A Room With A View

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“Though life is very glorious, it is difficult.”
―     E.M. Forster,     A Room with a View / Howards End

 

 

 

 

 

 

Another of my favourite books by one of my favourite authors.

The title being apt because I have had my own room with a view of sorts recently.  I took an unplanned short break for a couple of nights in the Manchester Royal Infirmary, not quite the same as Italy!  During this recent glorious spell of hot dry weather I had been feeling a little cold and shivery and was wearing warm winter clothing in the office with the window closed, very unlike me. When I came back from work on Wednesday I was exhausted and was intending to take some paracetamol and lie down but something made me take my temperature with the old velcade thermometer I had been given when I first started chemotherapy and it was 39.1, quite high then. The advice when I was on chemotherapy and after my transplant was to contact the haematology department if your temperature was over 37.5 but did that apply when not on treatment?

I wasn’t sure so I thought I would ring the out of hours haematology line at my hospital. I explained I had relapsing myeloma and my temperature was 39.1 and the person I spoke to advised me that I should go to A&E as I may need antibiotics. I anticipated that they would say that, from past experiences, having attended several times whilst on treatment.

I rang a friend who kindly gave me a lift. I wondered about packing an overnight bag but decided that I would probably be home later and it wasn’t necessary. I duly arrived and showed my haematology alert card which means that I shouldn’t be left in the main waiting area too long and within a short space of time I saw the triage nurse. My temperature had dropped to 37.9 by then and I was beginning to wonder whether I should just go home!

I was then taken to a side room in the amber area. About 3 hours later I saw a doctor who said he didn’t want to give me antibiotics yet but wanted to admit me for observation as a high temperature and fever was a sign of infection. That was about 9pm and I was left there until about 3.30am with a break for a chest xray, after which I was eventually moved to a bay on the acute medical unit. It was a truly awful experience trying to sleep on a trolley with bright lights and continual noise! When they took my temperature again at 4am it had gone back up to 38.4.

From there I was later moved again to a haematology ward after I saw my haematology consultant who said he wanted to keep me in another night for observation and give me some intravenous antibiotics.  It was a different ward to where I had my stem cell transplant but a similar set up with haematology nurses who reassuringly knew what they were doing and with what they were dealing. I was sharing a large room with another patient undergoing a stem cell transplant who was very poorly and the room had ceiling to floor windows with a view of the a car park with some grassy areas beyond it and a modern section of the hospital on the far side of the road. Certainly one of the best views to be had from a hospital bed in the MRI!

Well before I got the intravenous antibiotics, my temperature had stabilised and I felt ok but exhausted through lack of sleep for more than 24 hours. My consultant told me I couldn’t possibly start treatment with an infection in my body as it could end up being much much worse and I expressed my frustration that treatment had been delayed to the point where I had got an infection and now couldn’t start treatment. He tried to explain in a rather abrasive manner that it wasn’t vital that I started treatment straight away as my kidney function was fine and my blood counts were normal but I didn’t really take it in and just felt that my myeloma would spiral out of control untreated. After he had gone I am afraid that I just broke down and cried and cried and cried!  I felt alone and as out of control as I perceived my myeloma to be.

I calmed down a little later on in part due to a chance encounter with my former lovely consultant in the coffee bar who reassured me with far more empathy than my consultant showed, that it would be ok to delay treatment and it wouldn’t affect the outcome although I didn’t ask her what damage if any, was being caused by my rising kappa light chains now at 1032 mg/litre.

So with all the endless waiting around for tests, doctors, nurses and medication over the next 24 hours and in the absence of a working TV or a decent mobile signal, wifi or even a book I had no distractions in my room with a view.

hospital room

I watched from the chair by the window, people sitting on the grass basking in lovely sunshine, smiling, drinking, eating, being happy and going about their business, in contrast to my sterile prison like environment. I gloomily realised a view of my future, of admissions to hospital, treatments, clinic appointments, transplants, a life over which I had no control but which was shaped and determined by medics, numbers and endless blood tests. This would be the life ahead for me and I would never experience that careless abandonment of those people outside sitting on the grass. It would be a life that set me apart from my friends and peers whom I am already conscious of boring with the latest tales of my relapse and kappa light chain figures. It can only get worse in the future and I don’t want to burden my friends with that but neither can I pretend to be unaffected by it. I don’t want talk about it but I do want to talk about it. I am in danger of becoming alienated from the world my friends and peers inhabit, of planning for their future retirement, booking holidays, downsizing, celebrating their 60th birthdays and making assumptions about their futures which I cant make.

And I know my future will be about more than that and there will be good times ahead but right now I am feeling a little bleak and don’t want to or cant feel positive or “keep my chin up”. I try to live from day to day but my two days away didn’t help to keep my spirits up.

“I never think of the future – it comes soon enough.”
―     Albert Einstein

18 Comments

Filed under Cancer, chemotherapy treatment, Health, Life and death, Multiple Myeloma, Myeloma, Relapse, Stem cell transplant

18 responses to “A Room With A View

  1. Ruth

    Thanks Wendy for giving those of us who aren’t going through this kind of stuff a sense of perspective. I do love the clarity of your writing. Am hoping you’re home now? Much love.

  2. Catherine Butler

    Oh Wendy, have just spoken to you on the phone so you know what I mean to say – just can’t write it well! We are thinking of you and hope you feel a bit better soon. Let me know about Leeds. Love Cath n Ing xxx

  3. Eve

    Hi Wendy

    Slim has been in a similar position!! 39.highest temp,took him to doctor and said I am trying to keep him out of hospital changed anitbiotics ,started him on 10 ml of Dex and Claxane injections early,we have had a few of those horrible visits to A&E,learn,t from experience paracetamol will take temp.down. As much liquid he can drink,promised faithfully I would take him if no better,rather he was miserable in his own bed.So tomorrow we will see if they start treatment again!!!
    Got to go with the flow,I hate A&E,more likely to catch more germs there!!!

  4. Wendy. Hope you are feeling better soon – in body and mind. This is the bit that worries most – the compromises, obstacles and barriers between us and everyday life. It’s not much to ask, is it? To just be able to do normal stuff

    Thinking of you – strength

    Alex

  5. I can completely relate, as you knew I would. It’s like one part of your mind is always just a bit separate, observing, checking, logging, reassuring (or worrying), even while the rest of you frolics when you can – you can never completely just let go. Yes, we constantly live with the “just in case”, don’t we? And when even a slight temperature becomes something to be admitted for… just in case, it’s a bugger! Not to mention a harried consultant being abrupt and lacking empathy right when you needed it. Hugs x

  6. Penny Aldred

    Hi Wendy, So sorry to read this. I hope that being home with a different view and support from friends is all helping you feel better. As you know, I’m not very good at responding on blogs and facebook, but this was one not to ignore. Thinking of you and wishing you strength. Penny xx

  7. Jane

    Hi Wendy
    I too am a Manchester patient having had both an autologous and allogenic transplant for myeloma.
    I can fully relate to your roller coast ride and your room with a view. Although my kappa light chains are currently within normal range, just after I had had my allogenic transplant, I was given the news that they were on the rise, had doubled from my pre transplant figure and they told me this meant my disease was far more aggressive than they had thought it was – I was gutted. Since then however, with the help of GVHD, there has been a great improvement to being in ‘normal range’ for the first time in the 18months since my diagnosis. I feel like I am living on a precipice from month to month for the most recent light chain result – are they on the rise yet are they not, is the myeloma becoming active is it not. I know one day I will get the dreaded news that you have recently received that relapse is underway.
    I hope your treatment plan is soon to be underway, that you have recovered from your recent infection and you can get back to living your life.

    • Hi Jane

      I am really pleased that you found my blog, I had heard about you through Jet. Wow you have been through the mill and it must feel great now that your kappa light chains are in normal range. I hope your GVHD isn’t too awful and you are enjoying a reasonable quality of life. I try not to think too far ahead. I’d be happy to meet up with you sometime to swap experiences.

      Wendy

  8. Wendy, we were both being admitted at the same time in different cities, I’ve just got out of UCLH. Wonderful staff and great care, but the psychological burdon is just too much at times. I’m sending you lots of love and hugs.

    Tom

  9. In the early days when we thought my SIL had one foot on the threshold of the Green Door to the Other Side – and this happened over and over again – the feelings of despair were overwhelming at times and someone either wrote or said, “You cannot eat an elephant in one bite. Don’t even try.” And from then I took what I liked and left the rest (huge clean-up problems with elephants – LOL!) and even though we are managing, I know we are daily having to be In the Moment, enjoying now, realizing we cannot allow ourselves the luxury of either worry or dreaming until (or if) CR is ever reached. Just know you are not alone and I hope that is some comfort.

    • Thanks Sandy, the elephant is my favourite animal so I don’t want to eat the one in the room with me metaphorically speaking, I want to learn to live in the same room with one!

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