Now this is a sign I honestly didn’t think I would get to see this year. But I did and I’m writing this from our holiday home for the week near Porthleven. I’m in bed though as the last few days have been busy, busy, busy and I’m exhausted. But I’m in Cornwall with my family so I’m happy.
Before going away I had a super busy day. Big Girl was going to school to collect her exam results and because of bloody Covid she had to book a time slot rather than just turn up like we all did in pre-pandemic times. She booked her slot ages ago and as is always the way with my life, the law of Sod came into play because I was sent a letter with an appointment at the gynaecology clinic at exactly the same time. I tried to change it but the clinic was full so I resigned myself that this was going to be yet another life moment that I would miss as a result of my illnesses. But then a couple of days before the clinic called and told me that unfortunately they had to change my appointment time from the morning to the afternoon. Well it wasn’t unfortunate to me- it was bloody brilliant. So I got up, dropped Buddy off at the dog sitters for his holiday and took Big Girl to school to see if she’d passed her exams.
Yes, Buddy will be at the dog sitters while we are away. No, we never take him on our summer holiday. A lot of the beaches aren’t dog friendly during summer months, we are away with all Hubby’s family so organising 16 humans is like herding cats without adding dog walking into the mix and worrying about him getting heatstroke on the beach. So he goes to the dog sitters where he gets to play with his four legged friends and be spoilt. And even though he gets his pick of dog beds while he’s there he always chooses the smallest one! I have a labrador that thinks he’s a Chihuahua 😂
Big Girl not only passed all her exams, she bloody smashed them and got amazing grades. Me and Hubby (or is that Hubby and I?) are so, so proud of her. The last 18 months has been a lot for everyone but I think it’s been especially tough on young people. Homeschooling, not being able to see their friends and being stuck in a house with their parents at a time in their life when they’re supposed to be breaking away from their parents and finding their way in the world. And added to all that Big Girl has had the worry of me being really unwell and being in and out of hospital for months on end. So for her to do as well as she has is a testament to what a strong young woman she is. Hopefully this resilience will stand her in good stead for life. I do have to get on my soap box a little bit though cause all over the media it’s been reported that these kids have scored record grades without sitting exams but any parent of a year 11 or 13 child will tell you thats bollocks. These kids have undergone so many ‘assessments’, which are basically exams under another name, they’ve taken them earlier in the school year than they would have done if they had sat the ‘proper’ exams and been under a huge amount of pressure. It’s not simply been a case of a teacher sticking their finger in the air, deciding which way the winds blowing and giving them any grade they feel like. These kids (and their teachers) have worked bloody hard and if there are record A’s and A*’s this year it’s not because the teachers have dished them out like smarties, it’s because the kids have worked for them w deserve them. Rant over. And breathe…
As I was driving home from the school I got a phone call from the hospital. Every time this happens my stomach flips cause I never know if there’s going to be bad news and I will be summoned back. I honestly live in a state of constant fear of being readmitted at the moment. When I answer it’s the gynaecology clinic asking me to come in two hours earlier for my appointment because the Consultant needs to discuss the results of my Dexa bone scan with me. I had the scan back in June (read the blog post here) and I was supposed to have an appointment in July but then I got my line infection and was too poorly to go. Having been around the NHS block a few times I knew that if they were ringing to bring me in to see the Consulant it wasn’t to tell me that my bones were looking fabulous so I prepared myself for bad news.
And bad news was exactly what I got.
So the Dexa scan shows that I’m on the verge of osteoporosis (called osteopenia) and obviously that’s not good. Osteoporosis, or brittle bones as some people know it by, is when your bones weaken and are more liable to breaks. Given the fact I had two spinal fractures as a teenager and two spinal surgeries some of my bones are already in poor condition so developing osteoporosis isn’t ideal. It would appear though that being in the menopause (albeit a needle induced one to control the endometriosis), having had lots of steroids in the past and being on TPN is the perfect storm for developing osteoporosis. So now I’m having to start HRT in the faint hope that I will absorb some of it and it provides some protection to my bones.
While with the consultant she suggested that getting my ovaries removed might be a good idea. This would be a long term solution to the endometriosis and put me into a permanent menopause, meaning that I don’t need to keep having the injections. She did say that they would normally do a full hysterectomy but given the “state of my insides” (her words 😂) it would be too difficult and risky but that they “might be able to locate the ovaries and just snip them off” (again her words!) I told her that there’s a plan for me to have bowel surgery so she needs to get in touch with the bowel surgeon as it would be ideal to get the ovary ‘snipping’ done at the same time as the bowel ‘hacking’. The last thing I want is to have two separate surgeries and the consultant agreed so fingers crossed the NHS can work it’s magic and make that happen.
After the gynaecology clinic I went up to the gastro ward to get my blood tests done. Because they couldn’t bleed me at the GP surgery because of my super shitty veins they offered to do it on the ward because they could draw blood straight of my Hickman line instead of me having to be pricked a million times. But only the trained nurses on the ward can take blood from the line as it has to be done using the sterile technique and the majority of nurses (and doctors) aren’t trained to do it. It felt strange being back on the ward wearing clothes instead of shuffling around in my pjs and knowing that I was just popping in was the best feeling ever. I took lots of cake in for the ward staff because one thing I learnt from being an inpatient for months on end is that cake makes them all happy. I had a good catch up with all the staff- I do miss them and the updates on their lives…but not enough to want to be back in there.
After having the blood tests done I happily skipped out of the hospital. Next stop in my busy day was back to the GP surgery to pick up my repeat medications for holiday. It has taken 3 prescriptions, numerous phone calls and one letter to finally get the supply of morphine tablets I needed to bring with me to Cornwall. Even after explaining how many tablets I take on a good day, how many on a bad day, what that averages out at and how many tablets I therefore require for my 16 days away I still wasn’t given the correct prescription so it’s felt like a battle. And when I get to the pharmacy next to the GP surgery I’m told that they don’t have any in stock. So I’ve had to stick the prescription in my purse and will have to find a local pharmacy to get them from while I’m away.it just frustrates me that something so simple becomes so difficult. I explained on numerous occasions that with the painkillers I’m unable to manage and would therefore need to be admitted to hospital for pain management. Not something I want to happen when I’m in Cornwall and especially not when it’s something I can deal with given the correct medication.
After that battle ended it was time to go to the hairdressers. It must have been about two years since I last had my hair cut partly due to Covid and me shielding, and then being in hospital but even prior to that I was too unwell to make it to the hairdressers. My hair was so long it was becoming exhausting to wash it and manage it every day and it’s also falling out in handfuls either due to the TPN or because of a deficiency (which the blood tests will tell if that’s the case). Getting it cut felt amazing and it was lovely to have that hour of pampering. Here’s the before and after photos…
After the haircut the 4 of us went out for dinner with my parents to celebrate Big Girl’s exam results (and also so I didn’t have to cook!) This time wasn’t as weird sitting there while everyone was eating- hopefully it will be something I just get more confident with as time goes on snd the more I do it. When we got back home it was the final push of packing ready to get up at 4am the next day to do the drive and miss all the traffic, which we did. That night though I think I was really overtired and in a lot of pain so I didn’t end up sleeping at all and when my alarm went off at 3.30am I knew it was going to be a long day.
The drive down wasn’t great from my perspective. I was in a huge amount of pain and having bowel issues so we needed to make a few pit stops at the service stations. But we arrived just before lunch and spent the afternoon in Falmouth before heading to the house we have rented just outside Porthleven. The house is amazing- it has its own pool, hot tub and swing and slide set so the kids have actually put down their devices and are enjoying playing with their cousins. I’m really looking forward to just having lots of quality time with the kids and the rest of the family and I’m praying that I don’t take poorly down here and need to go into hospital. Let’s see…🤞🏻
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