Not Good

Well, there’s no easy way to share the disappointing news that Mr H gave me and Graham yesterday afternoon, so I’ll just jump right in.

The squatter is lower-grade, as expected (grade 2). While that is better than having the aggression of a higher-grade tumour, there’s currently no cure (i.e., no ultimate Brexit). We are therefore looking at the best way of “managing” the tumour, which means removing/zapping as much as they can to give me as long as possible before the disease progresses.

At my request, Mr H gave us the average life expectancy for my tumour type. I am willing to share this with anyone who wants it. However, as it’s not something you’ll easily be able to remove from your brain (see what I did there), I am not putting it on here just yet. I will tell you that it’s a longer expectancy than it could have been because it’s lower-grade, and that’s a sliver of a silver lining in the midst of a very dark cloud.

Of course, there are no guarantees of the silver lining anyway because the expectancy comes from statistical averages on the bell-curve of this curve-ball. I could be below the curve, smack bang in the middle, ahead of the curve or anywhere in between.

The truth is that not one of us knows how long we’ve got on the Earth. Unfortunately, I now know I’ve got less time left than most.

Schedule of Works

As to the initial steps for “managing” and hopefully reducing the size of the tumour, they are:

1) a neurological function test MRI scan, during which they will ask me to move my right side in a particular order to identify which specific parts of my brain are controlling which movement and how this relates to where the swelling is – the scan will help Mr H plan my next surgery with two aims: (a) excavation of as much of the Squatter as possible; and (b) not further inhibit my mobility;
2) surgery on 13 October – this will be the Hannibal-esque “awake” experience that so fascinated me – as stated above, one of the aims is to remove as much of the tumour as possible; this for both the obvious reason of wanting to minimise its size, but also to make some room (hopefully) so that when I have radiotherapy, which causes swelling, the side effects of the swelling will hopefully be minimised;
3) my brain will need about 4-6 weeks to recover from the surgery before it will be ready for radiotherapy – the idea of the radiotherapy is to zap as much of the Squatter as possible – the radiologists will decide how much radiotherapy to give me so I won’t know that until I have an appointment with them (to be scheduled); and
4) I’ll be having an appointment with oncologists (again, to be scheduled) to discuss whether there are any chemotherapy drugs that they recommend trying for my tumour type – any chemotherapy would come after radiotherapy.

Release to Rents’ Residential

I was released from hospital and safely transferred into the capable hands of my wonderful family at about 6pm on Friday. This was around the same time I had been discharged two weeks earlier after my biopsy. I felt the same extreme fatigue not long after I arrived at the Rents’ house as I had experienced two weeks ago. Happily, though, I didn’t end up back in hospital eight hours later as I did then (I’m still here at the Rents’ more accessible house).

I had not made it back in time to see Leo, but I did make it back to fulfil the promise I made to Jennifer on Thursday that I would see her on Friday at Grandma’s house. I didn’t last past 7.30pm before needing to sleep as I was completely wiped out. The staff at the RVI warned me of fatigue after my biopsy and even more so after all the seizures. After two weeks of the calm routines of hospital, it is amazing how much it tired me just sitting in the car for 20-30 minutes (it tires me more sitting as it takes more effort to keep my foot and leg stable than when I lie down. I think the assault on my senses of the movement around me during the journey tired me quite a lot too.

Thankfully, I slept better last night than I have in ages and felt better for that today. I haven’t needed food overnight for a good few days now but I’m still not sleeping for longer than 2/3 hour stretches. I think that this is partly because it’s become a habit to wake up needing food but predominantly because the steroids are trying (and succeeding more than I would like) to keep bringing me out into the Wide Awake Club.

I took it very easy this morning. Apart from having breakfast in bed with Jennifer, I just rested. I then shared lovely sticker, puzzle, drawing and writing times with my girl. It’s harder to play with Leo, because he wants to be off walking, crawling and generally exploring, but hopefully increased movement will allow more as the week goes on.

Initial Reflections

As much as I hoped for a more positive outcome, since the brain tumour diagnosis, even with the lower grade indications, I’ve suspected that the Squatter is going to get me in the end. Consequently, I had it in my mind that it was perhaps the case that the biggest “wins” we might realistically achieve would be a long enough time:

  1. to leave as large a written, video and photographic record for the children to tell them as many things as possible that I would want to share with them in person – I’m thinking of including memories of my happy childhood with Uncle Graeme and the Rents, stories about me and their Daddy, including how we met (short-form: I traded in my Porsche and got Graham), places I’ve loved, books I’ve loved, and stories about them as babies/children; and
  2. for the kids to remember me – this is obviously going to be harder to achieve with Leo (currently 10 months) than with Jennifer (who will be four in January).

Writing that was not easy, and the fact that I’ve been forced to think like that is upsetting. There is also the obvious point that even beating the bell curve is never going to be enough either for me or the children. Leaving some form of record is important to me but it’s not going to make up to them for losing their Mam and I can’t see how I can die in peace knowing I’m not going to be here for them. I also, to be frank, don’t want to die so it’s not easy thinking about that for so many reasons.

The thing that made me cry first, though, which is also the thing that makes me feel the most infuriated, is that I can’t bear for my parents to have to go through this again. I decided that I wanted to be the one to tell them so I rang and broke the news to my Mam for the second time in her life that a brain tumour (albeit a lower-grade one this time) is going to be the cause of such sadness.

It’s still only Day 2 and I’m not feeling the same all the time. I have had two or three distinctly upsetting and, in some respects, panicky moments when thoughts race around too quickly to focus on any one thing.

However, the majority of the time, my overriding feelings (in these very early days) have been:

  • This is far from what I’d choose. It’s a bit of an understatement to say that you don’t always get what you want in life, but then I already knew that.
  • However, I’m grateful beyond words for every blessing I’ve had and continue to have in my life, not least my incomparable parents, hubby and children, and also my great friends.
  • My focus has to be on achieving the “wins” set out above, which might be a lot more than some parents are able to leave.
  • I’ve got to take things one step at a time.
  • I’m grateful that I’m not currently in any pain and that movement has improved exponentially again today.

Twilight Walk That Won’t Be

As some of you might know, Graham, Jennifer, Leo and I were due to take part in the Brain Tumour Charity’s Twilight Walk in Chester next weekend. I had wanted to do some fundraising for the Charity as a family to mark a decade since Graeme died. The money raised was to go specifically to the Charity’s supporter group set up in my brother’s memory.

I hadn’t shared our fundraising page with anyone when this drama started. It won’t surprise you that we are not going to be able to take part given recent developments. As long as you understand that you would be sponsoring us for a walk that we are not going to do, now seems as good a time as any to share a means of donating to the Charity closest to my heart (and head!) so here it is. Milking 101 right there.



15 thoughts on “Not Good”

  1. How the hell did you write this Rachel? God knows it was hard enough to read it. We will come visit you and not know what to say. So maybe we can just hold you and cry until the anger goes and the love takes over.
    Mike n Pauline xxx

    Liked by 1 person

  2. Rachel, I just don’t know what to say. Have shed so many tears since reading your eagerly anticipated test results confirmation blog, it has taken me until now to process the information. Unlike you, I had imagined, dreamt, wished, prayed for a curable outcome, so had not prepared myself for this. You are truly an awesome, amazing lady to be able to think so rationally and I love you for it. I will see you during this week, please forgive me if my hard-fought strength in keeping up a brave face deserts me, I will do my best. Much love xxxxxx

    Liked by 1 person

  3. Without doubt, that was the most difficult read I’ve ever experienced; how you managed to write it, Rachel, is unbelievable. You are truly amazing, your strength is boundless, your inspiration to all is wonderful….I could go on, but I won’t. I haven’t been able to stop thinking of you, and will continue to think of you and your tremendous family. Much, much love. Xxx

    Liked by 1 person

  4. I know Rachel is my daughter but how she can write this is beyond me. I have so much admiration for her and this gives Anne and I the strength to go on. Rachel asked me to proof read this blog before she published it last night so you can imagine what that was like for me with Rachel less than three feet from me. I only found one spelling error but hope you can forgive me if I missed others.

    Liked by 1 person

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