Taking my daughter to find out today

Hopefully Monday will bring a clearer picture. Perhaps consider sitting down with Eleni and talk about any questions that you as a family have. Sometimes these appointments can be tricky and I often find my mind goes blank. And in particular make sure that she has a name and number for her CNS (cancer nurse specialist) or someone that you can call if necessary to ask further questions if you get home and think "I wish I'd asked that".

 Once Eleni has the firm diagnosis and treatment plan these may be worth a look. There is no pressure to join any of them. They are there if they help. Sometimes knowing what to expect and having support from others in the same situation can help. It did me. I am glad that it seems that the cancer is localised.

(+) Bone cancer forum | Macmillan Online Community

(+) Diagnosed at a young age forum - Macmillan Online Community

(+) Family and friends forum - Macmillan Online Community

How is Eleni coping and how is she in herself now? It is good that her pain is being controlled and it would be great for her to be able to come home for the weekend and just relax a bit before Monday. Mind you with the rugby on - maybe relaxing is not the right word!

The other place worth mentioning is Young Lives vs cancer. A young girl from work found them helpful. She was the same age as Eleni. 

What we do - Young Lives vs Cancer

I won't add anything else as I would not want to bombard you with information- but there is a lot of support out there for you all, so please do not feel that you are dealing with it on your own. 

Jane

That's amazing thankyou - I can't believe how great this forum is! 

Eleni is ok. She was a bit tearful this morning when we got the results from the PETCT but I think that's more because it's making it more real - but she is so mentally tough anyway, and once she'd processed what the doctor said (along with a follow up visit from her consultant surgeon at lunchtime), she is viewing today's info as a positive actually, because we are zoning in on the issue, and the great thing is that there is nothing else untoward anywhere else apart from her shoulder and surrounding area. Monday is the next big day for us - she will hopefully come home tomorrow! 

Am glad she is doing ok all things considered. It's similar to how I felt- when you get it confirmed it does all of a sudden make it feel real, whereas before you tend to think maybe it could be something else. It took me a bit of time to process it but she is right- in a way it is positive- she (and you all) know what you are dealing with now and can focus on what ever treatment plan is discussed on Monday. It does give a bit of the control back. 

Hope she is home tomorrow so you can all spend a bit of time together before Monday. She may even get to watch a bit of the rugby.

In the meantime if there is anything you want to ask or need you know where we are.

She sounds a strong girl your daughter and that will stand her in good stead when the treatments start. She has her family behind her. It is not going to be easy, but it will be doable and I found it was surprising what you can deal with when you need to. 

Best of luck for Monday.

Jane

Hi there. 

Quick update on Eleni. We had her first visit to the Oxford Cancer Centre on Monday 16 October; slightly frustrating as we didn't get much more information or a formal diagnosis at that point. In fact the consultant seemed less informed than we were at that point. She did her biopsy on that day. 

We returned for another appointment this Monday (23 Oct) and were told that Eleni has a Ewing Sarcoma on her right shoulder, Stage III. It has spread to her lung and her right armpit. Oxford have transferred her case to Southampton as they are better equipped there to treat her. 

We have an initial appointment now in Southampton on 2nd November. 

Eleni is in generally incredible spirits. She is more positive (without being in denial at all), and mentally stronger than most of us, which makes my heart burst with pride. She has made light of her illness, has a Snapchat Reel she started called 'Tumour Talks', and is able to make jokes at the cancer's expense. She has off days and has twice had what transpired to be very bad migraines these last few days. 

We are really frustrated to be honest. Her cancer is visibly evident around her shoulder and is getting worse (she awoke yesterday with a new lump (50p sized) around her collarbone / chest. Of course, we all want her treatment to begin immediately; we are realistic enough to know that it does take a little while, but our concern is that she's been symptomatic in some way or other since late February, had an initial diagnosis in early October, and now has another appointment on 2nd November which I suspect won't involve any actual treatment. And visibly her cancer is getting worse. 

We also were very frustrated last week / last weekend when she got her migraines. She became very tired, agitated and nauseous (she vomited a few times). The first time this happened, we tried calling the numbers provided by the consultant who initially diagnosed her, as well as the consultant in Oxford; these were both NHS Switchboard numbers which either rang out, or when we did get through to someone, were told that the person we were trying to reach was unavailable. We tried calling 111 (they advised taking paracetamol - Eleni is already on 8000mgs of Paracetamol daily, as well as Codeine, Diclofenac, Tramadol and Oral Morphine), and then 999 when she was visibly in pain (they said as she was breathing / not bleeding / no traumatic injury they could send an ambulance as a low priority which would take 8 hours). We took her to A&E on the first occasion last week that she deteriorated, waited 3 hours (on a Friday night, surrounded by drunks, police and people bleeding from fist fights), eventually had a blood test, a visit from the on call consultant neurologist, and was sent home with some anti-nausea drugs (to add to her daily concoction of pain killers). 

We now have to wait until next Thursday, hope that she doesn't get any worse, and hope that they begin her treatment asap. 

Does this sort of timeline sound reasonable? Seeing her suffer and in pain (not daily, but it seems to be happening with increased frequency), seeing her tumour visibly growing, and still not having any clue as to when her treatment will begin is incredibly worrying. 

As always your advise is very welcome indeed! Thankyou all so very much 

Hello Matt,

I had been thinking of your family this week and had been wondering how Eleni is so it is good to have an update.

The appointment on 23rd at Oxford where they didn't give a formal diagnosis does seem normal to me as they did the biopsy then and can't really confirm anything until then. To have the results and diagnosis the following week seems good to me- mine took slightly longer from what I remember.

I am sorry to hear that she has had a diagnosis of Ewing sarcoma and there is some spread to her lung and armpit. It must have been hard for you all to be told this but I found that although having a diagnosis does make it all real, it does mean that you all know what you are dealing with and plans can be put in place for treatment. 

I know that it is incredibly difficult to have a diagnosis and to have to wait for treatment but  by referring her to Southampton hospital they seem to be making sure that the most knowledgeable and experienced doctors are planning her care. To wait for just over a week to have the initial appointment with Southampton does seem reasonable because they will undoubtedly want to look at her case in detail, have a MDT meeting (where the experts get together to discuss the best way forward) and then be able to recommend to you as a family what treatment is needed.

I would imagine, going from my personal experience, that the meeting next week will be the Consents appointment. I would imagine they will talk you all through a proposed treatment plan, what will happen and when, the side effects she may experience and what to do about them. They will have to talk in detail about any risks/benefits involved to be able to get her informed consent. It may be a long day as if she agrees to the treatment she may need further testing eg; blood tests, ECG etc.

To give you an idea I had 3 consents appointments. The first one was for surgery- I had the appointment on the Friday and surgery on the Monday. For chemotherapy- I had the appointment 5 weeks post surgery. The chemo started around a week and a half later. (I had to wait to be 6 weeks post op.) My radiotherapy consents appointment happened during the last chemo cycle. Radiotherapy started a week after the last cycle finished. So when you get to this stage- I would imagine that treatment will happen soon after the appointment next week. 

To give an idea of potential treatment, I will pop a link below.... I would advise not to google for information as it is not always accurate or up to date. With the Macmillan info you know that it is.

Ewing sarcoma - Macmillan Cancer Support | Macmillan Cancer Support

I am pleased that Eleni is generally in good spirits. She sounds a remarkable young lady in the circumstances. She is bound to have up and down days but I would hope that once she has had her appointment next week and her treatment plan, it will help her as she has something definite to work on. Her Snap Chat reel sounds fab, and anything that helps her and maybe even spread awareness is great. 

I can understand how hard it must be to see her getting visibly worse and the tumour growing but it does seem that she is very close to being given her treatment plan and I can not think of any reason why they would not want to start the treatment very soon.

Her migraines sound horrible and very disabling for her. Have you had a chance to discuss with her GP to see if there is any possibility of something to help prevent them and reduce the frequency. I know that you have mentioned she is understandably already on a lot of medication but I wonder if her GP might be able to look at the medication and review it now, rather than waiting for the next pain episode. I was lucky in that I only went to A+E once for my cancer but waiting for 8 hours was really hard. It was really busy so I can empathise with you all. I hope the anti nausea tablets have helped. If they don't then there are other ones that can be given. 

I am really sorry that you are all going through this and I can understand that it is incredibly frustrating waiting for all these different appointments and the feeling like you are not getting any further forward. It is naturally worrying that you feel that the cancer has been there a while already. But the main thing is now I feel, that she has a firm diagnosis, the experts are now coming up with a treatment plan and that the appointment next week sounds like it is to go through that plan so she can start the treatment needed as soon as possible. 

Hang in there. And next week, make a list of questions if it helps and in the meantime if she is unwell, in pain or if you are in any way concerned- phone her GP, 111,999 etc. 

Remember there is also the Support Line on here where you can get advice from the nurses if it helps. 

Good luck for next week and please let us know how Eleni gets on.

Jane

Good Morning Matt

Hope that Eleni's treatment is going well and that she is not experiencing too many side effects.

Please do let us know if there is anything either of you need.

Jane

Hi Jane. I'm so sorry for lack of updates. 

Since my last message, Eleni's pain got worse; long story short, she ended up in the Southampton Teenage and Young Adult Cancer Treatment ward at short notice. We were told that her cancer is Stage IV, not III, and that the diagnosis done in Oxford was almost certainly wrong. 

The shock of discovering that she has Stage IV (and is quite advanced) has however been mitigated by a few things. 

The ward in Southampton is beyond amazing. She is surrounded by an incredible medical and support team; as soon as we arrived there, we breathed a sigh of relief.  It felt before arriving in Southampton that nobody was taking it as seriously as we felt it was - she had a tumour on her chest visibly grown in the space of a few days, but nobody seemed that interested. She had been in so much pain before - calls to 111 proved entirely fruitless (again, advised to take paracetamol...), and I have to say that the Queen Alexandra Hospital in Portsmouth have been very poor. 

The Southampton team however are amazing. She's had her first round of chemo already (and amazingly, suffered only minor nausea from), has had a break at home (where she improved so much that you'd never think anything was wrong with her (the chest bump completely disappeared).  She is now back in Southampton for the second Chemo round; she's halfway through and is very tired and feeling pretty sick right now - all par for the course. 

Additionally, her younger brother Freddie decided on the day we found out it was Stage IV to do a Teenage Cancer Trust challange for the month of November - 3000 pushups in 30 days. He set himself a fundraising target of £150...

He has so far raised over £20,000!!!!!! We are completely overwhelmed! 

The family have also found their way down to the Macmillan Centre in the hospital a few times now - I'm sure we will be making some new friends there very soon. 

Many thanks for reaching out - and again, apologies for lack of updates. 

Matt 

Hi Matt

No apologies necessary- you have enough going on at the moment.

I am sorry to hear that the diagnosis is at stage 4 but am really pleased that the hospital treating her is really looking after you all. It must have been a shock to find that the cancer was more advanced than first expected.

Chemo can be tough but it sounds like she has so far had a good response with the chest bump disappearing. Am sorry she is having nausea on this cycle- the important thing is for her to keep telling her team the side effects she is experiencing as I know myself, with the nausea- there are several different options and that sometimes it takes a while to find the right combination.

How amazing is that- for Freddie to raise such a huge amount! Well done to him. 

I am glad that you have had support from the Macmillan centre in Southampton. It sounds like you all have a lot of support now and it must be a relief that now Eleni has started her treatment. I wish her well and please do keep us updated and let us know if there is anything you need.

Jane