Week 1 at Hallwang Clinic

So that’s a week at the clinic over already and it seems to have flown in. First of all I’d like to tell you a bit about Tracey’s treatment.

Tracey’s Treatment

Immunotherapy is a relatively new cancer treatment and has been approved for various cancer types having been successful in trials. Unfortunately this hasn’t been approved for cervical cancer in the UK yet but ongoing trials should hopefully see it available in the future. There have been successful trials for cervical cancer in the US and I believe it has just been approved over there.

Immunotherapy boosts the bodies natural defences for fighting cancer. When you have cancer your immune system can’t see the cancer cells and so doesn’t know these are bad cells. Immunotherapy highlights the cancer cells as bad cells so your immune system can then destroy them.

Before we arrived, the clinic requested tumour samples so they could check for certain “markers”. They then design a treatment plan based on what they find.

Over the curse of the 2 weeks here she will be given a vaccine which is designed to train her immune system to recognise the receptors on her tumour as being foreign and to attack them.

She is also given an immunotherapy drug called Ipililumab which is designed to activate the immune system. This is an anti CTLA-4 drug that inhibits the receptors on tumours that inhibit the immune system.

In combination with this she is given an anti PD-L1 drug called Nivolumab . Nivolumab works as a checkpoint inhibitor, blocking a signal that would have prevented activated T-cells from attacking the cancer, this allows the immune system to clear the cancer.

These 2 immunotherapy drugs have been shown to work well in combination with each other.

As well as this Tracey is given daily infusions to protect her stomach, liver and kidneys.

We will need to return to the clinic 3 or 4 more times depending on how the treatment is working for her but these visits will only be for 3 days to get the immunotherapy infusions. The main part of the 2 weeks here is taken up by the vaccination process.

Our stay so far.

The clinic is really nice, the food is great and the staff are brilliant. We were given a nice apartment a stones throw from the clinic. The heat has been an issue and we had to change rooms to one that wasn’t directly in the sun all day as our room was like a sauna!

Tracey had shown signs of an infection when we arrived so she was put on antibiotics and treatment had to stop for a few days. They factor things like this in to your time staying here as they see this all the time so a few days to clear an infection doesn’t affect the treatment plan.

She was sick one day and the doctor thought this was caused by the antibiotic they gave her so they changed it and with a bit of rest she recovered. She is still quite tired day to day and her back pain has been an issue now and again but we have managed to stay on top of it for the most part.

It’s been about 30 degrees here everyday and we’ve managed to get out and about on a few occasions when Tracey has been able. Last Sunday we drove to a nice little place a few miles down the road called Freudenstadt. Pics below.

That’s all for now. I will post more soon. Thanks for reading.

Long overdue update! (Greg writing again.)

With such a crazy few months just past, I found no time at all to update the blog and to be honest it was the last thing on my mind. So where do I start?

We last left off with Tracey being in HDU after having surgery. Shortly after this I decided that we had to start fundraising to get her to Germany for Immunotherapy treatment. I was first put on to this treatment by a good friend Alan Gardner who had seen a woman on This Morning who had her treatment funded by Kate Winslet. She was now free from cancer so I decided to do a bit more research on the treatment itself and the clinic where it took place.

After some research I knew it was what we had to go for but with treatment costs being above £90,000 it was going to take a massive push to get us there.

A GoFundMe page was started and I also knew that Facebook was going to be important so I reopened my profile and made a fundraiser page.

Things literally took off instantly. Within 4 days we had reached £20,000 with people from all over Dundee coming up with different ways to raise money. Close friends and family were arranging events big and small with some still to take place yet!

Not long after this the local press were involved and this helped us further. National press were soon to follow and after we turned down an article in The S*n people from the city of Liverpool caught wind of this and they donated well over £10,000 to our fund with the Liverpool Echo running a story. We will be forever grateful to them for their generosity.

Tracey was out of HDU by now but she was still having issues with her bowels moving and she also had a urine infection. She wasn’t fully aware of what was going on outside her side room but slowly she started to see that going to Germany could be a real possibility.

The fundraising continued and within 21 days we had hit £80,000 and I still find it hard to believe. The total is currently sitting at around £110,000 which is incredible and, looking back, I’m glad we smashed the target as treatment costs are looking likely to go above this eventually!

Again we would just like to thank every single person who took time out of their own busy schedules to help us get to way beyond our target. Every donation whether it was big or small was greatly appreciated and we will forever be grateful to you for giving us this opportunity to get Tracey treated privately with this new type of treatment.

Tracey eventually got home and we thought we could start planning our trip but unfortunately, after a week and a half at home, Tracey started vomiting a lot and became very ill one Saturday night. She was rushed into hospital and a scan showed Tracey’s bowel was again blocked. They were unsure as to what was causing it but the scan showed it was blocked.

A surgeon came round to speak to us and told us that the bowel had to be rested for a good few days and hopefully it would fix itself. We asked him what would happen if it didn’t and we were told that it would be life threatening and she’d maybe never leave the hospital. That was pretty hard to hear and for the next 4 days we were all really worried.

Cue the words “I think I need a shit!”

After 4 days Tracey’s bowels righted themselves and we were all cheering her farts haha. Never been so relieved in all my life!

Tracey would spend a lot more time in hospital recovering. She eventually had her nephrostomies removed and after a lot of good days and bad days she slowly started to get better. She still has issues with back pain which seems to be related to her bowels. She takes a lot of painkillers now and her pan has improved but it still gives her major grief at times.

Ninewells were keen to keep an aye on her before she travelled to Germany and we can’t thank them enough for everything they done. We’d like to thank all the staff in the many wards Tracey has been in these last few months. They were amazing and we can’t thank them enough for their care and attention and also with their help in getting us to Germany. Absolute angels!

We eventually managed to book up for Tracey’s treatment and we arrived here in Dornstetten-Hallwangen yesterday.

I will be posting more on the blog during our time here and I’ll also explain a lot more about the treatment Tracey is receiving here.

Bowel surgery…

It’s Greg here, Traceys husband, for those that don’t know. Tracey was keen for me to update her blog with what’s been happening lately as she hasn’t really been well enough to post unfortunately.

Since about November Tracey started having issues with her digestive system. She would get really bad cramps and get sick. 2 weeks ago she got pretty sick and a CT scan on Sunday 6th May showed her bowel was being blocked and that surgery would be required to fix this.

Tracey was more worried about having and NG tube put into her stomach via a tube in her nose than the actual surgery. It’s a horrible procedure to get done but after a lot of tears and vomiting the tube was put down her throat via her nose and she got used it being there eventually.

The surgeon stated that surgery could be quite difficult due to her previous treatment side effects (scarring, adhesions etc) and that it was possible she may end up with a colostomy bag or in the worst case scenario they wouldn’t be able to do anything and she’d be fed liquids through a tube for the rest of her life. It was scary hearing all of this!

Tracey underwent surgery on Wednesday 9th May and fortunately it went better than expected. The blockage was removed, as was 10cm of her small bowel, and she doesnt need a colostomy bag. The surgeon expected the operation to take over 8 hours and he was finished in around 3 hours which was brilliant. These guys aren’t paid enough!

Tracey is now recovering in HDU in Ninewells. She’ll hopefully be home at the end of this week depending on how quickly she recovers. Can’t wait to get her back on her feet…!

We will be raising money for Tracey to get treatment at a private oncology clinic in Germany. They specialise in immunotherapy and this kind of treatment has had lots of success with Traceys type of cancer. I will post the Gofundme page link here once it is up and running. We understand times are hard for people at the minute but would urge you to donate anything you can to help us raise money to treat her.

Greg…

 

Update 🌚

So I’m back in hospital again BOOO. Got admitted two nights ago with a high temperature and a ‘rip roaring infection’ in my kidneys. I can only assume that it’s been caused by the nephrostomies I have capped off currently! I’ve still no word at all when they’ll be coming out or if they even will now that this has happened, it’s been over a week with no follow up but yeah that’s cool 👀👀

So currently in ward 32 again getting looked after. My left leg has also went swollen AF with my Lymphedema, well what I think is Lymphedema, but I have a Doppler scan at 11am to check for clots just in case. I’ve had a clot before so better to be safe and check for one again rather than miss it and drop down ☠️ lol. Here’s a pic of my leg last time I got a clot..😳

My trial appointment last week also got cancelled unfortunately. I got a call the day before to let me know they’d closed the study and they weren’t letting anyone else on it so that was fucking devastating to say the least. I have another appt with them tomorrow to see about any other trials in may be eligible for in the future so the door hasn’t fully closed on that so there is a silver lining there. Oh that appt may or may not go ahead depending on me getting to leave this ward actually, need to speak to someone about that ay lol good idea tracey.

So I’ll keep you updated on my results and hopefully this appt tomorrow. One last wee thing…I started this blog to take the pressure off of me and burkey getting asked all the time how I am but the opposite seems to be happening and we’re getting asked more. We, of course appreciate the time and the love behind every message but for us it’s tiring having to repeat everything so this blog really is the place to go for updates. Obviously still text us for tea, parties and all other miscellaneous shit 😂 we still want friends llf. It’s just tedious me and my health being the sole topic of conversation constantly as my life isn’t defined by this shit 💪🏼 much love as always ❤️❤️💛💛💛 xxxxx

UPDATE 2 – I have three blood clots, new record, go me 😫 I’m not getting out for at least 3 days and I’ll need to cancel my appt tomorrow and I am officially greeting and in a terrible mood. I’ll not be replying to anyone until I feel better so I apologise in advance ❤️

Down day..

I’ve shared posts where I’m positive about everything so today when I’ve woke up feeling shit the last thing that’s crossed my mind is to write a bloody blog. I’ve talked myself into it though as both times I’ve written it’s really made me take note and feel great so fingers crossed that happens today.

Well today I was supposed to be getting reviewed to get my driver off. For those that don’t know, a driver goes right into my arm with my painkillers. I’ll put a pic so you can see but I’ve been carrying this around for about 5/6 weeks now and I have the nurses in every day to change the drugs over. As you can probably guess it’s a bit of a chore carrying this round, wondering where to put it to hide it best. I’ve dropped it a million times too so I’m now on my third one 🙄 pain in the arse.

Anyway back to waking up shit, feeling sick, my tongue is all burnt and bumpy and weird and I have no idea why. I’m just not myself so queue me crying and feeling sad! So I’ve spoken to the doctor and I won’t get my driver down while I’m feeling crap, if anything it’s more likely they’ll need to add my antisickness back to the driver and delay it coming off even more 😢 this makes me super sad and frustrated! No swimming, saunas or possibly even holidays while I have this thing in. Burkey is also away on a course for the next 3 weeks so I’m lonely anyway but it all hits you like a disgusting backhander when you’re low. Ive been greeting to my mum, my nurses, my cat and guess what greeting bloody helps!! A good big sob, pull on my big girl pants and get on with the fucking day there’s nothing else for it is there.

Still a bloody lot to be thankful for, I’m lucky enough to have my mum to look after me today when I’m not well. I’ll see burkey tomorrow when we meet with my trial doctor (more on that when we know more) and it’s a long weekend this weekend ahead ❤️ so if you’re having a shitty day just roll with it, it’ll probably not be as shitty by the end of the day. Lots of love xxxx

Nephrostomies

So last week I got a drain put into my right kidney, the left one got done the previous week. The purpose of these is to ease the pressure put on to my uritors by the growing disease and it seems to have worked a treat. The only problem is I’m left with two big bags trailing from my back, I’ll be uploading a pic with this post so you guys can see ☺️

BUT i got a great phone call on Thursday telling me to come to ward 32 on Friday and they were going to cap the bags off for me. Yaaaay, meaning all being well over the weekend with them capped off I’ll be able to get the bags reversed and have nothing trailing behind me!! Absolutely over the moon with this!

However since the capping, I’ve been pretty uncomfortable and having to take quite a lot of oramorph (oral morphine) I’m not sure if it’s the capping causing the discomfort or because these sites are brand new huge holes in my body. Obviously I’m going to persist with the capping hoping for the best but if worst comes to it and I need to deal with these extra bags then I’ll just have to lump it won’t I. I’ll probably be super self conscious about it and to be honest they’ll not be easy to hide, but why should I even worry about it? Cos I’m a girl and that’s what we do 😂🙈 I’ll be covered in bum bags and sarongs all summer but least I’ll be here to enjoy the summer ❤️☀️xxx

Where do I start…

Well my unexpected journey started in January 2015 when I was diagnosed with cervical cancer.

I had been to the doctors several times with my symptoms but because my smears were clear and my young age I got fobbed off repeatedly and sent on my way. If it wasn’t for me contacting them and insisting further investigation god knows where I would have been left. So if anyone reading this is in a similar situation please do not stop contacting your GP until you’re happy with answers you’re getting.

Anyway, the night we got told I had cancer kind of passed in a blur. I was prepared for it so no tears or upset from me but seeing my partner Greg break his heart on the doctors floor, then having to go face my mum and best friend who didn’t even know I was having issues, that was the real tough thing. Everyone focuses on the person who has the disease but hardest of all, for me anyway, is watching your loved ones struggle to cope with what you’re going through.

Since my initial diagnoses I’ve had a lot of treatment. Not sure how much detail to go into here? I’ll just bullet point and I guess if anyone wants more info just ask and I can do another post on it ☺️

– fertility treatment to harvest embryos, we have 3 little frozen babies ready just in case lol

– chemoradiation

– radical hysterectomy and bladder removal. I have a stoma now but I’m not sure how many of you would be aware of that

– two more rounds of radiotherapy

– two nephrostomy bags just done within the last week. These are drainage bags right from my kidneys as the cancer has now spread into my pelvic wall.

Due to the reoccurrence of the cancer in my lymph nodes and pelvis I’ll never be cured using conventional methods. We are always researching alternatives of course and I am just about to get accepted to a clinical trial that I’m over the moon about.

The last few years have passed in a total blur and surprisingly I’ve found it very easy to be positive and continue with my life in a normal way! In fact I’ve probably been in denial the whole time about the realities and consequences of the disease but it has made my life easier to deal with so I’m gonna continue with my head up my arse if you don’t mind lol. I one million percent credit my positivity to the unwavering love, support and strength of my husband, huge family and lots and lots of amazing friends. I really could not get through one day without them I’d be a crying heap of a woman, I’m so fortunate to be surrounded by so many wonderful people 💛

Well I think that’s enough for one post lol? I’d love to hear what you think and where I can improve or if you’re wanting more stories about any of the above please let me know. Love you all xxx