Thanks Annabel,

I've found this past week tough but now that chemo has finished and I only have seven more radiotherapy sessions to go, I can see the light at the end of the tunnel. Even if my mouth is becoming very sore! Not long to go now before I move to recovery mode.

Speak soon,

Nicola xx

Hi Nicola,

Great to read your update! It must be a relief to have finished your chemo and you are so close to completing your radiotherapy sessions!

Thank you for your info re the PICC line. Based on your post, I felt more relaxed about having it done and you were right! It was absolutely fine! It was painless and relatively quick . . . The X-ray showed it needed a slight adjustment, but other than that, I had no problems! I'm expecting to have two more chemo sessions then have it removed, but  the doctor wants me to have another MRI scan to look at the cancer spots on my liver and it may be that I have an additional session after the scan . . . Everything is a bit up in the air and at this time of year, appointments are a bit more unpredictable! Should know more next week! My partner has learned how to change my dressing and flush the line and next week, he'll be able to disconnect the chemo bottle at home so that's one less trip to the hospital.

I'm beginning to have more chemo side effects now! Tiredness mainly, but my mouth has become a little ulcerated! Not on a par with yours though, bless you! The steroids have affected me too! Some days I feel like the Duracell Bunny! Buzzing and unable to switch off! I'm learning to catch up with sleep when I feel the need! My cats are fascinated that I'm up and down throughout the night! They loiter around hoping for an extra breakfast!

Glad you're getting used to the PEG and I look forward to reading your post when you describe your 'first meal'        that won't be long!!!

Take care, chick, hope you get some stronger pain relief tomorrow and good luck with the rest of your radiotherapy . . . You're right, the light is getting brighter. . .  Must be the end of the tunnel! Nearly there!

Hugs, Jo xxx

Well done and congratuatlions on having the chemo behind you!

Hi Simon,

I think you did the right thing deciding to have the PEG out whilst 'asleep'. We have been through enough already so letting ourselves off a little lightly at the end is perfectly acceptable! I hope the procedure goes well. Have you had much help with your PEG? I had a Nutritionist come to my home to talk to me about using it right after I had it done but she hasn't been back since and she was going to show me how to push/pull it in and out? I've been flushing it and spinning it daily but I'm worried I'm not giving it the proper care it needs. It's very tight against my sin, there doesn't seem to be any room to pull it back and forth?

Glad to hear your doctor is getting things moving for you, I hope you get seen quickly, hopefully before Christmas. I too am swearing during the night, not a great deal but noticeably for me. Fatigue is really setting in now and I feel I have no energy for anything. Today I have sat on the sofa all day and have done nothing but watch TV yet I am exhausted. I'm now having a problem with mucus, I may ask about a nebuliser on Monday as I remember this helped you. I am spitting mouthfuls of it every few minutes, it's probably the worst side effect of all. I'm so very glad chemo is over with now, that really made me feel unwell, just one more week to go of radiotherapy then I can start looking to recover. Just not making daily trips to the hospital will be welcome, I don't have the strength anymore! I must admit I've been feeling pretty down at the weekends, especially this week. I hope my mood lifts in time for Christmas.

Will be thinking of you on Friday with jealousy! I hope you are still enjoying your food.

Speak soon,

Nicola xx

Hi Irene,

Sorry to hear of your PEG problems, I really can sympathise. Is it easing up at all yet? I understand how frustrating it is, I've not been able to make any festive parties this year either. I don't have the energy and can't eat or drink anyway! It's the part of having cancer that others don't realise, aside from the treatments, it's so disruptive to our lives.

Have you contacted Macmillan at all regarding your personal circumstances? I have found them a wealth of help and information with finances and home help etc. it might be worth a try, call their main number and they will put you through to the correct adviser to help with whichever area you need support. It's worth a go. The last thing you need is financial worries right now. All of your concentration and efforts will need to focus on getting yourself through your treatments so I would encourage you to contact them sooner rather than later. It is a joke how us cancer sufferers have to just plod along when like you said, some of us have worked hard all of our life and get little support at a time like this.

I feel I've hit a bit of a brick wall this weekend. I think I find the weekends hard as I'm alone at home with everything on my mind coping alone when I really would just prefer to be getting on with Radiotherapy! I have five more sessions to go so I hope this time next week I will feel a little brighter. My energy levels have dipped now to an all time low and I'm suffering with excess mucus which I'm constantly having to spit out, it's horrible. Thankfully chemo is over, I really don't think I could have handled another one.

Make the most of your last week before treatment. Eat well and do some nice things as in a few weeks you may not have the energy or will power! Feel free to ask any questions.

Nicola x

Hi Nicola,

I was so glad to see you had got throught the chemo, I realise the lst couple were a struggle for you.

Well done you, you should be proud of  yourself. just the last 5 sessions of radio to go through and then hopefully a rest at Christmas time.

How is your little girl doing Nicola? I bet she is looking forward to Christmas. Kids can get so excited, mind you so can big kids.

I know you had hoped to be eating by Christmas but you say you can't eat or drink yet, do you know when you might be able to? Have they given you a timescale.

Anyway  just wanting to send hugs and love to you to let you know am thinking of you and wishing you well

Annabel. xx

Hi Nicola,

I'm so pleased - you're nearly there. One more week and then no more travelling to the hospital for the daily zap. I remember how that motivated me towards the end of my treatment.

You are right about the mucus - this was a real problem for me. I used to carry a kitchen roll with me everywhere I went. Normal tissues were just not up to the job. Without getting too graphic, I did wonder where all this stuff came from - it seemed to be neverending. The good news is that it went away fairly soon after the treatment stopped (maybe after a couple of weeks). The nebuliser helped a little bit.

I too had a PEG lady come and visit very early on. She showed me how to turn the PEG around, and that was pretty much it. She said that she would phone or come back but that was the last I heard from her. The only other assistance I have had with my PEG was from the nurses at the weekly check-ups. I'm still using my PEG to put in 2 pots (800 calories) first thing in the morning. That is because I still need to load up on calories and my mouth/throat is still slightly sore. I have debated with myself delaying having it removed for this reason but I think I will go ahead on Friday - I have found some high calorie things that I can manage. Last night I had a Frey Bentos steak and kidney pudding soaked in gravy (disgusting, I know). I could just about manage it and the important point is that it was 900 calories. Soups and things like tinned spaggetti are all very well because they're easy to eat, but they contain very little in the way of calories. I can drink the NHS pot meals but they taste so rich (no doubt due to the high calorie content). Having the tube removed will make me go down that road though. I'm now up to 10.10 - I really want to get to 12 stone plus. The lightest I've been is 10.5 at the end of my treatment.

As you know, I went to the GP last Tuesday about my low red and white blood cell counts, the nightsweats and my aching limbs - to give him credit things have moved quickly after this. I went for a neck, chest and pelvis CT scan on Friday and I am seeing the haemotologist on Wednesday. The GP explained that in very rare cases a high dose of radiation can prompt certain blood disorders, he did say that he couldn't believe I would be that unlucky - we'll see! Also, I have my first ENT oncology review on Thursday and then the PEG removal on Friday - all in all, an action-packed week ahead.

Sorry to hear that you've been sweating at night. I've done a bit of research about this and in well over 95% of cases the cause is not serious. It can be caused by the stress of all that is going on at the moment. Also, the chemo drugs can cause sweating at night - this should go away within a few weeks after the last chemo session. True night sweats involve one waking up and finding oneself absolutely soaked - almost as if someone has thrown a bucket of water over you whilst you were asleep. When it happen to me the other night I immediately took my temperature and found that I was one degree below normal - so it's not a fever as such. I hoping that I'll get to the bottom of this on Wednesday.

Like you, I found myself to be very weak during the last week of treatment. My wife had to take time of work to take me to hospital for the last few sessions. Remember to accept all offers of help and assistance.

We shall all be thinking of you this week. It's a funny thing but  even I'm looking forward to you not having to go for your daily zaps!!

You've come a really long way and there is only a short distance left to go - well done, Nicola! Get this week out of the way and then it's all downhill - yippee!

Best wishes,

Simon XX

Well done, you two!

Nicola, you are almost there! Yuk! That mucus! I used to carry a bucket around but as Simon says it does go a couple of weeks after you stop the radiotherapy! By New Year's Eve, you should have stopped spitting!

Good luck for Friday, Simon. That will be a relief! Can you open your mouth? I struggled to open my mouth very wide so I had to flatten chocolate eclairs to squeeze them in! I thoroughly recommend the mini eclairs for a few extra calories!

Keep going, guys!

Debbie

Hi Debbie,

Yes, I can open my mouth but it is difficult chewing and swallowing becuase of my continuing sore tongue and throat - I've got a large ulcer on the side of my tongue right at the back that is very painful. Things have got worse over the weekend.

In readiness for when I am without a tube I tried a bowl of runny porridge this morning - gave up half way through. Even gave up on drinking the NHS milkshake and reverted to the tube. If this keeps on I might have to delay having it removed - as much as I am looking forward to being without it.

Nicola - only 4 more days after today!

Simon. xx