With the night comes…

Ahh it is one of those evenings. I shouldn’t really blog. I should call a friend or watch a romcom or something like that to take my mind of things. But Ray is out tonight and I think it is too late to call my Mum (she would insist it is never too late to call her).

The girls have driven me a bit bonkers today and I had a short fuse. I snapped at them. Then ensues a not very friendly exchange of accusations followed by making up and going to bed but whereas peaceful sleep comes to my children pretty quickly, I am awake and brooding over the day. Or more precise the last days.

I have written a few times about Vega and her weight as well as her eating. It has been such an ongoing issue and over the last six or so months it has gotten worse and worse. A few weeks back the tummy aches she always had on and off, became very regular, ie daily, often accompanied by vomiting. I spoke to the doctors, consultants, nurses… pretty much anyone who dared listening. I felt I was at breaking point. On a very bad day that started with pain and vomiting and bad blood counts I did what had been unthinkable and unspoken up to that point. I called our oncology nurses and told them I needed to know if Vega was ok. I needed to hear from them that they would notice if something was going wrong, if Vega showed signs of a relapse. I needed the reassurance that they have this whole shitty thing under control. That they are not missing something. I needed to hand over the reigns because I felt exhausted from keeping everything in check and I was so very worried that if I don’t watch out, hoover like a hawk, they would miss it. I felt so let down from everyone for not being able to give me any answers about these stomach aches that I felt I had lost trust with them altogether.

Then almost four weeks ago Vega started Maintenance Cycle 4 and as per treatment plan we went to see our consultant at the Marsden. I think by then I was conveying enough desperation for her to listen to my concerns about weight, eating and pain in earnest. As if it just suddenly came to her she suggests Vega might have a stomach ulster and that sometimes eating helps to soothe the pain of such. Eh doh!

Why the heck has no one ever though about this before? I have quite literally been tearing my hair out these last MONTHS trying to figure out why Vega was so poorly with tummy ache and so obsessive with food. She now weighs almost as much as her seven year old sister and still has a few mobility challenges when I need to help out. Her weight has become unmanageable for me- I often feel like I am lifting a sack of wet sand, I guess that is because her general muscle tone is very weak and she is pretty limp.

We where referred to the Gastroenterologist at Kings and Vega was put on course of Proton Pump Inhibitors (anti acids) and- tada, we had a miraculous recovery. Tummy aches are almost gone and she is eating so much less! She will be on this medication for six-eight weeks now, then it is stopped and we shall see from there. She might need an endoscopy in the future but we will deal with it when it come to it.

At the same time as all this is going on I am not feeling so well myself. I had various issues this year but at the moment I suffer from sore joints. Some of my knuckles on my hands and feet are sore, swollen and inflamed, as well as my wrists. Some morning it was so bad I had to ask Ray to do up my trousers for me. I have been checked for various stuff, had blood tests but everything came back negative. Nothing complains the pain and inflammation so I am now waiting for an urgent appointment with the Rheumatology Department at- dum dum dummm- Kings. I am so desperate for some respite and have enjoyed swimming in the Lido this last week, I also desperately need some exercise, but my joints just seem to have gotten worse and worse. So it is not just the pain that is making me feel down but also the fact that I am not really able to do anything to get away from it all.

Last but not least, I took Alys to her 2 year developmental review this week and the Health Visitor kept quizzing me about Alys’ talking. She didn’t say anything while we were there, I guess that is not unusual but we have been referred to the Speech and Language Therapist because I reported that Alys definitly doesn’t use between 200-400 words. She is talking a lot of jargon- this is how they call the Toddler type babble but she is actually not saying many words. We have always found her talking quite amusing, it is very cute, but tonight I feel terrible. I have invested so much time and energy in dealing with Vega, especially in regards to this bloody stomach problem these last few months, could I have really completely missed that my 2 year old has a speech problem? Alys is a real challenge, I find it hard work to look after her. I always thought it feels like this because I have a lot on my plate. But now, after the comments of the Health Visitor, I am worried I that I mistook her frustration about communication with naughtiness.

All this is giving me headaches, and then I can’t sleep. Many people have commented on my last post “why” that they are worried I am blaming myself too much. That I am taking blame for things that are completely out of my control. Well I might be guilty for that once again! (Haha)

But I have also come to the realization that seeking blame in myself would be the easiest solution to my problems. At least in a way. If only I could identify the fault, my fault, then I can stop and change. Then I could prevent the cancer ever coming back. Or I could reverse my toddlers language hang ups.

Because what else can I blame? The most terrifying thought is that there is no blame, or at least not one that I can see. That all this is down to fate. And what would that mean? It means I must surrender to it. And I am not in the most acceptable kind of mood right now.


5 thoughts on “With the night comes…

  1. Hey! I think that HV was completely out of line…. you’ve got a bilingual child, right? Also younger siblings don’t need 200-400 words to communicate, their older siblings get all they want to say and quickly oblige! It’s a known phenomenon! I have taken my 2 year old for the same review to the local HV team and while there were about a 100 questions, the figure of 200-400 words was nowhere to be seeb, It’s a lot of words and I must say I have not met a 2 year old so eloquent yet (and I meet a lot of 2 year olds on a regular basis!). I am sorry thid experience has really kicked the floor out from under your feet. You are amazing, my friend, and your children are intelligent and amazing too.


  2. Oh Honey my heart aches for you – how fed up you must be and drained from it all. and the bloody effort of holding all the supposed professionals together (so know that one) to find a stomach ulcer – ouch!!

    it feels like your whole system is inflamed with the worry of it all. Please feel you can call me late at night (generally always up and joining you in the crap sleep). not sure if it will help but i know a homeopathis mixture of Rhus tox, Ruta and Arnica in a 30x tissue salt form(dissolves under tongue) is great fro joints and ligaments – you can order over the phone from Helios pharmacy in covent garden – 020 7379 7434 helped me when my joints were bad. think a few months worth was £7 and it comes thru post.

    yes surrender so easy to say so hard to do!! a constant daily challenge for me.

    you are always in my heart and wishing i could help more.

    hugs hugs and more hugs
    sue xxxxxxxxxxxxxxxxxxxxxxxxx


  3. Liebe Kathi,
    natürlich machst du dir Vorwürfe… und weißt du was? Diese würdest du dir auch machen, wenn Vega kern gesund wäre. Irgendwas wird immer sein, dass man sich Sorgen macht. Die lieben Kleinen machen dann doch irgendeinen Mist, handeln sich doch mal Probleme ein, haben eine Lernschwäche und und und. Und warum ist das so? Weil du eine gute Mutter bist! Ein Mensch, der das Beste für seine Kinder will und nun mal leider in einer echten Extremsituation lebt und damit klar kommen muss. Der eben auch nur ein Mensch ist. Das klingt natürlich fad, was ich hier schreibe, ist aber eine nackte Tatsache. Wie soll man es denn besser machen? Von außen kann man vieles sagen, man erlebt es ja nicht täglich, so wie du. Und ich bin mir sicher, dass mit Alys alles in Ordnung ist, sie braucht vielleicht einfach nur mehr Zeit und sie erlebt den Alltag nunmal auch anders mit, wie andere Kinder. Sie haben keine ältere kranke Schwester, das kann man doch nicht vergleichen. Und ich bin mir auch sicher, keine deiner Töchter würde anders handeln, sie bekommen sicherlich das Beste von dir mit.
    Ich hoffe, meine Worte machen dich nicht noch verzweifelter oder noch schlimmer: wütend.
    Du handelst das alles unglaublich! Ich wüsste nicht, ob ich diese Kraft und Stärke aufbringen würde, einem solchen Alltag zu begegnen. Meinen Freunden, denen ich von dir erzähle und denen ich auch deinen Blog nahe lege, geht es dabei nicht anders. Vor allem denjenigen, die gerade ihre ersten Kinder bekommen – schön ist sie die Freude, über die Schwangerschaften, aber man darf sich auch mal mit diversen Realitäten konfrontieren… ein bisschen Nachdenken über “Was wäre wenn…” hat in meinen Augen noch niemandem geschadet.
    Du bist schon, ohne es vielleicht zu wissen, ein unglaubliches Vorbild! Ich hoffe, das gibt dir ein wenig Kraft!
    Alles Gute, diesmal aber in erster Linie für dich. Meine guten Wünsche und Gedanken gehen heute erstmal nur an dich und mal nicht an deine Mädchen. Und daran ist auch nichts Schlechtes zu finden!


  4. never too late to call me
    surrender, what’s that? aaaah, life is hard, sometimes it never seem to let up
    I can totally identify with your desperation and the worry about you also not being well – given the stress you have been under for months and months I’m not surprised your body is cracking up and giving you pain signals: you’re not a machine! nor infallible, nor guilty, either
    Good that finally Vega is getting better on the eating front, infuriating it took so long – you know Kathi, sometimes you just need to rage on!
    always thinking of you – and shall see you in a week for a super big hug and a proper chat


  5. Liebste Kathi,
    it sounds like things are moving on and coming out and part of that journey is a lot of pain and struggeling…for many of us.
    but through dealing with things, things can be resolved and there is change.
    so hold on ….
    its good that you have come to the bottom of vegas upset stomach.and im sorry that it took such a long time,but how can you know?
    I was in a similar situation recently after matilda has gone through a period of throwing up on and off for three weeks and I treated her with homeopathy for food poisoning….throughout all this time I took her to the gp various times with no enlightment,until i finally taken her to kings and it came out that she had a bad bladder infection….
    its great alys starts to work with a speech therapist, but also children do grow and develop at different times.my friend son didn’t speak a word until he was three and now (13) he is a very intelligent and articulate boy….and not to mention well spoken.
    also thinking of alys…being the youngest,and with vega being ill,she is maybe finding it difficult to find her voice
    I think blaming our selves is giving us the illusion to have control over situations when in fact we can not be fully be in control.
    yes surrender…but its so hard and painfull.
    we need to find ways to help us at all times to get us through this in the best possible way.
    in regards your joints its just a thought don’t know if possible…but once a month at the church in Vauxhall they do women full moon dances.next one is on the 22nd of july.maybe if ray can take the girls for the evening and you can just move a little that could maybe help….
    I mail you the details.
    liebe kathi, call anytime…
    always thinking of you and the girls
    wishing you from all of my heart the very best


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