When I was first diagnosed back in 2007 most things physical were discussed with me before I started treatment. I say discussed, there was no option for me. I had to have the treatment or I would have died within 6 months. Most of what was mentioned has happened or is starting to happen, so no real surprises, especially having survived for 13 years.
But what did take me by surprise is the toll my disease has taken on me psychologically! Being battered physically for so long, be it cancer or treatment, I became depressed! Something I never thought could happen to me. I felt I could deal with anything, but it seems I am human too. My body chemicals are now in balance and I am enjoying life again. However the emotional issues seem to be rarely discussed. I am therefore delighted to share this wonderful piece by Liz @thesaltiestcow who talks about her own psychological challenges.
“Let’s bring the elephant into the room, the effect of cancer on the mind, the part that rarely gets a mention and isn’t talked about enough. Unfortunately for me I’ve had 2 major cancer episodes in my life 31 years apart, and know fully well just how important it is to look after the mind as well as the body. I spent nearly 30 years neglecting my mind and it has taken over 2 years of oncology psychologist sessions and a lot of hard work, to get to a healthy mindset and I see so clearly now the psychological impact it can have.
It’s the fear of the unknown, whether it be an unknown procedure, scan result, chemo regimen ,side effect and the list goes on .It’s those moments laying on the scanner bed as it does its thing remembering every other time you’ve been there. The times you sit waiting to see the oncologist feeling the anxiety rising, as the direction your life will take, lies in their hands. During the quiet of the night as you lay in the dark feeling all the parts of your body so different now. Catching your reflection in the mirror and seeing the scars, each one attached to a story. They may be able to remove all the physical aspects of having cancer, but the mental side of it changes you forever. How you face your fear is what really matters!
As a 14 year old I ran as far away from it as I could, and I am so thankful that I was a year into my oncology psychology sessions when I had the lung cancer diagnosis. I felt I was equipped with so many more tools to deal with it. I have come out the other side, in the best place mentally my whole life. Yet cancer still managed to sideswipe me with a heavy dose of survivors guilt recently. Which is one of the hardest things to deal with when you are active in the online cancer community.
Survivors guilt is that feeling of why them and not me. That overwhelming feeling of guilt as others deteriorate and you improve. This year has been pretty brutal to us all in that aspect. With Covid happening, the online community has become some people’s only lifeline. We’ve all got to know each other that little bit more, and the support I see on a daily basis is incredible. But it comes with a price and not everyone survives. Last week Sean O’Brien, one of the loveliest and loudest characters of the cancer family died. Although we all knew it was coming I don’t think of us really believed it would happen! The same day I received a call to tell me one of my friends disease has progressed, and I was heartbroken over both.
Later that evening I checked my email to see one from my oncologist to say my chest ct scan was clear. I was over the moon but didn’t want to tell anyone due to the sad news that day. I felt guilty for having such good news when others weren’t receiving the same. It felt so unfair to them yet I knew that they both would be thrilled for me. I still waited till the next day to share my news, just as my respect to them, and felt proud of recognising what I was feeling and sitting with it quietly .
That’s the bit about cancer you don’t hear about and we need to acknowledge it more. By keeping it as the elephant in the room we are only giving it more power! We need more oncology psychologists desperately, as I was lucky enough to only wait a year to see one. Some areas of the UK do not have this service offered at all and that needs to change. If there is one thing I can take out of the last 31 years, it is that the mind is just as important as the body!”
I would like to thank Liz for sharing her own story here. If you have something you would like to share with the community, please don’t hesitate to get in touch. You can either email via the link above or leave a comment below. Stay safe everyone!!
I really relate to that article
I did too Tony! It is probably one of the most overlooked side effects of a cancer diagnosis. Once most of us just hear the word, our lives are changed let alone have the treatment and try and put our lives back together again. If we are lucky enough to be able to? I was a great honour to share Liz’s great piece.
Thank you so much for reading
Through five years of being monitored post-cancer, it wasn’t until I was moved to the Oncology Dept rather than the Gynae / Ante-Natal Dept for my appointments that I became aware there even was an Oncology Psychologist at the hospital – I only found out because I happened to sit down opposite the office door in the waiting room and read the notice! No member of the medical team ever mentioned the service to me, they were purely interested in clinical signs of possible recurrence, nothing more. No holistic approach. At every appointment, there was never any sign of any patient being called into the Oncology Psychologist’s office. The only times I knew there actually was an Oncology Psychologist behind that office door were the two occasions when she returned to the office with 1) her mug and 2) a vase of flowers and simply shut the door behind her. Twice. That was it.
On a different note, thirteen years is an amazing milestone, Chris. I’m so pleased you’re enjoying life again now, even though this has been a very strange year, and a very difficult one for so many. Deb X
Hi Deb, that’s a shocking story, but I can certainly believe it! Back in 2007 when my experiences started it wasn’t mentioned either. I think the hospital only had one senior clinical psychologist. It felt like you should be grateful for having your body fixed up. Not until later years did the trauma that my body had been through, show itself.
It seems better now days but as with everything, very hit and miss. Postcode lottery feel. At least the issues are now recognised with holistic needs assessment etc.
Like all of us Deb I’m getting on with things. It’s not ideal but what choice do we have? As we know, nothing lasts forever. Big love to you all and stay safe, Chris XXX
Thank you so much for reading, I only found out about the oncology psychologist through my consultant who is one in a million and it took a year on the waiting list as an urgent referral. As more and more of us are surviving the need for this resource becomes more important
Like you, I had no idea there was an Oncology Psychologist – but, although I needed help, I could have easily been satisfied to talk to a Clinical Nurse Specialist. Or someone to answer my ‘small’ questions that were simple ones, but important to me. I suspect that the NHS in its drive for cost-cutting, efficiency, etc. has forgotten the old-fashioned nurse, staff nurse or sister who used to gather you up, give you a cup of tea and 15 minutes of common sense talk.
It is good that people like the Cambridges are using their high profile to promote better mental health, but I fear that the NHS is overlooking that so often we just need someone to listen to us and help us get over the elephant in the room, Although an O. Psychologist for everyone would be a good idea, being realistic I would love to have one symathetic shoulder to lean on when trying to sort out what I need to do next.
Thank you so much for reading, that’s a really important point as not everyone needs an oncology psychologist but even just the opportunity to talk about how you feel is so important, just getting those thoughts out and knowing it’s normal
Hi Verite, that is a very important point that you raise here. Not everyone needs the help of a clinical psychologist, just a little time with a CNS or similar. Time seems to be the biggest issue wherever you go these days. I agree with you too, there are many good things we could take from the old style of nursing.
The one positive that I do see is that at least the psychological issues from a cancer diagnosis are now being recognised! Now we need to progress from here.
I hope you are keeping well in these crazy times, Chris XX
Great read and so real. Those scanxiety moments, the treatment and surgery, survivors guilt- it is so real and difficult to navigate.
Thank you for bringing these important journeys to the forefront.
Hi Cheryl, this piece has had an incredible reception. It is always impactful to read about it from someone who has experienced it. Also written in language we can all understand. Most of us experience those emotions regularly I suspect.
Thanks so much for the feedback and I hope all is well in your life XX
Thank you so much for reading, I tried to capture the moments where I felt it the most in my head and to show that there’s a lot that affects us that people don’t realise
Thanks Liz and Chris for sharing your experiences over many years.I was diagnosed with MDS with 2 gene mutations in May 2019.Prior to that I was monitored for an ITP issue for two& half years every 6 weeks checking my platelet count.Surrounded by Macmillan booklets in the waiting room and me feeling knackerd ,numerous 7 hour nosebleeds & severe bruising,thinking deep down about where will this end?
Routine prostate cancer check in Nov ’18 resulted in my consultant wanting to do a biopsy.With my platelets at 20 there was no way.A course of steroids to up them over Dec &Into Jan ’19 did not increase them significantly.It was only then that my Haemo team did a couple of bone marrow biopsies in April and May& MDS diagnosed.
My only cure was a successful BMT/SCT.The life expectancy graph was finished quite abruply.I now understood why all the green booklets in the waiting room.
I was lucky to be put forward to the Transplant team at St James in Leeds and was given the go ahead for a donor search.6 adult donors were lined up but by September’19 all had been ruled out.So they went down the Stem Cell option.
On NYE 2019 I was told they had a 90% match.
A week of Chemo & TBI for a day wiped out my immune system.
January 31st Stem Cell transplant from baby’s umbilical cord blood.
I mentally prepared myself for what happened and was going to happen to me and my faith in the team was unwavering.After some further biopsies in the following months in May 2020 I was told I was 100% disease free with 100% donor blood.Absolurely ecstatic.
As I was weaned off my immunosuppressive drugs and I became stronger I told my uroligist I was now available for my Prostate biopsy.My platelets were 240.
Prostate biopsy Aug & Intermediate stage cancer but localised was the result.
Da Vinci robot prostatectomy to remove Prostate on 20th Oct 2020.
Throughout I have been upbeat and positive about my situation but recently I have had some low days which I’ve only discussed with close family and friends and no one “Professional”.
Liz’s Survivors Guilt has kicked in for me I think especially when I see comments on both MDS & PC online forums.I only heard this term from a friend who is ex military and has been in combat when I told him I was feeling low.
Thanks for bearing with me like you Chris I never expected this feeling.
I used up so much mental energy on my transplant I don’t think I was as prepared for the physical & mental damage the PC has left me with.
But I’m ok and I know I’ll get through this.I have no option but to do so.
I thank any God who is listening that I went for my Prostate check 2 years ago.I think I would either still be being monitored for ITP or I wouldn’t be here.
Hi Colin,
Firstly I would like to thank you for sharing your incredible story with us. I always think my own story takes a lot of beating but unfortunately I am hearing stories like yours daily.
As you may know I have personally been through the transplant process but with a 100% donor match, I was lucky! I am very aware of the complexities of using cord blood too.
But fortunately I didn’t have to follow up with Prostate surgery. I totally get everything you have talked about here Colin. I know many guys who have experienced PC. But not on top of the other issues you have faced. I’m surprised you have the energy to write this piece.
I don’t know if you feel up to it, but I would like to have a chat at some stage. My email link is up in the right hand corner of the site. Please feel free to get in touch if that might suit.
Wishing you the very best for the future, Chris
Hi Colin,
Thank you so much for reading and sharing your story, wow, incredible. To go from such an awful prognosis to being in a good place would mess with anyone’s mind as once you’ve had to face mortality it’s hard to go back from that. I totally understand and I’m glad that my words resonated with you, I’ve found things have been easier for me the more I’ve been open about how I feel but the first few months were hard, it’s hard not to compare and think others are worse off. I wish you many more good results
Liz
Thank you for addressing the psychological challenges that come with a cancer diagnosis. I was not prepared for the anxiety that came with my breast cancer. Even though I had a clear treatment path, there was so much worry going on in my head.
Hi Jen. I don’t think anyone is prepared for the psychological issues that accompany a cancer diagnosis. It is something that stays with many for their lifetime. It is a challenging subject because everyone deals with things differently and of course some better than others. We now know so much about this type of thing now and of course we need more resource. However with Covid coming into the mix we will have to see what the future holds.
Very best to you, Chris
I had horrendous body dismorphology. I hated my stoma, I couldn’t relate to it, I didn’t want it, it was nothing to do with me. Even naming it, didn’t help.
I could understand the need to have my tumour removed, the need for radiotherapy, chemotherapy, but the stoma: no way!
Everyone commended my attitude to my diagnosis, treatment and recovery., but there was this one glitch.
I’m not a vain person, but it disrupted my body image, my psychology, I hated myself, I felt uncomfortable, ugly. But I told no-one how I really felt until my oncologist offered counselling. This helped. My stoma became ‘The Void’. The necessary. I still didn’t like it, but I could live with it.
18 months on, my CEA levels are normal and I’ve had a reversal, and I feel I can move on.
Hi Sue,
Thank you so much for sharing your personal experiences. I believe this sharing helps us all which is why Liz wrote this post originally. I can totally understand everything you have said here and I understand why the stoma felt like one step too far.
I’m delighted to hear that you managed to access some oncology psych services which helped you. I am connected to many people who have stomas etc, and there is a lot more awareness and acceptance these days. Having said that it is by others of course, not necessarily by the people who have them.
It’s great to hear that you feel you are in a position to move on. Everything around cancer needs a lot of getting used to, that’s for sure!
Seasons greetings, Chris
I too hadn’t realised how much of an impact the psychological element had.
Refusing counselling, it wasn’t till I realised I had body dysmorphia, that I took up the offer.
It’s taken a real effort not to relive my experiences of late diagnosis (my own fault) which, when found was at T3. Thankfully I was found to be cancer-free 24 months later, after 2 ops and the full cancer experience.
Hi Sue,
Thanks so much for sharing your own experience, it’s so valuable for other readers. So many don’t realise that the psychological issue can be worse than the cancer and treatment itself. So difficult to prepare yourself as you don’t know how things will affect you as an individual.
Things sound positive now, and hopefully you will be able to move on with your life.
Very best, Chris
Such an excellent article !
My diagnosis was last year in the middle of lockdown, no “help” offered except my treatment itself. I have suffered terribly mentally which I think has also affected my husband & children too. Moved from stage 3 to stage 4 (bowel cancer now in chest, liver and lung ) that I have finally been offered counselling via my local hospice with the clinical psychologist there – although thought I was going to have a panic attack when sat in reception and heard a gentleman who’d come in to collect the belongings of his late father . Not sure if it’s even actually even helping ?
Hi Sue,
Yes, Liz is such a fabulous writer and her passion to help others really comes through.
Very sorry to hear about your diagnosis, particularly the timing of it! I’m sure your family will be suffering with you. It’s very difficult seeing your loved ones going through this and feeling so helpless.
Sounds like a dreadful experience at the hospice. Very challenging all round.
If you feel up to it at any stage Sue I would be happy to have a chat. Just let me know.
Very best to you and your family, Chris