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

    Oh, my dear Clare, I do feel for you and have just joined you in some dusty eyes... You are a strong determined lady and you will get through this. You will.

    Isn't it just the pits when everything goes wrong at once but you will find your 'be strong' again. You are allowed to have crumbly days and then you will bounce back even stronger.

    If you'll let us, your friends here in Mac Land will stand next to you in solidarity and help you stay strong. But until then, you need lots of husband and dog therapy now so promise me you'll do that this weekend. XXXX

  • FormerMember
    FormerMember

    Darling Clare - that's just shit upon shit upon shit upon yet more shit. Why can't hospitals realise that we're ill, we don't need to fight a battle just to be seen - let alone battle after battle. Well done for making it through, and perhaps future visits will be easier.

    I don't know what to say about your friend. There's really nothing I can say, is there? She must have been in such a bad place. I'm fairly familiar with that place myself, but couldn't do what she did. It's awful, and I'm sorry.

    I'm sorry you're having to go through any of this crap. There isn't, really, any choice but to keep going, and I hope that your friends and family - and us lot - will help you find the strength you need.

    Much love

    Hilary

  • FormerMember
    FormerMember
    Thank you and it really does mean so much having macfriends, like many have said before, as time goes by, its the macfriends that see you through / really seem to care about every little step you take whether it's forwards backwards or nowhere. Hils, there are no words. It was a young man with a wife and child and so much to live for. Suicide is weird, the person has to be so desperate to be able to fond strength to do it bit I also get angry with the selfishness of it which makes me feel bad for thinking that. Life is a weird place to be. Love and hugs to you all. And thank you xxxxxxxx
  • FormerMember
    FormerMember

    Oh sweetheart, I wish I could just scoop you up and give you the biggest of biggest hugs...

    I am so sorry to hear about your friend.

    As for you, well done for getting through the day and doing the injections. Its weird this thing of feeling ok and not being isn't it? I have just been told my bones are now rubbish and on my way to osteoporosis and I was doing like you at the gym thinking eeek I might break my bones doing this, when before I was fine. It messes with your head a bit and then you just have to sort of live in the moment and just be... and not think oh I can or can't do this cos I have cancer or whatever...

    Sorry, not making any sense. You are you and you are strong and sod the move more blog if you can't exercise, but I am sure you can do some still.... and we are here for you and never feel alone will you, cos you have all of us loons alongside you all the way, holding your hand...

    Oh and I reckon you should all move to Wales and come to my hospital. They tell you how late the consultants are running and they smile and laugh and hug you and remember your name and everything.... and you would get my consultant cos he does lymphomas as well as arses and he is gorgeous hehe.

    Anyway, I am getting a bit cross eyed now so need to stop but just wanted to send you the biggest tightest longest hug till you feel a bit less wobbly

    Little My xxxxxxxxx

  • FormerMember
    FormerMember

    Very sorry to hear about your friend, and all the other rubbish.

    If it's any comfort with the DVT, a close relative had one which was pretty sore.  These things need keeping an eye on, but once they've found it they can give appropriate treatment.  Her DVT resolved fine, thanks to anti-clotting medicines.  While regular injections aren't fun, you do get used to them.