Newly diagnosed

Hi Mike,

I'm so sorry to hear about the cancer, and also really glad that you found this site so soon. As far as an online community can, this is the best one I can imagine for shepherding anyone through this experience.

The chemo/radiation therapy, the 'gold standard' for our cancer, is very aggressive but also very successful. No guarantees- we all shriek collectively when anyone here has a recurrence after treatment- but most of us stagger up and on afterwards, at various degrees of speed.

Your treatment will likely be a few days of chemo as well as the radiation at the beginning and a few more days of chemo right at the end. You'll get some freckle-sized tattoos on your hips to guide the therapists to zap you in just the right spot for your particular tumor. The side effects usually come on slowly, peaking toward the end of treatment and the first few weeks afterwards. It's no fun, but your cancer treatment team will help you get through it and so will we.

Obviously you won't be able to drive for a while. What are your plans to deal with that? Do you have help at home? People to drive you to your treatments if and when it gets too much? Will someone help you with meals or do you need to stock up on your own?

Once your treatment is scheduled everything will start moving very fast. This is disconcerting, but it's also good. Move briskly into and past the treatment phase so you can start getting on with post-cancer life!

Ask questions here as they occur to you. We'll be here with you throughout.

Suz

Hi Suz I have occupational health meeting at work tomorrow to try and start putting a plan in place as doc already told me I can't drive when treatment starts which is a concern the financial side of things rent car payments debts kids . My eldest child lives with me so I have her to help my mum is there and my partner will pop round whenever she can to help me and I have friends all offering to help with shopping keeping me company etc . From what I can remember the doc said about chemotherapy and radiotherapy for 5/6 weeks but then that could be wrong as I was trying to take everything in and keep calm while being completely bowled over. Once I've had the scans done I will get a better idea of where I'm at I guess .

Hello Mike welcome to the group that is really going to be supportive during your following weeks when you start treatment. The question regarding the chemoradiotherapy my experience was the first day of treatment I had intravenous chemotherapy and then the radiation session which was for about 15/20 minutes if I remember rightly. Then this followed taking chemotherapy tablets daily only on the radiotherapy days Monday to Friday and weekends off for six weeks ending with intravenous chemotherapy on the last day. I know some members on here have a pic line for the chemo and not the tablets but I cannot tell you about that as I have no experience of it. It’s down to your treatment team to decide what is best for you. I am two years post treatment and doing well. Great advice from Suz about getting a good network of support from people around you. With regards to the financial side I think Macmillan can give advice on financial help for those people who could suffer financially whilst having to give up work during treatment. My hospital had a Macmillan desk and a Maggies which can give a huge amount of advice. I’m retired so I dread to think how it must be to worry about recovery and work. With you being anatomically different to us females you will be affected slightly differently but we have recently had a couple of men on here recently due to start treatment or starting so hopefully they can see this post and share their experiences. My one piece of advice is a sitz bath or you made have a bidet already. I purchased one from Amazon that collapses flat when not in use that sits on the toilet and so useful when going through treatment to help with the discomfort of going to the toilet by just sitting in warm water. You will be given a contact number for your nurse in charge of your treatment which I had a 24 hr emergency contact so you have someone there to help when needed. It is all very bewildering and scary going into the unknown but once you get into a routine of the daily hospital visits time passes very quickly. I was given my schedule on day one with all the times I would have to be there and eagerly ticked each day as they passed. Side effects slowly build up but we all experience differently and my first four weeks were relatively painless apart from a session of radiation cystitis and towards the last week it became quite painful but I had morphine that helped me through it. Some here managed with paracetamol and ibuprofen alternatively. One more piece of advice on pain relief is if taking opioids please take a laxative or stool softeners and don’t allow yourself to get constipated. Drink loads of fluids during the day. Good luck with the PET scan and let us know how you get on

Hi Mike76 ,

Welcome to the Macmillan online community although I’m really sorry to hear of your recent diagnosis.

I think we all totally understand that feeling you’re describing of being knocked sideways when you hear the word cancer, it’s horrendous & I’m not surprised you found it difficult retaining the information that came after that!

Chemoradiotherapy is the standard treatment for SCC anal cancer & the majority of us here have been through it. My particular treatment regime was a short mitomycin infusion (chemo) on day 1 of treatment then oral capecitabine (chemo tablets) twice daily each day of radiotherapy, radiotherapy was Monday-Friday with weekends off all treatment. Some hospitals/oncologists choose to administer the chemo intravenously on week one & five of treatment but in the Uk it’s more commonplace to have the oral capecitabine throughout. 

The weeks following diagnosis is a bit of a whirlwind of appointments, scans etc. But you’ll find once treatment starts you’ll soon settle into the routine of daily hospital visits & the weeks really do pass quite quickly. 

Regarding concerns surrounding finances & not being able to work, I couldn’t work during treatment & I was on my own with my 15 year old daughter, on advice from my GP I visited a local cancer charity & spoke with their benefits advisor, she advised me to apply for PIP & assisted me in filling in the forms etc., my claim was successful & took away the financial concerns that weighed heavily in the beginning. If you don’t have any local cancer charities close by enquire where your nearest Maggies Centre is, they also advise on benefits & will help you to apply. Failing both of these options if you give the Macmillan Helpline a call then someone will be able to offer some advice. 

Please don’t be afraid to ask if you have any questions were a friendly bunch that have all been where you are now. 

Nicola 

Hello Mike

I am so sorry to hear of your diagnosis, and completely understand your confusion right now.  Finding out you have cancer is one of those heart-stopping moments and such is the shock it is difficult to absorb anything else.  I am really pleased to hear first, that your employers are involved, and secondly that you have a strong network around to help you. 

In the grand scheme of things, it is a very short (but can be very tough) course of treatment but it is remains the most effective way of getting rid of this cancer.  The first few weeks are a whirl of appointments, scans, results, and once all the results are in, the multi-disciplinary team treating you have an MDT meeting to decide on the treatment that will be tailor-made for you.  Once all that is in place and treatment starts, you will feel a lot more in control of what is happening to you, and if you are anything like the rest of us you will be counting off the days.  There are side effects but they are very gradual, more from the third week onwards and then for a couple of weeks afterwards.  At this point I was struck with fatigue and spent a lot of time in bed, the body is trying to repair itself during the treatment and that takes a huge amount of energy.

You have already had some very good advice - borne out of hard-gained experience!  We are always here to give support if needed or if you just want to have a moan.

Please let us know how your scans go.

Irene x

Hi Mike 

Sorry to hear about your diagnosis, you definitely found the right people on here to support you. As I can see your already having lots of advice already I can't add much more than that apart from get advice on benefits as soon as possible. When you normally  work full and then have to navigate the benefits system it's a minefield. 

Where I live there is waiting list both with Macmillan and Maggies. (Approx 4 weeks)  due to staff shortages and high demand. I've been trying to get an appointment since last Tuesday, awaiting ring backs from both. 

We really don't need to have to worry about money as our heads are full of  diagnosis, treatments and our future. 

Jinnie x