Forgotten

Hi Puddy I'm sorry to hear you're feeling like this. For me, this was the most difficult part of things- after diagnosis until receiving a start date for treatment. There were parts of that process that seemed to move slowly but all these scans are unfortunately  necessary to ensure that a full picture is obtained for the professionals to advise as to the best treatment plan and to map out the area of radiotherapy (if this is part of the plan in your case). Once all your scans have been completed, the results are discussed at a MDT (Multi-Disciplinary Team Meeting) where a treatment plan will also be discussed. That should take up to 2 weeks after your last scan as MDT's usually occur once a week at your treating hospital.  If you have not received a date as yet for the PET scan, I would suggest calling the hospital and chasing this.  I understand what you're saying that your friends have their own lives but I'm sure they would want to be there for you when you need to share your worries and concerns. If you feel able, please try to reach out and talk to people, it does help to share your feelings. There is also the option of to calling (it's free) the Macmillan Support Services on 0808 808 00 00 have a look by Clicking here to see what is available. You can of course always post in this group. We all appreciate what a truly difficult time this is for you. Bev x

Hello Puddy,

Yes, this is a difficult time for you and just made worse by the fact everything has stopped for the bank holiday, but I'm sure things will all start again soon. Perhaps you could use this time to make some plans and lists of things you want or need to do before your treatment starts, like batch cooking or making treats for yourself, ordering some books or comfy things to wear as you will feel pretty depleted by the time you are getting through the treatment, and I found it helped me to feel things were in progress even before I got started properly.

Maybe you could start doing some yoga or meditation as a way of getting your body and mind ready too. I know 'keeping busy' is really tough but I found if I  did things that would be useful to me I felt more in control.

Thank you. I've now been told there is a PET scan delay and they tried to discuss me at MDT yesterday, but couldn't, because of this. However, to avoid delay they have referred me to oncology without the PET scan. 

Everything scares me at the moment. I'm thinking ' are they referring me now because other scans saw something else?' and they can't wait for the PET scan? I analyse EVERYTHING they say, driving myself mad.

Oh that is a pain Puddy, but I know when I was originally referred for a PET scan there was a 16 week wait at the hospital I spoke to, so there might just generally be a big backlog! I would have thought the MDT think they have enough information to at least make a start on your treatment plan. It's strange how, when you are on the sharp end the slightest thing can set you off on frantic thoughts, so maybe if you rang someone you have already dealt with and asked the question, they would explain and it would at least put you mind at rest about 'Did they see something else?' If it's any consolation, I'm sure if they DID see anything majorly sinister they would not keep you waiting, the very opposite in fact, so perhaps they feel the PET scan will be useful but they have enough info for now.

Take care

Thank you. It's so hard to stay positive when everything's up in the air. xx

I had my results and it hasn't spread, thank goodness. They did mention a small spot on the lung, which they think is benign, but they'll keep an eye on it. I'm to have 5 1/2 weeks of radiotherapy and chemotherapy, starting on 23rd May. The first chemo will be an infusion, then tablets after that. I live alone, nowhere near family, so I've started having shopping and meals delivered. I'm just worrying about coping alone, with my dog. I also have to climb into the bath to shower - how feeble will I be? Will I manage?Will I be able to drive to appointments?

BTW - I'm 69, so no spring chicken. xx

Hello Puddy, great news it hasn’t spread. I am nearly a year post treatment and remember it well the worry of how I would cope with the every day things. I am 67 and like to think I have a lot of life in me yet!  You are doing all the right things preparing meals etc. is there a neighbour who can walk your dog if you are unable to do so? I don’t know how energetic your dog is but I know some dog charities help with pets for people who go into hospital or very unwell they cannot take them out. Maybe it would be worth contacting your nearest rescue centre who sometimes have dog foster care. I can only tell you my experience from treatment as we are all very different. I had no problems getting in and out of the bath to take a shower or a much needed lovely soothing bath. Luckily my husband did the cooking but then again we didn’t prepare and freeze like some did. I did manage to go for walks up to around the fourth week and would then tire and only went for short walks after that. I had chemo radiotherapy for six weeks and it was at the end of that I was particularly fragile. Quite a few people on here have said they started to turn around at about two weeks after treatment stopped. Unfortunately I went on for a further two more weeks and then rapidly started to recover. Drink plenty, eat healthy and rest without the guilt. I read books all hours of the day and night and slept when I could. I went so fast. Take care and keep in touch on here for support 

Hi Puddy,

Thats good news that there’s no mets & that you have a start date for your treatment. Good idea regarding your shopping/meals that takes the worry of supermarket shopping, if you don’t feel up to it, out of the equation doesn’t it? It’s a good idea to batch cook a few bits too so that if there’s days you don’t feel like cooking then there’ll be something ready just to pull from the freezer if needs be.… With your dog, do you have any friends or neighbours that would be willing to walk him/her if you’re feeling fatigued? Or maybe a local dog walker would be able to help? I have a dog & took her on short walks for the majority of the time I was in treatment, there was the odd day we didn’t go out but she wasn’t particularly bothered about that to be honest she just curled up with me on the bed or sofa & was more than happy with that. 

I accessed transport via a local charity that transports anyone having cancer or renal treatments to & from hospital appointments but in hindsight I could have driven myself, although I only had 23 treatments opposed to the usual 28 due to the clinical trial I was part of so I think maybe I would have had to access other transport if I’d had another week to do plus I’m only 20 minutes away from the hospital so I suppose it depends on how far you need to travel. 

The fatigue was by far the most prevalent side effect for me throughout my treatment but I  found getting in & out of the bath easy enough & a nice warm salt bath was often where I was most comfortable especially nearing the end. 

Nicola 

That's really great news Puddy, now you can focus on the treatment and recovering. I am 62 and sounds like I had the same treatment as you'll be having.

I would think you will be fine. Tired? Definitely, but not incapacitated so you should be ok coping on your own. Allow yourself space to rest and have a snooze when you can. You might find some days you just can't be bothered doing some things, but just let them go if you can.

I was able to climb into bath to shower ok. I wouldn't say I felt feeble, just needed to take things easy. Your body will tell you when you need to sit down and close your eyes, or relax with a book and a cuppa.

You might find you enjoy a gentle walk with your dog and getting out for a few minutes fresh air. There is an organisation called BorrowMyDoggie which might be able to help you, or posting on local community social media might give you some contact with people who would walk your pooch.

Stay in touch. It sounds like you are well prepared. Remember to get yourself some treats!

All the best

xx