Hi 'Super human' Nicola!!

Wow! You really sound as if you're doing all the right things and your recovery is going well! I'm so pleased to see how well you're doing! (Brought a tear to my eye!)

You're so right about the real recovery starting when you get back to your own home and in your case, back home to your little girl! (My two cats were especially pleased to see me!) I came out on day 7 as the hospital were so pleased with me, but other than immediate family, no-one knows I'm home yet! Visitors are often very tiring and not all of them appreciate how tired and emotionally draining the process has been. My partner is very protective, so I know he'll fend people off for a bit longer. Sounds mean that I want to keep friends at arms length, but even a phone call or a shower can leave me wiped out!

What a long operation you had. I thought mine was long at 6 hours, but I had less procedures within mine. (I've updated my op details on my other thread 'Rectal cancer surgery' but in a nut shell, my op went really well too!)

The radiotherapy had continued to do its stuff and the tumour had reduced further even from the scan a few weeks ago! This meant that I didn't lose as much 'gynae' bits as I'd been anticipating!

Like you, I can not speak highly enough of the medical team that took care of me during my hospital stay . . . My last op was a Caesarian 23 years ago, so I too, had very little experience of the hospital world!

I'm now learning to care for my stoma (I had an ileostomy) and after the initial 'shock' of seeing my new friend (Stumpy!) I'm learning to love him for the life saver he is!

Like you, I'm now playing the waiting game for the lymph node biopsy results. I'm hoping to attend clinic next week either Monday or Wednesday and the results will decide whether I need some more chemo sessions (though my surgeon was confident he had removed all of the tumour)

I'm convinced that attitude and listening to the professionals is the sure fire way to get better soon. . . Your approach sounds so similar to mine.

I'm a pretty active person, always on the go! But I AM doing what I'm told and as I type this, my partner is vacuuming away upstairs and the washing machine is on!

I hope you can soon eat something a little more interesting! I'm watching my diet too as I'm still taking my cue from Stumpy as to what he's partial to. In hospital, I had a hot chocolate bedtime drink; Stumpy had the ward awake all night with his 'singing' He can be very vocal . . . It's like having a whoopy cushion attached to my side and every so often, emitting the well known windy sound!

Please keep up the great work, Nicola, and do let us know how you're getting on.

Take care of yourself, fondest wishes,  Jo (Meerkat) xxx

Hi Nicola,

It was great to hear that you are back at home and your surgery is finished and you are doing well and being positive. I am sorry I haven't answered before but I have had a bit of a manic time recently.

I will keep my fingers crossed that your results are good and that you won't need radiotherapy.

Do look after yourself, your worth it.

best wishes

Annabel.

Thank you everyone for your continued support and kind words. Yesterday I had an appointment for the Pathology results and unfortunately it wasn't the news I was hoping for.  I will be needing Radiotherapy and Chemotherapy which will be for six weeks and will start in a month from now once I'm stronger and have recovered a bit more from my surgery.

I always knew these treatments would be a possibility although I was I staying optimistic that I wouldn't need them as my surgeon was confident he had removed all of my tumour during the operation however, upon looking at the tumour it had characteristics of an aggressive tumour which they know has a higher chance of coming back in the future. There was no cancer cells in my lymph nodes (they removed 14) and they don't think there is any cancer left in my tongue so technically I am cancer free right now, but they can not be sure if any cancer cells may have escaped into the nerves in my tongue. The tumour was removed with a margin of my tongue surrounding it but when looking at the margin it wasn't a clear margin, there were odd cells which had broken away from the tumour and they can not be sure how far these rogue cells have jumped. I was told that my age (I have just turned 33) was a major factor in their decision for treatment and if I were 20 years older they may say further treatment wouldn't be necessary so I'm confident I'm receiving second to none care but it's all a bit of a blow. I had some questions to ask my surgeon yesterday about my operation but all of this news completely took over and I forgot to ask anything. I'm concerned about some swelling on my chin that hasn't disappeared since the operation and that I seem to have a little blood in my mouth occasionally.

I'm finding it hard to stay positive at the moment. I thought I was over the worst but now there is more to come and it's going to be tough. The radiotherapy will be Monday to Friday for six weeks with also one day a week of chemo. I'm worried about all of the side effects and risks and it seems that my Christmas this year is probably not going to be a fully enjoyable one and it all just seems so unfair on my little girl. I feel as though I'm palming her off onto her dad or my mum as I need rest and during the six weeks of treatment it will be hard to spend quality time with her if I'm feeling so rough.

Hopefully my positive attitude will return in a few days once I've had a chance to digest everything but any tips on the radiotherapy process would be greatly received as I would prefer to know what to expect.

Speak soon,

Nicola

Hi Nicola,

I'm sorry to read that the pathology results weren't what you were hoping for. But as you so rightly say further into your post, your medical team are offering you second to none care and making absolutely sure that any stray cells are zapped!

I have had radiotherapy but obviously mine was in a different place (pelvic radiation) to where yours will be. I'm sure some of your other virtual friends with your type of cancer, will be able to offer you more advice and support in this area.

It's hardly surprising you feel less positive right now. You've had so much to deal with, physically and mentally.

You mentioned Christmas. I remember from your previous posts that it was your aim to be eating a full Christmas lunch. Although this year will be different for you and your family, I'm sure you will find ways to make it a special and memorable time for your little girl.

Just a suggestion, one year, my family had a 'Christmas celebration' in July!! Circumstances dictated that we couldn't have the celebration we wanted in December, so my mum organised the event, complete with crackers, tree and pudding on July 25th. A bit bizarre, but it worked for us! And the photos we took still looked 'Christmassy'

I hit a low yesterday as I, like you, received news on Monday, that I will need more chemo sessions as stray cells were found in one lymph node! Not quite the plan I'd hoped for!

Two days on, I'm beginning to pick myself up again! ( My chemo won't start till I'm a bit more recovered from the op! ) I had hoped to be stoma free by Christmas so that I could enjoy a traditional lunch with maybe just one glass of bubbly! Maybe next year! (Possible July? Hehe)

It's such a hard journey isn't it? But we'll all hold each others hands (virtually!) and we will get through it!

Stay strong, honey! Massive hugs coming through the wires to you!!

Much love, Jo xxx

Hi Nicola,

I'm really sorry that things haven't gone quite as well as we all hoped they would. Reading through your message it is seems that the radio and chemotherapy are the 'belt and braces' to what you have undergone so far. You will be fully cured - deep down we both know that, it's just going to take a bit longer than initially anticipated. The final outcome will be positive but the route towards that has its ups and downs.

I have recently finished the 6 week radio/chemotherapy journey so feel free to ask any questions. What type is your chemo? - mine was Cisplatin. My treatment finished 4 weeks ago.

The only advice I would give at this stage is to try and pile on a few pounds prior to the treatment starting. I did that and I'm grateful that I did. I understand that most people having RT/CT to the head and neck lose weight and so it is good to give yourself a head start (unless you're considerably overweight to start with of course). Please remember that I'm not a doctor though - this is just my personal experience and opinion.

I was able to look after things such as getting to and from the hospital for the daily treatment for myself for the first 4 weeks or so - then public transport became a bit too much of a challenge and I certainly wasn't fit to drive. I don't know how far you will have to travel but it might be worth working how how you would get there if the journey is a difficult one and you find yourself needing to make other arrangements as I did. Mine was as simple as getting my wife to drive me for the last few days.

One thing I can say is that although the six weeks wasn't an easy ride the time certainly did fly by

Please feel free to contact me with any questions or concerns that you might have.

Best wishes.

Simon

Hi Jo,

Thank you for your lovely message. I was wondering how things were going for you as I remembered you said it would be Monday or Wednesday before you knew of your next treatments. I'm very sorry to hear your news too, it is such a hard journey and I don't think anyone can comprehend the emotions we feel unless they have been through it as well. I am lucky in that I have met a lovely lady who went through exactly the same cancer as me last year. The hospital staff have put us in touch. She is also very young with a very young child so she has been guiding me through, but other friends and family really can't relate to how this feels, I can tell by the way they act and by what they say to me about it.

You said you had a low day yesterday which is completely understandable, I've had a few since my surgery as its finally sinking in what's happened and I think I'm having another down day today. You always sound so positive like me, but news such as ours is hard to take when we have been through such a lot already. We can only stay positive for so long eh? I'm already on a bit of a mission though and eating well today and I've asked a friend to pick up some bathroom scales for me so I can keep an eye on my weight. I hope you are managing to keep your weight up too.

I did laugh at your July Christmas! But what a clever idea! I will try and make this Christmas as special as I can for my daughter, she is only two and deserves it but its just such a shame that I will probably still be feeling pretty rough. Luckily I've almost finished buying all of her Christmas presents as I was concerned I wouldn't be well enough to go shopping nearer the time,- just as well I did!  I'm told the peak of the side effects usually occur ten days or so after treatment has finished which will be bang on Christmas. So now I'm looking ahead to new year and I will have to set myself a new goal.

Glad to hear you have picked up a little today, hopefully I will too.  I'm also sending you virtual hugs    and thinking of you. Yours and everyone's support from here really helps a lot.

Nicola x

Oh Nicola I am so sorry that you haven't got the news you were hoping for from the results.  You sound so down and I truly hope you can find it in yourself to be positive again.

I have to admit that as I read your post I found myself feeling more positive for you the more I read.  It really does seem that the treatment you are facing, as dissapointing as it is, really is just a way of trying to make sure that the cancer you have got rid of doesn't come back.  I am certainly going to keep my fingers crossed that is the case.

Perhaps you could contact the nurses here about the swelling on your chin and the blood but please try not to worry about it too much, after all that was very traumatic operation for your tongue and mouth to cope with.  Easier said than done though I know.

I wish there was more I could do to help but just know that there is a Welshman in England sending very best thoughts and wishes to you and your daughter. 

Look after yourself.

Garf. X

Hi Nicola

I'm sorry about your news although, on a positive note, you may feel happier after the treatment because you will have zapped any rogue cells!

I also had radio and chemo - 7 weeks for tonsil cancer and, like simon, I had cisplatin. The chemo days are fine. I had a real laugh with the other patients the first day! It's not scary at all. The radiotherapy was quick - normally about 15 mins for me and you can't feel it.

I have two kids and my advice would be to accept all offers of help with your daughter because you will feel exhausted. However kids are resilient and mine were fine throughout.

I finished treatment on 10 may and it took until July before I was able to eat properly. Are you having a peg feeding tube inserted? It's fine and you soon get used to it.

I've had a clear scan and feel perfectly fine now (apart from a bit of chemo brain although I had a bad memory before!).

If you have any questions, feel free to ask.

The waiting horrible but, again as Simon said, it whizzes by once you get started.

Debbie

Hi Garf,

Thank you for your reply, it really does help to know that there are so many people thinking of me, even the virtual friends!

I did speak to my cancer nurse about the couple of worries I have and she seems to think the swelling and blood is normal and it's all early days but she did say the swelling may never go away. I was alarmed at that as it prevents me from looking straight ahead. It's below my chin and when I look up I can feel it pulling my head downwards so I'm hoping it settles down eventually.

I think my positivity will come back eventually but it's been a bit if a downer this week. I hope you are well yourself.

Speak soon,

Nicola