Alli's Place

Where Alli shares her thoughts and feelings…

Spinal Surgery #2 it is then

I now have a date for spinal surgery number 2. I can’t say I am particularly happy about it but I am hopeful that it will get me some pain relief and hopefully allow me to get back to a manageable level of pain (i am being realistic as they can’t make it better than it was before the disc went mad).

I want my life back!

So the plan is to do a micro discectomy which basically means they go in using key hole type techniques and remove the bit of the disc that is causing problems and leave the rest of the disc there. I think the idea is to do as little as possible but remove the issue and hopefully not make the current scar tissue worse. One positive is that the bone has already been removed so they should have easy access 😉

Oddly my biggest fear is getting bumped again. Out of two surgeries (one just under local) in my life both have been canceled on the first attempt so I don’t have a great track record. I also don’t fancy dissolvable stitches again as they didn’t dissolve and ripped the wound open as they worked their way out when I had them before and resulted in an ugly scar. If I am honest the whole thought of being sewn back together makes me go funny. I am not really squeamish about blood and stuff but stitches just repulse me.

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Having slept on it life is not so bad

So after feeling rather depressed last night and quite tearful about everything this morning I have decided to move on, leave my worries in Gods hands and the decision to the experts and just carry on.

Let’s look at the positives…
They will do something, it might not be pleasant but hopefully I will end up better than I am now…
Whatever happens they will help with control the pain I am left with…
I am not on my own and have lots of lovely caring friends and my family are there for me too…
I have the most adorable God Daughter who not only give the best hugs in the world but melts my heart when she gives my back kisses to make it better. I love her so much 😀 …
Last time I had back surgery I felt a real sense of God’s presence with me and I know he is there now too…
The surgery , if that is what they decide is much less drastic than last time…
I got through it all before so I know I can do it again…
And the best one of all I still get to park in the visitor spaces at work rather than do the where shall I abandon my car today thing till it is sorted 😉

Today’s resolve it to decide I can get through this and I am not going to let the pain win… Now where is that Tramadol packet it is time for more…

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And the Back Saga Continues

Today I had my neuro appointment with someone called Lucy. To be honest looking at the MRI it doesn’t look like much to me, as I am comparing it to the schwannoma, so I feel a rather pathetic that it is causing me more trouble than that ever did! Back to the point though, the outcome of that is that she is going to take it to their meeting next Thursday to discuss it as she said it is borderline whether surgery is the best plan or not. So it will be surgery or epidural and I have said that I will do whatever they decide then. She said that when they decide she will put me straight on the appropriate waiting list and write and tell me what they have gone for. Right now I don’t really care as long as something happens and I can get out of the doing nothing limbo I feel like I am stuck in.

As for how I am now, nothing has changed, still getting pain in my back and down my leg. Still tingling down both legs and still getting horrible pain in my foot and toe. No new symptoms though which is good. I still haven’t managed a full day at work in the office, if I stay later than 2pm it means a rather painful drive home and rough night. My attempt to stay till 4pm last Friday resulted in hardly any sleep and wrote off my weekend and I have just about got things back under control now. I am starting to worry about how long my manager will put up with me disappearing to work from home every afternoon. I feel worse now than I did before the Schwannoma was removed, at least then I managed to do full days in the office right up till the day before I went off for the operation.

To be honest I am now thoroughly fed up. I want to do a full day in the office (sad I know but I like my job). I want to be able to do a Tesco shop. I want to not have to worry about how close to somewhere I can park because walking makes things worse. I want to be able to drive down to Portsmouth and see my friends. I don’t want to be worried about it going again. I want to not wake up when the painkillers wear off at about 3am. I want to get back to swimming, doing nice long walks and take my Guides camping. ☹.

Sorry I needed to have a moan and get it off my chest.

On the bright side at least one way or another something will happen and that will feel like a step in the right directionm!

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Do I rattle yet?

I think I am taking rather a lot of painkillers, I guess many people take more but this feels like a handful to me.

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This is my evening mix that, if I am lucky, keeps me comfortable enough to sleep for most of the night.  Although I often end up taking some more around 4am.  Roll on my neurosurgery appointment and hopefully a plan to sort out this stupid disc.

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It is frustrating waiting

Well I wondered if I would get a reply from my physio (the guy I don’t like much) and it came today. Funny how “struggling slightly” has become “struggling quite badly” and he also mentions “obviously there is a justifiable reason for your ongoing pain”…

At least I feel like he believes me now. Hope he doesn’t snoop on the web and find this blog… If he does, I’m sorry but I have felt like this guy thinks I was wasting his time since I saw him in September and it has messed with my head. Part of me wishes I could tell him… oh well…

Now all I can do is wait for a date as I have been told not to do anything, especially anything that makes it worse. It is very frustrating!

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Roler-coaster of a week!

Last week was a bit of a roller-coaster of a week. It started with having an MRI on the Saturday, which was to hopefully show nothing but scar tissue from my previous back surgery as causing my pain. Fiona came with me and I am very grateful as I know I don’t like MRIs and it really helps knowing that someone is outside waiting. The guy who did the scan was really nice and kept talking to me while I was in there, even though I couldn’t hear him properly due to the ear plugs knowing there is a voice helps keep me calm. Apparently they don’t usually do contrast scans on Saturdays but I as I had had it twice before and no reactions he still did it so I didn’t need to go back again – phew! Afterwards Fiona and I had a bit of lunch in the pub I call “Pizza Pub” because they do pizzas, yummy ones, so as far as I am concerned that is a good name 🙂 I was relieved to have done the MRI tunnel.

As instructed I phoned to say it was done as then the “super triage physio Jeremy” (no idea what his actual title is but basically he can access other departments and tests which the normal a physio can’t, apparently) would look out for the results.

Phone call number one was on Wednesday morning with the provisional results. The good news is there is nothing sinister, my biggest fear was another schwannoma so I was very happy to hear there is nothing like that again! Jeremy did say, however, that the report said there is a slipped disc but he was confident that the recommendation would be conservative and rehabilitation. Not quite what was expected but it didn’t sound too serious and Jeremy seemed confident it would all be OK, although did say this was only the provisional results and not the full report and he hadn’t seen any images. At this point I was pleased as it sounded like all was going well.

Phone call number two came on Friday afternoon. I was a bit surprised to hear a New Zealand accent when I picked up the phone as I thought it was someone from work, then I realised it was Jeremy again and he had the full results. So now the word “significant” was placed in front of the words “slipped disc” and the phrase “not too happy with where it is”. Oh dear. So now Jeremy is writing to the Neruosurgeons to get them to have a look, he did say they may or may not want to operate, he isn’t too sure but he thinks they need to check it out. So that was not what I expected or wanted to hear. I put the phone down and cried and then went to see Tom, Fiona and Eilidh because Eilidh cuddles are the best and she always makes me smile 🙂

Yesterday I composed an email to the physio who is supposed to be looking after me. I don’t like him, he is arrogant and patronising and I get the impression he think I am a time waster. In his last email he used the phrase “struggling slightly” in response to my email to say my back had gone in the same way as it did in August and I was again struggling to get around the house. I resisted the urge to write “ner ner ne ner ner, there is something wrong” on the bottom, well I typed it and deleted it before I sent the email.

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Not the Wednesday I expected!

Things had been going well. I had had a great week camping at New Wine and my back was behaving well and standing up to the walking and camping without me resorting to more painkillers.

I had a slight slip in some mud and rain on the Monday evening (I had been more worried about whether I had scratched my car or not) so a slight increase in pain on the Tuesday was kind of expected and OK. I had gone to work as usual and thought nothing of it. I woke up on Wednesday and made lunch for work and ironed a top to wear and headed up stairs to finish getting ready before dashing out the door. My back, it seems had other ideas.

As I straightened up after brushing my teeth there was a sudden surge of pain right in the center my back which made me buckle and end up on the floor of my en-suite. Here I lay, in my underwear, wondering what to do next. I tried to get up but the pain was excruciating and I was in agony just lying still. Oh pants, why did I shut the en-suite door?

After 40 painful minutes I had managed to open the door and drag myself, lying on my back, across the floor to the phone at the far side of my bedroom. Now what… Well I decided there wasn’t any option other than phoning for an ambulance and hope next door were in as they have a spare key.

Thankfully the neighbour was in and let the two ambulance men in, both called Chris. I was very relieved when they poked there heads around the bedroom door. They were very friendly and I was glad I had managed to struggle into a top. They tried some gas and air (which I really didn’t like) but it wasn’t enough to ease the pain so they radioed in for a paramedic who could give me something stronger. We chatted while we waited and one of them got me some of my painkillers, a drink and my mobile so I could text someone at work. A lovely lady paramedic came and after two shots of morphine I managed to get myself kind of vertical despite still being in quite a bit of pain. They got me down the stairs, onto a stretcher and then off to Addenbrookes we went.

In A&E they were more concerned that my pulse was over 150 than my back so I was quickly wired up to a heart monitor and I lost count of how many times they took my blood pressure. Eventually I saw a doctor who not only called me “interesting” but also chuckled after he mentioned going home. Apparently my pulse dropped by 30 at the mention of going home which he found funny and decided that they could then stop worrying about my pulse. I had told them it was because I don’t like hospitals but they didn’t believe me 🙂

So I was allowed home with some Tramadol and some crutches and a lovely friend and her daughters came and collected me from A&E.

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God in my hurting

I received a New Wine magazine a few days ago and it has reminded me that a need to book for this years Summer Conference. Better book the time off work…

Having put the magazine to one side I decided yesterday to have a read through. One article jumped out at me (you can read it here http://www.new-wine.org/free-media/magazine/399-god-in-my-hurting) It was titled ‘God in my hurting’ and the summary talked about living with long term illness in a church that believe in healing. This is something I often think about and have discussion with people about in the past. In the article Liz Carter talks about her experiences of living with a chronic lung disease. A lot of the things she talks about mimic my thoughts and feeling since suffering from chronic back pain.

I have come across people in the past who believe so strongly in God’s healing power that they suggest that if you have not been healed it is because you haven’t prayed hard enough or your faith is not strong enough, which just makes you feel even worse as then not only do you have the suffering but also the guilt that it is because your relationship with God is somehow just not good enough. Just as we do not have to earn God’s grace or love I don’t believe we earn God’s healing. Why is it so hard for people to realise that this world is broken and so are we and that God does not always intervene and fix things and also a full healing may not have happened but that doesn’t been that God is absent from the suffering.

The thing I find hard is what Liz touches on in her last paragraph ‘Living in hope’. It is hard to continue to hope for full healing. I know God can do anything but after years of asking for him to remove my pain I find myself now asking for help in dealing with it and acceptance. Is this wrong? Should I still persist with asking for that full healing? Does it mean I have given up all hope of that total healing? I don’t think I can answer these questions at the moment. I just know that I agree with Liz’s final words “God is in our hurting as well as our healing. You can be assured that God listens and God loves. And sometimes that is enough.”

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Reflecting…

I have been thinking and reflecting a fair bit this week.  Last Sunday was the anniversary of two years since my operation.  The two year point was always going to be a milestone as I was told that it could take about that long for the nerves to settle down and heal.  It was suggested that things could always improve after that but that as time went on it was more unlikely. 

Two years ago I hoped the surgery would be a total cure from the pain I had before and that I would have no lasting effects, it is now clear that although the pain is much less that before that my dream at that time is unfortunately not reality.  I am still in a fair amount of pain and now find it hard to remember what it is like to not feel pain and I still have numbness in my foot and other sensory loss and a big toe that does not function fully.  I have learnt to accept this and the get on with life.  I have accepted that life is easier with painkillers and now take them regularly rather than trying to cope without.  One of the hardest things has been for me to admit to myself that this is how I am and that I can’t always manage to do things that I used to and that it is OK to admit this and say to people “sorry but no I can’t lift that table” rather than doing it and suffering for my stubbornness.

Last week at the women’s day we were all given a little gift of a bag with beads and sparkles, a magnetic word and a verse.  Each one was individual as they all had different combinations.  My verse was “God is able to accomplish infinitely more than we might ask or think” Ephesians 3:20.  Since then it has been on my mind as I often wonder why God didn’t fully heal me and why I still have constant pain to live with.  Over the last two years I have learnt to accept that God doesn’t always do what we ask for or respond to our prayers as we would like Him to.  He often answers them in a different way to what we want, but he can still do amazing things and works in our lives and in lots of ways He has done more than I could have asked or imagined.

Several people have asked me how I cope and how I stay so strong.  I sometimes wonder how this is as I wouldn’t class myself as a strong person and if someone had told me what my future would be two years ago I would have said I wouldn’t be able to cope.  All I can say is that God gives me the strength and courage to face my problems and carry on.  On a bad day I thank God that I can still walk and that I can still carry on a normal life as I know that it was a real possibility that this wouldn’t be the case.  So many people prayed for me while I was in hospital, friends and people I didn’t know, and I know that God was with me and looked after me at that time.  I felt so at ease when I went down for my operation, I knew that I couldn’t do anything and it was all in His hands.  As someone who hates to stay in bed even when I am ill I knew that having to be lying flat for 4 days was going to be really hard but some how the time flew by and it wasn’t as bad as I thought it would be and I even managed to escape from hospital a day earlier than planned so things were pretty good really!  I was so blessed by those around me, my friends were brilliant!  I don’t think I really realised how many amazing people were around me and how much they cared about me and I am so blessed to have them as my friends and I will always be thankful for them and the care that they showed me.  My Mum was amazing too, I know she found it hard not to fuss and she found it really difficult to see me ill but we also had six weeks together where we enjoyed each others company and grew closer to one another and we wouldn’t have had that time if I hadn’t been ill.  What I am trying to say is that although God didn’t heal my pain totally He has helped me is so many ways and I have learnt so much in the last two years and that is some ways he has done more good in my life than I could have imagined so it hasn’t all been bad at all! 

In case you are wondering my magnetic word was paradise and I know that one day I will be in paradise with God and then I will no longer be in pain and will be free of my earthy body.

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After 2 and a bit years of appointments at 6 different hospitals it might all be over soon!

Today I had my first and hopefully my last appointment at Addenbrookes hospital.  I went to see a Neurosurgeon as I had been referred by the one I used to see in Southampton.  She was very nice and explained things very clearly and make me feel relaxed and at ease.  She explained that in her experience she has never treated someone with a recurring or secondary spinal Schwannoma where the surgery had successfully removed all the tumour (she assures me she has seen a few).  As a result she wants to check my original scan, my latest scan and the histology from the removed tumour (which don’t seem to have arrived from Southampton yet – how long can it take!) but assuming these are all as she expects she will discharge me!  YAY!

That was the best bit of news.  We discussed my remaining numbness, tingling and pain and she assured me that these are all normal following my experience.  She does think I may benefit from some more physio especially to try to help with the problem I have been having with my ankle.  Her other advice was loose weight, exercise, take care of my back and realise that my back will always be weaker than normal and I will always need to look after it more than your average person.

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