK the consultant is running two hours late anyway.

    What a shitty position we are in when we are relieved that a diagnosis of DVT is better than cancer, Good luck with that, I hope it clears soon.

    Your move more blogs have been so inspirational but don't worry if you can't follow through; You have both carried them through much more than anyone else.

    It is always sad when someone feels so hopeless that the only way out they can see is to take their own life. It emphasises how lucky we are to have this on line community where we can reveal our innermost thoughts and fears without feeling that we are burdening our family and closest friends.

    I am sending you some real Welsh cwtches and some for your friends family as well,

    Odin xxx

  • FormerMember
    FormerMember

    Dear sweet Claire,

    I cant imagine how much strength you needed to get through that day, the sheer exhaustion im feeling for you just reading it. I want to send you the biggest hug i can get as i can slightly empathise as one of my best friends commited suicide a yr n half ago, i crumbled and had to get driven home from work by my boss, and was still in turmoil over it all weeks later, in no fit state to counsel children or assist my suicidal clients in my day job as i couldnt get the image of him being found out my mind. I still cant believe it. Its the most horrible thing ive ever experienced. I keep going over n over in my head about the last conversation we ever had and how i shoulda hugged him goodbye and told him i love him. It breaks my heart to have walked out without doing that. Im sure you are questioning everything yourself now and their actions will never make sense but it doesnt stop us playing these things over and over, its just the human condition i guess, we care too much and need answers that we rarely can find. I am sending you the warmest hug i can for enduring such a day with such an ending.

    My sister has a DVT from groin to ankle, we are lucky enough to have a blood clotting disorder passed down through our family, and its very active in her unfortunetly. They discharged her from hospital with her leg the size of an elephants as they scanned a portion of it n it all looked the same so MISSED the fact it was the biggest one they had ever encountered, sent her home, she was back in hospital by that night, we knew something was wrong. She was bed ridden for 6months after she gave birth. The combination of all the spinal blocks, epidurals, 36hr labour before they realised they were both in distress and a blood clotting condition apparently make for one large ass DVT. Shes been on warfarin for almost 7 yrs now and has just taken her first part time job on in that time and is feeling ill and sore pushing herself, but i think she feels great for regaining some independence again and earning a living once more. But i digress, DVT's are a fun by product of cancer so im told and it makes me feel great that its something they can get on top of and deal with before they get to the permanent stages of what my sister endures. I know i couldnt cope with what she had went through, and i know that she couldnt ever deal with cancer. Life throws at you only what you can handle - i would hope! Im constantly paranoid, with my legs swelling up, chemo, cancer n blood condition, that im in for some of the fun pinch and inch jags at some point on this journey. When i took that concern to my consultant i got met with a guy ive never seen before who was looking for any excuse to cancel my chemo n poked n prodded at the non swollen part of my legs n sent me packing telling me my tumour was causing it. I had zero faith in that guy and was just relieved when weeks later i got normal sized legs back. The fun n games of gettin passed from pillar to post between hospitals and consultants you dont know who dont know your history. It makes the whole thing so much more stressful. I can only imagine that one experience was a fraction of what you endured that day though. 

    I hope you are doing ok, i feel helpless just sending you just virtual hugs, i feel that is nowhere near enough with such a stressful heartbreaking day, however these are all i have to give, so HUUUUUUUUUUUUUUUUGGGGGGGGGGGEEEEEEEESSSSSSSSSSSTTTTTTTTT of hugs, and lots of love coming your way.

    Stay strong,

    Lynnie x

     

  • Hello Clare what a day.Your friend as Hilary said must have been in a very dark place to feel the only thing they could do was to take their own life.My thoughts are with his family and friends as the aftermath of a suicide and the impact and devistation on those left behind raises so many questions so much hurt and confusion and what ifs and shoulds and shouldnts.It was in one way fortunate you missed that bus and re read your letter.The old saying you only get one chance to make a first impression is so true the people who pardon the term greeted you surly dd make an impression.I have found that if someone at least looks up from the computer and is polite if they explain about the waiting time it helps.Sounds like you where passed from pillar to post and back again.There must be and are better ways of running clinics.We all build ourselves up for appointments and results they can be a very stressful and worrying time so a bit if curtisy and a friendly smile or greeting goes a long way.I hope now you have your treatment that the DVT soon disapates.I wouldn't worry too much about the move more at the moment you need to get through this first and you certainly did put a lot on effort into it but you seeing that clot off is more important at the moment.If you do intend to do any Form of exercise whilst the clot is still there please check first with your GP and as you say a spare tyre does come in handy for some things.Sending you a huge warm hug Cruton xxxx
  • FormerMember
    FormerMember

    Just a thought Clare. You know where it says in your Move More diary 'If something gets in my way, I shall...... You need to put in there ' Get back to it in a few weeks!' Because you will. You will.... (sound like Mrs Doyle now, don't I?)

    Big Hugs. Julia XXX

  • FormerMember
    FormerMember

    Oh Clare ....... there's nothing much I can add to everyone else really, so I am sending you strength and comforting hugs.

    Love, Joycee xxx